ETHICAL BOUNDARIES AND PUBLIC INTEREST ARGUMENTS WITH REGARD TO

THE DISCLOSURE OF A DECEASED’S HIV STATUS

By

Tafadzwa Ngomah

Student No 17313767

Research project presented in partial fulfillment of the requirements for the

degree of Master of Laws at Stellenbosch University

Supervisor Prof Andra Le Roux-Kemp

December 2014

DECLARATION

By submitting this research paper, I declare that the entirety of the work contained therein is

my own, original work, that I am the authorship owner thereof (unless to the extent explicitly

otherwise stated) and that I have not previously in its entirety or in part submitted it for

obtaining any qualification

Signed by

Tafadzwa Ngomah……………………………………….

On 04/05/2014

ACKNOWLEDGEMENTS

First of all I want to acknowledge with appreciation God Almighty who made writing this

dissertation possible when it seemed impossible. I could not have done this dissertation

without him, in him I discovered the champion in me and I know I can trust in him always.

Many thanks to my father Mr C Ngomah, my mother Mrs A Ngomah, my siblings Tsitsi, Anesu

and Tavonga Ngomah for constantly believing in me, in tough times I was able to endure.

Thank you so much for your prayers and may God Bless you.

I am indebted to my supervisor Prof Andra Le Roux-Kemp, for her unwavering support.

Numerous times I felt like quitting but she never made quitting an option, I look forward to

working with her again in the near future. I am also indebted to the first deputy chairperson

of the African Union, His Excellency RG Mugabe for being a remarkable inspiration. I probably

could not have made it this far if it were not the foundation he laid towards my education.

It would be an err if I do not extend my gratitude to Blessing Jingura , Robbie Karumbidza ,

Morgen Ngoma, the Tambware twins and Mufaro Mukamuri, you stood by me in tough times

and believed in me always. May the Lord continually bless you.

Last and certainly not least, I want to thank Manatsa Fortune Gaka for his generous friendship

throughout, I enjoyed writing this dissertation because he unknowingly offered suggestions to

improve my dissertation, especially in our petty debates. Thank you so much and May God

bless you.

Table of Contents

1.1 INTRODUCTION ............................................................................................................................. 1

1.2 THE DEATH NOTIFICATION FORM ................................................................................................. 7

1.3 RESEARCH QUESTION .................................................................................................................. 11

1.4 HYPOTHESIS ................................................................................................................................. 12

1.5 METHODOLOGY .......................................................................................................................... 12

1.6 SCOPE AND LIMITATION.............................................................................................................. 13

CHAPTER 2: HIV/AIDS CONFIDENTIALITY ISSUES IN DECEASED PATIENTS ........................................... 14

2.1 INTRODUCTION ........................................................................................................................... 14

2.2 THE NATURE OF MEDICAL CONFIDENTIALITY AND THE PRINCIPLES OF BIOETHICS ................... 14

2.2.1 The principle of Patient Autonomy ...................................................................................... 15

2.2.2 Beneficence and Non-Maleficence ...................................................................................... 16

2.2.3 Justice ................................................................................................................................... 17

2.3 MEDICAL CONFIDENTIALITY DILEMMAS WITH REGARD TO DECEASED PATIENTS ..................... 18

2.4 CONCLUDING REMARKS .............................................................................................................. 20

CHAPTER 3: HUMAN RIGHTS AND RIGHTS OF THE DEAD IN HIV/AIDS ISSUES ..................................... 22

3.1 INTRODUCTION ........................................................................................................................... 22

3.2 THEORIES SUPPORTING POST HUMOUS RIGHTS ........................................................................ 22

3.2.1 Interest Theory of Rights ...................................................................................................... 23

3.2.3 Will Theory of Rights ............................................................................................................ 24

3.3 THE INTERPRETATION OF THE THEORIES OF RIGHTS IN THE SOUTH AFRICAN CONTEXT .......... 26

3.4 CONCLUDING REMARKS .............................................................................................................. 29

CHAPTER 4: COMPARETIVE STUDY OF KENYA AND UGANDA .............................................................. 30

4.1 INTRODUCTION ........................................................................................................................... 30

4.2UGANDA ....................................................................................................................................... 31

4.2.1 Death Registration Process .................................................................................................. 32

4.2.2 The Central Role of State Action in the Disclosure of a deceased’s HIV status ................... 34

4.2.3 Proposed Legislative Measures relating to the disclosure of a deceased’s HIV status........ 36

4.3 KENYA .......................................................................................................................................... 39

4.3.1 Death Registration Process in Kenya .................................................................................... 39

4.3.2 Central Government Role and Proposed Legislative Measures ........................................... 41

4.4 COMPARISON OF THE HIV/AIDS LEGISLATION IN KENYA AND UGANDA ................................... 42

4.5 CONCLUDING REMARKS .............................................................................................................. 44

CHAPTER 5: CONCLUSION AND RECOMMENDATIONS ......................................................................... 45

BIBILIOGRAPHY ...................................................................................................................................... 48

1

ETHICAL BOUNDARIES AND PUBLIC INTEREST ARGUMENTS WITH REGARD TO

THE DISCLOSURE OF A DECEASED’S HIV STATUS

1.1 INTRODUCTION

The confidentiality of a person’s HIV/AIDS status has always been controversial, especially on

the African continent where HIV/AIDS is a public health concern.1 According to the Joint

United Nations Programme on HIV/AIDS (UNAIDS), the HIV/AIDS epidemic is “most severe in

Southern Africa and claims at least one million lives annually.”2 And in terms of the World

AIDS Day report of 2011, South Africa has the highest number of people living with HIV/AIDS

worldwide.3 It is also believed that more than two hundred and fifty thousand people died of

AIDS in the year 2008.4

It is partly due to such shocking statistics, reminding us of the severity of the illness and its

effects on the African continent that those diagnosed with this disease have been stigmatised

and ostracised to the extent which they have. “In the absence of social protection, individuals

with HIV are subject to socially imposed suffering.”5 The landmark decisions of Hoffman v

South African Airways6 and Allpass v Mooikloof Estates (Pty) Ltd t/a Mooikloof Equestrian

centre7 are cases in point.

1 Adamson S Muula, Joseph M Mfutso-Bengo’ When Is Public Disclosure of HIV Seropositivity Acceptable?

<http://www.ndr.mw:8080/xmlui/bitstream/handle/123456789/297/When%20is%20public%20disclosure%20of%20HIV%20seropositivity%20acceptable.pdf?sequence= > (accessed 06-07-2012). 2

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘World AIDS Day Report 2011’ <http://www.unaids.org/en/resources/publications/2011/name,63525,en.asp> (accessed 06-07-2012) 3

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘World AIDS Day Report 2011’ <http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2011/jc2216_worldaidsday_report_2011_en.pdf> (accessed 06-07-2012). 4 D Knapp van Bogaert, ‘Common ethical issues related to HIV/AIDS’ (2011) 53 SAFPJ 605.

5 Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘The Role of Name-Based Notification in Public Health

and HIV Surveillance’ <http://www.who.int/hiv/strategic/surveillance/en/unaids_00_28e.pdf?ua=1> (accessed 29-06-2012). 6 [2001] 1 SA 1 *28+ where Ncgobo J contents that “the impact of discrimination on HIV positive people is

devastating and even worse when it occurs in the context of employment. He also opines that discrimination on HIV positive people denies them the right to earn a living and for this reason they enjoy special protection in our law.” 7 *2011+ 2 SA 638 *41+ where Bhoola J quotes Ngcobo J’s dictum in Hoffman v South African Airways.

2

In Hoffman v South African Airways8 the appellant was not offered a position as a cabin

attendant by the respondent because of his HIV status. Despite the appellant being clinically

fit and suitable for employment, the respondent’s employment practice excluded HIV positive

persons from being cabin attendants on medical and operational grounds. The appellant

challenged the constitutionality of the respondent’s employment practice and he submitted

that the respondent’s refusal to employ him constituted unfair discrimination and is a

violation of his constitutional right to equality, human dignity and fair labour practices.

The respondent in turn, argued that its employment policy promoted the health and safety of

its passengers and its competitive capacity.9 In this case the Constitutional Court found that

while legitimate commercial requirements were an important consideration in determining

the employment of an individual, they were not to be used as a measure of stereotype and

prejudice.10

In Allpass v Mooikloof Estates 11 the appellant was interviewed and appointed by an

equestrian centre as a stable yard manager and a horse riding instructor. However, when the

appellant’s employer became aware of his HIV-status, the appellant was dismissed on grounds

that he was severely ill and that he had not disclosed his HIV-status during the employment

interview. The court found the applicant’s dismissal unfair and discriminatory and the

respondent’s reasons for dismissing the appellant as emanating from the general stereotype

and stigma that attach to people living with HIV/AIDS.12

And in yet another South African case, Jansen van Vuuren v Kruger13 the appellate division

held that a medical practitioner in this case did not have a duty to disclose his patient’s HIV-

status to other medical practitioners, despite his insistence that the disclosure was made in a

8 [2001] 1 SA 1.

9 [2001] 1 SA 1 [7].

10 [2001] 1 SA 1[34].

11 [2011] 2 SA 638.

12 [2011] 2 SA 638 [54] where Bhoola J submits that HIV is regarded as a serious illness and all people living with

HIV are regarded as ill persons who are unable to sustain productive work. See also D Knapp van Bogaert, ‘Common ethical issues related to HIV/AIDS (2011)53 SAFPJ 606; where the author opines that culture and religion perceive HIV/AIDS as diseases associated with sin. Generally stereotypes that surround HIV are sin and serious illness. 13

[1993] 4 SA 842.

3

privileged occasion and that it was in the public interest. And, that the said medical

practitioners had no corresponding right to receive such information. 14

While these and numerous other cases have provided us with some guidelines on how and

when it is permissible to disclose the HIV/AIDS-status of a patient or an employee15, it is still

contested whether and under what circumstances a deceased’s HIV-status may be disclosed.

The Declaration of Geneva16 (hereafter the Hippocratic Oath) stipulates that the duty to

respect and uphold medical confidentiality should be preserved even after the patient has

died, and the South African Health Professions Guidelines stipulate that the confidential

information of a deceased may only be disclosed with the written consent of a deceased’s

14

[1993] 4 SA 856 [37]. 15

NM and others v Smith (Freedom of Expression Institute as Amicus Curiae) [2007] 5 SA 250 in this case three names of women living with HIV were published in a book without their consent. The Constitutional Court found this disclosure unconstitutional because it violated the women’s constitutional right to privacy and dignity. This disclosure was an infringement to their right to keep their HIV status confidential. In VRM v Health Professionals Council of South Africa [2003] SA, JOL11944 a patient lodged a complaint with the HPCSA against a medical practitioner who had conducted an HIV test without her consent. The patient also alleged that the practitioner did not disclose her HIV status during consultation and failed to take necessary measures to reduce the risk of mother to child transmission. The HPCSA did not find the practitioner’s conduct improper or disgraceful. The matter was brought before the High Court but was dismissed on the ground that the allegation of irregular and unreasonable conduct remained a mere allegation and was not substantiated. She appealed against the decision and the decision was set aside on disputed facts. The court ordered that the disputed facts to be resolved by means of an enquiry. In Bootes v Eagle Ink Systems Kwazulu-Natal (Pty) Ltd [2008] SA, 291 ILJ 139 LC Bootes was employed by Eagle Ink Systems as a technical sales man. He claimed that he was dismissed because he was HIV positive and his employer argued that he was dismissed on the basis of misconduct. (Bootes disclosed his HIV status when he took ill) the court considered the charges of misconduct and found Mr Bootes guilty of misconduct as charged. Bootes had indeed acted in conflict with the interests of his employer. The court however found Bootes dismissal as an inappropriate sanction for misconduct. It was clear to the court that Bootes’ employer did not want to employ an HIV positive salesman. The court therefore held that the dismissal was unfair and the employer was ordered to compensate Bootes. In Joy Mining Machinery v National Union of Metal Workers of South Africa and Others [2002] SA, 23 ILJ 391SALC Joy Machinery applied to the South African Labour Court for permission to conduct HIV testing among its staff in order to plan an effective HIV and AIDS prevention strategy and evaluate its training and awareness programme. Because the proposed strategy was to be voluntary and anonymous and it was not to be used for discriminatory purposes, the court granted the application. In Irvin and Johnson Ltd v Traler and Line Fishing Union and others [2003] SA, 4 BLLR 379 SALC the South African Labour Court determined that section 7(2) of the Employment Equity Act of 1998, which prohibits medical testing applies to compulsory involuntary testing. The court held that voluntary, anonymous testing in the work place should be encouraged and not impeded. In South African Human Rights Commission v SABC and Another [2003] SA, SABCT the complaint concerned a broadcast disclosing the identity of a minor as well as HIV status, without masking the minor’s face of or digitally fragmenting his image. The Broadcasting Complaints Tribunal of South Africa held that, since there was a compelling societal interest that the AIDS pandemic be communicated to the public, and since the parents had granted their permission the broadcasters had not contravened the code. 16

Declaration of Geneva, World Medical Association (adopted 1948, Amended 1968, 1983).

4

next of kin or with the written consent of the executor of the deceased’s will.17 (The only

exceptions hereto being where the confidential medical information is in the public interest or

where a court or statute requires such a disclosure.)18

The guidelines furthermore indicate that the yardstick of disclosure is determined by the

nature of the confidential information and it is also dependent upon the particular

circumstances of each and every case.19 In situations where the information is public

knowledge, for example, disclosures are justified.20 And in situations where the information is

not public knowledge, medical practitioners have the discretion to disclose or not to disclose

the information.21 This discretion is dependent on the intended use of the information and

practitioners should consider whether the disclosure is beneficial to the deceased’s family or

partner.

Practitioners should consider, for example, whether or not this information would cause

distress to the deceased’s partner or family.22 It may therefore seem as though medical

practitioners should not disclose a deceased’s HIV-status on a death notification form because

of the possible harm that may result to the deceased’s partner or family. Especially since

there is a real risk that the deceased’s family may suffer discrimination if such information

should become known to the community.23

17

Health Professions Council of South Africa, Confidentiality: Protecting and Providing Information (2nd

edn Pretoria South Africa 2007) 2 [3.2.6]. 18

Health Professions Council of South Africa, Confidentiality :Protecting and Providing Information ( 2nd

edn Pretoria South Africa 2007) 2-3; see also David McQuoid- Manson, ‘Disclosing the HIV status of deceased patients- ethical and legal implications’ (2007) 10 SAMJ 920. 19

Health Professions Council of South Africa, Confidentiality: Protecting and Providing Information (2nd

edn Pretoria South Africa 2007) [9.5.1]. 20

Health Professions Council of South Africa, Confidentiality: Protecting and Providing Information (2nd

edn Pretoria South Africa 2007) [9.5.1]. 21

Health Professions Council of South Africa, Confidentiality: Protecting and Providing Information (2nd

edn Pretoria South Africa 2007) 10 [9.5.1]. 22

Health Professions Council of South Africa, Confidentiality: Protecting and Providing Information (2nd

edn Pretoria South Africa 2007) 10 [9.5.1]. 23

Adamson Muula, Joseph Mfutso-Bengo, ‘When is Public Disclosure of HIV Seropositivity Acceptable? <http://www.ndr.mw:8080/xmlui/bitstream/handle/123456789/297/When%20is%20public%20disclosure%20of%20HIV%20seropositivity%20acceptable.pdf?sequence=> (accessed 06-07-2012).

