Although it had been at least 15 years since the last time we had seen each other, Betsy Anderson greeted me like an old friend. She remembered my wife's name, and our children's names, and she knew that we now lived on Martha's Vineyard. I was amazed, until I stopped to consider that my wife is a powerful person and that Betsy had good reason to remember her. Using Betsy as an inspiration and mentor, my wife, Betty Burton, worked with the Massachusetts Legislature to enact what we call "Jakob's Law," which requires hospitals to test umbilical cord blood for toxoplasmosis. Had that law been in place in 1983, our son's infection wouldn't have gone undiagnosed and untreated for the crucial first year of his life.

We walked down to the federation's tiny library and got reacquainted, and then we got down to business. I wondered if she had had any misgivings about being, in a way, part of the Human Genome Project. "Part of me doesn't want us to explore the universe, because we might not like what we find. Since we are going to explore, we need to mitigate the uses of that knowledge. But to find the right moral compass, the right limits, that's a challenge," she said. She went on to say that her main concern was that genomic discoveries be turned into therapeutic remedies. "People don't understand that," she said. "Just because we figure out what causes a disease doesn't mean that there will be any effort to cure it."

I asked her how she had gotten involved with ELSI. She had been invited, she said, by Jim Watson to be a member of ELSI's Parent Advisory Board. I was surprised to learn that Dr. James Watson himself was the originator of the ELSI idea, and that it was at his insistence that legislation enabling the Human Genome Project explicitly called for the funding of research into the ethical, legal and social implications of this revolutionary advance in human knowledge.

I was surprised because I had heard rumors of Watson's rather distasteful views on eugenics -- that we should learn to breed prettier girls and smarter boys, or something like that. "Oh, Jim's a wonderful man," Betsy said. "A wonderful man." And she went on to say that working on ELSI, which she did for the first few years of its existence, was a stimulating and satisfying experience, even if there were no clear answers to any of the ethical, legal or social issues that it raised.

That ELSI had come up with more questions than answers was hardly surprising news. I had read the President's Council on Bioethics report, "Biotechnology: A House Divided," which made policy recommendations on cloning, stem cell research and so forth. It was an enervating experience that left me unsettled and depressed. Because the experts, who all seemed to be good, sincere people who had done their homework and put earnest thought into their assigned tasks -- who had debated, studied, reconsidered -- came to the precise conclusion that they could agree on just about nothing except that there were some important issues here and that somebody ought to figure them out.

So when Betsy Anderson said that there was little consensus anywhere about solutions to moral quandaries I wasn't surprised. But she didn't seem as distressed by this as I was. She spoke knowledgeably and affably about dozens of people and organizations. I should speak with this person at the Genetic Alliance, she said, or that person at the New England Regional Genetics Group. She could introduce me to this author or that teacher. People with genetic conditions, parents of people with genetic conditions, concerned citizens, scientists, Betsy knew hundreds of them. They were all "good people," Betsy said, and they held all kinds of irreconcilable views. "When you get into it," she said, "it's very complicated."

That was a view seconded by Erik Parens, coauthor of "The Disability Rights Critique of Prenatal Genetic Testing." Parens is a full-time bioethicist at the Hastings Center, which "addresses fundamental ethical issues in the areas of health, medicine, and the environment as they affect individuals, communities, and societies." Shortly after my visit to the federation, I decided to give him a call.

At first, he seemed genuinely astonished that somebody from Salon was calling him. "Most things I write go out into the vortex," he said. But he quickly recovered. "I shouldn't say that," he said, and told how he had just returned from an invited talk about the "Disability Rights" paper at the convention of the American College of Medical Genetics. "So people high up are aware of the critique," he said. "Although it's not possible to guess how many people take it seriously."

I was intrigued by the idea of being a full-time bioethicist at a remote think tank in bucolic Hudson Valley, New York. What did he do all day? Surely nobody could just think about this stuff? It would make them nuts! It turns out that he also taught a course at Vassar College. "It's fascinating that students who want to become doctors had never even considered that people who have disabilities might have a different view than those of able-bodied college students. Those of us in this field forget how ignorance of disabilities is so pervasive."

Then we talked about the paper itself, and whether it addressed a mainstream or a fringe position. "There is great heterogeneity of views among people with disabilities, of course." He told me about attending a convention of disability rights activists. "At our table we had some of the world's most powerful critics of the technology as well as some of the most ardent defenders of procreative choice; people who despair of technology and people who are grateful to have access to new opportunities."

Just as Betsy had said, when you get into it, it's very complicated. So I asked Dr. Parens if there was any way to sort it out. Because I found it painful to think about this stuff, but unable to make myself stop. It was some kind of affliction.

"It's so disturbing to see people opt for the easy extremes," he answered. "On one extreme you have people who want to shut down everything in a kind of nihilistic despair, and on the other extreme you have people who don't think any of these developments are worth worrying about. 'Just get over it,' you hear. 'Get over your anxiety. The market will sort everything out.' It's tempting to chose one of these camps because there are no easy answers in between them, and people are impatient with hard questions."

So I said, "Well I'm perplexed by all these issues. You study them professionally, at an institution devoted to nothing but studying them. Are you perplexed?"

"Absolutely!" he laughed. "As a liberal, I'm open to the argument that technology will relieve suffering. On the other hand there is the possibility that we are creating more suffering, if you take seriously the suffering of people due to arbitrary and unjust social norms."

I said, "I get so frustrated because I feel compelled to figure out how I feel about genetic research, but I don't make any progress. I don't know how I feel about all this stuff." Erik Parens, Ph.D. and professional bioethicist said, "The ones I don't trust are the ones who know exactly how they feel about all this stuff."

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