Earlier this semester the Center for Jewish Life (CJL) hosted a genetic screening. The Human Genetics Program at NYU Langone Medical Center contacted members of the CJL and worked to provide the University community with genetic carrier testing. Participants will soon find out if they are carriers for 16 different diseases.
The NYU Genetics Program website promises that screenings, which are done with a blood sample, will "identify changes in a person's chromosomes" and "ensure that your children will not suffer from these diseases." The information could impact who you date and how, if at all, you conceive a child.
When I first heard about this process I was, by most scientific definitions, creeped out. As if dating, marriage and children are not scary enough, there is now the added dimension of genetic compatibility. Some of my Jewish friends shared my fear and simply refused to have the test taken for reasons ranging from, "I don't want to think about all that sad stuff" to "If a cute girl asks me, ‘do your genes contain a horrifying and deadly recessive gene?' I don't want to have to say yes."
My own fear of genetic testing has been colored by the popular discourse. Films like "Gattaca" and "X-Men" present a horrifying future where genetic tests at birth dictate your career and pinpoint your death. The federal government has gotten into the fray, passing the 2008 Genetic Information Nondiscrimination Act and initiating the Human Genome Project. The Human Genome Project website promises to help solve "challenges in health care, agriculture, energy production, environmental remediation, and carbon sequestration." While these films and the actions of our government prepare us for our genetic future, it is important to parse the fantastic from the factual.
Ruth Hubbard, biology professor emerita at Harvard University, has long fought against the prevailing notion that genetic testing for the general population will offer substantive knowledge. In a 2007 essay written for the Social Science Research Council, Hubbard details the inaccuracy of prevailing assumptions about disease and genetics. In her analysis of sickle cell anemia, beta-thalassemia and retinitis pigmentosa, Hubbard points out that "the manifestations of inherited conditions can vary considerably and unpredictably from one person to another and, indeed, in the same person at different times." When tests typically given to a small subset of the population are given to the broader population, the data becomes meaningless.
Given to specific groups and individuals, genetic carrier testing can provide valuable insights and save lives. The testing of Ashkenazi Jews done at the CJL is a perfect example of a small at-risk group who could readily benefit from knowing carrier status for diseases like Tay-Sachs or cystic fibrosis. I fear, however, that this kind of test will be seen as a panacea for everything from illness and disease to global warming and famine.
The difficulties we face in healthcare, food and energy production and global warming should not solely depend on a scientific wizardry. A misguided faith in genetic research may well blind us to useful actions we can take to remedy the world's ills. A passing obsession with genetics will upset our priorities and postpone action on serious issues. Again, Hubbard argues that "securing everyone's access to clean air and water and to adequate amounts of nutritious food would be much more effective in reducing ill health than predictive tests and genetic interventions can be."
Genetic testing could be an important part of our future, as long as it is placed in a broader discourse about health and social policy that takes ownership of the problems that plague our confusing and complex world while recognizing the benefits of science.
The next time a genetic screening is brought to campus, I recommend that all members of the population that the test targets take advantage. I originally bemoaned the birth of genetic compatibility as the death of romantic love, but the reality is that the two can work in conjunction. We already let random genetic factors determine who we find attractive (tall, dark and handsome?) It only makes sense that we factor in a new set of criteria. We just have to make sure that genetic testing is considered one factor competing with many others.
Michael Collins is a sophomore from Glastonbury, Conn. He can be reached at email@example.com.
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