5

But the law does not accord special protection to deceased persons when it comes to issues

of confidentiality.24 It instead “imposes a positive duty on medical practitioners to disclose the

medical cause of a patient’s death.”25 With regard to death certificates specifically, the law

requires medical practitioners to complete these official documents honestly and fully; a

deceased’s HIV/AIDS-status should not be seen as an exception. McQuoid-Manson also shares

the same opinion as he declares “the law imposes a positive duty on a medical practitioner to

disclose the medical cause of death.”26 Failure to disclose this information on the death

notification therefore constitutes a breach of a statutory duty as section 31 of the Births and

Deaths Registration Act 51 of 1992 also provides “that any person who fails to furnish

information required by the Act shall be guilty of an offence.”27

A further reason why posthumous HIV-status disclosure is so problematic is the fact that AIDS

is not a notifiable disease in South Africa. A notifiable disease is “a disease that by law must be

reported to the public authority, or other designated authority in the pertinent jurisdiction

where the diagnosis is made.”28 In South Africa, the Minister of Health has the discretion to

declare a disease notifiable, communicable or non-communicable. 29 This discretion is

dependent on the Minister’s consultation with the National Health Council.30 Where a disease

has been declared communicable or notifiable, the Minister has the power in terms of the

legislation to force those infected to undergo treatment; they may also be detained if

necessary.31

24

David McQuoid-Manson, ‘Disclosing the HIV status of deceased patients-ethical and legal implications’ (2007) 10 SAMJ 920. 25

See section 31 of the Births and Deaths Registration Act 51 of 1992; see also David McQuoid-Manson, ‘Disclosing the HIV status of deceased persons – ethical and legal implications’ (2007) 10 SAMJ 920. 26

David McQuoid-Manson, ‘Disclosing the HIV status of deceased persons- ethical and legal implications’ (2007) 10 SAMJ 920. 27

See section 31 of the Births and Deaths Registration Act 51 of 1992. 28

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘Opening up the HIV/AIDS epidemic’ <http://www.who.int/ethics/topics/opening_up_ethics_and_disclosure_en_2000.pdf> (accessed 29-06-2012). 29

See section 90 of the National Health Act 61 of 2003; see also section 1 of the Act where a communicable disease is defined as a disease resulting from an infection due to pathogenic agents or toxins generated by the infection, following the direct transmission of agents from the source to the host. A non- communicable disease is also defined as a disease or health condition that cannot be contracted from another person, animal or directly from the environment. 30

See section 90(1) of the National Health Act 61 of 2003. 31

See sections 90, 91and 92 of the National Health Act 61 of 2003; see also B Greene, Understanding Medical Law (OUP, Oxford 2005) 97.

6

There are many arguments for and against classifying AIDS as a notifiable disease. Some argue

that by classifying AIDS as a notifiable disease health officials would be given an accurate

epidemiological picture of the epidemic threat. 32 It is furthermore suggested that by

proclaiming HIV/AIDS to be a notifiable disease, the mind-set of stigmatisation can be

changed and AIDS related illnesses can also be recorded and treated in a more constructive

manner.33 Yet, there are those who say that “AIDS notification would not provide an accurate

picture of the current epidemic of HIV infection and the preferred strategy in industrialised

nations would not work in South Africa.”34

Human rights and AIDS activists also argue that AIDS notification is unconstitutional because it

infringes on people’s constitutional rights to privacy and dignity.35 Greene postulates that

people would be reluctant to go for treatment if AIDS is made a notifiable disease.36 Many

countries including England and Thailand have therefore decided against making HIV/AIDS a

notifiable disease.37 In Thailand, AIDS is not notifiable since notification is seen as ineffective

and unnecessary, especially in systems that do not facilitate treatment of HIV/AIDS.38 In Cuba

32

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘ The Role of Name-Based Notification in Public Health and HIV Surveillance’ http://www.who.int/hiv/strategic/surveillance/en/unaids_00_28e.pdf?ua=1 (accessed 29-06-2012); see also Dr A Grimwood, Z Achmat , K Pillay, ‘ Health Portfolio Committee : HIV/AIDS Notifiability Briefing’ <http://www.pmg.org.za/docs/2003/minutes/FOUND%20FILES/991012pchealth.htm> (accessed 31-08-2012). 33

Dr M Chopra, J E Lawn, Prof D Sanders, P Barron, Lancet Health Series South Africa, Achieving the health Millennium Development Goals for South Africa : Challenges and Priorities’ <http://www.workinfo.com/free/sub_for_legres/data/991012pchealth.htm> (accessed 31-08-2012); Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘ Opening up the HIV/AIDS epidemic’ <http://www.who.int/ethics/topics/opening_up_ethics_and_disclosure_en_2000.pdf> (accessed 29-06-2012) it is also suggested that if AIDS becomes a notifiable disease in South Africa , South Africa could be on track for the Millennium Development Goals since current health problems are rooted in distinctive features of South African Colonial and apartheid history that divided citizens according to race and gender. 34

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘The Role of Name-Based Notification in Public Health and HIV Surveillance’ < http://www.who.int/hiv/strategic/surveillance/pubunaids0028/en> (accessed 29-06-2012). 35

SAPA, ‘Health Systems Trust: SA Postpones for Making HIV/AIDS a Notifiable Disease’ Health Systems Trust (South Africa 2004) <http://www.hst.org.za/news/south-africa-postpones-plans-making-hivaids-notifiable-disease> (accessed 31-08-2012). 36

B Greene, Understanding Medical Law (OUP, Oxford 2005) 97. 37

B Greene, Understanding Medical Law (OUP, Oxford 2005) 97; see also Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘The Role of Name-Based Notification in Public Health and HIV Surveillance’ <http://www.who.int/hiv/strategic/surveillance/en/unaids_00_28e.pdf?ua=1accessed 29-06-2012). 38

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘The Role of Name-Based Notification in Public Health and HIV Surveillance’ <http://www.who.int/hiv/strategic/surveillance/en/unaids_00_28e.pdf?ua=1> (accessed 29-06-2012).

7

and in Australia HIV/AIDS is notifiable.39 In Cuba, patients suffering from HIV/AIDS are

quarantined in a sanatorium for eight weeks and during this period they learn about HIV/AIDS

transmission, safe sex practices and antiretroviral treatment. 40

The primary objective of this research paper is to outline the ethical boundaries and discuss

public interest arguments for the disclosure of a deceased’s HIV-status in the same manner in

which other diseases might be disclosed. This research paper will consider current disclosure

practices with regard to a deceased’s HIV-status and will also highlight the moral and ethical

dilemmas medical practitioners encounter when it comes to disclosing the HIV-status of a

deceased. Public interest arguments that support the disclosure of a deceased’s HIV status

will also be taken into consideration.

1.2 THE DEATH NOTIFICATION FORM

A death notification form is often incorrectly referred to as a death certificate and is the main

source of mortality and disease statistics in South Africa.41 It not only contains important

information with regard to conditions resulting in a person’s death but it also influences

health expenditure.42 While the primary purpose of a death notification form is to ensure that

39

In respect of Cuba see David Spencer, ‘Medical Ethics and the Politics of the South African HIV/AIDS Epidemic’ (2006)7 (2) SAJHIVMED 51; though stated in terms quarantine measures. In respect of notifiability in Cuba see C Manuel, ‘The ethical approach to AIDS’ (1990)16 JME17. In the case of Australia see Northern Territory Government, ‘Notifiable diseases for medical practitioners in the NT’ < http://www.health.nt.gov.au/Centre_for_Disease_Control/Notifiable_Diseases/index.aspx > (accessed 10-09-2014). 40

Sarah Z Hoffman, ‘HIV/AIDS in Cuba: A Model for care or An Ethical Dilemma?’ <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2688320/> (accessed 10-09-2013) here it is stated that, as soon as HIV/AIDS reached Cuba, the Cuban government implemented a national policy which was aimed at controlling the spread of the disease. The government introduced compulsory testing for HIV and all those who were found to be positive were placed in a quarantine called a sanatorium. In the sanatorium sufferers were taught about HIV/AIDS transmission and safe practices amongst many others. Medical facilities and Accommodation and Food facilities were provided in these sanatoriums. Around 1998 the Cuban government made quarantine policies flexible, sufferers are quarantined for eight weeks only and after eight weeks they have the discretion to stay in the sanatorium or leave the sanatorium. 41

K Joyner (ed), Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 138-139; see also Flanagan, ‘ Stats SA in bid to get accurate data on deaths : Information vital for health plans, policies’ Independent (Pretoria 14 January 2006) <http://www.iol.co.za/the-star/stats-sa-in-bid-to-get-accurate-data-on-deaths-1.1117346#UzQInsufxpQ> (accessed 06-07-2012) where she also emphasizes the fact that death notification forms are the only source of data on cause of death information and it is absolutely necessary to have information as accurate as possible. 42

K Joyner (ed), Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 139; see also Flanagan, ‘Stats SA in bid to get accurate data on deaths: Information vital for health plans, policies’ Independent (Pretoria 14 January 2006) <http://www.iol.co.za/the-star/stats-sa-in-bid-to-get-accurate-data-on-deaths-1.1117346#UzQInsufxpQ> (accessed 06-07-2012).

8

all deaths are registered properly and that this information is also tabled at the Department of

Home Affairs, it also contains important information and statistics that can be used to redirect

health resources and expenditure.43 It is therefore of great importance that death notification

forms are completed in the correct manner and contain accurate and comprehensive data.44

The BI-1663 form, which is the current death notification form, consists of different sections,

each requiring specific information.45 There are two sections in the BI-1663 form. In the first

section, the cause of death must be entered in two parts on the document.46 Part one records

a sequence of conditions, consists of four lines beginning with the immediate cause of death,

followed by its condition, a subsequent condition and then an underlying cause of death. And

in part two, other significant conditions contributing to the cause of death must be

completed. Especially important is that a clear demarcation is made between, and sufficient

information is provided on the immediate cause of death, the underlying cause of death, and

the mechanism of death and the intermediate cause of death.47

The underlying cause of death refers to the disease or condition that brought about the

sequence of events that led to a person’s death.48 If a person died due to cryptoccal

meningitis which came about due to HIV, then HIV would be an underlying cause.49 The

terminal or immediate cause of death is the final disease, injury or complication that caused

the death directly.50 The intermediate cause of death, on the other hand, usually causes a

terminal cause of death which results from an underlying cause.51 There can be more than

one intermediate cause of death.52 If cryptoccal meningitis came about as a result of AIDS and

AIDS as a result of HIV, AIDS is the intermediate cause of death. The mechanism of death

43

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 139 a death notification form also contributes to the function of the Department of Home Affairs through evaluation and supervision of health, population ,comparison of health across regions and informing decisions on health policy and strategy. 44

Flanagan, ‘Stats SA in bid to get accurate data on deaths: Information vital for health plans, policies <http://www.iol.co.za/the-star/stats-sa-in-bid-to-get-accurate-data-on-deaths-1.1117346#UzQInsufxpQ>(accessed 06-07-2012). 45

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 139; see also David McQuoid-Manson and Mohammed Dada, A-Z of Medical Law (Juta& Co Ltd, Cape Town 2010) 130-131. 46

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 47

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 139-140. 48

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 49

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 50

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 51

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 141. 52

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 141.

9

describes the physiological disturbance at the time of death, for example acidosis.53 The

manner of death can be natural, homicide, suicide or accident.54

The death notification form (BI-1663 form) must be completed in a black pen and in duplicate

using clear handwriting. This is important since the nosologists55 have limited medical

training.56 On the first page, the medical practitioner must indicate whether the cause of

death is natural or unnatural.57 There is no official definition for a natural death, but it is

generally accepted that deaths that result from diseases or injuries which are not caused by

another person’s act or omission are natural.58

Statutory regulations now provide for the legal definition of unnatural deaths. 59 The

regulations recently published under the National Health Act, consider deaths due to

traumatic causes,60 suspicious or unexplained deaths, as well as deaths related to anaesthesia

as unnatural deaths.61 Where the cause of death is unnatural, a forensic pathologist is

contacted and a post mortem examination is carried out.62 The pathologist will complete the

death notification form and in the case of a natural death a medical practitioner completes a

death notification form.63 Page one of the BI-1663 form has information on the registration of

death by the Department of Home Affairs and information on the issuing of a burial order.64

53

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 141. 54

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 141. 55

The administrators who usually enter and classify the cause of death information. 56

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 57

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 58

See section 56 of the Health Professions Act 1974; see also David McQuoid-Manson and Mohammed Dada, A-Z of Medical Law (Juta& Co Ltd, Cape Town 2011) 134. 59

See section 1 of the 2005 Gazetted Regulations Regarding the Rendering of Forensic Pathology Service in the National Health Act 61 of 2003; see also Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2011). 60

See section 1 of the 2005 Gazette Regulations Regarding the Rendering of Forensic Pathology Service in the National Health Act 61 of 2003; see also K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2011) 128. 61

Section 1 of the 2005 Gazette Regulations Regarding the Rendering of Forensic Pathology Service in the National Health Act 61 of 2003; see also K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2011) 128. 62

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 63

See section 15 (3) of the Births and Deaths Registration Act 51 of 1992; see also section 2 (1) of the Inquests Act 58 of 1959; Also see section 15(1) (a) of the 2012 Draft Regulations of Births and Deaths Registration Act 51 of 1992. 64

A Dhai and others, ‘Confidentiality – A Dying Wish?’(2001)91 SAMJ 124.

10

The last page of the BI-1663 form contains confidential information which may only be

accessed by the Department of Home Affairs and should be sealed by the person completing

the form.65 The nature of information required on this second page includes demographic

details such as the name and identity number of the deceased and the medical cause of death

information which is required for medico-legal purposes.66

Once the BI-1663 form has been completed “it should be handed [over] to the relative of the

deceased or to the funeral undertaker who will register the death at the Regional Home

Affairs office.”67 Perhaps the reason why medical practitioners have therefore been reluctant

to disclose a deceased’s HIV-status is because these forms are handed over to a third party

and sensitive and personal information of the deceased may become known. However, third

parties only have access to confidential information if the form is not sealed. Once these

documents have been processed by the Home Affairs Office, a burial order is issued and the

information is forwarded to Statistics South Africa where the relevant data is collected and

analysis is done.”68

It is important to note however, that the BI-1663 form is currently in the process of being

replaced by the DHA-1663 form. 69 The administrative nature of the BI-1663 form has been

cited as the primary reason why a new form is required, as it is argued that the BI-1663 form

is not clear on the responsibility of medical practitioners to transfer the deceased’s

confidential information to the Department of Home Affairs.70

Confusion is said to arise, for example, from the fact that an undertaker is involved in the

process of death notification and concerns have therefore been raised with regard to the

confidentiality of the deceased’s personal and demographic information. 71 A further

justification to the amendment of the current BI-1663 form is to achieve more accurate

65

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 66

A Dhai and others, ‘Confidentiality- A Dying Wish?’ (2001)91 SAMJ 124. 67

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 68

K Joyner, (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 69

David McQuoid-Manson and Mohammed Dada, A-Z of Medical Law (Juta& Co Ltd, Cape Town 2011) 131. 70

DM Akinmusi, LD Molosi, ‘ Low rate reporting of confirmed AIDS-related deaths using the BI-1663forms by private practitioners in the Mafikeng , North West Province’ (2008) 23 SAJEI 21. 71

A Dhai and others, ‘Confidentiality – A Dying Wish?’ (2001) 91 SAMJ 124 where it is opined that the case of Jansen van Vuuren v Krugger which concerns an individual’s right to privacy regarding his or her HIV status , has given rise to concerns about confidentiality violations caused by the BI-1663 form.

11

mortality statistics in South Africa 72 and to clarify the contradictions between the

requirements set by the Department of Home Affairs and those of the South African Medical

Association.73

The BI-1663 form and the proposed DHA-1663 form are noticeably different. The DHA-1663

form comprises of three pages in part A; and one page in part B; the latter is similar to page

two of the BI-1663 form.74 Page one of the DHA-1663 form consists of information on the

personal particulars of the deceased and the information on how the deceased was

identified.75 Page one is completed by the medical practitioner or the mid-wife in respect of

still births.76

Page two is completed by the medical practitioner in cases of natural deaths, the mid-wife in

respect of stillbirths and a pathologist if the death was unnatural.77 The second page requires

information on how the deceased was identified, as well as information on the deceased’s

next of kin.78 The third page is completed by an authorised undertaker and contains

information on the funeral parlour responsible for the body, the authorised representative of

the undertaker, as well as information on the person who collected the body.79

1.3 RESEARCH QUESTION

Is it ethical for a medical practitioner to disclose a deceased’s HIV-status as an underlying

cause of death in a death notification form?

