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Speaker says advances in genetics pose new human rights challenges

by Gregory Hladky - April 14, 2008

A torrent of new information on human genetics could pose acute challenges to human rights in the near future, according to an expert in the history of medicine.

Daniel Kevles, a professor at Yale University, warns that dramatic advances in genetic science have “revived some of the old issues” surrounding the eugenics movement that flourished in the United States and Europe during the early part of the 20th century.

Kevles, author of In the Name of Eugenics: Genetics and the Uses of Human Heredity, gave the Second Annual Heinz and Virginia Herrmann Distinguished Lecture on Science and Human Rights at Konover Auditorium April 3.

His talk was sponsored by the Program on Science and Human Rights of the Human Rights Institute.

Scientists and policy makers today face questions such as who should benefit from the remarkable new genetic therapies and cures, and whether employers and insurance companies should be allowed to screen for genetic traits and tendencies, Kevles said.

He said the possibility of genetic engineering carries huge ethical problems: “If the genetic enhancement of children becomes a reality, then those better off in talent and resources will only get richer.”

Kevles said history provides some startling lessons for today’s public policy-makers.

“Eugenics is often dismissed as ‘crank science,’” Kevles said. “But we need to bear in mind ... that science is in any day what scientists do and defend.”

Kevles said the eugenics movement was based in large part on Darwin’s theories of natural selection and new scientific research on heredity.

The movement’s adherents advocated the improvement of the human species through selective or controlled human reproduction.

Kevles said eugenics was discredited primarily because of its association with Nazi Germany’s horrific sterilization policies and the death camps of World War II.

But “eugenics was not unique to the Nazis. It could and did happen virtually everywhere,” he said.

Kevles said many people are stunned to learn that “liberal, democratic Sweden” sterilized approximately 60,000 people between the 1930s and the 1970s.

Between the start of the 20th century and World War II, two dozen American states passed laws authorizing the forced sterilization of “the feeble minded” and others labeled as genetically flawed.

In 1927, the U.S. Supreme Court voted 8-1 to uphold Virginia’s eugenics law, with the majority opinion written by Oliver Wendell Holmes Jr. And, according to Kevles, by 1930, California had sterilized some 6,000 people.

Kevles said the racial concerns of the American eugenics movement focused less on fears about blacks than on the waves of European immigration.

“Immigrants from eastern and southern Europe were not thought to be white,” he said. He said many Anglo-Protestant Americans worried that they’d be outnumbered and overwhelmed by those they considered substandard humans.

But he said the post-Nazi revulsion against eugenics and the rise of the ideas of reproductive and civil rights have changed the nature of today’s debate.

“Publicly mandated eugenics seems very unlikely in the West, especially in the United States, with its very strong commitment to civil liberties,” Kevles said.

In 1990, the human genome project was begun in the U.S., with the goal of identifying and mapping the more than 20,000 genes in human DNA.

Some experts fear this project may “spark a revival of negative eugenics, that is, state programs of intervention in reproductive behavior so as to discourage the transmission of so-called ‘bad genes’,” he said.

Kevles said rising health care costs could trigger a taxpayer rebellion “against paying for the care of those whom genetics dooms to severe disease or disability.”

Employers and insurance companies may well seek to screen potential employees for “diseases that would result in costly medical or disability payouts,” he said.

The issue of who should be able to benefit from the advances in genetic science and medicine is made more difficult by the fact that some 45 million Americans lack health insurance, he said.

“If genetic diagnostics, therapies, and cures are not equitably available to all,” Kevles added, “then the marvelous and growing arsenal of knowledge and technology will only compound, worsen, and intensify the current inequities.”

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