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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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5 Comments
Add CommentNot everyone would want to believe that they share the same ancestors from Africa. Natives and indigenous people, in particular, are more prone to adhere to their own religious beliefs and faiths, rejecting outright any outsiders intrusion to their apostasy of their own almighty creator.
Reply | Report Abuse | Link to thisEnticing them to donate DNA samples may not be ethical, even though the goal of the researchers seems honorable enough. The obvious reason is how could they know their DNA would be well protected and not be accessible to the unscrupulous? Indeed, it is very difficult to prevent the samples from being abused by people with covert or vested interests.
Their desire for genetic privacy is understandable. How true!
If evidence is ignored ignorance is advanced. Are those who "would not like to think..." to be granted some absolute right to ignorance. The counter arguments seem poorly based on such a premise.
Reply | Report Abuse | Link to thisSensitivity and the allowance of beliefs at variance with facts are enshrined in religious beliefs, but that does not accord them credibility. To reverse Sen. Goldwater's line: "24 million people can be wrong."
Are we attempting to prove that humankind started in Africa and spread to populate the planet? How many samples do you need? A national health care system in the US isn't an answer to anything except how we can increase the tax burden on citizens, a further relinquish individuality to the collective. Peoples have developed their own cultures over time and aren't predisposed to having that challenged for many reasons from social, political or religious reason to personal ones. How do people benefit from this research? Sounds like the research is viewed as a "take" and not a "give"...nothing in it for me/us other than science proving a fairly widely held theory amongst most. Will humankind benefit directly other than at a theoretical level? I don't think so. Will it create a data set that the less than honest can pilfer. You bet! SSAN ring any bells for those in the US? Will it open the eyes of all to see that regardless of geography, politics, language, skin color or religion we're all related and can stop killing each other over one or more of the above. I think not.
Reply | Report Abuse | Link to thisEveryone has a right to his or her religious beliefs and culture. Science tends to question, and sometimes contradict, religious beliefs and cultural traditions. This may be threatening to some, maybe even most, people who don't share our faith in science, just as it was to our ancestors when faced with evidence from Galileo, Lyell and Darwin that our religious beliefs might not be taken literally.
Reply | Report Abuse | Link to thisBut this does not mean that science should stop questioning. Rather, it means that the scientist may need to be more sensitive to other cultures in designing studies, and that science may need a stonger code of ethics.
Interesting how those at Scientific American, who supposedly promote scientific research, promote and condone stem cell research, castgate those who hold life sacred as anti-science, have backpedaled and become paranoid about use of genetic date and scientific freedom.
Reply | Report Abuse | Link to thisApparently what is god for the goose isn't good for the gander.