72

DM Akinmusi, LD Molosi, ‘ Low rate reporting of confirmed AIDS-related deaths using BI-1663 forms by private practitioners in the Mafikeng. North West Province’ (2008) 23 SAJEI 21 though this was said in respect of the BI-1663 this could apply to the DHA-1663 form since Statistics SA does not have accurate information about deaths resulting from HIV/AIDS. 73

DM Akinmusi, LD Molosi, ‘Low rate reporting of confirmed AIDS-related deaths using BI-1663forms by private practitioners in the Mafikeng North West Province’ (2008) 23 SAJEI 21 the contradictions relate to death notification involving the undertaker. The South African Medical Association (SAMA) regards the registration of the cause of death as the responsibility of the medical practitioner while the Home Affairs Department (DOHA) allows the next of kin and undertaker to play a role. An analysis of the DHA-1663 form reveals that both SAMA and DOHA’s requirements have been incorporated. 74

David McQuoid-Manson and Mohammed Dada, A- Z of Medical Law (Juta& Co Ltd, Cape Town 2011) 131. 75

See Annexure 14 of the 2012 Regulations on the Births and Deaths Registration Act of 1992. 76

See Annexure 14 of the 2012 Regulations on the Births and Deaths Registration Act of 1992. 77

See Annexure 15 of the 2012 Regulations on the Births and Deaths Registration Act of 1992. 78

See Annexure 15 of the 2012 Regulations on the Births and Deaths Registration Act of 1992. 79

See Annexure 15 – 16 of the 2012 Regulations on the Births and Deaths Registration Act of 1992; see also David McQuoid-Manson and Mohammed Dada, A- Z of Medical Law (Juta& Co Ltd, Cape Town 2011) 131.

12

1.4 HYPOTHESIS

In South Africa the law does not accord protection to the confidentiality of

deceased persons and this includes information about their HIV-status.

It is unlawful for a medical practitioner not to make reference to HIV/AIDS as an

underlying cause of death on a death notification form where it is indeed the case.

1.5 METHODOLOGY

This study will primarily involve a literature survey of all relevant legislation, policy documents

and case law dealing with the disclosure of a deceased person’s HIV/AIDS-status on a death

notification form in South Africa. Reference will be made to other jurisdictions where

relevant and a comparative study of relevant legislation, policy documents and case law in

Kenya and Uganda will also be discussed in full. The situation in Kenya and Uganda is relevant

for this paper as these two African countries have been particularly successful in combating

the spread of HIV/AIDS.

Kenya declared HIV a national disaster and its prevalence rate has since lowered

considerably.80 And Uganda is hailed as the African country that was most successful in

controlling the HIV/AIDS epidemic. The Uganda HIV/AIDS Prevention and Control Bill

moreover contains provisions relating to a deceased’s HIV-status and are of particular

relevance to this research paper.

The study is divided into five chapters including this introductory chapter. Chapter Two of this

study will provide an overview of the main bio-ethical principles with regard to medical

confidentiality. Chapter Three discusses the public interest arguments and human rights

arguments that have been advanced for and against disclosing a deceased’s HIV-status.

Chapter Four is an appraisal of the HIV/AIDS policies in Uganda, South Africa and Kenya. This

chapter will clarify whether HIV/AIDS disclosure should be different in the context of

deceased patients. And, Chapter Five is the concluding chapter and it will outline guidelines

and recommendations of how to complete a death notification form and better manage the

disclosure of a deceased’s HIV/AIDS-status.

80

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘The Kenya AIDS epidemic update 2011’ <http://www.unaids.org/en/dataanalysis/knowyourresponse/countryprogressreports/2012countries/ce_KE_Narrative_Report.pdf> (accessed 06-07-2012). HIV prevalence has declined by twenty eight per cent.

13

1.6 SCOPE AND LIMITATION

This paper will not provide a comprehensive overview of HIV/AIDS and confidentiality in

general. This study is limited to disclosure in a death notification form.

One of the reasons why this research is limited to disclosure on a death notification form is

because it is an important source of mortality- and disease data and statistics in South

Africa.81

81

K Joyner, (ed), Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2011) 139.

14

CHAPTER 2: HIV/AIDS CONFIDENTIALITY ISSUES IN DECEASED PATIENTS

2.1 INTRODUCTION

Medical confidentiality is one of the cornerstones of professional practice and it “gives rise to

a duty on the part of the confidant not to make an unauthorised disclosure of information.”82

Such preservation of patient confidentiality is not only a legal and an ethical requirement in

medical practice, but also ensures and contributes to effective medical treatment and positive

health outcomes. In South Africa, section 14 of the National Health Act 61 of 2003 provides

that all information concerning a patient should be held in confidence and this includes their

health status, as well as their treatment or information about their stay in a health

establishment. The high regard that is placed on the confidentiality of medical information is

also echoed in section 14 (2) of the Promotion of Access to Information Act 2 of 2002, where a

patient’s confidential information may only be disclosed when the patient has consented,

when the law requires disclosure of information and where non-disclosure of information

leads to a serious threat in public health.83

In this Chapter the difficult interplay between the four principles of bioethics underpinning

medical confidentiality and the public disclosure of a deceased’s HIV-status in a death

notification form will be considered. The central focus of this chapter is the concern of

medical practitioners for the potential stigma and discrimination that may result from the

disclosure of a deceased’s HIV-status, and the guidance offered by the Health Professionals

Council of South Africa in this regard.

2.2 THE NATURE OF MEDICAL CONFIDENTIALITY AND THE PRINCIPLES OF BIOETHICS

The four foundational principles of bioethics are patient autonomy, beneficence, non-

maleficence and justice.84 These principles not only, “manifest the concern to protect the

82

Paul Mae, ‘Medical Confidentiality and the Public Disclosure of HIV status’ (2004) 8 JSLP 158. 83

Section 14(2) of the National Health Act 61 of 2003. 84

UKCEN (Clinical Ethics Network), ‘Introduction to Ethical Considerations’ http://www.ukcen.net/uploads/docs/ethical_issues/confidentiality.pdf (accessed 09-09-2012).

15

person and value the development of an individual”, 85 but also serve as guidelines in clinical

medicine.86 The four principles of bioethics are not absolute or hierarchical,87 but rather

cover most bioethical concerns and commonly shared moral principles despite a person’s

ethical, political, religious or cultural stance.88

2.2.1 The principle of Patient Autonomy

Patient autonomy is the most important of the four principles89 because all the other ethical

principles are derived from it.90 Patient autonomy is a moral obligation with two ethical

convictions: 91 , The first protects those with diminished autonomy and the second

acknowledges all patients’ autonomy. An autonomous person is “an individual capable of

deliberation about personal goals, and capable of acting under the direction of such

deliberation.”92 Persons with diminished autonomy are persons who do not have the ability to

make decisions for themselves, 93 for example mentally incapable persons, minors and

patients in a coma amongst others.

In Kantian terms, patient autonomy involves treating others as ends and never as means.94 In

other words, patients should be treated with respect and they should be given an opportunity

to control their lives.95 Patient autonomy also means that patients’ decisions must be

informed, independent and respected.96 Patients should decide who gets access to their

85

Jacob Dahl Rendtorff, ‘Basic Principles in Bioethics and Bio law’ <http://www.bu.edu/wcp/Papers/Bioe/BioeRend.htm> (accessed 09-09-2013). 86

DFC Tsai ‘The bioethical principles and Confucicus’moral philosophy’ (2005)31JME 160. See, R Gillion, Ethics needs principles-four can encompass the rest for autonomy should be “first among equals” (2003) 29 JME 159-160. See also, Thomas R McCormick, ‘The place of Principles in Bioethics’ <https://depts.washington.edu/bioethx/tools/princpl.html> (accessed 05-06-2014). 87

Thomas R McCormick, ‘The Place of Principles in Bioethics’ <https://depts.washington.edu/bioethx/tools/princpl.html> (accessed 05-06-2014). 88

DFC Tsai, ‘The bioethical principles and Confucicus’moral philosophy’ (2005) 31 JME 160-161. 89

David McQuoid-Manson, ‘Michael Jackson and the limits of patient autonomy’ (2012)5 SAJBL 12. 90

Dana J Lawrence, The Four Principles of Biomedical Ethics: A Foundation for current Bioethical Debate’ (2007) 14 JCH 35 . 91

Mohammed Dada, David McQuoid-Manson, Introduction to Medico-Legal Practice (Butterworths, Durban 2001) 35. 92

Mohammed Dada, David McQuoid-Manson, Introduction to Medico-Legal Practice (Butterworths, Durban 2001) 36. 93

David McQuoid- Manson, Mohammed Dada, A-Z of Medical Law (Juta& Co Ltd, Cape Town 2011) 32. 94

R Gillion, ‘Medical Ethics: Four principles and attention to scope’ (1994) 309BMJ 2. 95

Mohammed Dada, David McQuoid-Manson, Introduction to Medico-Legal Practice (Butterworths, Durban 2001) 36. 96

David McQuoid-Manson, ‘Michael Jackson and the limits of patient autonomy’ (2012)5 SAJBL 13.

16

information97 and they should be capable of making their decisions without physical or

psychological influences.98 Medical confidentiality is derived from patient autonomy and

health care practitioners explicitly or implicitly promise to keep the information that is

confided to them.99

2.2.2 Beneficence and Non-Maleficence

Beneficence refers to the active promotion of goodness, kindness and charity.100 Medical

practitioners have a responsibility to provide beneficial treatment and minimise harm.101

Medical practitioners minimise harm through two principles which are positive beneficence

and utility.102 Positive beneficence requires medical practitioners to weigh benefits and

deficits.103 Benefit is not only provided when a patient’s decision is respected but it is also

provided where there is an attempt to secure the patient’s well-being.104

In matters of confidentiality, especially those that concern the HIV-status of a patient, a

patient’s well-being is secure if the information is not divulged to a third party. Yet where the

third party is in danger of contracting HIV, the principle of utility prevails. In such situations

the medical practitioner has to weigh whether it is in the patient’s best interest to disclose

his/her HIV-status. It usually benefits the third party, if they are encouraged to go for an HIV

test.105

97

UKCEN (Clinical Ethics Network), ‘Introduction to Ethical Considerations’ http://www.ukcen.net/uploads/docs/ethical_issues/confidentiality.pdf> (accessed 09-09-2012). 98

David McQuoid-Manson, ‘Michael Jackson and the limits of patient autonomy’ (2012) 5(1) SAJBL 13. 99

R Gillion, ‘Medical Ethics: Four principles and attention to scope’ (1994)309BMJ 2. 100

Keymanthri Moodley, Medical Ethics, Law and Human Rights: A South African Perspective (Van Schaik, 2011) 57. 101

Keymanthri Moodley, Medical Ethics, Law and Human Rights: A South African Perspective (Van Schaik, 2011) 57. 102

Dana J Lawrence, ‘The Four Principles of Biomedical Ethics: A Foundation of current Bioethical Debate’ (2007) 14 JCH 35. 103

Dana J Lawrence, ‘The Four Principles of Biomedical Ethics: A Foundation of current Bioethical Debate’ (2007) 14 JCH 35. 104

Mohammed Dada, David McQuoid-Manson, Introduction to Medico-Legal Practice (Butterworths, Durban 2001) 36. 105

David McQuoid-Manson, ‘Disclosing the HIV status of deceased persons- ethical and legal implications’ (2007)10 SAMJ 922. Though said in respect of deceased patients, ethical rules apply to both deceased and live patients. See also Rule 10 Health Professions Council of South Africa, Guidance for Good Practice in Health Professions: Ethical Guidelines for Good Practice with regard to HIV (Booklet 8, Pretoria South Africa).

17

Non-maleficence is the negative counterpart of beneficence.106 And the principle requires

medical practitioners not to deliberately harm patients; instead they should aim at producing

net benefit over harm.107 Nevertheless, it is not always easy to determine where harm begins

and where benefit ends.108 In circumstances involving termination of pregnancy harm and

beneficence occur simultaneously.109

2.2.3 Justice

The ethical principle of justice is “often regarded as being synonymous with fairness.”110

Justice is the moral obligation to act on the fair adjudication between competing claims.111

Situations that involve blood transfusions where the patient is a member of the Jehovah’s

Witness church is an example. In such situations the principle of non-maleficence conflicts

with the principle of beneficence. The medical practitioner in such instances will be of the

opinion that it is to the benefit of the patient to get a blood transfusion, while the patient is of

the opinion that it is morally unacceptable to receive blood by way of a transfusion. The

conflict between these two principles emanates from the morals of the patient, especially if

the patient thinks his/her beliefs should prevail.

In such instances the medical practitioner has the obligation according to the principle of

justice to determine which principle has priority.112 The principle of justice is subdivided in

three categories; distributive justice, rights based justice and legal based justice. Distributive

justice is about fair distribution of scarce resources, rights based justice is about respecting

people’s rights and legal based justice is about morally acceptable law.113

106

Dana J Lawrence. ‘The Four Principles of Biomedical Ethics: A Foundation of current Bioethical Debate’ (2007) 14 JCH 36. 107

R Gillion, ‘Four principles and attention to scope’ (1994)309BMJ 2; see also .Mohammed Dada, David McQuoid-Manson, Introduction to Medico-Legal Practice (Butterworths, Durban 2001) 37. 108

Keymanthri Moodley, Medical Ethics, Law and Human Rights: A South African Perspective (Van Schaik 2011) 63. 109

Keymanthri Moodley, Medical Ethics, Law and Human Rights: A South African Perspective (Van Schaik 2011) 63. The rights of the mother conflict unavoidably with those of the foetus. 110

R Gillion, ‘Four principles and attention to scope’ (1994)309BMJ 2. 111

R Gillion, ‘Four principles and attention to scope’ (1994)309BMJ 2. 112

Mohammed Dada, David McQuoid-Manson, Introduction to Medico-Legal Practice (Butterworths, Durban 2001) 37. 113

R Gillion, ‘Four principles and attention to scope’ (1994)309BMJ 2.

18

With regard to confidentiality, medical practitioners must make the decision to disclose

information about a patient after an examination of the three categories of justice. In

situations where a medical practitioner intends to disclose a patient’s HIV-status to the

patient’s sexual partner, the medical practitioner would have to consider the patient’s right to

confidentiality, the harm that may result to the patient’s partner as well as the harm that may

result to the patient. The possible benefit to the patient if his/her status is disclosed is also

considered. And, the medical practitioner should also consider whether the disclosure is

lawful or unlawful.114

Yet it is not an inconceivable fact that the principles from which medical confidentiality is

derived can be in conflict with one another.115 These principles give guidance in medical

dilemmas but they also offer rival approaches in resolving medical disputes.116 When making

medical decisions relating to the confidential information of a patient, these principles must

be taken into consideration with due regard to the fact that the duty of confidentiality is

neither absolute nor relative.117

2.3 MEDICAL CONFIDENTIALITY DILEMMAS WITH REGARD TO DECEASED PATIENTS

As mentioned earlier, medical confidentiality is not only accorded to patients with legal

personality but it is also a duty that is preserved even after the patient has died.118 In issues

relating to HIV/AIDS, medical practitioners often find themselves in a dilemma especially

when completing the current death notification form which is the BI-1663 form.119 Medical

practitioners are often faced with the question whether disclosing a deceased’s HIV-status in

a death notification form is contrary to the principles of autonomy, beneficence, non-

maleficence and justice.120

114

David McQuoid- Manson, Mohammed Dada, A-Z of Medical Law (Juta& Co Ltd, Cape Town 2011) 37. 115

Mohammed Dada, David McQuoid-Manson, Introduction to Medico-Legal Practice (Butterworths, Durban 2001) 37. 116

Jonathan Glover, ‘International Congress on Medical Ethics Teheran’ (Speech at the International Congress in Teheran) <http://www.jonathanglover.co.uk/philosophy-beliefs-and-conflicts/international-congress-on-medical-ethics-teheran> (accessed 12-09-2012). 117

J Adams, ‘Competition in Medical Ethics’ (1990)16 BMJ 196-197. 118

Declaration of Geneva (n16) 3. 119

A Dhai and others, ‘Confidentiality- A Dying Wish?’ (2001)91 SAMJ 126. 120

David Spencer, ‘Medical Ethics and the Politics of the South African HIV/AIDS Epidemic’ (2006) 7 SAJHIVMED 52.

