Protecting Diversity through Policy.

Running head: PROTECTING DIVERSITY THROUGH POLICY 1

Protecting Diversity through Policy: The Effectiveness and

Shortcomings

Of The Genetic Information Nondscrimination Act of 2007.

Jared M. Campbell

Savannah State University

PROTECTING DIVERSITY THROUGH POLICY 2

Abstract

This paper investigates the effectiveness and shortcomings of the

Genetic Information Nondiscrimination Act of 2007 (GINA) by

exploring three distinct vulnerable diverse people: Black

Americans, Native Americans, and unborn children. The articles

reviewed offer differing perspectives. GINA paved the way for the

Human Genome Project to gain momentum by protecting individuals

who would benefit the most from genetic testing. Findings over

the past ten years have led to scientific discoveries into

prevention of diseases and how to best deal with treating those

with the predispositions of said diseases. Additionally

discussed are the ethical concerns for the diverse population

this policy protects and effects on social policy.

Keywords: GINA, human genome project, discrimination, insurance,

employment, diversity


Protecting Diversity through Policy: The Effectiveness and

Shortcomings of the Genetic Information Nondiscrimination Act of

2007.

The term diversity, defined in Webster’s dictionary, is a

state of difference, dissimilitude, unlikeness, multiplicity of

difference, multiformity, or variety (Webster-Dictionary, 2009).

This diversity both strengthens and weakens the bond of the

people of America. From the beginning of this great melting pot,

America has had its share of triumph and shame among the people


who make up this nation. Over the course of American history,

problems have occurred dealing with its diversity. When these

diversity issues happen, policies are implemented to intervene or

protect vulnerable populations (Finney, 2013). Examples of such

policies are the abolition of slavery, women's rights, and

unemployment compensation. Health reform has been an issue for

years. Creating policies that will afford Americans opportunity

access to adequate medical treatment has been a growing concern.

Oppressed people find themselves lacking in basic needs, but when

policies are created, they sometimes have negative effects on

that population. Finding a balance between benefiting oppressed

populations and minimizing inadvertent harm from policies created

have proven to be difficult. In 2008, President Bush signed into

law The Genetic Information Nondiscrimination Act (GINA) (Budget,

2007). This policy was written to stop the discrimination of

using an individual's genetic information to withhold health

insurance benefits and employment opportunities from oppressed

populations.

Literature Review


In 1987, the Department of Energy initiated the Human Genome

Project (HGP). This scientific research was tasked to find the

sequence of chemical base pairs that forms human DNA (DeLisi,

2008). On April 14, 2003, the project was completed with the help

of multiple scientists working in concert from around the world

(Green, 20013). GINA was initiated to remove the fear of clinical

genetic testing. The policy banned health insurance companies and

employers from discriminating against individuals based solely on

their genetic information (Prince & Berkman, 2012). Participate

in the HGP allowed scientists to collect data for research and

develop preventative measures for diseases.

The improper use of genetic information during the 1970’s

contributed to the creation of GINA. Doctor Robert Murray recalls

during the 1970’s of how human subjects were ostracized, deprived

employment, educational opportunities, and health and life

insurance because of the study they participated in for the

testing of Sickle Cell Anemia (Murray, JR., 2005). The

participants were not individuals that the disease had manifested

in, but rather individuals who had the gene for this disease. The

Department of Defense had commissioned the National Academy of


Science to investigate the deaths of four black army recruits who

had died during extreme exercise. The findings indicated no

correlation between the deaths and the sickle cell trait of the

disease. Somehow, individuals with the disease were not

identified during the medical examination. The recommendation of

the committee, which Dr. Murray chaired, was to test for the

disease and prevent individuals with sickle cell anemia from

entering the military. The test was easy to administer but was

not precise enough to distinguish between the disease and the

cell trait. Richard Nixon signed into law the National Sickle

Cell Anemia Control Act on May 16, 1972 (Richard , 1972).

