Post on 02-Feb-2023
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
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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
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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
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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
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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
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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.
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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
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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
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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.
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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
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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
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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).
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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
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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
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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
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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.
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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.
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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.
PROTECTING DIVERSITY THROUGH POLICY 20
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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