19

The reason why medical practitioners face such a dilemma is because of the administrative

processes of the BI-1663 form which allows an undertaker to open the sealed page of the BI-

1663 form and places medical practitioners in a situation where they have to consider

whether disclosing the HIV-status of a deceased is contrary to the principle of non-

maleficence, especially if they consider the fact that the deceased belongs to a family which

“may suffer discrimination from the rest of the society.”121

Whether the four principles of bioethics apply to deceased persons is essentially contestable

since legal personality ends at death.122 Moreover, the law does not accord special protection

to deceased patients when it comes to confidentiality;123 the issues that concern the

confidentiality of a deceased’s information have only been raised with regard to HIV/AIDS.

The administrative issues of the BI-1663 form have not been a cause of concern in other

diseases.124 The reason why such concerns have been raised with regard to HIV/AIDS is

because of the stigma that is associated with the disease. It is however interesting to note

that stigma is more perceived than real in South Africa.125

Medical confidentiality is furthermore not absolute and the Declaration of Geneva126 should

not be understood as an oath that imposes an absolute duty to confidentiality.127 The duty of

medical confidentiality rather allows for exceptions (as already referred on page 14). These

exceptions have been described by UNAIDS as beneficial because they respect the autonomy

of affected individuals and they lead to greater openness about HIV/AIDS.128

121

Adamson Muula, Joseph Mfutso-Bengo, ‘When is the Public Disclosure of HIV Seropositivity Acceptable?’ <http://www.ndr.mw:8080/xmlui/bitstream/handle/123456789/297/When%20is%20public%20disclosure%20of%20HIV%20seropositivity%20acceptable.pdf?sequence=1> (accessed 06-07-2012). 122

Jacqueline Heaton, The South African Law of Persons (4th

edn Lexis Nexis 2012) 28; see also Gerhard Kemp and others, Criminal Law in South Africa (OUP, Southern Africa 2012) 312. 123

David McQuoid-Manson, ‘Disclosing the HIV status of deceased persons-ethical and legal implications (2007) 10 SAMJ 920. 124

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘Opening up the HIV/AIDS epidemic’ < http://www.who.int/ethics/topics/opening_up_ethics_and_disclosure_en_2000.pdf> (accessed 29-06-2012). 125

D Knapp van Bogaert, ‘ Common ethical issues related to HIV/AIDS (2011) 53 SAPFJ 607. 126

Declaration of Geneva (n16) 3. 127

S Pattison, Medical Law and Ethics (CUP, Cambridge 2006) 173-174. 128

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘Opening Up the HIV/AIDS epidemic’ <http://www.who.int/ethics/.../opening_up_ethics_anddisclosure_en_2000.pdf > (accessed 15-08-2012).

20

The South African Health Professionals Council (now the HPCSA) has dealt with a disciplinary

hearing concerning the disclosure of a deceased’s HIV status in a death notification form.129 In

the Watershed-AIDS-case, a former state pathologist Dr Leon Wagner, disclosed his patient’s

HIV-status in a death notification form and he wrote AIDS as an intermediate cause of death.

The deceased’s relatives subsequently filed a complaint with the HPCSA in which they alleged

that Dr Leon Wagner’s conduct was improper and disgraceful. At the preliminary hearings,

the HPCSA informed Dr Wagner that the case against him did not concern legal issues but it

concerned moral issues which the government were sensitive about. The HPCSA dropped the

charges against Dr Leon Wagner two years later because the HPCSA could not find prima facie

evidence that Dr Wagner had acted unlawfully.130

The decision that the HPCSA made is rather confusing. In the beginning the HPSCA ignored the

fact that the case had legal implications, it ignored the prescriptions of the Births and Deaths

Registration Act 131 and failed to provide guidance and emphasize on the importance of the

correct and comprehensive completion of death notification forms.132 The HPCSA also failed

to deal with the matter on an urgent basis and took two years to make a final ruling without

giving reasons for its judgement. The HPCSA ruling has consequently not brought any legal or

ethical clarity with regard to the disclosure of a deceased’s HIV-status.

2.4 CONCLUDING REMARKS

It is evident from the above that the disclosure of a deceased’s HIV-status is fraught with

ethical and legal dilemmas and uncertainties. While the four foundational principles of

129

Anonymous, ‘Watershed AIDS case for SA’ News 24. Com (Pretoria 22 November 2006) <http://www.news24.com/SouthAfrica/News/Watershed-Aids-case-for-SA-20061122 > (accessed 15-08-2012) attempts of communication have been made with the HPSCA but the HPSCA did not give us the disciplinary transcript. Communication began in September 2012 hence the reason why we can only rely on the newspaper article. 130

Anonymous, ‘Doctor cleared of unprofessional conduct’ Independent on line (Pretoria 18 November 2008) <http://www.iol.co.za/news/south-africa/doctor-cleared-of-unprofessional-conduct-1.395416#UzRIIfuypQ> (accessed 15-08-2012). 131

Births and Deaths Registration Act 51 of 1992. 132

Anonymous ‘Watershed AIDS case for SA’ News 24.com (Pretoria 22 November 2006) <http://www.news24.com/SouthAfrica/News/Watershed-Aids-case-for-SA-20061122> (accessed 15-08-2012). Dirk Herman who was representing the Labour Union Solidarity had expectations that the outcome would have a huge impact on South Africa.

21

bioethics provide some guidance for medical practitioners in weighing the contested interests

of all parties involved, no clear and final answer exists on the correct completion of a death

notification and the potential risks than an HIV/AIDS disclosure on these official documents

holds for the family of the deceased. The Health Professions Council of South Africa has failed

to provide clarity on the matter and rather dealt with the Watershed-AIDS-case in a

haphazard manner, failing to recognise the legal importance of the case and failing to offer

medical practitioners with clear cut regulations to the disclosure of a deceased’s HIV/AIDS-

status.

22

CHAPTER 3: HUMAN RIGHTS AND RIGHTS OF THE DEAD IN HIV/AIDS ISSUES

3.1 INTRODUCTION

This chapter will consider whether the protection of the rights to privacy and dignity also

extend to deceased persons. It is trite that deceased persons do not have any legal rights or

obligations in South Africa.133 However it will be shown in this chapter that deceased persons

do have legal rights in other political jurisdictions134 and the law can protect the interests of

the deceased under certain circumstances.

To understand why the scale tilts on posthumous interests rather than human rights, a short

discussion of theories of legal rights is necessary. First an analysis will be provided of whether

these theories are applicable in South African law, where after a detailed discussion will

follow on the rights of a deceased in general. It will be concluded in this chapter that in terms

of South African law, deceased persons do not have any special rights or protections and that

medical practitioners should complete death notification forms honestly and fully.

3.2 THEORIES SUPPORTING POST HUMOUS RIGHTS

In contrast to the discussion in the previous chapter, the notion of post-humous legal rights

as opposed to moral rights and obligations will be discussed in this section. In this regard the

will theory of human rights and the interest theory of human rights will be considered.135 Both

theories offer theoretical analysis of the concept ‘right’136 , and have been described as

“theories [that] offer a valuable insight into the fundamental nature, function and meaning of

the term right”.137 Generally, the two theories aim to explain the necessary conditions for

someone or something to count as a legal right holder, the sufficient formal features of a legal

right, and the architectonic principles that guide and shape all legal rights. 138 While both

133

David McQuoid-Manson, ‘Disclosing the HIV status of deceased persons- ethical and legal implications’ (2007) 10 SAMJ 920. 134

Adam Rosenblatt, International Forensic Investigations and Human Rights of the Dead’ (2010) 32 HRQ 928. 135

Kirsten Rabe Smolensky, ‘Rights of the Dead’ (2009) 37 HLR 765. 136

Rowan Craft, ‘Rights: Beyond Interest Theory and Will Theory?’ (2004)23 LAP 347. 137

Rowan Craft, ‘Rights Beyond Interest Theory and Will Theory?’ (2004) 23 LAP347. 138

David Gershon Frydrych. ‘Taking Rights Way Too Seriously : Kant, Hohfeld and Evaluating Conceptual Theories of Rights’ (LLM thesis , University of Toronto 2010)

23

theories have a descriptive and justificatory dimension, they each offer an opposing account

on the function of rights.139

The primary difference between these two theories of rights lies in their functions.140 The

interest theory of rights bases rights on the interests of the individual who is to hold the

right141 and the will theory regards rights as conferring choices on their holders. 142 The

interest theory of rights also construes rights as value based, while the will theory does not

construe rights as value based.143 The will theory of rights restricts the proliferation of human

rights to human beings capable of possessing human rights only.144 As a result, the will theory

and the interest theory of rights are seen as rivals especially when explicating the manner in

which rights are of value to their holders.145

Rights must generally be beneficial to human beings to qualify as rights and to determine

what interests should be preserved by human rights; it should be assessed whether or not

those interests apply to all people. 146 Not only do the two theories offer compelling

arguments to the better understanding of rights, but they also offer compelling perspectives

on the debate of rights147 which will be examined below.

3.2.1 Interest Theory of Rights

139

Rowan Cruft, ‘Rights Beyond Interest Theory and Will Theory’ (2004)23 LAP 348. 140

James Sherman, ‘A New Instrumental Theory of Rights’ (2010)13 ETMP218. 141

Eleanor Curran, ‘Hobbes Theory of Rights: A Morden Interest Theory’ (2002) 6 THE 85. See also William H Meyer, ‘Confirming, Infirming and “Falsifying” Theories of Human Rights’ (1999) 21 HRQ 221. Though specifically relating to Multinational Corporations (MNC’s) but the beneficial impact of human rights stated is an aspect of the Interest theory of human rights. 142

Kristina Anne Bently, ‘The Foundations of Rights reconsidered: Enforceable Rights, Liberty and Conflict Rights’ (Department of Government and University of Manchester Paper) <http://www.socialsciences.manchester.ac.uk/medialibrary/politics/research/workingpapers/mancept/KBMANCEPTpaper.pdf> (accessed 18-01-2014). 143

Eric Mark, ‘In Defence of the Jurisdiction Theory of Rights’ (2000)4 THE 92. 144

Michael Hastings, ‘For an Interest Theory Conception of Human Rights’ <http://www.academia.edu/3023745/For_an_Interest_Theory_Conceprtion_of_Human_Rights> (accessed 18-01-2014). 145

Rowan Cruft, ‘Rights Beyond Interest Theory and Will Theory?’ (2004)23 LAP 348. 146

Michael Hastings, ‘For an Interest Theory Conception of Human Rights’ http://www.academia.edu/3023745/For_an_Interest_Theory_Conception_of_Human_Rights> (accessed 18-01-2014). 147

Rowan Cruft, ‘Rights Beyond Interest Theory and Will Theory?’ (2004)23 LAP 348-349.

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The interest theory of rights currently recognises persons incapable of making choices as right

holders like those who are mentally incapacitated or in a coma.148 The function of a right, in

terms of the interest theory of rights, is to protect and promote the interests of right holders

and rights therefore exist to serve the relevant interests of right holders.149 However, the

interest theory of rights does not define interests and it is not explicit as to whether all

interests are worth protecting.150 This is rather problematic when it comes to the health

status of a deceased person. It is not clear whether his/her health status is an interest since

an interest is undefined. Yet despite this short-coming, the interest theory accepts that dead

persons are capable of being right holders.151

Deceased persons are capable of being right holders because their interests or potential rights

can survive death and be recognised by law.152 Deceased interests include those enshrined in

wills, those protected by contracts and those involving research.153 Logically, if a deceased

person declares his/her desire for a certain type of burial in writing, they have a right to that

burial because that particular interest survives death and this also applies to how they depose

their estate.154 If a person consents in writing his/her desire to be dismembered after death

for the purposes of research, he/she has a right to bodily integrity because that interest

survives death. In other words the interest theory accepts that deceased persons are capable

of being right holders because they possess interests.155

3.2.3 Will Theory of Rights

148

Kirsten Rabe Smolensky, ‘Rights of the Dead’ (2009) 37 HLR 769 . 149

James Sherman, ‘A New Instrumental Theory of Rights’ (2010)13 ETMP 215-216. 150

Matthew Krammer, ‘Some Doubts about the Alternatives to the Interest Theory of Rights’ <http://www.researchgate.net/publication/228213261_Some_Doubts_About_Alternatives_to_the_Interest_Theory_of_Rights> (accessed 07-09-2013). 151

Kirsten Rabe Smolensky, ‘Rights of the Dead’ (2009) 37 HLR 769; Nazanin Bagherzadeh , ‘ Death in Disaster’ < http://www.ruhr--uni-bochum.de/ifhv/documents/workingpapers/wp4_2.pdf > (accessed 09-09-2014). 152

Kirsten Rabe Smolensky, ‘Rights of the Dead’ (2009) 37 HLR 770-771 153

For interests involving research subjects see TM Wilkinson, ‘Last Rights : The Ethics of Research on the Dead’ (2002)19 JOAP 31-34; where it is stipulated that people do not consent to have their bodies dismembered while alive but consent to have their bodies dismembered after death. See also Nazanin Bagherzadeh, ‘Death in Disaster’ < http://www.ruhr--uni-bochum.de/ifhv/documents/workingpapers/wp4_2.pdf > (accessed 09-09-2014). 154

Nazanin Bagherzadeh, ‘Death in Disaster’ < http://www.ruhr--uni-bochum.de/ifhv/documents/workingpapers/wp4_2.pdf > (accessed 09-09-2014). 155

Nazanin Bagherzadeh , ‘ Death in Disaster’ < http://www.ruhr--uni-bochum.de/ifhv/documents/workingpapers/wp4_2.pdf > (accessed 09-09-2014).

25

The will theory of rights submits that rights only exist where a person is able to make choices

of his or her will.156 A necessary condition for being a rights holder is having the adequate

competence and capacity to waive or annul that right, and the purpose of a right therefore, is

to grant the right holder the freedom to control the duties others owe to him/her. 157 This

implies that patients with diminished autonomy like the mentally incapacitated and patients

in a coma, amongst others, are incapable of being right holders.

Thus in terms of this theory, deceased persons are not right holders and in the context of

disclosing their HIV-status; deceased persons do not have rights to medical confidentiality and

privacy since they are incapable of making such choices. It follows that medical practitioners

should not encounter a dilemma. However, if this theory is strictly applied it can be

problematic especially in issues that concern euthanasia.158 Deceased persons are only

capable of being beneficiaries from legal protections.159 Whether these legal protections

include the non-disclosure of a deceased’s HIV-status will depend on a state’s political

jurisdiction concerning the rights of the dead.

Unlike the interest theory of rights, the will theory identifies right holders as “small scale

sovereigns” in a position to control the performance of their duties.160 In other words the will

theory of rights would therefore interpret that deceased persons are not right holders, since

they are unable to exercise power over the fulfilment of rights.161 In terms of the will theory

156

Kirsten Rabe Smolensky, ‘Rights of the Dead’ (2009) 37 HLR 768 . 157

Matthew Krammer, ‘Some Doubts about Alternatives to the Interest Theory of Rights’ <http://www.researchgate.net/publication/228213261_some_doubts_about_the_alternatives_to_the_Interest_Theory_of_Rights > (accessed 30-09-2013). 158

Jonathan Burchell, South African Criminal Law and Procedure (Vol, 4th

edn, Juta& Co Ltd, Cape Town 2011) 129. Although said in respect of the case of Clark v Hurst 1992(4) SA 630 (D) it is certainly arguable in these circumstances. If the Will Theory is strictly applied doctors are capable of permitting patients in a persistent vegetative state to die with dignity even in the absence of an advance directive. 159

Kirsten Rabe Smolensky, ‘Rights of the Dead’ (2009) 37 HLR ) 768-769. 160

Nazanin Bagherzadeh, ‘Death in Disaster’ < http://www.ruhr--uni-bochumide/ifhv/documents/workingpapers/wp4_2.pdf > (accessed 09-09-2014). 161

Kirsten Rabe Smolensky, ‘Rights of the Dead’ (2009) 37 HLR 768; See also Rowan Cruft , ‘Rights Beyond Interest Theory and Will Theory?’ (2004)23(4)LAP 367; Nazanin Bagherzader, ‘Death in Disaster’ < http://www.ruhr--uni-bochumide/ifhv/documents/workingpapers/wp4_2.pdf > (accessed 09-09-2014).

