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See Inside July 2008

Law Protects Genetic Secrets History Would Rather Let Lie

New legislation shields some genetic secrets—time and mistrust still obscure others



Matt Collins

When our ancient ancestors migrated out of Africa and throughout the rest of the world, telltale variations in the DNA of the people who settled along the way marked their passage. Today anthropologists and molecular biologists of the Genographic Project, sponsored by the National Geographic Society and others, seek to reconstruct the forgotten migration routes by looking for those genetic “footprints,” as senior writer Gary Stix relates in his article “The Migration History of Humans: DNA Study Traces Human Origins Across the Continents".

The unwillingness of many indigenous groups in Australia, the Americas and elsewhere to submit DNA samples has hindered progress, however. Some worry that industrialists will exploit a pharmaceutically useful detail of their genetic patrimony and pay them nothing for it. Still others worry, with good cause, that information emerging from the studies might contradict their cultural traditions about their origins (Native Americans who believe their people have always occupied certain lands do not welcome the suggestion that their ancestors came from Siberia 13,000 years ago). Given the long histories of oppression and insensitivity some of those groups have suffered, their desire for genetic privacy is understandable.

The issue of genetic privacy is expansive and complicated, but most reasonable people agree that discrimination based on genes is wrong. Happily, the U.S. took a step in the right direction in April with the overdue passage of the Genetic Information Nondiscrimination Act (GINA) after 13 years of congressional wrangling. GINA, which closes holes in the interpretation of the Americans with Disabilities Act, prohibits the misuse of gene tests by health insurers to deny coverage or by employers when hiring, firing or making promotion decisions.

Opponents of GINA, who were primarily from industry, had argued that the act was too broad and redundant with legal protections at the state level and would be prohibitively expensive. They pointed out that it is rare to encounter the genetic discrimination that GINA is designed to prevent: insurers still rely mostly on personal and family medical histories rather than on genetic tests in making coverage decisions.

Nevertheless, GINA may be worthwhile if only for the sake of allaying public fears. A 2007 survey by the Genetics and Public Policy Center found that nearly three out of four Americans distrusted letting insurers and employers know the results of their gene tests. Both the frequency and diversity of tests will likely expand tremendously in years to come. GINA might be more important for preventing future abuse than for righting current wrongs.

GINA has its limits, however. The least tractable problem is that the incentives for genetic discrimination can run deep. After all, many gene tests exist precisely because they do identify predispositions for potential medical problems. As long as it is rational for insurers to use genetic information to exclude certain people from coverage or for employers to use it in hiring decisions, they will keep trying to find ways to do so. In the U.S., the best strategy for attacking genetic discrimination at its root may be to provide fuller guarantees of health care for everyone without exception. That would get health insurance off the backs of individuals and employers alike.

Universally allaying the misgivings of indigenous peoples who resist the Genographic Project may be impossible, but that does not mean stepwise progress is. Geneticist Sarah A. Tishkoff of the University of Pennsylvania obtained samples from 100 ethnic groups by spending a decade in the field gaining the trust of village leaders throughout East and West Africa. Fundamentally, the problems of the gene researchers echo the distrust born of the groups’ experience. Thousands of years of history separated these peoples in the first place—researchers will not be able to brush past the consequences of that legacy overnight.

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