Zallen: Genetic testing bill is modern eugenics – Roanoke Times

By Doris T. Zallen | Zallen is professor emerita of science studies and humanities at Virginia Tech. She is the author of To Test or Not to Test: A Guide to Genetic Screening and Risk.

The Preserving Employee Wellness Programs Act (HR 1313), now being pushed by Republicans in the House of Representatives, is a threat to employees, will not improve wellness programs, and has the potential to unleash a corrosive force that could undermine the future of genomic medicine.

Genetic testing is becoming a central tool in the 21st century medical arsenal. Advances in genetics first made it possible to identify specific genes that bring on specific, relatively rare, health conditions such as cystic fibrosis, sickle-cell disease and muscular dystrophy.

Recent advances have yielded genetic tests that can identify people who, though healthy now, are at a higher-than-average risk for developing an illness in the future. Examples here include breast cancer, Parkinsons disease and Alzheimers disease all quite common.

However, these risk-raising genes are imperfect predictors. Environmental factors, including diet and exercise, also play key roles. The reality is that being found to have a risk-raising gene does not mean you will get the disease and, because of the involvement of environmental factors, you can get the disease without having the gene.

HR 1313 would allow employers to require genetic testing of employees in their wellness programs and assess harsh financial penalties on those who refuse. This is bad news. There are perfectly good reasons for people to decide to not have genetic testing for particular genes. Many people, learning of a higher risk for developing a future illness, suffer severe emotional distress, especially when there are no effective treatments or known cures to ward them off.

James Watson, Nobel laureate for the discovery of the structure of DNA, had his entire genome sequenced and made available online to aid in genetic research. But, he insisted that information about one of his own genes, the APOE gene, not be revealed. One form of the APOE gene is a known risk factor for late-onset Alzheimers. He did not want the burden of knowing.

Nancy Wexler, whose pioneering research led to the development of the genetic test for Huntington Disease a disease that runs in her own family decided against having that very test. For her, living with the uncertainty about her own genetic status is better than knowing for sure. Because genes are shared within families, a genetic test of one person is also a test of a whole family. Some relatives want to know; others do not.

Research has shown that genetic information spreading through families, often without any proper explanation, can bring on discord and deep divisions fueled by anger and guilt. And then, there is also the sad history of the misuse of genetic information, particularly the debacle of eugenics policies practiced widely in the U.S. during the first half of the last century. An abundance of prejudice, coupled with baseless beliefs about inheritance, led to Americans being forcibly sterilized for supposedly having sub-par genes.

More than 60,000 people, typically poor and uneducated, were victims of these policies. Sadly, eugenic policies were vigorously pursued in this part of Virginia. There are real concerns that HR 1313 can usher in a new era of eugenics an era in which employers, under the guise of improving health, are able to use genetic information to weed out those who may develop health conditions that could interfere with their productivity at some point in the future.

Existing legislation, the Genetic Non-Discrimination Act of 2008 (or GINA), has restricted the use of genetic information in the workplace. These protections will evaporate if HR 1313 becomes law. Genetic testing needs to remain an individual decision a decision determined by ones own values, life experience, family realities and attitudes about privacy. People should decide on their own what, if any, genetic tests they want and follow up with their own doctors to determine a course of action once the results are received.

Wellness programs can continue to help their clients achieve better health through smoking cessation, better diets, more exercise, and the like without any need for requiring genetic testing. If such testing is inflicted on people, then genetic information may well become viewed as a mode of punishment something to be feared instead of the valuable adjunct to the personalized medical care that is the promise of genomic medicine.

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Zallen: Genetic testing bill is modern eugenics - Roanoke Times