26

deceased persons are not right holders but a responsibility of the living.162 Implying that,

“even if a deceased person leaves a will, it is up to the survivors to see to its execution.”163

3.3 THE INTERPRETATION OF THE THEORIES OF RIGHTS IN THE SOUTH AFRICAN CONTEXT

The dead are not capable of being right holders in South Africa, once a person dies their rights

and obligations die with them.164 The law emphasises that legal personality ends at death,

hence in issues that concern the disclosure of a deceased’s HIV-status in a death notification

form, medical practitioners are obliged to complete it honestly and fully. It is not the duty of a

medical practitioner to determine whether deceased persons are capable of being right

holders or not. The duty of the medical practitioner is to make an honest disclosure of what

caused the deceased’s death. It is irrelevant whether they favour the interest theory or the

will theory.

As mentioned above, deceased persons are incapable of being right holders in South Africa,

165 but this does not necessarily imply that the laws in South Africa do not protect the

interests of deceased persons in certain instances. Laws on testate succession for example,

protect the deceased’s interests and in inheritance issues, the distribution and division of the

deceased’s estate is in accordance to the deceased’s wishes.166 But this is only if the

deceased’s will is valid.167

In the medical context, issues that concern organ donation and organ transplantation also

protect the interests of the deceased. When using a deceased’s heart for transplantation to

save the life of a living person or when removing the organs of a deceased person for use in a

tertiary institution, legislation protects the deceased from dissection without consent and

trafficking amongst others 168 In issues that concern the medical confidentiality of a

162

Adam Rosenblatt, ‘International Forensic Investigations and Human Rights of the Dead’ (2010) 32 HQR 929. 163

Nazanin Bagherzadeh, ‘Death in Disaster’ < http://www.ruhr--uni-bochum.de/ifhv/documents/working papers/wp4_2.pdf > (accessed 09-09-2014). 164

Jacqueline Heaton (n122); see also David McQuoid-Manson, ‘Disclosing the HIV status of deceased persons-ethical and legal implications’ (2007)10 SAMJ 920. 165

Jacqueline Heaton (n 122). 166

See section 2 and section 4 of the Wills Act 7 of 1953. 167

See section 2 of the Wills Act 7 of 1953; section 2(3) which particularly sets out the requirements of a valid will. 168

See section 56 of the National Health Act 61 of 2003.

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deceased’s information, legislation protects the deceased against the disclosure of such

information.169 The deceased’s interests in regard to medical confidentiality are not without

exceptions.170 The exceptions are court order, statute and written consent.171 It is trite that

deceased persons do not have rights and obligations but the law protects their interests in

certain instances.

To argue that South African laws are more inclined to the will theory of human rights which

submits that deceased persons do not have rights is dependent on one’s interpretation. But a

critical analysis of the two theories of human rights reveals that South Africa is more inclined

to the will theory of rights as compared to the interest theory of rights. It has been contended

that in South Africa deceased persons have a possibility of being classified as legal objects.172

If deceased persons are classified as legal objects in South Africa, the question to be asked is

whether legal objects are capable of possessing rights. Accordingly a legal object does not

have rights but a person with legal personality has a legal right over an object.

The second question to be asked is whether medical practitioners as living persons have rights

over deceased patients as legal objects, when it comes to disclosing their HIV-status in a death

notification form. In South Africa it is uncertain whether deceased persons are legal objects or

not173 but if they are legal objects they fall outside the legal commerce.174 To argue that

medical practitioners have rights over deceased persons as legal objects, is a concept that is

inclined to the subject of philosophy which is beyond the scope of this paper. What is certain

is that in South Africa deceased persons do not have rights and medical practitioners must

disclose the cause of a patient’s death honestly and fully.175

169

See section 14 of the National Health Act 61 of 2003. 170

See section 14(2) of the National Health Act 61 of 2003. Exceptions such as written consent, court order and statute. 171

See section 14(2) of the National Health Act 61 of 2003; see also section 14(2) of the Promotion to Access to Information Act 2 of 2000. 172

AJ Van der Walt, GJ Piennar, Introduction to the Law of Property (6th

edn, Juta& Co Ltd, Cape Town 2009) 22. 173

AJ Van der Walt, GJ Piennar, Introduction to the Law of Property (6th

edn, Juta& Co Ltd, Cape Town 2009) 22. 174

AJ Van der Walt, GJ Piennar, Introduction to the Law of Property (6th

ednJuta& Co Ltd, Cape Town 2009) 22. 175

See section 15 and section 31 of the Births and Deaths Registration Act.

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In certain jurisdictions such as the United States of America (USA), deceased persons have

legal rights.176 Nevertheless, medical confidentiality and privacy are some of the rights

deceased persons have in the United States of America, but whether they stretch as far as

non-disclosure in issues of HIV/AIDS is contestable. It is however, unclear whether the legal

rights that deceased persons possess are universal. To argue that deceased persons possess

universal human rights amplifies numerous issues since these rights, like human rights of the

living, transcend in to local laws and demand international concern.177

The framers of the Universal Declaration of Human Rights 178 have a common goal to identify

common values that every human being shares.179 Whether dead people are capable of

possessing the shared qualities or values that give rise to human rights is difficult to establish,

since the rights of the living are based on the concepts of agency and dignity.180 In South

Africa establishing the common values that deceased persons share is problematic since legal

personality ends at death.181 Some authors however opine that “the very purpose of the

rights language is to protect and enhance human agency.”182

Human agency is but an echo of the will theory of rights. It involves making choices without

encountering obstacles from the government and other institutions.183 In issues that concern

the disclosure of a deceased’s HIV-status on a death notification form, deceased persons are

not capable of deciding whether their HIV-status should be disclosed or not. Their decision is

made by living persons. Human agency can only support the idea of human rights if it is

thought to be valuable and worth protecting.184 The question to be asked is whether a

deceased’s HIV-status is worth protecting. Subsequently, a deceased’s HIV-status is not worth

protecting if the aim is to promote secrecy. Combating the spread of HIV/AIDS is much more

176

Adam Rosenblatt, International Forensic Investigations and Human Rights of the Dead (2010) 32 HRQ 928. The rights of the deceased extend to procreation. Post humours sperm retrieval issues concern the rights of the deceased. 177

Adam Rosenblatt, International Forensic Investigations and Human Rights of the Dead (2010) 32 HRQ 928-929. 178

Universal Declaration of Human Rights (adopted 10 December 1948 UNGA Res 217 A (III) (UDHR). 179

Universal Declaration of Human Rights (adopted 10 December 1948 UNGA Res 217 A (III) (UDHR). Preamble. 180

Adam Rosenblatt, International Forensic Investigations and Human Rights of the Dead (2010) 32 HRQ 929. 181

Jacqueline Heaton (n122). 182

Adam Rosenblatt, International Forensic Investigations and Human Rights of the Dead (2010) 32 HRQ 929. 183

Adam Rosenblatt, International Forensic Investigations and Human Rights of the Dead (2010) 32 HRQ 929. 184

Adam Rosenblatt, International Forensic Investigations and Human Rights of the Dead (2010) 32 HRQ 929.

29

important. Medical practitioners should disclose a deceased’s HIV-status in a death

notification form as prescribed by the law so that statistics in South Africa could be

accurate.185

3.4 CONCLUDING REMARKS

The issues that concern universal human rights of deceased persons are a question of

philosophy. Universal human rights of deceased persons are topical in political jurisdictions

like the United States of America and not in South Africa, since legal personality is terminated

at death. In issues concerning the disclosure of a deceased’s HIV-status they should not even

be at the core since people die with their rights and obligations. Medical practitioners should

not concern themselves about the rights of deceased persons when completing a death

notification form because the dead are incapable of being right holders in South Africa.

185

Flanagan, ‘Stats SA in bid to get accurate data on deaths : Information vital for health plans and policies’ Independent (Pretoria 14 Jan 2006) < http:// www.iol.co.za/the-star/stats-sa-in-bid-to-get-accurate-data-on-deaths-1.1117346#UzQInsufxpQ> (accessed 06-07-2012)

30

CHAPTER 4: COMPARETIVE STUDY OF KENYA AND UGANDA

4.1 INTRODUCTION

UNAIDS statistics on the HIV/AIDS epidemic reveal that HIV/AIDS is most severe in Sub-

Saharan Africa and in South Africa only it claims at least a million lives annually.186 Amidst

such statistics in Sub-Saharan Africa, Uganda and Senegal stand out for their progress in

battling HIV/AIDS.187 Though both countries are a representation of different kinds of success,

state action was and is still crucial to the progress that has been made to date.188

Whether the progress made so far results from medical practitioners disclosing the HIV-status

of deceased persons in death notification forms is what this chapter will establish. A

comparison of HIV/AIDS policies in this chapter will be based on Kenya and Uganda. Despite

the fact that Senegal also stands out in the battle against HIV/AIDS, Senegal has been

excluded as a model in this study because Senegal has been battling with a virus which is

different from the type of HI virus that Uganda has been battling with.189 Hence the difference

in surveillance methods. Uganda and Kenya deal with HIV-1 which is common in most African

countries and Senegal battles with HIV-2 which is distinct from that found in Europe. 190

This chapter will focus entirely on two East African countries (Kenya and Uganda) because the

East African Region has legislation on HIV/AIDS that deals with the disclosure of a deceased’s

HIV-status.191 Uganda and Kenya are member states of the East African Regional Community

186

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘World AIDS Day Report 2011’<http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2011/jc2216_worldaidsday_report_2011_en.pdf> (accessed 06-07-2012). 187

J Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’<http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013). 188

J Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’<http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013). The two different kinds of success referred to early intervention (in the case of Senegal) where HIV/AIDS was kept under control and concerted action (in the case of Uganda) of a full-blown epidemic. In both countries the state has played a central and a pivotal role in fighting HIV/AIDS. 189

J Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’<http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013) The HIV virus in Uganda is HIV subtype 1 while the HIV virus in Senegal is subtype 2. 190

J Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’<http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013). 191

See Eastern Community HIV/AIDS Prevention & Management Bill of 2012.

31

192 (EAC) which is the first Regional Community in Africa to propose legislation on HIV/AIDS

management.193 Uganda is of crucial importance in this chapter because in the EAC it was one

of the first countries to assent the Regional Bill in to law.194 Kenya is also important for the

purposes of this study as Kenya does not only have legislation on HIV/AIDS195, but its policies

on HIV/AIDS have been of great importance to Zambia196 and might impact on other countries

in the Southern African Region. In this chapter it will be considered whether, in Kenya and in

Uganda, the HIV-status of a deceased should be disclosed in terms of the law, and whether

the laws on death registration in Kenya and Uganda are being successfully implemented.

In the first section of this chapter a brief analysis on the law and policies in Uganda will be

made. The focus will entirely be on the HIV surveillance of deceased persons. The second

section will deal with the Ugandan legislation on HIV/AIDS. Kenya’s response to HIV/AIDS and

its use of law as a tool to combat the problem of HIV/AIDS will be discussed in the third

section of this chapter and thereafter a comparison between the HIV/AIDS legislation in Kenya

and the proposed HIV/AIDS legislation in Uganda will be made. The chapter will attempt to

illustrate whether South Africa can learn something from Uganda and Kenya in issues that

concern the disclosure of a deceased’s HIV-status.

4.2UGANDA

As compared to other countries in Sub-Saharan Africa, it is not disputable that Uganda has

stood out in the fight against HIV/AIDS.197 Although the fight is far from over, 198 Uganda has

192

The East African Regional Community is an organization that is similar to the Southern African Development Community (SADC) which aims at integration and development. Members of the East African Regional Community are Tanzania, Kenya, Uganda, Burundi, Rwanda and The Democratic Republic of Congo. 193

See East African Community HIV&AIDS Prevention and Management Bill 2012. 194

M Nalugo, ‘Uganda Assents to the Regional HIV/AIDS Bill’ Africa Review (Kampala 20 March 2013) <http://www.africareview.com/News/Uganda-assents-to-regional-HIV-Bill/-/979180/1725654/-/28ry06/-/index.html> (accessed 13-12-2013). 195

Kenya: HIV and AIDS Prevention and Control Act 14 of 2006. 196

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘Zambia learns from Kenya’s experience in developing HIV programmes for key populations at higher risk’ <http://www.unaids.org/en/resources/presscentre/featurestories/2012/october/20121017zambiakenya/> (accessed 19/11/2013). 197

J Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’ <http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013); see also Jenny Kuper, ‘Law as a Tool: The Challenge of HIV/AIDS in Uganda’ (Crisis States Programme Development Research Paper 69, 2005) <http://mercury.ethz.ch/serviceengine/Files/ISN/57565/ipublicationdocument_singledocument/3e382e96-d6e3-4bb6-950a-4a4b47f89556/en/wp69.pdf>(accessed 13-10-2013).

32

managed to achieve what other states have not been able to achieve.199 HIV was first

identified in Uganda in 1983 on the shores of Lake Victoria 200 and it quickly spread to other

parts of the country. The National prevalence rates were at an estimate of nine per cent in

1987, they peaked to eighteen per cent in 1992 and in some regions prevalence peaked at

thirty per cent.201

As a result of these statistics, the Ugandan government developed health infrastructure that

dealt with the HIV/AIDS epidemic.202 The Ministry of Health established sentinel surveillance

sites to deal with the epidemic.203 This also marked the beginning of HIV/AIDS reporting for

the purposes of accurate statistical data.204 Accurate statistics enable the government to plan

for national budget, health expenditure and policies that relate to HIV/AIDS.205

4.2.1 Death Registration Process

198

J Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’ <http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf > (accessed 10-11-2013). 199

Most states have not been able to prioritize e HIV/AIDS. Many states have also not been able to reduce the prevalence rate of HIV/AIDS in the same manner Uganda has. For instance Botswana. Botswana and Uganda got donor funding at the same time but Botswana has failed to have a considerable decline in the prevalence rate of HIV/AIDS. For more information on Uganda and Botswana see Tim Allen and Suzette Heald, ‘HIV/AIDS Policy in Africa: What has worked in Uganda and what has failed in Botswana?’ (2004) 16 JID. 1141-1154. 200

J Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’ <http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013); see also Jenny Kuper, ‘Law as a Tool: The Challenge of HIV/AIDS in Uganda’ (Crisis States Programme Development Research Paper 69, 2005) <http://mercury.ethz.ch/serviceengine/Files/ISN/57565/ipublicationdocument_singledocument/3e382e96-d6e3-4bb6-950a-4a4b47f89556/en/wp69.pdf> (accessed 13-10-2013). Lake Victoria is in Rakai District and the disease was first identified as the ‘slim disease.’ 201

Jenny Kuper, ‘Law as a Tool: The Challenge of HIV/AIDS in Uganda’ (Crisis States Programme Development Research Paper 69, 2005) <http://mercury.ethz.ch/serviceengine/Files/ISN/57565/ipublicationdocument_singledocument/3e382e96-d6e3-4bb6-950a-4a4b47f89556/en/wp69.pdf> (accessed 13-10-2013). 202

J Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’<http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013). 203

J Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal <http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013). Four clinics were established in 1987; by the end of 2002 the antenatal sites had expanded to twenty. 204

Flanagan, ‘Stats SA in bid to get accurate data on deaths: Information vital for health plans, policies <http://www.iol.co.za/the-star/stats-sa-in-bid-to-get-accurate-data-on-deaths-1.1117346#UzQInsfuypqQ> (accessed 06-07-2012). 205

K Joyner (ed), Aspects of Forensic Medicine (Juta& Co, Cape Town 2010) 139; see also Flanagan, ‘Stats SA in bid to get accurate data on deaths: Information vital for health plans, policies <http://www.iol.co.za/the-star/stats-sa-in-bid-to-get-accurate-data-on-deaths-1.1117346#UzQInsfuypQ> (accessed 06-07-2012).

