IN THE EARLY days of ELSI, when the Human Genome Project had yielded few concrete insights, the program's activities were dominated by conferences on philosophical matters with titles like "Ethics, Values, Professional Responsibilities" and "The Human Genome Project: A Choices and Challenges Forum." Over time, ELSI's members have moved away from abstract speculation in favor of nuts-and-bolts task forces. Eric Juengst, a bioethicist at Case Western Reserve and former head of the ELSI research grant program, approves. "Is it appropriate," he asks, "to be waving our arms about things that science may never bear out?" Not all ELSI activists are happy about this turn, of course. But even more radical panelists, like Dorothy Nelkin, acknowledge that pragmatic responses to genetic threats can't be shunned on principle. "You can't just sit there and wail about capitalism," says Nelkin. "You try to do something."

And in this practical capacity, ELSI's efforts are considerable. ELSI panelists pushed the Equal Employment Opportunity Commission to issue a statement extending the antidiscriminatory Americans with Disabilities Act to people with genetic susceptibilities to particular illnesses. They backed Hillary Clinton's push for universal health care, arguing that the genetic revolution would be all for naught if tests were used by health insurance companies to charge huge premiums to people with suspect genes. They have been a resource to reporters writing about genetics. ELSI-funded research consortia are providing statistical bases for clinicians trying to figure out how to use gene tests for cystic fibrosis and for cancers. Perhaps most importantly, ELSI scholars like Boston University ethicist George Annas have been invited to help write genetic privacy bills, which have become law in several states.

Of course, not everyone appreciates all this activity. Indeed, ELSI's intrusion into the scientific realm has sometimes infuriated the hundreds of molecular geneticists toiling away in genome labs around the globe, from Palo Alto to Paris. Some scientists are put off by ethicists peering over their shoulders and complain bitterly that ELSI meddles in their relationships with lab subjects, imposes overly protective informed-consent rules, and ties them up in endless jawboning about topics the ELSI types don't fully understand. Many molecular geneticists dislike having to notify a study subject each time a fragment of his DNA is cloned for comparison with somebody else's; they resent having to justify inquiries into alcoholism or neurosis to a bunch of snooping sociologists. "I spend a lot of my time going to ethics conferences right now," grouses David Goldman, chief of the Laboratory of Neurogenetics in the National Institute on Alcohol Abuse and Alcoholism. "My perception is that a climate is being created that's going to make it more difficult to do genetic research."

Social-science skeptics, on the other hand, feel ELSI doesn't do enough-and grumble that the project's purse strings are controlled by the very scientists it was created to critique. George Annas ran up against these sorts of limits after he got ELSI funding to draw up a national Genetic Privacy Act. Annas proposed that DNA samples be destroyed after they were used in lab tests, because "as the Genome Project goes on, scientists will be able to learn things about you from that sample that you don't know yourself." (It might reveal, for example, a potential case of Alzheimer's disease, interesting news to an insurance company.) The ELSI Working Group endorsed Annas's project but the scientists on the advisory council opposed the idea of destroying DNA samples. And though Senator Pete Domenici (Rep., N.M.) has since introduced a version of Annas's act as legislation, the sample-destruction part will likely die without the advisory council's support.

An even fiercer battle between the Working Group and the genome advisory council erupted over whether and how to respond to The Bell Curve, the 1994 book by Charles Murray and Richard Herrnstein that claimed IQ was determined by genes and varies almost unalterably along racial and ethnic lines. All the Working Group members regarded the book as bad science, and many of them wanted to condemn it publicly. But to many of the senior genome scientists, the effort smacked of misguided do-goodism. "There's no science in The Bell Curve, so why denounce it?" says David Botstein, head of the Stanford Genome Laboratory.

That is precisely the kind of attitude that frustrates David Cox, Botstein's colleague at Stanford. "When The Bell Curve came out, you couldn't pick up a magazine without seeing essays about it," says Cox, an innovative geneticist who's served on ELSI boards for several years and was recently named to President Clinton's National Bioethics Advisory Commission. "The genetics societies were the only ones who said nothing. Their approach was, 'It's not in our job description.' Well, that's a very narrow view of life. The rest of the world was commenting. My view is we have to make the scientists comfortable with that becoming part of their job description. Most scientists think, you isolate the gene, report in Science, and the work is done. Actually, the work may only be beginning." After much debate, Cox's activist approach won, but just barely: ELSI published a thousand-word statement in the American Journal of Human Genetics this past September-long after passions over the book had cooled.

Previous --- Policing the Gene Machine --- Next

Copyright © 1997 Lingua Franca,Inc. All rights reserved.