NOTE: Letter was faxed to McKusick by Wyngaarden on July 11.
Item is a photocopy.
Number of Image Pages:
2 (155,679 Bytes)
1991-07-09 (July 9, 1991)
Wyngaarden, James B.
National Academy of Sciences (U.S.)
University of Wisconsin. School of Medicine
Original Repository: Alan Mason Chesney Medical Archives. Victor Almon McKusick Collection
Reproduced with permission of the National Academies Archives.
Medical Subject Headings (MeSH):
Human Genome Project
Medical Genetics, Molecular Biology, and the Human Genome Project, 1980-2008
July 9, 1991
Thank you for your note of July 5. I do have a copy of my text which needs a little touching up, but I would be willing to
have it considered for publication if there is a symposium summary to be published.
I wanted to say a few words about your second paragraph, in which you approach the question of creating an international coordinating
committee. This action puzzles me immensely, because it seems to indicate a complete ignorance of the fact that such a body
already exists in the form of HUGO. One of the major subcommittees and activities of HUGO deals with ethical, legal and social
issues. This subcommittee is chaired by Victor McKusick. He also has chaired an Academy committee dealing with forensic use
of DNA technologies. As I mentioned and as we discussed in my office, conferences on ethics of human genome research seem
to constitute a growth industry. Because of the number of such conferences HUGO has not organized ethics conferences of its
own. In addition, I rather incline toward national or regional task forces on very specific issues, rather than the global
approach envisioned in your paragraph. For example, one reaction that came back to me from a British participant was that
the Bethesda conference was "a typical example of American arrogance." This reaction apparently related to the emphasis
on genetic diagnoses and health insurance, a peculiarly American issue, and some immigration issues, neither of which was
discussed when I was personally in the audience. But I think the signal is that we should deal with our own issues and let
other regions deal with theirs since many of the matters are so dependent on regional or national ethnic and cultural overtones.
Finally, as Bob Cook-Deegan may have reported to you earlier, I had major reservations about a conference on ethics in which
the Soviets played such a prominent role. As it turned out, since the KGB presentation did not come off, the issue was not
a major one. I have however read the Frolov and Yudin book entitled The Ethics of Science: Issues and Controversies, and it
is pretty heavily laced with Marxist-Leninist doctrine. Perhaps that was obligatory, and perhaps the book would be slanted
differently if written today. Nevertheless, I think we should go slowly in assuming that people who are a product of seventy
years of such culture suddenly acquire ethical viewpoints that are congenial with those of the western tradition.
I was impressively reminded of the gulf that remains during a recent visit to Moscow when a colleague and I had lunch with
a Soviet pediatric surgeon, who discussed the difficulty of obtaining fresh hearts and livers for transplantation in children
under age 5. He contrasted the difficulty with that of obtaining kidneys which can be shipped for a number of hours. There
is no brain death law in the Soviet Union, at least not applying to children under age 5. What the Soviets have done is to
form committees that rule on the acceptability of "using" severely handicapped children who "cannot contribute
to society" or "that society does not need" as donors. Apparently such children are being sacrificed to provide
hearts or livers for other children. I pointed out that this would be totally unacceptable in the United States. The surgeon
that reiterated that they did not have a brain death law, hence no other solution. My colleague later confirmed this practice
in two other discussions, including one with Boris Yudin himself.
I think this example illustrates my point, and I rest my case.