Genetic Information Nondiscrimination Act (GINA)

Will It Protect You?

 

May 22, 2008

B McClain

 

 

The continued lack of trust of the American people to undergo genetic testing has prompted Congress to enact the Genetic Information Nondiscrimination Act (GINA)1.   On May 21, 2008 President Bush signed GINA into law, constituting the first federal edict against employers or health insurance companies in obtaining and using genetic information to discriminate against an individual.  Yet the million dollar question remains…. will GINA in all practicality actually protect you?  The answer may prove disappointing to the public.

 

Historically many people with a possible predisposition to a specific genetic illness have opted not to undergo genetic testing despite possible benefits.  Much of their apprehension has been due to the lack of clarity in laws regarding the privacy of their genetic records.  The loss of health and life insurance as a consequence of genetic information being inadvertently or purposely released has devastating impacts on an individual and family.  The fear of possible employment discrimination and incurring higher medical costs has also been a factor in choosing to decline a genetic test.

 

Not only personal, but societal concerns play a part in the avoidance of genetic testing.  Eugenics, a philosophy advocating the improvement of human genetic traits through social or technical intervention, had a rather troubling and unfortunate history which began in the United States in the early 1900’s.  It led to various state-sponsored sterilization programs in which over 65,000 individuals, defined as “genetically unfit”, were forced to undergo compulsory sterilization.  This ideology became vogue and soon propagated around the world sterilizing the mentally ill, mentally retarded, blind, deaf, autistic, epileptics and persons of specific races.2   Eugenics fell into disfavor after WWII when Hitler used it as a rationale to exterminate the Jews. 

 

Today, however, with the advancements in genetic, genomic and reproductive technologies, controversial ideological applications of eugenics to “better mankind” have once again resurfaced and have become popular in pockets of academia and the public within the United States.3,4,5,6  Hence, the potential for misuse of genetic identity through various prospective state-sponsored eugenics programs has also played a role to enhance the public’s mistrust to obtaining genetic testing. 

 

Medical research has also been negatively affected by the fear and mistrust of genetic testing. Genetic researchers at times are not able to obtain sufficient DNA samples from groups of individuals to adequately perform genetic studies.  Valuable genetic research may be impeded due to the fear of genetic testing.

 

So how does GINA attempt to limit abuse and encourage research? 

 

GINA admittedly contains legal language to: 1.) protect the privacy of genetic testing results and 2.) protect against health insurance providers and employers from acting in a discriminatory manner by using genetic information.  That being said, unfortunately, GINA contains sufficient weaknesses pertaining to both of these points that may render the new federal law ineffective.

 

Before the public runs haphazardly to their local doctor for a genetic test, they should first come to understand three major limitations of GINA in order to make an informed decision: 

 

  1. GINA does not fully protect the privacy of your genetic information or genetic identity. 
    1. GINA defines “genetic testing” as a medical record under HIPAA law.  Unfortunately, HIPAA has had an abysmal record for protecting an individual’s rights and privacy of their medical records.7   In a three year study ending in 2006, only 2 cases out of 19,420 HIPAA grievances were prosecuted.  Not one of those 19,420 grievances ended with a single civil fine.  In fact, it is perfectly legal under HIPAA for a doctor under certain situations to release personal health information without the patient’s consent and knowledge.  A physician, at his discretion, if he deems it medically necessary which in itself has broad definitions, can even disregard a specific written privacy request from a patient.  Release of medical information occurs more often than the public realizes. And it is entirely legal under HIPAA.  Many patients have alarmingly discovered often too late, after the damage is done, that HIPAA does not adequately legally protect the privacy of their medical records.  Since GINA defines genetic test results as a medical record under HIPAA law, it is important for the public to realize that their genetic test results are, therefore, not fully protected in regards to confidentiality and privacy.