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Like the South African death registration process, the death registration process in Uganda is

initiated in the health sector by a medical practitioner who certifies the cause of death.206 The

information is then submitted through undertaker services to the Home Affairs office for

registration.207 The death registration process in Uganda also involves a third party in the

process.208 The death registration process does not only involve the medical practitioner and

the undertaker but it may also involve other people depending on the circumstances.209 The

registration of deaths may involve relatives of the deceased, who were present at death or

the deceased’s last illness, relatives of the deceased residing within the births and deaths

registration district, any other person present at death, an occupier or inmate where the

death occurred, any person taking charge of the body and any person causing the burial of the

body.210

The persons mentioned above also play a role in the submission of information to the Home

Affairs and this is dependent on how the deceased’s death occurred. The medical practitioner

hands the death notification form to any of the above mentioned parties who will then submit

it to the Home Affairs department for registration. The Department of Home Affairs then

sends the information relating to the deceased for statistical data analysis. Death registration

has to occur within a time period of a month and the parties involved in the registration

process must all certify the correctness of the particulars concerning the deceased.211 The

specific time period of a month is for the purposes of statistical data and deaths that are not

registered within the specified time period result in fines.212

Failure to submit correct information is a criminal offence.213 The only difference between

the death registration system in Uganda and the death registration system in South Africa is

that all parties involved in the registration system in Uganda certify the correctness of

206

Chalapati Rao, Dabbie Bradshaw and Collin Mathers, ‘Imposing Death Registration and Statistics in Developing Countries: Lessons from Sub-Saharan Africa’ (2004) 9 SAJD 86-87. 207

Chalapati Rao, Debbie Bradshaw and Collin Mathers, ‘Imposing Death Registration and Statistics in Developing Countries: Lessons from Sub-Saharan Africa’ (2004) 9 SAJD 87. 208

See section 16 (1) of Uganda Births and Deaths Registration Act Chapter 309 of 1973. 209

See section 16 (1) of Uganda Births and Deaths Registration Act Chapter 309 of 1973. 210

See section 16 (1) of Uganda Births and Deaths Registration Act Chapter 309 of 1973. 211

See section 16 and section 17 of Uganda Births and Deaths Registration Act Chapter 309 of 1973. 212

See section 23 of Uganda Births and Deaths Registration Act Chapter 309 of 1973. 213

See section 25 of Uganda Births and Deaths Registration Act Chapter 309 of 1973.

34

information relating to the deceased and his cause of death. In South Africa the only person

who certifies such information is the medical practitioner. In Uganda all information

concerning the death of a deceased should be disclosed in the death notification form and no

exceptions are made for in matters involving HIV/AIDS.214

The Births and Deaths Registration Act of Uganda is drafted in a manner that allows for an

open approach in HIV/AIDS related matters. Other parties apart from the undertaker and the

medical practitioner are also involved in the death registration process.215 As a consequence

issues concerning the confidentiality of a deceased’s HIV-status have never been at core. This

does not imply that information relating to the deceased is not confidential. Information

relating to the deceased’s medical records is confidential but is subject to exceptions such as

statute and court order.216

In Uganda, medical practitioners do not make much emphasis on the involvement of third

parties in the death registration system because the law prescribes it. Medical practitioners

observe their duties when it comes to the completion of death notification forms, they do not

analyse the pitfalls of the law. Medical practitioners in Uganda are aware of the importance

of statistical data and as a result of their co-operation; the government is able to plan for

national budget and health expenditure.217

4.2.2 The Central Role of State Action in the Disclosure of a deceased’s HIV status

Apart from the mandatory provisions stated in the Births and Deaths Registration Act, the

Ugandan government has and is still playing a pivotal role in HIV/AIDS related matters and in

214

See section 17 of Uganda Births and Deaths Registration Act Chapter 309 of 1973. 215

See section 16 of Uganda Births and Deaths Registration Act Chapter 309 of 1973. 216

See sections 16, 17, 18 of Uganda Births and Deaths Registration Act Chapter 309 of 1973. 217

K Joyner (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 139.though stated in respect of South Africa, it equally applies to other states such as Uganda also. Due to accurate statistics on HIV/AIDS related deaths the Ugandan government was able to place HIV/AIDS problems in a broader context and introduce policies such as The Poverty Eradication plan, AIDS Awareness policies on Voluntary Testing and Counselling, Behavioural Change Policies, AIDS Control Programmes and Education Policies aimed at providing free education for HIV/AIDS orphans. For more information see, Jenny Kuper, ‘Law as a Tool: The Challenge of HIV/AIDS in Uganda’ (Crisis States Programme Development Research Paper 69, 2005) <http://mercury.ethz.ch/serviceengine/Files/ISN/57565/ipublicationdocument_singledocument/3e382e96-d6e3-4bb6-950a-4a4b47f89556/en/wp69.pdf> (accessed 13-10-2013).

35

issues that concern the disclosure of a deceased’s HIV-status.218 To ensure that the state has

accurate data on the number of deaths related to HIV/AIDS, the president of Uganda made

HIV/AIDS a priority 219 and to the international community he announced the HIV/AIDS

epidemic the country was experiencing.220

The president of Uganda also took the lead role in ensuring that medical practitioners were

co-operative in providing honest information relating to HIV/AIDS related deaths. The

president used medical research to declare HIV/AIDS a national problem and he ordered the

medical bureaucracy to prioritise HIV/AIDS.221 By making such an order, it implies that medical

practitioners are obliged to disclose the HIV-status of a deceased person in a death

notification form. Such an order also means that when medical practitioners are completing

the death notification form they should prioritise HIV/AIDS related deaths before considering

ethical issues surrounding the disclosure of a deceased’s HIV-status.

For the purposes of government expenditure medical practitioners are obliged to adhere to

the provisions of the Births and Deaths Registration Act.222 If the South African government is

to adopt such an approach, medical practitioners will understand the importance of disclosing

the HIV-status of a deceased patient in a death notification form. The pitfalls that are

associated with the BI-1663 form would also be less significant.

218

James Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal <http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf > (accessed 10-11-2013) Political leadership played a central role in the fight against HIV/AIDS in Uganda. Ugandan HIV/AIDS policies are as a result of the political leadership of President Yoweri Museveni. Although leadership is an elusive factor, President Museveni appeared to be better than other leaders when it came to the battle against HIV/AIDS. 219

James Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’ <http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013). 220

Joseph Tumushabe, ‘The Politics of HIV/AIDS in Uganda’ (Social Policy and Development Programme Paper 28, 2006) <http://www.unrisd.org/80256B3C005BCCF9/(httpAuxPages)/86CB69D103FCF94EC125723000380C60/$file/tumushabe-pp.pdf> (accessed 23-11-2013) The Ugandan president sent his Minister of Health to Geneva where he made face of international press coverage. 221

James Putzel, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’ <http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013). 222

Uganda Births and Deaths Registration Act Chapter 309 of 1973.

36

The Ugandan president further declared HIV/AIDS a national problem.223 Where an epidemic

has been made a priority and declared a national problem, accurate statistics are necessary.

Accurate statistics of this nature are only determined when medical practitioners disclose a

patient’s HIV-status in a death notification form. If the government in South Africa takes a

lead role in the fight against HIV/AIDS, medical practitioners in South Africa would not be

reluctant to disclose a deceased’s HIV-status in a death notification form.

4.2.3 Proposed Legislative Measures relating to the disclosure of a deceased’s HIV-status

In 2009, the legislative committee in Uganda specifically drafted a bill that addressed issues

on HIV/AIDS.224 The bill addresses issues of stigma and discrimination and issues of HIV

surveillance and reporting.225 The HIV/AIDS Control Bill specifically addresses issues on the

confidentiality of a deceased’s HIV-status which could be of assistance to countries such as

South Africa.226 Earlier, it was pointed out that the Ugandan government made HIV/AIDS a

priority 227 and the bill is but an emphasis that HIV/AIDS is a national priority.228 HIV/AIDS

prevention is the duty of every individual and those who fail to maintain this duty are

criminalised.229

Whether the duty to prevent HIV transmission includes a medical practitioner’s duty to

disclose the medical cause of death honestly and fully is dependent on one’s interpretation.

The HIV/AIDS Prevention and Control Bill makes it the duty of all medical practitioners to

maintain the confidentiality of a patient’s health status but they are also exceptions to the

223

Jenny Kuper, ‘Law as a Tool : The Challenge of HIV/AIDS in Uganda’ (Crisis States Development Programme Research Paper 69, 2005) <http://mercury.ethz.ch/serviceengine/Files/ISN/57565/ipublicationdocument_singledocument/3e382e96-d6e3-4bb6-950a-4a4b47f89556/en/wp69.pdf> (accessed 13-10-2013) 224

See Uganda’s HIV/AIDS Prevention and Control Bill of 2009. 225

See section 20 and 21 of the HIV/AIDS Prevention and Control Bill of 2009. 226

See sections 20 and 21 of the HIV/AIDS Prevention and Control Bill of 2009. 227

Putzel (n221). 228

See section 3 of the HIV/AIDS Prevention Control Bill of 2009. Where it is emphasized that it is the duty of every individual to prevent the spread of HIV/AIDS through reasonable steps so as to avoid transmission. 229

See sections 3 and 4 of the HIV/AIDS Prevention Control Bill of 2009.

37

duty, such as consent, court order and statute.230 These exceptions to medical confidentiality

are similar to those stipulated in the Health Professionals rules in South Africa. 231

The main differences between the guidelines of Health Professionals in South Africa and the

provisions in the HIV/AIDS Prevention Bill in Uganda, is that the bill in Uganda permits the

disclosure of a person’s HIV-status to a third party who has contact with the HIV positive

person, and this contact is not limited to sexual partners only.232 And the bill is explicit about

the disclosure of a deceased’s HIV-status in a death notification form.233 Non-disclosure

should not be seen as a measure to prevent statistical data. 234 It is implied in this provision

that the disclosure of a deceased’s HIV-status on a death notification form is mandatory.

Consequently, the duty of every individual to prevent the spread of HIV/AIDS is inclusive of a

medical practitioner’s duty to disclose a patient’s death honestly and fully. In other words if

HIV is an underlying cause of death, a medical practitioner must not use the rule of

confidentiality to avoid statistical data. The medical practitioner must instead disclose a

deceased’s patient HIV-status in order for correct statistical data to be captured. If accurate

statistical data on the number of people who die of AIDS related illnesses is captured,

government will be able to plan budget and introduce new policies.235

The president of Uganda recently promulgated the East African Community HIV&AIDS

Prevention and Management Bill in to law in Uganda.236 The East African Community

230

See sections 20 and 21 of the HIV/AIDS Prevention and Control Bill 2009. Exceptions such as written consent, court order, statutory provision, HIV/AIDS surveillance. 231

Health Professionals Council of South Africa, Confidentiality: Protecting and Providing Information (2nd

edn Pretoria, South Africa 2007) [3.2.6]. 232

See section 21(2) (f) of the HIV/AIDS Prevention and Control Bill of 2009. 233

See section 21(2) (f) of the HIV/AIDS Prevention and Control Bill of 2009. 234

See section 21(2) (f) of the HIV/AIDS Prevention and Control Bill of 2009 where it is written, Nothing in this section shall prevent disclosure of statistical or other information that could reasonably be expected to lead to the identification of the person whom it relates. 235

K Joyner (ed) Aspects of Forensic Medicine, (Juta& Co Ltd, Cape Town 2010) 139; see also Flanagan, ‘Stats SA in bid to get accurate data on deaths: Information vital for health plans, policies’<http://www.iol.co.za/the-star/stats-sa-in-bid-to-get-accurate-data-on-deaths-1.1117346#UzQInSfuypQ> (accessed 06-07-2012). 236

Mercy Nalugo, ‘Uganda Assents To the Regional HIV/AIDS Bill’ Africa Review (Kampala, 20 March 2013) <http://www.africareview.com/News/Uganda-assents-to-regional-HIV-Bill/-/979180/1725654/-/28ry06/-/index.html> (accessed 13-12-2013).

38

HIV&AIDS Prevention and Management Bill237 was debated and passed in Nairobi in 2012.238

The bill proposed the adoption of a regional HIV law to regulate effective responses to HIV

across all the countries of the East African Community.239 The East African Regional bill on

HIV/AIDS uses the law as an essential tool to prevent new infections and AIDS-related

deaths.240 The East African community regional bill was promulgated into law by the Ugandan

president as a measure of prioritising HIV/AIDS. New HIV/AIDS infections and AIDS –related

deaths can only be prevented if a state has accurate statistics on the number of people who

die of HIV/AIDS related illnesses.

The East African community regional bill on HIV/AIDS management also deals with the

confidentiality of a deceased’s HIV-status.241 In terms of this provision, the identity of the

person whom the information relates to is protected. This is also the case in South Africa but

medical practitioners have not understood this. Instead they always perceive that a

deceased’s identity is known especially if the undertaker is involved in the death registration

process.242 In the East African regional community it is of insignificance if there is a third party

involved in the death registration process. What is of importance is the replacement of “any

gaps, discrepancies and inconsistencies in the current national legal and regulatory

approaches to HIV.”243

Accurate statistics are not irregularities when dealing with HIV/AIDS related matters.

Therefore the disclosure of a deceased’s HIV-status in a death notification form is not a

237

East African Legislative Assembly, (EALA) ‘East African Community HIV&AIDS Prevention and Management Bill 2012’<http://kelinkenya.org/wp-content/uploads/2010/10/QA_EALA_Bill_5July_Final1.pdf> (accessed 12-12-2013). 238

East African Legislative Assembly, (EALA) ‘EALA passes Regional Bill on HIV AND AIDS’<http://www.eala.org/media-centre/press-releases/343-eala-passes-regional-bill-on-hiv-and-aids-.html> (accessed 19-12-2013). 239

East African Legislative Assembly (EALA), ‘East African Community HIV&AIDS Prevention and Management Bill 2012’ <http://kelikenya.org/wp-content/uploads/2010/10/QA_EALA_Bill_5July_Final1.pdf>The East African Community comprises of Uganda, Kenya, Burundi, Tanzania and Rwanda. 240

East African Legislative Assembly, (EALA) ‘East African Community HIV&AIDS Prevention and Management Bill 2012’ <http://kelinkenya.org/wp-content/uploads/2010/10/QA_EALA_Bill_5July_Final1.pdf (accessed 12-12-2013) 241

See section 26 (c) of the East African Community HIV&AIDS Prevention and Management Bill of 2012. 242

DM Akinmusi, LD Molosi, ‘Low rate reporting of confirmed AIDS-related deaths using BI-1663forms by private practitioners in Mafikeng North West Province’ (2008) 23 SAJEI 121. 243

East African Legislative Assembly, (EALA) ‘East African Community HIV&AIDS Prevention and Management Bill 2012’ <http://www.kelikenya.org/wp-content/uploads/2010/10/QA-EALA_Bill-5July_Final.pdf > (accessed 12-12-2013).

39

breach of medical confidentiality. Like the HIV/AIDS Prevention Control Bill of Uganda, the

Eastern Community Regional Bill considers HIV/AIDS surveillance important. Consequently a

deceased’s HIV-status should be disclosed in a death notification form for the purposes of

data surveillance and government expenditure.

4.3 KENYA

Before Kenya declared HIV/AIDS a national disaster, HIV/AIDS related issues were cloaked in

secrecy and associated with witchcraft.244 Kenya diagnosed its first HIV/AIDS case in 1978 and

officially reported the case in 1984, the government then developed a five year plan in a

period of five years which focused on HIV/AIDS prevention, reporting and safe sex

practices.245 HIV surveillance and reporting in deceased persons improved in 1999 when HIV

/AIDS were declared a national disaster. 246 By declaring HIV/AIDS a national disaster it follows

that HIV/AIDS became a national priority in Kenya. Prioritizing HIV/AIDS was and is still

inclusive of disclosing the HIV-status of a deceased on a death notification form.

Amidst a poor economy and a restrictive legal environment, Kenya’s HIV prevalence has

considerably narrowed.247 Whether the decline in HIV prevalence results from accurate HIV

surveillance derived from information in death notification forms is contestable. But of

significance is the fact that other states are learning from Kenya’s strategy of HIV/AIDS

surveillance in both deceased and living persons.248

4.3.1 Death Registration Process in Kenya

244

Joseph Ngome, ‘Reporting on HIV/AIDS in Kenya’ (Nieman Report at the Nieman Foundation for Journalism at Harvard 2003) < http://www.nieman.harvard.edu/reports/article/101179/Reporting-on-HIVAIDS-in-Kenya.aspx> (accessed 31/10/2013). The disease was also associated with stereotypes such as disobedience of community norms and sin. These stereotypes instead fuelled the spread of the disease instead of preventing the disease. 245

Janet Kawewa, ‘Situational Analysis on HIV/AIDS in Kenya (Department of Adult Education)’, <http:// http://www.unesco.org/education/uie/pdf/Kawewa.pdf> (accessed 29-11-2013). 246

Janet Kawewa, ‘Situational Analysis on HIV/AIDS in Kenya (Department of Adult Education)’<http://www.unesco.org/education/uie/pdf/Kawewa.pdf> (accessed 29-11-2013). 247

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘The Kenya AIDS epidemic Update 2011’ <http://www.nacc.or.ke/index.php?option=com_content&view=article&id=360:the-kenya-aids-epidemic-update-2011&catid=157:publications> (accessed 06-07-2012). 248

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘Zambia learns from Kenya’s experience in developing HIV programmes for key populations at higher risk’ <http://www.unaids.org/en/resources/presscentre/featurestories/2012/october/20121017zambiakenya/> (accessed 19-11-2013).

