Future Perfect: Confronting Decisions about Genetics

Future Perfect: Confronting Decisions about Genetics

Future Perfect: Confronting Decisions about Genetics

Future Perfect: Confronting Decisions about Genetics

Synopsis

Genetic technologies have moved off the pages of science fiction and into our everyday lives. Internists now offer genetic testing for cancers and early coronary disease. Obstetricians make genetic predictions during pregnancy about a baby's future health. Even dentists are getting into the act, offering testing for a genetic propensity to peridontal disease. In this pathbreaking book, Lori Andrews provides the first detailed glimpse into how genetic testing can change your self-image, your relationships with loved ones, and your expectations about your children. She documents how ill prepared doctors are to deal with complex genetic issues. Andrews also uncovers the ways in which employers, insurers, schools, and courts have discriminated against people on the basis of their genetic make up. She traces the legal case history of genetics litigation and legislation and describes the ethical and social protections that need to be in place so that the Human Genome Project does not lead us directly toward Brave New World.

In Future Perfect, Lori Andrews offers a new plan for making decisions as individuals and as a society based on emerging issues of ethics and science. Who should have access to your personal genetic information? Should genetic treatments be used to enhance characteristics such as intelligence in "normal" individuals? Should gene therapy be undertaken on embryos, changing their genetic inheritance, as well as that of future generations? If a woman learns she has a genetic mutation predisposing her to breast cancer, does she have a moral or even a legal duty to share that information with an estranged relative? Andrews considers the answer to these and many other questions that have profound implications for health care providers, medical organizations, social institutions, legislatures, courts, and ordinary people.

Excerpt

On a crisp fall day in 1995, Francis Collins, head of the Human Genome Project at the National Institutes of Health, took the microphone at a press conference he had convened. He announced that he and colleagues at Hebrew University in Jerusalem and at the University of California, San Diego, had discovered a mutation in a breast cancer gene in Ashkenazi Jewish women—the 185delAG mutation—that put them at higher risk than other women for developing breast and ovarian cancer.

The efforts to discover genetic causes for breast cancer preceding that announcement could be presented as a scientific adventure story, with all the intrigue and excitement that accompanies any new biomedical development. Long years of research, scientists competing to be the first to claim a discovery, and squabbles over credit have been part of the story of the enterprise of genetic science since long before James Watson, codiscoverer of the structure of DNA, first described them in The Double Helix.

The breast cancer saga was no different. Since 1990, when Mary-Claire King first pinpointed the general location of a gene that, when mutated, appeared to predispose women to the disease, researchers had battled to find the elusive gene. When the first breast cancer gene was finally located, two biotechnology companies and the National Institutes of Health battled for scientific credit—and commercial patent rights that would ensure royalties each time a diagnostic test or treatment was undertaken with that gene. Once those battles were over, other researchers vied to be the first to find particular mutations in the gene that caused a higher-than-average risk of cancer.

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