 

  1. GINA does not protect you against discrimination within the life insurance industry.
    1. Your ability to obtain life insurance is at risk if you undergo a genetic test.  GINA protects you against employment and health insurance discrimination, but NOT against life insurance discrimination.  If your life insurance company finds that you have a predisposition for any genetic illness, they can legally deny you life insurance or raise your rates.  Even if you are asymptomatic for this genetic disease, once you have a “black mark” within your insurance profile due to a genetic test, it will negatively affect all future attempts to obtain life insurance. Unfortunately, you have no legal remedy under GINA regarding life insurance discrimination.

 

  1. GINA contains legal loopholes weakening its ability to defend against discrimination
    1. GINA does not provide you protection if you have a pre-existing medical condition.  This throws a monkey wrench in the equation when it comes to offering discrimination protection under GINA.  For example, if a health insurance company inadvertently or secretly finds that you have a genetic predisposition for a disease, they could deny health insurance coverage based on your, lets say,  pre-existing high cholesterol condition while feigning any implications or knowledge to your genetic test results.  Your battle in court would prove very difficult to win in this case.  In addition, if you have undergone any “non-genetic” tests that indicate you have a genetic or metabolic illness of any kind, GINA cannot protect you whatsoever.  Pre-existing medical conditions create a huge loophole, making the prospective effectiveness of GINA questionable at best.

 

Genetic testing can offer some patients valuable information for future healthcare decisions.  Benefits may include early detection of disease.  In some cases it may even delay or prevent the onset of a disease by enacting early interventions.  Despite these benefits, patients need to be well informed of the risks involved regarding their privacy rights and the possible discrimination that can occur after taking a genetic test.  Since GINA does not appear to fully protect an individual against abuse and may prove very difficult to battle in court, the public should seriously consider keeping their genetic tests private until GINA has been truly “tested by fire” in the courts.

 

If genetic testing is important to the future of your health, you may want to seek testing where you pay for it privately without involving an insurance company.  Make sure that you are provided with a confidentiality statement from the independent company or academic lab that is doing the testing.  This should provide some assurance that your test result will remain confidential and not be released.  You may want to request that all of your excess DNA samples are destroyed and not used for any other purposes.  Before you undergo a genetic test, discuss with your doctor the possibility in having the prospective genetic test results omitted from your medical file with all copies provided directly to you in order to ensure confidentiality.  

 

Time will tell just how effective GINA will work in protecting genetic identity against abuse.  But in the mean time take measures to protect the privacy of your genetic test results as best as you can.  It is in your best interest to do so.  It is your responsibility to do so since GINA appears to provide only limited protection.

 

 

References:

 

1.  United States Congress.  The Genetic Information Nondiscrimination Act of 2008 (H.R.493.ENR), Available at:  http://thomas.loc.gov/cgi-bin/thomas; Accessed on May 21, 2008

 

2. Wikipedia, Compulsory Sterilization, Available at : http://en.wikipedia.org/wiki/Forced_sterilization. Accessed on May 22, 2008

 

3.  Leake, Jonathan, DNA pioneer James Watson is blacker than he thought.  TIMESONLINE.  Available at: http://www.timesonline.co.uk/tol/news/uk/science/article3022190.ece.  Accessed May 22, 2008.

 

4. McKie, Robin, Harris, Paul.  Disgrace:  How a giant of science was brought low.  The Observer. Available at: http://www.guardian.co.uk/uk/2007/oct/21/race.research.  Accessed May 22, 2008.

 

5.  Savulescu J., Foddy B.  To Gattaca and Beyond. The Age Company Ltd.  Available at:  http://www.practicalethics.ox.ac.uk/Media/Gattaca_29April.pdf.  Accessed May 22, 2008.

 

6.  Nicolson, Cynthia Pratt. Baa! The Most Interesting Book You’ll Ever Read about Genetics and Cloning.  Toronto, Ont. Kids Can Press. (p36 “Perfect Babies”)

 

7.  Stein, Rob. Medical Privacy Law Nets No Fines, Lax Enforcement Puts Patients’ Files At Risk, Critics Say.  Washington Post, June 5, 2006

 

 

Written by Becky A McClain, director@cpab.info; www.cpab.info

The Center for Public Awareness in Bioethics

CPAB encourages the public to comment.  See:  http://cpab.info/contactus.aspx