Initially, Black Americans were excited about the event, but over

time became anxious due to discrimination brought on by testing.

This is an example where a policy created for an oppressed group,

resulted in harming the vulnerable population it was created to

protect.

Advances in genetic research increase as our understanding

of human DNA expands (Naidoo, Pawitan, Soong, Cooper, & Ku,

2011). These advances in genome science are paving the way for

future studies of complex diseases and traits. There are over


1000 genome projects currently operating around the globe. Two

particular groups that will benefit from genetic research are the

American Indian and Alaskan Native peoples (Bowekaty & Davis,

2003). Conversely, Bowekaty elaborates that American Indians and

Alaskan Natives are reluctant to take part in genetic research.

The beliefs or ‘superstitions’ of these groups promote scientific

ignorance. The spiritual beliefs are often very different than

the cultural mores of the scientists who perform the genetic

research. For instance, the concept of ‘ours’ comes into play.

American history is painted with events such as the Trail of

Tears where American Indians were forcefully relocated after

their kingdom was stolen from them. This ‘theft’ has been an

overriding experience in how American Indians view Caucasian

Europeans. Their land was stolen, family members were killed or

forced into slavery, and children were taken for adoption into

white families. Religious artifacts were stolen and Indian

symbols were placed on entertainment venues such as baseball and

football teams. Forced indoctrination of Western culture upon the

indigenous people of North America has been more egregious than

all other atrocities.


American Indians and Alaskan Natives seek forgiveness and

respect from the United States government. For these people,

parts of their body (hair, blood, semen, and saliva) are sacred.

In order for them to give up part of who they are, respect must

be garnered. Their socio-cultural environment is vastly different

from a typical American. Native American people’s view of

Caucasians parallels that of African Americans whose lineage

suffered similar horrors. Nevertheless, unlike African Americans,

Native American’s still yet do not have equitable civil rights.

The final groups this paper will cover are the unborn. The

unborn refers to the child in a pregnant woman’s womb and

countless generations not yet conceptualized. First, let us

tackle embryos and fetuses. Medical advances in testing for

diseases and disabilities allow genetic tests to be administered

to a fetus in the womb to determine possible life threatening

conditions (Chipman & Schwartz, 2006). These tests have

implications for decisions made by the parents' choice to abort

the fetus or allow nature to take its course. Individuals and

organizations endorsing the use of such test to settle the fate

of a person, argue that informed decisions can only be made with


purposeful testing. Information is important when deciding to

care for a child with a life-threatening ailment. Does one have

the right to not suffer through watching some other living person

needlessly suffer and die prematurely? Chipman states:

I argue that this choice is drastically limited by social

coercion through a discriminatory stereotyped perception of

the disabled community. Permitting an uncontrolled barrage

of prenatal genetic tests will further promote the

stereotype of a disabled life, and thus hinders our societal

goal to recognize and promote equality and individuality.

Which disabilities to test for, or what genes to search for,

is a judgment that should be made only through extensive

consultation with members of the disabled community,

including individuals who have suffered from or who have

been directly associated with the disability which is to be

tested. (p. 14)

Another aspect of genetic testing revolves around germ line

testing. Germ cells (sperm or eggs), are modified by introducing

functional genes (healthy) into its genome. This cell grows into


a zygote, which forms the rest of the human body (Sheridan,

2011). In an interview, Bob Abernethy asked Dr. Francis Collins,

the director of the Human Genome Project at the National

Institutes of Health, how genes can be manipulated or replaced to

prevent diseases without passing on the changes to future

generations. She replied:

So, my sense is we should not at the present time — even for

the attempt to reduce the likelihood of disease — alter the

germ line. That is the DNA that’s going to get passed on to

future generations. We do not know the consequences of that.

In addition, if this is an alteration, which has other

effects that we are not able to perceive until a couple of

generations go by, what have we done? I think we should have

an absolutely strict moratorium on any manipulations of the

human germ line for the present time, because we don’t know

how to do that safely. (Collins, 2000)

Collins also said that if our goal was to eliminate part of the

population, what does that say about our willingness to accept

diversity.


