Rights, privacy, and genetic screening.

A very interesting dialogue has been established here concerning the role of insurance in our society. I would, however, like to step back from the insurance issue to discuss several major developments that will shape how genetic information is used in our society. First, revolutionary change is going on among employers in the way they respond to the cost of health insurance. Employers are saying that they just can't afford to pay any more. This process may eventually have major implications for the use of genetic testing. Second, there will be phenomenal growth in the use of the genetic data banks, a development which may have tremendous implications for our notion of privacy. Third, there is a revolution going on in the way that disabled persons are beginning to assert their rights. The recent enactment of the Americans with Disabilities Act heralds a decade in which disabled citizens will become empowered. To defend my first assertion, concerning the way employers are balking at the cost of health insurance, I shall quote several articles taken from business journals and newspapers. Consider an article from the "Business and Health" column in the New York Times, describing how employers are rewarding employees for not using medical services. The author asserts: ". . . the next step will be to control utilization by employees of services and the best way to do that is to not need them"[1]. Both employers and employees are grumbling about subsidizing the cost of those with poor health habits. From another column comes the news that the Circle K Corporation, operator of the second largest chain of convenience stores in America, for a time would not pay for the health insurance of individuals whose diseases are related to life style, such as drug abuse, alcohol abuse, and venereal disease[2]. In a journal called Medical Benefits, there appeared an article called "Genetics and Health Care: Challenge and Choice" that asserted: "It will soon be possible to screen individuals for genetic risks of disease at birth. This would allow preventative measures, avoiding certain food stuffs, avoiding exposures to certain occupational hazards, or taking certain medications to be tailored to particular circumstances"[3]. The suggestion that we can shape life style from birth poses tough questions about privacy. Another "Business and Health" column noted that, among ten areas that various cost control groups were beginning to scrutinize for possible overuse, was amniocentesis[4]. Can you imagine telling a woman that her diagnostic amniocentesis is not covered by insurance? We have clearly decided to scrutinize the way in which health care dollars are spent. If the cost continues to soar, society could decide to influence individuals to behave in a way that might today seem repugnant to us. The Sunbeam Corporation recently did an analysis of what it paid for health care at a plant in Ohio. Of the $1 million it spent in one year in a 600-employee plant, $500,000 was for the treatment