Genetic Racial Profiling

By: Jennis Hemingway

Genetic similarities are found in people whose recent ancestors come from the same area of the world; these similarities may or may not correlate with race.^[1] Race is not biological, it is a “social or cultural construct” and in medicine and genetics, race has no coherent meaning.^[2] Disease and treatment are not related to skin color or hair texture.  As a human, your collective genes vary from everyone else’s by one tenth of one percent or .001.  And the vast majority of this variation is not related to an individual’s race.  In fact, only five to ten percent of the .001 variance can be linked to climate and geographic adaptation such as skin color.^[3]

As scientists learn more about our genes, they anticipate the development of more targeted and effective medications.  In response to this growing field and out of privacy concerns, Congress enacted the Genetic Information Nondiscrimination Act (“GINA”) which prohibits employers from requesting or using genetic testing as a condition of employment or health insurance.^[4] While few cases of gene discrimination have been reported, the law intends to preempt this kind of discrimination and thereby encourage individual genetic testing which will hopefully spur health care innovation.^[5] GINA is important because employers would be unlikely to hire and supply health insurance to a person who had genetic markers for heart-disease, Alzheimer’s, or for passing on serious diseases to their children who would also be covered by the employer health care. These protections are necessary upon examining historical instances of genetic discrimination.  For example, sickle cell anemia, which impairs a person’s red blood cells from carrying oxygen, has come to be considered a “black persons’ disease.”^[6] This misconception persists even though the sickle cell gene is most prevalent in populations at risk for Malaria; West Africans, Greeks and Sicilians, and certain groups of Arabs and Asian Indians.^[7] The gene is rarely found in Sub-Saharan African Blacks.^[8] Nevertheless, when the U.S. Air Force and some commercial air carriers began banning pilots with the sickle-cell trait from flying in the 1970’s, only Blacks were targeted.^[9] Without GINA, it is conceivable that a person (Black or not) could again be discriminated against based on their racial and genetic composition.  There are however some gaps in GINA that have yet to be addressed.

First, GINA protections do not cover life insurance, disability insurance, or long-term care insurance.^[10] Second, there will likely be a work-around for employers who seek to know their employee’s genetic information.  While the Equal Employment Opportunity Commission has included GINA in the ADA and Title VII pre-employment confidentiality provisions,^[11] there is no protection for someone’s genetic information after an offer of employment.  An employer can require a physical and request medical records and, in the near-future, medical records will probably contain genetic information because it is difficult to separate genetic and non-genetic records.^[12] GINA does not protect individuals when certain traits or diseases are associated with race. While GINA does not cover all genetic information, the law provides protection and privacy of individuals’ genetic profile in employment and healthcare.

GINA should be amended to close the loopholes in privacy protection. The health care industry must recognize that genetic differences are not race based. Medical professionals need to consider a patient’s ancestry and geographic origin, financial resources, lifestyle, health habits, cultural beliefs, and specific alleles linked to the medical issues.^[13] Physicians must recognize that many factors contribute to disease to avoid genetic racial profiling and the possibility of undermining social policy approaches which redress health disparities.^[14]

^[1] Patient–Tailored Medicine, Part Two, Personalized Medicine and the Legal Landscape,  American Health Lawyers Association’s Advisory Council on Racial and Ethnic Diversity, 2 J. Health & Life Sci. L. 1, 6-7 (2009).
^[2] Id.
^[3] Sharona Hoffman, “Racially-Tailored” Medicine Unraveled, 55 Am. U. L. Rev. 395, 412-13 (2005).
^[4] The Genetic Information Nondiscrimination Act of 2008, 42 U.S.C.A. § 2000ff-1 et seq., Pub. L. No. 110-233, 122 Stat. 881 (2008).
^[5] Mark A. Rothstein, GINA, the ADA, and Genetic Discrimination in Employment, American Society of Law, Medicine & Ethics, Inc., 36 J.L. Med. & Ethics 837, 837.
^[6] Jonathan Kahn, How a Drug Becomes “Ethnic”: Law, Commerce, and the Production of Racial Categories, 4 Yale J. Health Pol’y, L. & Ethics, 1, 38-39 (2004).
^[7] Id.
^[8] Id.
^[9] Id. at 40-41.
^[10] The Genetic Information and Nondiscrimination Act §§ 201-210.
^[11] Confidentiality, 29 C.F.R. § 1601.22 (2010); 14A C.J.S. Civil Rights § 568 (2010).
^[12] 36 J.L. Med. & Ethics 837, 837.
^[13] 55 Am. U. L. Rev. 395, 455.
^[14] 4 Yale J. Health Pol’y, L. & Ethics, 1, 27.