40

Like the South African death registration system, the Kenyan death registration system makes

it mandatory for medical practitioners to honestly disclose the cause of a patient’s death.249

Medical practitioners must disclose the cause of a patient’s death to the best of their

knowledge and belief. 250 The Births and Deaths Registration Act does not make any

exceptions to deaths related to HIV/AIDS, all deaths should be disclosed honestly. Kenyan

medical practitioners only complete these death notification forms in respect of deaths that

have occurred within Kenya.251 The Kenyan death registration system also has similarities with

the Ugandan death registration system.

In Kenya, like in Uganda, medical practitioners and undertakers are not the only parties that

are involved in the death registration process.252 Close relatives who were present during the

deceased’s death, any persons taking charge of the body, occupants or inmates of the house

where the death took place, any person finding the body and relatives of the deceased who

reside in the same registration area as the deceased are also involved in the death registration

process.253

In Kenya it is compulsory for medical practitioners to complete the death notification form in

the prescribed format.254 After completing the form the medical practitioner then submits it

to the parties mentioned above who then submit it to the Department of Home Affairs for

registration. The Department of Home Affairs then issues burial permits.255 These permits are

only issued upon the production of a death notification form in the prescribed format and a

written notice signed by the medical practitioner stating that the aforementioned death

notification form was signed by him.256

249

See section 16 of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 250

See section 18(1) of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 251

See section 18(1) of Kenya Births and Deaths Registration Act Chapter 149 of 1972. Deaths that have occurred outside Kenya are dealt with in section 16A of the Act. 252

See section 17 of Kenya Births and Deaths Registration Act Chapter 149 0f 1972. The involvement of other parties such as the relatives of the deceased, relatives of the deceased residing in the same registration area as the deceased and occupants or inmates of the house where the death took place is compulsory. 253

See section 17 of the Kenya Births and Deaths Registration Act Chapter 149 of 1972. 254

See section 18(2) of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 255

See section 19 of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 256

See section 19(1) of Kenya Births and Deaths Registration Act Chapter 149 of 1972.

41

In cases that involve inquests, medical practitioners do not complete the death notification

form.257 A magistrate holding the inquest sends a copy of his finding to the Department of

Home Affairs Registrar.258 Medical practitioners who fail to comply with the provisions of the

Births and Deaths Registration Act are guilty of an offence and liable to a fine.259

4.3.2 Central Government Role and Proposed Legislative Measures

The Kenyan government, like the Ugandan government, has and is still playing a leading role

in HIV/AIDS related matters. After declaring HIV/AIDS a national disaster, the first significant

measure the government introduced made was an open approach to HIV/AIDS.260 Kenya’s

open approach to HIV/AIDS was inclusive of a rights based approach.261 The government in

Kenya made the law available to people infected and affected by HIV through the creation of

an HIV Equity tribunal.262 The HIV Equity Tribunal deals with issues that relate to stigma and

discrimination.

While the available data on the tribunal is unclear whether the tribunal also deals with issues

that pattern to the confidentiality of a deceased’s HIV-status, it is quite clear that a tribunal of

this nature deals with such issues since confidentiality issues in HIV/AIDS relate to

discrimination. The question then to be asked is if the disclosure of a deceased’s HIV- status

on a death notification form is unlawful in Kenya.

The HIV/AIDS Prevention and Control Act263 and The Kenyan National Patients Charter 264

explicitly deal with issues that concern the confidentiality of a deceased’s HIV-status.265 Part

257

See section 18(3) of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 258

See section 18 (3) of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 259

See section 18(4) of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 260

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘Kenya Update 30 April 2012’<http://www.unaids.org/en/dataanalysis/knowyourresponse/countryprogressreports/2012countries/ce_KE_Narrative_Report.pdf> (accessed 12-06-2012). 261

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘UNAIDS Board members learn about Kenya’s AIDS response.’<http://www.unaids.org/en/resources/presscentre/.../2011/.../20111128pcbKenya.> (accessed 19-11-2013). A rights based approach is inclusive of access to justice for people affected and infected by HIV. In Kenya the justice system established an HIV equity tribunal that deals with HIV-related stigma and discrimination issues. 262

Joint United Nations Programme(UNAIDS), ‘UNAIDS Board members learn about Kenya’s AIDS response’ <http://www.unaids.org/en/resources/presscentre/featurestories/2011/november/20111128pcbkenya/> (accessed 19-11-2013) 263

See Kenya HIV/AIDS Prevention and Control Act of 2006. 264

See Medico-Legal Practice Committee of the Law Society of Kenya National Patients’ Rights Charter of 2012.

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five of the Act is drafted in a manner that it is easier for medical practitioners in Kenya to

conclude that it is not unethical for a medical practitioner to disclose a patient’s HIV-status in

a death notification form. Article eight of the charter makes it clear for example, if a statute

requires the disclosure of a deceased’s HIV-status, the status should be disclosed.266 In Kenya

both the HIV/AIDS Prevention Control Act and the Births and Deaths Registration Act make

the disclosure of a deceased’s HIV-status mandatory.267

The provisions of the HIV/AIDS Prevention and Control Act make it clear that a deceased’s

HIV-status must be disclosed in pursuant to the provisions of the Births and Deaths

Registration Act.268 The Births and Deaths Registration Act 269 in Kenya like the Births and

Deaths and Registration Act in South Africa and the Births and Deaths Registration Act in

Uganda, make the honest disclosure of what caused a patient’s death mandatory.270

It is a criminal offence if medical practitioners fail to honestly disclose the cause of a patient’s

death.271 Since the law is explicit about the confidentiality of a deceased’s HIV-status it follows

that ethical decisions that concern disclosing a deceased’s HIV-status in a death notification

form are not an issue in Kenya.

4.4 COMPARISON OF THE HIV/AIDS LEGISLATION IN KENYA AND UGANDA

A comparison of the confidentiality clauses in the HIV/AIDS Prevention and Control Bill272 and

the clauses that relate to confidentiality in the HIV and AIDS Prevention Act273 reveals

similarities and differences. Both legislations place an emphasis on the maintenance of

265

See Part V, of Kenya HIV/AIDS Prevention Act of 2006. Part V of the Act specifically relates to HIV confidentiality issues that are from section 20 to section 23. 266

See Article 8 of the Medico-Legal Practice Committee of the Law Society of Kenya National Patients’ Rights Charter of 2012. 267

See section 22 of Kenya HIV/AIDS Prevention and Control Act of 2006 and section 21 of Uganda HIV/AIDS Prevention and Control Bill of 2009. 268

See section 22 of Kenya HIV/AIDS Prevention and Control Act of 2006. 269

See Section 18 of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 270

See section 18 (1) of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 271

See section 18(4) of Kenya Births and Deaths Registration Act Chapter 149 of 1972; see also section 23 of Kenya HIV and AIDS Prevention and Control Act 14 of 2006. 272

See sections 20 and 21Uganda HIV/AIDS Prevention and Control Bill of 2009. 273

See Part v of Kenya HIV/AIDS Prevention and Control Act of 2006.

43

confidentiality in HIV/AIDS related matters. 274 Relating to deceased persons, both legislations

are explicit on the fact that their statuses are disclosed as prescribed by the law.275

The exceptions to confidentiality stipulated in both statutes are similar to the exceptions to

medical confidentiality which are stipulated in the Health Professional Guidelines of South

Africa. (HPSCA).276 The only difference between the HPSCA guidelines and the provisions of

Kenyan legislation is that Kenyan legislation also allows a power of attorney and oral consent

to be exceptions.277

There are also notable differences in the provisions of the Bill in Uganda and those of the Act

in Kenya. The Ugandan Bill is more concerned about observing confidentiality when it comes

to the identity of a person living with HIV/AIDS and is silent about observing confidentiality to

the identity of a deceased.278 Kenyan legislation on the other hand emphasizes the use of

identity codes as a means of observing the HIV-status of individuals whether or not they are

deceased.279 For the purposes of HIV/AIDS surveillance, the identification of a deceased

person is not a matter of concern in Uganda.280 What is of concern is the identity of a person

living with HIV and accurate data surveillance.281 Yet in Kenya it is a different case that has to

be prescribed by the Minister.282

Although the HIV/AIDS Bill in Uganda has not yet been promulgated, the provisions that relate

to the medical confidentiality of a deceased’s HIV-status, are drafted in such a way that the

ethical questions which medical practitioners in South Africa pose, are not of importance

when compared to the practitioner’s duty of honesty when disclosing a deceased’s health

274

Compare section 20 of Uganda HIV/AIDS Prevention and Control Bill of 2009 and section 21 of Kenya HIV/AIDS Prevention and Control Act. 275

See section 21(1) (e) of Uganda HIV/AIDS Prevention and Control Bill of 2009. The provision speaks of disclosure if authorized by any other law. Section 21(i) Kenya HIV/AIDS Prevention and Control Act 14 of 2006 authorizes the disclosure of a deceased’s HIV status pursuant to section 18 of the Births and Deaths Registration Act chapter 149 of 1972. 276

Compare Health Professionals Council of South Africa, Confidentiality: Protecting and Providing Information (2

ndedn Pretoria South Africa 2007) [3.2.6], section 22(1) (a), (b), (e), (h), (i) of Kenya HIV/AIDS Prevention and

Control act of 2006 and section 21(1) of Uganda HIV/AIDS Prevention and Control Bill of 2009. 277

See section 22 (1) (e) of Kenya HIV/AIDS Prevention and Control Act 14 of 2006. 278

See section 20 of Uganda HIV/AIDS Prevention and Control Bill of 2009. 279

See section 20 of Kenya HIV/AIDS Prevention and Control Act 14 of 2006. 280

See section 21(2) (f) of Uganda HIV/AIDS Prevention and Control Bill of 2009. 281

See section 21(2) (f) of Uganda HIV/AIDS Prevention and Control Bill of 2009. 282

See section 22(1) (g) of Kenya HIV/AIDS Prevention and Control Act 14 of 2006.

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information. The Bill addresses the fact that HIV/AIDS surveillance is important and an open

approach to HIV/AIDS should be adopted.283 The Kenyan Act on the other hand addresses the

importance of HIV/AIDS surveillance but it protects the identity of the deceased.284 Whether

this could imply an element of secrecy and stigma is dependent on a state. In South Africa,

Kenya’s use of identity codes would be constitutional and appropriate.

4.5 CONCLUDING REMARKS

The disclosure of a deceased’s HIV-status in a death notification form is only an issue in South

Africa. It cannot be disputed that in Uganda and in Kenya the disclosure of a deceased’s HIV-

status in a death notification form is prioritized for the purposes of HIV/AIDS surveillance. Yet

in Kenya like in South Africa, the identity of a deceased person is an issue when disclosing this

kind of information. Kenya probably makes use of identity codes to avoid stigma and

discrimination.

The issue of identity codes was never addressed by medical practitioners in Kenya they simply

adhere to the law despite its pitfalls. South African medical practitioners must adhere to the

law so that government can be able to plan for budget and expenditure. There is a likelihood

that the prevalence rate in South Africa can change if South Africa gets accurate statistics of

people who die of HIV/AIDS related illnesses.

283

See section 21(2) (f) of Uganda HIV/AIDS Prevention and Control Bill of 2009. Where it is stated ‘….Nothing in this section shall prevent disclosure of statistical or other information that could reasonably be expected to lead to the identification of the person to whom it relates. 284

See section 22(1) (g) of Kenya HIV/AIDS Prevention and Control Act 14 of 2006.

45

CHAPTER 5: CONCLUSION AND RECOMMENDATIONS

In writing this paper I had two aims. The main and most obvious one was to establish whether

it is ethical for a medical practitioner to disclose a deceased’s HIV-status in a death

notification form. The secondary aim was to explore the significance of the law in addressing

this issue. The paper sought to fulfil these two aims by examining the death registration laws

and the health professional guidelines in South Africa. The assumption at the beginning was

that it is ethical.

In testing this assumption, it has been shown that the disclosure of a deceased’s HIV-status in

a death notification form is ethical but medical practitioners interpret otherwise.285 Their

interpretation is based on administrative requirements that pattern to the BI-1663 form.286

The BI-1663 form involves a third party who is the undertaker in the death registration

process.287 Although the undertaker is involved in the death registration process, the only way

he can access the information concerning the deceased is if the death notification form he is

to submit to the Department of Home Affairs is not sealed.

It has been shown in this paper that Kenya like South Africa also has a third party involved in

the death registration process. 288 The difference between Kenya and South Africa is that

other parties apart from the medical practitioner and the undertaker are also involved in the

death registration process. 289 In Uganda other parties are also involved in the death

registration system but the difference between the Ugandan system and the South African

system is that all parties involved in the death registration process certify the correctness of

the information concerning the deceased’s death.290

285

DM Akinmusi, LD Molosi, ‘Low rate reporting of confirmed AIDS-related deaths using BI-1663 forms by private practitioners in the Mafikeng North West Province’ (2008)23 SAJEI 121. 286

K Joyner (ed) Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2010) 140. 287

DM Akinmusi, LD Molosi, ‘Low rate reporting of confirmed AIDS-related deaths using BI-1663 forms by private practitioners in the Mafikeng North West Province’ (2008) 23SAJEI 121. 288

See section 18(2) of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 289

See section 17 of Kenya Births and Deaths Registration Act Chapter 149 of 1972. 290

See section 16 and 23 of Uganda Births and Deaths Registration Act Chapter 309 of 1973.

46

A comparison between the South African death registration process and the Kenyan death

registration process revealed that it is ethical for a medical practitioner to disclose a

deceased’s HIV-status in a death notification form. Whatever pitfalls prevail the death

registration process should not be of concern to medical practitioners because the law makes

honest disclosure mandatory.

It has been shown that in Uganda the disclosure of a deceased’s HIV-status is not unethical.

Though this is policy oriented, Uganda has managed to address the fact that HIV surveillance

is more important for the purposes policy, government budget and expenditure.291 The paper

also revealed that central state action is important in addressing issues that concern the

disclosure of a deceased’s HIV-status. Uganda and Kenya both declared HIV/AIDS a national

problem.292 By prioritizing HIV/AIDS both states encouraged openness about HIV/AIDS as a

result ethical issues that surround HIV/AIDS were not an issue in completion of death

notification forms.

What is of importance is how Kenya and Uganda have managed to have considerable declines

in such environments. The question that is to be answered is what is being done in Uganda

and Kenya which South Africa is failing? The finding in this paper is that South Africa lacks an

open approach to HIV/AIDS and this has been evidenced by the fact that AIDS is not a

notifiable disease in South Africa.

A few general recommendations can now be made:

To deal with the ethical issues that surround the confidentiality of a deceased’s HIV-status,

the HPCSA guidelines should be incorporated into the Births and Deaths Registration Act.293 If

this is done medical practitioners will know the gravity of not disclosing a deceased’s HIV-

status in a death notification form. The HPCSA guidelines should also be incorporated in the

291

Joyner (n235). 292

For Uganda see, Jenny Kuper, ‘Law as a Tool: the Challenge of HIV/AIDS IN Uganda’ (Crisis States Programme Research Paper 69, 2005) <http://mercury.ethz.ch/serviceengine/Files/ISN/57565/ipublicationdocument_singledocument/3e382e96-d6e3-4bb6-950a-4a4b47f89556/en/wp69.pdf> (accessed 13-10-2013); see also James Putzel. ‘A History of State Action: The Politics of AIDS In Uganda and Senegal’<http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013). For Kenya see Janet Kawewa, ‘Situational Analysis on HIV/AIDS in Kenya (Department of Adult Education)’, < http://www.unesco.org/education/uie/pdf/Kawewa.pdf> (accessed 29-11-2013). 293

Births and Deaths Registration Act 51 of 1992.

