At barely 21 years of age, there are already calls for genetic exceptionalism to be retired. A little background on the circumstances of its birth might be helpful.
The labor was prolonged and arduous. It began, I suppose, with the work of the Task Force on Genetic Information and Insurance, an offshoot of the ELSI (Ethical, Legal and Social Implications) Working Group for the Human Genome Project. Our mission was to “anticipate ethical, legal, and social policy issues raised by the impact of genetic information on the public’s access to health care financing, life and disability insurance and to develop suggestions that could be used to forestall potential problems before they occur”. We were instructed to work with the insurance industry, regulators, consumers, professional groups, and researchers to develop a clear picture of the looming collision between the insurers’ business model that relied on predicting—and limiting liability for—risk, and the anticipated avalanche of genetic information that could be used to assess individuals’ likelihood of disease, disability and early death. We were also supposed to recommend policy options for dealing with the impending pile-up.