Discussion

As is typical of new legislation, GINA’s goal when drafted

was far reaching. The major push behind the legislation was to

insure the protection of individual’s personal genetic health

information. Statements by Murray and Collins indicate how

policies can have a domino effect in regards to ethical concerns

and how legislation affects other policies already in place.

Implications for social service agencies and social work

practitioners

On October 7, 2009, the National Archives and Records

Administration (NARA) published the Federal Register to update

policy changes due to GINA (Rules and Regulations, 2009). This

35-page document contains revisions for the Department of the

Treasury (Internal Revenue Service), Department of Labor

(Employee Benefits Security Administration) and the Department of

Health and Human Services (Centers for Medicare and Medicaid

Services and the Office of the Secretary).

Department of the Treasury. The IRS bulletin 2009-48

discussed the Interim Final Rules mandated by GINA. (Internal


Revenue Bulletin: 2009-48, 2009). The bulletin covers the group

and individual markets pertaining to health insurance premiums.

Although the IRS does not regulate insurance companies, it does

enforce tax law. The changes to tax laws were limited to credits

for premiums paid by either business or individuals. The overview

reiterated that GINA prohibited the use of genetic information to

be taken into consideration for the following reasons: increasing

group premium or contribution amounts, requiring individuals or

families to undergo genetic testing, and requiring genetic

testing prior to enrollment or at any time for underwriting

purposes.

An example of the implications for social services and

social work practitioners is Oncology Centers. Social workers and

private practitioners who offer services to individuals with

cancer should be aware of the benefit that GINA offers their

clients (Stecks & Eggert, 2011). The protection from

discrimination in health insurance coverage was critical in

receiving the mental health services provided by these agencies

and practitioners. Comorbidity of depression is high for patients

dealing with life threatening diseases and individuals involved


in pain management (Massie & Holland, 1990). GINA offers

individuals continued insurance benefits for mental health

related issues while being treated for biological diseases.

Department of Labor. Title I & II of GINA affected Health

Insurance and Employment. Title I through HIPAA (Health Insurance

Portability and Accountability Act), amended the Employee

Retirement Income Security Act (ERISA). Title II through the

Equal Employment Opportunity Commission (EEOC) governs the

changes in employment agencies. GINA strengthens HIPPA’s

protections by including preexisting condition exclusion

provisions based on any health factor including genetic

information (DOL, 2009). The EEOC and Fabricut settled the first

lawsuit that the EEOC filed under GINA on May 7, 2013. The

employer required the employer to have a physical as part of the

promotion process. The employee, diagnosed with a disability

considered a detriment for the position, was denied the

promotion. Rescinding a promotion offered to an employee on the

grounds of medical history is an obvious violation of GINA and

the employee was awarded $50,000 in court ordered damages (EEOC,

2013).


Department of Health and Human Services. The publication

released on January 25, 2013 by the NARA strengthened the privacy

protections for genetic information by implementing section 105

of Title I of GINA to HIPAA (Rules and Regulations, 2013). This

change is expected to have a major effect on the American economy

of around $100 million dollars each year. These costs include

distributing privacy notices from HIPAA, compliance

notifications, ensuring subcontractors are compliant with

business associate agreement requirements, and compliance with

the Security Rule for business associates. Disseminating the

information and ensuring that all participants are compliant with

HIPAA and GINA are paramount to ensuring no violation of policy

occurs.

From a large picture objective view, social service agencies

and social work practitioners have benefited from GINA due to

research by the HGP. The Biopsychosocial model was first

introduced by George L. Engle (Engel, 1977). The idea that an

individual should be assessed, diagnosed, and treated as a whole

person gained momentum over the next few decades. Evidence-based

practice has become a standard in social work. The discoveries


made by the HGP continue to provide social workers and

practitioners understanding of effective treatment.