47

Inquests Act. This is to elucidate on the fact that the laws that apply to natural deaths should

also apply to unnatural deaths.

Alternatively, explicit provisions on the disclosure of a deceased’s HIV-status on a death

notification form should be drafted in both The Inquests Act and The Births and Deaths

Registration Act. The legislators can emulate the provisions of the HIV/AIDS Prevention Act of

Kenya. They can also choose Uganda in the alternative but since the identity of the deceased

is topical in completing the BI-1663 form, the Kenyan provision is appropriate especially in a

legal environment like South Africa where human rights are topical.

The replacement of the BI-1663 form to the DHA-1663 form should be implemented. Even

though the DHA-1663 involves an undertaker in the death registration process, it is more

comprehensive and the undertaker does not submit the death notification form completed by

the medical practitioner he only submits the form he completes.294

The South African government should take the lead role in prioritizing HIV/AIDS and the

legislators should also draft legislation on HIV/AIDS that specifically deal with prevention of

the disease and the disclosure of a deceased’s HIV-status. The Kenyan HIV/AIDS Prevention

and Control Act and the Ugandan HIV/AIDS Prevention and Control Bill are good examples of

such legislation. South Africa can draft provisions that suit the current legal environment.

Finally, two points need to be made. It is vital to bear in mind that HIV/AIDS surveillance is

important to government planning. How surveillance may be carried out differs. In Uganda

the identity of a deceased is irrelevant yet in Kenya and in South Africa it is topical. Kenya uses

identity codes while South African medical practitioners chose to be dishonest about it.

Second medical confidentiality is not absolute but relative.295 A relative approach to medical

confidentiality should be adopted when completing a death notification form. That way

statistics on the number of people who die of HIV/AIDS related illnesses are not problematic.

294

David McQuoid- Manson and Mohammed Dada (n79)11. 295

J Adams, ‘Competition in Medical Ethics’ (1990)16 BMJ 196-197.

48

BIBILIOGRAPHY

Books

Buchell J South African Criminal Law and Procedure (4thedJuta& Co Ltd, Cape Town 2011)

Dada M, McQuoid-Manson D Introduction to Medico-Legal Practice (Butterworths Durban

2001)

Greene B Understanding Medical Law (Oxford University Press 2005)

Heaton J The South African Law of Persons (4thed Lexis Nexis 2012)

Ignatieff M Human Rights as Politics and Idolatry (Princeton University Press 2001)

Joyner K (ed), Aspects of Forensic Medicine (Juta& Co Ltd, Cape Town 2011)

Kemp G, Walker S, Palmer R, Banqwa D Criminal Law in South Africa (Oxford University Press

Southern Africa 2012)

MacQuoid-Manson D, Dada M A-Z of Medical Law (Juta& Co Ltd Cape Town 2011)

Moodley K Medical Ethics, Law and Human Rights: A South African Perspective (Van Schaik

2011)

Pattison S Medical Law and Ethics (Cambridge University Press 2006)

Van der Walt AJ, Piennar GJ Introduction to the Law of Property (6thedJuta& Co Ltd, Cape

Town 2009)

Wenar, Lief, Zalta (ed) The Stanford Encyclopaedia of Philosophy (Winter 2012 ed)

<http://plato.stanford.edu/entries/rights/> (accessed 02-03 -2014)

Case Law

Allpass v Mooikloof Estates (Pty) Ltd t/a Mooikloof Equestrian Centre [2011] 2 SA 638

Bootes v Eagle Ink Systems Kwazulu-Natal (Pty) Ltd [2008] SA 291, ILJ 139 LC

Hoffman v South African Airways [2001] 1 SA 1

Irvin and Johnson Ltd v Traler and Live Fishing Union and Others [2003] SA 4 BLLR 379 SALC

Jansen van Vuuren v Krugger [1993] 4 SA 856

Joy Mining Machinery v National Union of Metal Workers of South Africa and Others [2002]

SA 23 ILJ 391 SALC

NM and others v Smith (Freedom of Expression Institute as Amicus Curiae) [2007] 5 SA 250

South African Human Rights Commission v SABC and Another [2003] SA SABCT

VRM v Health Professionals Council of South Africa [2003] JOL 11944

49

Legislation

Births and Deaths Registration Act 51 of 1992 (sections 15(3) and 31)

Declaration of Geneva, World Medical Association (adopted 1948, Amended 1961, 1983)

East African Regional Community HIV/AIDS Prevention and Management Bill of 2012 (section

26 (c))

Health Professionals Act 56 of 1974 (section 56)

Inquests Act 58 of 1959 (section 2(1))

Kenya Births and Deaths Registration Act Chapter 149 of 1972 (section 17, 18 and 19)

Kenya HIV/AIDS Prevention and Control Act 14 of 2006 (Part V)

Medico-Legal Practice Committee of Kenya National Patients’ Rights Charter of 2012 (section

8)

National Health Act 61 of 2003 (sections 14, 90,91and section 92)

Promotion of Access to Information Act 2 of 2002 (section 14)

Uganda Births and Deaths Registration Act Chapter 309 of 1973 (section 17, 18, 23 and 25)

Uganda HIV/AIDS Prevention and Control Bill of 2009 (section 3, 4, 20, 21and 22)

Universal Declaration of Human Rights (adopted 10 December 1948, UNGA Res 217 A III

UHHR), Preamble

Wills Act 7 of 1953

Regulations

2012 Draft Regulations on the Births and Deaths Registration Act 51 of 1992 (Annexure 14-16)

Gazetted Regulations Regarding the Rendering of Forensic Pathology Service in the National

Health Act 61 of 2003

Journal Articles

Adams J, ‘Competition in Medical Ethics’ (1994) 16BMJ 196-197

Akinmusi DM, Molosi LD, ‘Low rate reporting of confirmed AIDS-related deaths using the BI-

1663 forms by private practitioners in the Mafikeng, North West Province’ (2008)23 SAJEI 21

Cruft R, ‘Rights Beyond Interest and Will Theory?’ (2004)23 LAP 347-349

Curran E, ‘Hobbes’s Theory of Rights: A Morden Interest Theory’ (2002) TJ E 85

Dhai A et al, ‘Confidentiality- A Dying Wish?’ (2001)91 SAMJ 124

50

Gillion R, ‘Medical Ethics: Four Principles and attention to scope’ (1994) 309 BMJ 2

Gillion R, Ethics needs principles-four can encompass the rest for autonomy should be “first

among equals” (2003) JME 159-160.

Knapp van Bogaert D, ‘Common ethical issues related to HIV/AIDS’ (2011) SAFPJ 53 605-607

Lawrence DJ, ‘The Four Principles of Biomedical Ethics: A Foundation for current Bioethical

Debate’ (2007) 14 JCIH 35

Mack E, ‘In Defence of the Jurisdiction Theory of Rights’ (2000) 4 TJE 92

Mae P, ‘Medical Confidentiality and the Public Disclosure of HIV status’ (2004)8 JSLP 158

Manuel C, ‘The Ethical Approach to AIDS’ (1990) 16 JME 17

McQuoid-Manson D, ‘Disclosing the HIV status of deceased patients-ethical and legal

implications’ (2007)10 SAMJ 920-922

McQuoid-Manson D, ‘Michael Jackson and the limits of patient autonomy’ (2012) 5 SAJBL 12-

13

Meyer WH, ‘Confirming, Informing and Falsifying Theories of Human Rights’ (1999) 21 HRQ

221

Rao C, Bradshaw D and Mothers C, ‘Death Registration and Statistics in Developing Countries:

Lessons from Sub-Saharan Africa’ (2004)9 SAJD 86-87

Rosenblatt A, ‘International Forensic Investigations and Human Rights of the Dead’ (2010) 32

HRQ 928 -929

Sherman J, ‘A New Instrumental Theory of Rights’ (2010) ETMP 215-218

Smolensky KR, ‘Rights of the Dead’ (2004)37 HLR 765-771

Spencer D, ‘Medical Ethics and Politics of the South African HIV/AIDS Epidemic’ (2006) 51

SAJHIVMED 51-52

Tsai DFC, ‘The bioethical principles and Confucicus’moral philosophy’ (2005) JME160-161

Wilkinson TM, ‘ Last Rights: The Ethics of Research on the Dead’ (2002)19 JOAP 31-34

Thesis

Frydrych DG, ‘Taking Rights Way Too Seriously: Kant, Hohfeld and Evaluating Conceptual

Theories of Rights’ (Master of Laws, University of Toronto 2010)

51

Online Sources

Bently K, ‘The Foundations of Rights Reconsidered: Enforceable Rights, Liberty and Conflict

Rights’ (Department of Government and University of Manchester Paper) (accessed 31-08-

2012)

<http://www.socialsciences.manchester.ac.uk/medialibrary/politics/research/workingpapers/

mancept/KBMANCEPTpaper.pdf> (accessed 18-01-2014)

Bagherzadeh N , ‘Death in Disaster’ < http://www.ruhr--uni-

bochum.de/ifhv/documents/workingpapers/wp4_2.pdf > (accessed 09-09-2014)

Chopra Dr M, Lawn J E, Barron P, Prof D Sanders, Lancet Health series South Africa: Achieving

the health Millennium Development Goals for South Africa: Challenges and Priorities

<http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(09)61122-3/fulltext >

East African Legislative Assembly, (EALA) ‘EALA passes Regional Bill on HIV/AIDS’

<http://www.eala.org/media-centre/press-releases/343-eala-passes-regional-bill-on-hiv-and-

aids-htlm > (accessed 19-12-2013)

Glover J, ‘International Congress on Medical Ethics in Teharan’ (Speech at the International

Congress in Teharan) <http://www.jonathanglover.co.uk/philosophy-beliefs-and-

conflicts/international-congress-on-medical-ethics-teheran > (accessed 12-09-2012)

Grimwood Dr A, Achmat Z, Pillay K, ‘Health Portfolio Committee: HIV/AIDS Notifiability

Briefing’<http://www.workinfo.com/free/sub_for_legres/data/991012pchealth.htm>

(accessed 31-08-2012)

Hastings M, ‘For an Interest Theory Conception of Human

Rights’<http://www.academia.edu/3023745/For-an-Interest-Theory-

Conception_of_Human_Rights> (accessed 18-01-2013)

Health Professionals Council of South Africa, ‘Confidentiality Protecting and Providing

Information’ (2nded Pretoria, South Africa 2007)

Hoffman SZ, ‘HIV/AIDS in Cuba: A Model for care or an Ethical Dilemma?

<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2688320/> (accessed 10-09-2013)

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘Opening up the HIV/AIDS epidemic’

<http://www.who.int/ethics/topics/opening_up_ethics_and_disclosure_en_2000.pdf>

(accessed 29-06-2012)

Joint United Nations Programme on HIV/AIDS (UNAIDS). ‘The Kenya AIDS epidemic update

2011’

52

<http://www.unaids.org/en/dataanalysis/knowyourresponse/countryprogressreports/2012co

untries/ce_KE_Narrative_Report.pdf> (accessed 06-07-2012)

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘The Role of Name-Based Notification

in Public Health and HIV/AIDS Surveillance’

<http://www.who.int/hiv/strategic/surveillance/pubunaids0028/en/> (accessed 29-06-2012)

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘UNAIDS Board Members learn about

Kenya’s AIDS response’

<http://www.unaids.org/en/resources/presscentre/featurestories/2011/november/20111128

pcbkenya/> (accessed 19-11-2013)

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘World AIDS Day Report

2011’<http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication

/2011/jc2216_worldaidsday_report_2011_en.pdf> (accessed 06-07-2012)

Joint United Nations Programme on HIV/AIDS (UNAIDS), ‘Zambia learns from Kenya’s

experience in developing HIV programmes for key populations at higher risk’

<http://www.unaids.org/en/resources/presscentre/featurestories/2012/october/20121017za

mbiakenya/> (accessed 19-11-2013)

Kawewa J, ‘Situational Analysis on HIV/AIDS in Kenya’ (Department of Education)

<http://www.unesco.org/education/uie/pdf/Kawewa.pdf >(accessed 29-11-2013)

Krammer M, ‘Some Doubts about the Alternatives to the Interest Theory of Rights’ (Legal

Research Paper

Series)<http://www.researchgate.net/publication/228213261_some_doubts_about_Alternati

ves_to_the_Interest_Theory_of_Rights > (accessed 07-09-2013)

Kupper J, ‘Law as a Tool: The Challenge of HIV/AIDS in Uganda (Crisis States Programme

Development Research Paper 69, 2005)

<http://mercury.ethz.ch/serviceengine/Files/ISN/57565/ipublicationdocument_singledocume

nt/3e382e96-d6e3-4bb6-950a-4a4b47f89556/en/wp69.pdf> (accessed 13-10-2013)

McCormick TR, ‘The place of principles in bioethics’<https://depts.washington.edu/bioethx/tools/princpl.html> (accessed 05-06-2014). Muula A, Mfutso-Bengo J, ‘When is Public Disclosure of HIV Serepositivity Acceptable? <http://www.ndr.mw:8080/xmlui/bitstream/handle/123456789/297/When%20is%20public%20disclosure%20of%20HIV%20seropositivity%20acceptable.pdf?sequence=1> (accessed 06-07-2012)

53

Ngome J, ‘Reporting on HIV/AIDS in Kenya’ (Nieman Report at the Nieman Foundation at

Harvard 2003) <http://www.nieman.havard.edu/reports/article/101179/Reporting-on-

HIVAIDS-in-Kenya.aspx > (accessed 10-11-2013)

Putzel J, ‘A History of State Action: The Politics of AIDS in Uganda and Senegal’

<http://rds.refer.sn/IMG/pdf/16PUTZEL.pdf> (accessed 10-11-2013)

Rendtorff JD, ‘Basic Principles in Bioethics and Bio law’

<http://www.bu.edu/wcp/Papers/Bioe/BioeRend.htm> (accessed 09-09-2013).

Sherman J, ‘Rights Reasons and Legitimate Authority’

<http://webspace.utexas.edu/.../Sherman%20-

%20%20Rights,%20Reasons%20and%20Legitimate%20Authority> (accessed 06-08-2013)

Tumushabe J, ‘The Politics of HIV/AIDS in Uganda’ (Social Policy and Development Programme

Paper)

<http://www.unrisd.org/80256B3C005BCCF9/(httpAuxPages)/86CB69D103FCF94EC12572300

0380C60/$file/tumushabe-pp.pdf(accessed 23-11-2013)

UKCEN (Clinical Ethics Network), ‘Introduction to Ethical

Considerations’<http://www.ukcen.net/uploads/docs/ethical_issues/confidentiality.pdf>

(accessed 09-09-2012)

Newspaper Articles

Flanagan L, ‘Stats SA in bid to get accurate data on deaths: Information Vital for health plans,

policies’ Independent<http://www.iol.co.za/the-star/stats-sa-in-bid-to-get-accurate-data-on-

deaths-1.1117346#346UzQInsfuypQ> (accessed 06-07-2012)

Nalago M, Uganda Assents to the Regional HIV/AIDS Bill’ Trade Mark (Kampala 20 March

2013) < http:// http://www.trademarkea.com/museveni-assents-to-the-regional-hivaids-bill/>

(accessed 13-12-2013)

SAPA, ‘Health Systems Trust: SA Postpones for making HIV/AIDS a Notifiable Disease’ Health

Systems Trust (South Africa 2004)

<http://www.hst.org.za/news/south-africa-postpones-plans-making-hivaids-notifiable-disease

> (accessed 31-08-2012)

54

Anonymous , ‘Doctor Cleared of Unprofessional Conduct’ Independent on line (Pretoria 18

Nov 2008) <http://www.iol.co.za/news/south-africa/doctor-cleared-of-unprofessional-

conduct-1.395416#UzR_IIyfuypQ> (accessed 15-08-2012)

Anonymous, ‘Watershed AIDS case for SA’ News24.com (Pretoria 22 November 2006)

<http://www.news24.com/SouthAfrica/News/Watershed-Aids-case-for-SA-20061122>

(accessed 15-08-2012)

55