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The Legal Implications of Individual Genome Sequencing

Many people are ancestry enthusiasts, inquiring into historical databases and family records to find out more about their ancestors and about themselves.  They might learn about hobbies they shared with previous generations, and gain information on traits or diseases that run in their families.  Some people take such research a step further, digging into their DNA to learn about their biological past.

Gene sequencing used to be prohibitively expensive for individuals—the first whole genome sequencing cost $2.7 billion—but today, biotech companies like 23andme offer coding of certain parts of your genome for a fairly affordable $99. They advertise how such technology may explain, say, why you like baseball, but there are also medical benefits like predicting your predisposition to certain diseases.

But is there such a thing as knowing too much?  For example, many women with a family history of breast cancer are screened for mutations in a set of genes called BRCA; the mutations are responsible for about 5 percent of breast cancers. If a woman tests positive for the genes, she can take precautions like undergoing more frequent mammograms and quitting smoking.  However, some women take the extreme measure of a mastectomy when they don’t have any signs of cancer, but have a high likelihood of developing it.  The actress Angelina Jolie recently brought this practice into the limelight when she underwent a full mastectomy after testing positive for BRCA, even though she did not yet have cancer.  (For another take on the value of genetic knowledge and more information on the Supreme Court’s recent decision on the patentability of genes like BRCA, see our June 2013 article, Myriad: The Right Decision for the Wrong Reasons, by Darren Haber.)

Besides the fact that genetic testing could lead people to take excessive and arguably unnecessary precautions, there are other concerns with knowing your genetic predisposition to diseases.  False positives are quite likely, and there are also diseases for which there are no significant treatments, like Alzheimer’s.

There is another major issue in possible discrimination based on genetic information.  An insurance company could deny someone coverage because of his predisposition to heart disease, or an employer could refuse to hire an applicant with high risk for Parkinson’s since they would have to pay for medical treatment.

Discrimination based on genetic information is not new in America.  In the 1970s, with the advent of genetic screening, many state legislatures mandated genetic screening of all African Americans for sickle cell anemia, a disease that predominantly affects those of African ancestry.  This practice resulted in discrimination through stigma against African Americans in general and unnecessary fear of the disease.  In response, Congress passed the National Sickle Cell Anemia Control Act in 1972, which withholds federal funding from states that mandate such screenings.

With the advent of affordable genome coding technology, Congress in 2008 enacted the Genetic Information Nondiscrimination Act, or GINA.  GINA seeks to prevent the kinds of discrimination mentioned above, such as insurance denials and discriminatory hiring practices.  The Equal Employment Opportunity Commission filed its first lawsuits based on GINA earlier this year.  In May, the EEOC settled one lawsuit with Fabricut, Inc., which had asked a woman for her family medical history, which is a form of prohibited genetic information.  The settlement was for $50,000.  Another pending lawsuit against a nursing and rehabilitation center is for a similar violation so may be expected to settle.

Misuse of genetic information is also a troubling issue in criminal law.  U.S. v. Kriesel, 720 F.3d 1137 (9th Cir. 2013), decided this past June, rejected a criminal defendant’s challenge of the government’s retention of his blood sample to hold his DNA for a government database, after he had completed his supervised release.  Presumably defendant Kriesel’s DNA would be crosschecked with other samples found at future crime scenes.  There are many concerning aspects to using such a practice in criminal law.  Kriesel’s conviction was a single nonviolent, drug-related charge.  But this database could possibly implicate him in any number of crimes, including violent ones.  There could be false positives that result in Krisel being falsely accused of crimes, as well; a possible violation of due process.  The bottom line is that a citizen who pleaded guilty to a charge and underwent his punishment now has yet another permanent hurdle to his reentry into society.

Genome sequencing for individuals, whether for screening or diagnosis purposes, is still a relatively new technology, and the methods for interpreting data are still unsettled.  It is difficult to predict many diseases or make positive matches from DNA samples, particularly with certain sources of genetic material.  Congress has taken an excellent precautionary measure to try to protect from discrimination based on genetic information.  Since coding is still a relatively rare practice, it will take more time to learn whether the statute is successful in preventing discrimination based on genetic information.

About the Author

Heewon Kim

Heewon Kim is a Staffer for the Columbia Science and Technology Law Review. She is a 2L at Columbia Law School.
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