Evolution of social welfare policies

Technology is all around us. From the cell phone, personal

computers, high-end super-computers used by research groups,

banking and credit algorithms, and government agencies,

technology moves the world today. Social welfare policies and

social work are affected in the same way. With advanced knowledge

of human DNA, researchers have been able to form a consensus for

cures to diseases that have plagued humanity for generations.

Over the past century, life expectancy has gone from the early

40’s to the upper 70’s. What will happen over the next 100 years?

It is not overreaching to imagine that life expectancy could

exceed well over 100 years.

Social work deals with meeting people where they are. Social

workers help individuals with issues that often seem overwhelming

to them. The issues of race, ethnicity, and culture help define

diversity. Because of GINA, more individuals participated in the

project by offering samples of their DNA for testing. One of the


more telling aspects of the HGP was the mapping of human

migration. For around $150, an individual can learn of their true

heritage. No aimless wandering around Ancesty.com hoping to find

a long lost relative. This Genographic project has enlightened

over half a million individuals where their ancestors originated

and what migratory routes taken to end up where you are today.

For social workers, giving individual evidence-based ancestry

research is the ultimate in utilizing the strengths-approach. An

individual who feels alone and alienated may find individuals who

have similar heritage all around them. How encouraging to be

surrounded by others that share commonalities.

Intended Impact

The intended impact of GINA was to help protect individual’s

genetic information and encourage the population to participate

in the Human Genome Project. Overall, the policy was a large

success. The project finished years ahead of schedule and has

given scientific insight into the causes of diseases (Naidoo,

Pawitan, Soong, Cooper, & Ku, 2011). Some would disagree and say

that the long awaited cures to diseases are coming in too slowly


and that the three billion dollars spent on the project has been

a waste of resources.

Ethical and interpretive issues

The chance of not having opponents on any given issue is

invalid. If there were only one reason for the disagreement over

ethical issues and how they're interpreted, it would have to be

diversity (Badzek, Henaghan, Turner, & Monsen, 2013). Everyone

has an idea about what is right and wrong, unfortunately finding

consensus is uncommon. The issue with the amount of money and the

lack of return has sparked opposition to the project. Faith and

religion also play a large role in the debate. The largest

ethical issue that has come from the HGP and GINA is the issue of

genetic testing on the unborn. Depending on whether you are pro-

life or pro-choice will determine how you feel about the issue.

Pro-lifers call abortion for any reason murder and pro-choice

advocates call it a humane, educated choice.

Conclusion

Has the Genetic Information Nondiscrimination Act been

beneficial to the community? The answer would be, yes it has.


This opinion, substantiated by the simple fact that multiple

sections of GINA were implemented into policies, makes this

legislation a success (Budget, 2007; DOL, 2009; Rules and

Regulations, 2009 & 2013). Talking with social workers in

different disciplines of practice has given the belief that

advances in medicine are helping professionals. Protecting

clients' rights to health care access creates a healthy clinical

setting where therapist and counselors are allowed to continue

the much needed intervention clients need.


References

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Bowekaty, M. B., & Davis, D. S. (2003). Cultural issues in genetic research with american indian and alaskan native people. IRB: Ethics and Human Researech, 25(4), 12-15. Retrieved 10 31, 2013, from http://www.jstor.org/stable/3563819

Budget, O. o. (2007). Statement of Administration Policy (H.R. 493-Genetic Information Nondiscrimination Act of 2007). Washington, DC: U.S. Government Printing Office.


Chipman, P., & Schwartz, M. (2006). Bioethics without borders: The moral implications of prenatal genetic testing. Penn Bioethics Journal,II(ii), 13-16.

Collins, F. (2000, June 16). Bob Abernathy's interview with Dr. Francis Collins, Director of the Human Genome Project at the National Institures of Health. Human Genome Project. (B. Abernathy, Interviewer) R&E. PBS.

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