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Playing God | page 1, 2, 3

What may feel like a coercive atmosphere to some pregnant women certainly doesn't compare to the collusive agenda of the eugenics movement, but it has similarly insidious consequences. The pressure to rely on science today is brought to bear on one patient at a time, and with the intent of ensuring the health of both mother and child, while the eugenics era was marked by a country-wide belief that everyone had a responsibility to do all that was possible to improve society, says Cold Spring Harbor's Micklos.

Groups like the American Eugenics Society cropped up all over the country after 1910, developing campaigns and sponsoring state fair exhibits to raise awareness of the importance of eugenics. The archive shows photos of billboard-type advisories in which flashing lights called attention to "facts" such as: Every 15 seconds $100 of public money goes to the care of "persons with bad heredity," and that every seven and a half minutes, "a high-grade person is born in the United States ... with the ability to do creative work and be fit for leadership. About four percent of all Americans come within this class."

One irony today is that technology like genetic screening is being sold to us as a way of making our lives easier by reducing our chances of having to care for disabled children. Yet one need only to look at the subject lines of postings to chat boards such as Parentsoup.com's Genetic Tests and Complications to understand the stress that these tests can cause. "One in 31 [spina bifida or other neural tube defect test] result and scared," posts one woman. "Low [spina bifida] at 17 weeks and scared to death -- help!" writes another. Those yet to take tests or receive results, often ask "What if it's bad news?"

And this begs the question, how reliable are these technologies and what are the risks involved? There's the recent story of Nancy Seeger, the Chicago-based writer and artist who found through genetic tests that she was at increased risk for developing breast and ovarian cancer. Seeger looked at her family history with cancer -- her mother and aunt died of breast cancer -- and, with the advice of doctors, opted to have her ovaries removed. At the time of the surgery, Seeger donated some of her blood for study at a university hospital. Eight months later, doctors studying Seeger's blood found that she did not carry mutation of the gene for breast and ovarian cancer. The company that administered her genetic tests made a mistake.

The truth about modern genetic science is that the very information used as the basis for life-altering decisions like having your ovaries removed or life-ending decisions like aborting a cystic-fibrosis-carrying baby is not always conclusive. This is not to say that all genetic testing is bad. Despite the confusion and stress they cause, these tests and the medical interventions they enable have helped countless parents have healthy babies and others to avert a cruel illness. Instead, the stories of Nancy Seeger and the women on Parentsoup.com serve as cautionary tales of what we can lose in relying on science alone to make crucial decisions.

And therein lies the biggest lesson of the eugenics archive. The movement reached its zenith during the years that Cold Spring Harbor Laboratory operated the Eugenics Record Office, between 1910 and 1940. But by 1940, the laboratory shut down the Eugenics Record Office because the science that was used to make the various laws was discredited. For evidence of these shortcomings, one need look no further than the extensive records of the case of Vivian Buck. Among the images of the IQ tests and the observations of 7-month-old Vivian is an artifact that came a few years after the 1927 Supreme Court decision: Vivian's grade school report card. This record shows that Vivian's teachers found her to be bright. She had a solid B average, which proves that she was far from the imbecile that the high court found her to be.

Certainly, science and technology have ways of making our lives better. But they also make our lives harder, simply by giving us more options -- which sometimes lead to hard choices. So it's inspiring to see the Internet come to the rescue with something like the eugenics archive -- to put us in touch with history and force us to think about where science has taken us and where we need to go next.
salon.com | Nov. 17, 1999

 

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About the writer
Kristi Coale is a San Francisco freelance journalist who covers science. She is currently working on a project on the environmental impact of agricultural biotechnology for the Center for Investigative Reporting.

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The gene genie Jeremy Rifkin warns that the coming "biotech century" will be one big genetic bazaar.
By Jeffrey Obser 05/05/98

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