Looking More Like America?
Looking More Like America?
by Mary Meehan
Presidential science adviser John Gibbons sees the new National Bioethics Advisory Commission as "the bioethics body of the '90s that can carry us into and across the millennium."
Pro-life leaders and some victims of research abuse fear that it will do just that-with disastrous results.
The National Right to Life Committee's newspaper recently charged that some members of the Clinton-appointed commission have little respect for "Americans' ethical sensibilities on the destruction of innocent life."
And Gwendon Plair, who represents people harmed by radiation experiments, said, "We're very afraid."
Why all the fuss? The 17-member commission, which is supposed to advise government agencies on ethics, held its first meeting Oct. 4 here in Bethesda, Md.
While government representatives stressed that its first priorities are protection of human-research subjects and the handling of genetic information, they also said the commission has wide discretion to take up other issues.
Pro-life leaders worry because:
One commissioner is a former president of a statewide Planned Parenthood group. Another is on the board of the Alan Guttmacher Institute, which supports abortion; and a third used to be on the Guttmacher board.
Several commission members have clearly and publicly supported human embryo research or fetal transplant research.
One commission member, a doctor, believes that doctor-assisted suicide is "not immoral."
Another, although opposed to legalizing assisted suicide, has long defended "eugenic abortion," according to the National Right to Life News.
Gibbons and his White house Office of Science and Technology Policy laid the groundwork for the new commission over a two-year period. President Clinton appointed the members in July and September.
Plair, who speaks for the Task Force on Radiation and Human Rights, and Acie Byrd, who represents the Atomic Veterans Working Group, tried to persuade Gibbons to appoint a victim of research abuse to the commission. He declined to do so.
Byrd, who said he was exposed to atomic testing in the Marshall Islands in 1958, told Our Sunday Visitor that Gibbons's office "felt that victims would not be objective, that they would be principally advocating their own position-which I thought, quite frankly, was an insult."
Plair and Byrd were also concerned because many commissioners have them selves done research on human subjects, and some still do. (Most of it appears to be social-science research, rather than drug testing.)
"Not that research-you must understand me-is not good," Plair said, but that "the extent of the harm that maybe done-medication or whatever it may be-must be told dearly to the potential patient and to his family, so that everybody understands what's at stake."
He said his mother died in 1965, within a year of "total body irradiation" in an experiment, and that she was "never told" that she was being experimented on.
Many commission members have links with the National Institutes of Health (NIH), a government agency that sponsors a huge amount of research.
A General Accounting Office report last March said that "a potential weakness exists because NIH is both the regulator of human-subject protection issues as well as an institution conducting its own human-subject research."
Vice President Al Gore believes that bioethics commission members are capable of dealing with tough ethical issues and ensuring that "our ethics are as good as our science."
Greeting commission members in an Oct. 3 letter, Gore said he was "most gratified to have such a highly esteemed group of experts and community representatives" on the commission.
Commission chair Harold Shapiro, the president of Princeton University, said he felt "very good about the composition" of the group. It can do its work, he said at an Oct. 4 press conference, "in a way that would be in the national interest," though he added that it "may not be in the interest of every single subset of the nation."
The commission, Shapiro said, can "help clarify" complex issues, adding that "it's somewhat arrogant" to think that "we can resolve all these issues."
Bioethics critic Dianne Irving, who teaches philosophy at De Sales School of Theology in Washington, told Our Sunday Visitor that there is "no such thing as a neutral ethics. That includes utilitarianism and consensus' ethics."
"Who will be held accountable?" she said. "This commission should be watched very closely by the American people and their representatives, who will directly bear the brunt of their public- policy recommendations."
Citizens who want to suggest topics for the bioethics commission to consider, or to make other comments, may send their statements to: National Bioethics Advisory Commission, 6100 Executive Blvd., Suite 3CO 1, Rockville, MD 20892-7508; phone: (301) 402-4242; FAX: (301) 480-6900.
Those who wish to make brief oral statements at a commission meeting should contact communications director Patricia Norris at least seven business days before the meeting.
The next regular meeting is tentatively scheduled for Jan. 9-10, 1997. The location hasn't been decided yet.
