cover image FUTURE PERFECT: Confronting Decisions About Genetics

FUTURE PERFECT: Confronting Decisions About Genetics

Lori B. Andrews, THEY CAN'T TAKE THAT AWAY FROM ME

With the recently announced mapping of the human genome, the era of genetics is upon us. But how will this new information affect our decisions regarding genetic testing and treatment, especially if, as Andrews maintains, our ability to diagnose genetic diseases has outstripped both our ability to treat them and our related social policy? A scholar of science and law and an advisor to the National Institutes of Health, Andrews (Body Bazaar) offers a dry but insightful glimpse of the future, by examining three discrete policy models to determine which may be best suited for genetic testing. Andrews maintains that, currently, such decisions are being made by the "medical model," which stresses individual patient decisions but leaves patients too poorly informed to make good decisions. The "public health model," which is based on widespread educational campaigns or legally mandated acts such as vaccinations, is also inappropriate, because genetic diseases are not necessarily a public health problem. Moreover, mandatory screening could leave those who test positive discriminated against by employers and insurers. Instead, Andrews advocates a "fundamental rights model" that would empower the patient and ensure the high quality of health care services by requiring informed consent. Our goal now, she argues, should be to secure "an informed and knowledgeable health care provider base." The author then goes on to consider specific problems in genetic policy (e.g., the impact of negative test results, or the impact of genetic testing on minorities) under this plan. With its rather technical emphasis on how genetics will influence society and impact an individual psychologically, the book's primary audience will be policy makers, industry experts, physicians and public health officials. (Apr.)