"A road show would be useful," said one member, "as much as I hate traveling."
Ironically, commission member Alta Charo once said that "no government body can purport to be the arbiter on that which is ethical and that which is not."
But in an Oct. 4, 1994, letter to Gibbons' office, Charo stressed the political potential of a bioethics commission: "A government body can advise relevant agencies on the political acceptability of their proposed activities."
She said it "can use arguments from the fields of philosophy, sociology, etc., as a guide to likely public reaction, or even as a tool for shaping future public opinion."
Meehan writes from Rockville, Md.
WHO'S WHO ON THE BIOETHICS COMMISSION
CHAIRING THE NATIONAL BIOETHICS Advisory Commission is Princeton University president Harold Shapiro, an economist. He is on the board of Dow Chemical and chairs the board of the Alfred P. Sloan Foundation. Both his university and two of his daughters are involved in human-subject research.
The other commission members are:
PATRICIA BACKLAR of Oregon Health Sciences University a specialist in mental health issues She does research on human subjects and is the primary investigator on a project that will be funded by the National Institutes of Health (NIH).
DR. ARTURO BRITO, a pediatrics professor at the University of Miami medical school. He is working on an NIH-sponsored asthma study.
ALEXANDER CAPRON, law professor at the University of Southern California. He directed another presidential ethics commission (1979-83). Capron supports eugenic abortion, but opposes doctor- assisted suicide.
DR. ERIC CASSELL of Cornell University Medical College, whose books include "The Nature of Suffering." In an NBAC discussion on conflict of interest, Cassell said he has the "inevitable conflict that comes from being of two minds about a lot of things."
ALTA CHARO, a law professor at the University of Wisconsin. She is on the board of the Alan Guttmacher Institute, a think tank that supports abortion. In 1994, she was on the board of International Projects Assistance Services, which promotes abortion in Third World countries.
JAMES CHILDRESS of the University of Virginia, who co-authored "Principles of Biomedical Ethics." He was on a 1988 NIH panel that supported use of aborted fetal tissue for transplant research.
DR. DAVID COX, a professor of genetics and pediatrics at Stanford University's medical school. "I'll teach genetics to anyone who'll listen to me," he said recently. He is a founder and director of a genetics company, and advises the National Center for Human Genome Research.
RHETAUGH GRAVES DUMAS, a University of Michigan health-affairs administrator and former official of the National Institute of Mental Health. She was once on the board of the Alan Guttmacher Institute.
DR. EZEKIEL EMANUEL of Harvard Medical School, who specializes in end-of-life issues and does ethics work for NIH. The National Right to Life News called Emanuel's selection "intriguing," because of his articles "in which some modern ethicists' prejudices are exploded through carefully documented fact." :
LAURIE FLYNN, executive director of the National Alliance for the Mentally Ill (NAMI). Many members of the alliance are research subjects, and the alliance itself sponsors research.
STEVEN HOLTZMAN, chief business officer of Millennium Pharmaceuticals, a genetics company He co-chairs the Biotechnology Industry organization's bioethics committee.
BETTE KRAMER, founder and first president of the Richmond Bioethics Consortium and a fund-raiser for Democratic Party candidates.
DR. BERNARD LO of the University of California, San Francisco, who supports human embryo research and believes doctor-assisted suicide is "not immoral." He has done research on patients toward the end of life.
DR.LAWRENCE MIIKE, director of a bioethics state-health department. He's a former president of Planned Parenthood of Hawaii.
THOMAS MURRAY, director of a bioethics center at Case Western Reserve University, who supports human embryo research and fetal transplant research. He once described his views on abortion as "conflicted, perhaps muddled, moderate." Murray has served on NIH panels and received NIH grants for ethics research.
DIANE SCOTT-JONES, psychology professor at Temple University. She does research, sponsored by the MacArthur Foundation, on children and families. She has studied teenage pregnancy.-Mary Meehan
This article was taken from the November 3, 1996 issue of Our Sunday Visitor. To subscribe write Our Sunday Visitor, Inc, 200 Noll Plaza, Huntington, In 46750.
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