What Kind of Bioethics Council Do We Need?
Science Tells Us What We Can Do; Values Tell Us What We Should
SOURCE: bioethics.gov
Many genetic, reproductive, and biomedical technologies now in development pose new societal challenges, raising questions about how we understand and uphold social justice, human rights, and even our shared humanity.
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Bioethics councils have come in many shapes and sizes, with different mandates, memberships, and outcomes. What kind of bioethics council would best serve the nation now? How can we move beyond the rancor and polarization—not to mention hyperbole and distortions on all sides—that in recent years have characterized so much of bioethics and the broader politics of science? There is no one answer, but a new council must incorporate viewpoints from Americans of all walks of life, maintain an appropriate distance from both scientific and commercial interests, and build on the experience of other nations.
President Obama’s leadership on stem cell policies and politics begins to show a way forward. The President opened the remarks that accompanied his March executive order loosening restrictions on federal funding of embryonic stem cell research by invoking the work’s great promise, and then immediately moved on to warn against overstating its potential. He noted the “difficult and delicate balance” between “sound science and moral values.” He pledged that research supported by the federal government would be “both scientifically worthy and responsibly conducted” according to “strict guidelines, which we will rigorously enforce, because we cannot ever tolerate misuse or abuse.” He singled out human reproductive cloning as an instance of intolerable misuse: “It is dangerous, profoundly wrong, and has no place in our society, or any society.”
Several months and some 49,000 public comments later, the National Institutes of Health released its final stem cell research guidelines. In accord with the positions that a majority of Americans report to pollsters (and that candidate Obama expressed during the presidential campaign), the guidelines permit federal funding of research using stem cells derived from embryos created but not used in the course of fertility treatments. They exclude funding for research on cell lines derived from human embryos created specifically for research purposes, whether by in vitro fertilization or with cloning techniques.
The president’s leadership was not just a matter of striking a thoughtful tone and including obligatory references to respect for differing views. His emphatic rejection of human reproductive cloning was motivated by the health risks it poses, and also by a clearly articulated moral judgment about right and wrong. This is significant because it goes beyond the narrow safety and procedural considerations that many researchers and bioethicists cite as the only legitimate reasons to forgo efforts to clone humans or attempt other widely opposed forms of human genetic manipulation. It asserts that while science and technology are uniquely positioned to tell us what can be done, in the final analysis social values, mediated and expressed through democratically accountable institutions, must determine what should be done.
A new bioethics council might also look to the path that the president is forging on hot-button social issues like abortion rights and the appointment of a Supreme Court justice. He has worked to widen the perspectives and communities that are included in deliberations, called for empathy in considering the consequences of decisions, and mounted a serious search for common ground while insisting on clear policy lines where they are needed.
Policy advice? Philosophical deliberation? How about both?
In June, when the administration announced its intention to appoint a new bioethics council, a White House press officer told The New York Times that the new council would have a mandate to offer “practical policy options.” He characterized the Bush bioethics council, in contrast, as “a philosophically leaning advisory group.”
Some heard in these remarks an endorsement of the kind of bioethics that focuses on procedural and technical issues—the wording of informed consent documents, the acceptable incidence of high-order multiple births, the details of bio-containment precautions, and the like. These are important matters, and bioethicists have played key roles in bringing them to public attention and proposing ways to address them.
But many genetic, reproductive, and biomedical technologies now in development pose societal challenges of a new and far-reaching kind, raising questions about how we understand and uphold social justice, human rights, and even our shared humanity. Will biotechnology products and practices revive discredited ideas about biology and race? Will they exacerbate existing social inequalities or produce deeper divides and conflicts? Will the pursuit of the “perfect child” reduce our solidarity with people with disabilities? Will women’s reproductive capacities increasingly be bought and sold? Will we look to genes rather than social institutions to understand and improve our lives and communities?
Such questions clearly demand more than improved informed consent protocols or another round of mouse experiments. They call for substantive deliberation about meaning and consequences, among the widest range of stakeholders, and drawing on social, political, historical, scientific and—yes—philosophical knowledge and wisdom.
Bioethics and inclusive democracy
Although it will be challenging, we must find ways to extend the purview of democratic oversight to these questions and challenges. There are many ways in which a national bioethics council could contribute to this effort. Three are briefly described here.
First, although a new bioethics council must involve scientists and bioethics professionals and be rigorously grounded in scientific knowledge, it must not be monopolized by either. We need robust public engagement with the social challenges of human biotechnologies, their purposes and meanings, and their consequences for social justice, human rights, and equality.
Unfortunately, there is currently an asymmetry of influence and access in public discussion of bioethical issues. As Sujatha Jesudason of Generations Ahead pointed out in an essay here earlier this year, “many scientists and industry groups are already well-staffed and well-organized on these issues.” Most Americans, by contrast, have few resources for making their views on these issues known. Allowing the national dialogue to be dominated by professional bioethicists and scientists in white lab coats runs the risks of alienation and backlash.
Any new bioethics council should find innovative approaches for meaningfully involving Americans from all walks of life, with town hall meetings, public consultations, interactive online tools, and the like. In addition, it should include key leaders from the full spectrum of civil society and public interest constituencies. Council members would not formally represent particular communities, but a wider range of perspectives would help to equalize power among different social groups. Special care should be given to ensuring that those under-represented on past bioethics bodies and those particularly affected by the biotechnologies in question now have a seat at the table.
Avoiding “advisory capture”
Second, any new bioethics body should avoid what might be called “advisory capture.” Just as regulatory agencies must guard against being manipulated by the very interests they are meant to keep an eye on, bioethics advisory bodies must maintain an appropriate distance from the scientists and commercial enterprises whose work raises the social dilemmas about which they are deliberating, and from bioethicists whose professional interests are too closely aligned with those scientists and firms.
An illustration of the danger of advisory capture can be seen in a recent statement by a member of the New York stem cell agency’s bioethics board. In the course of a discussion about whether women who provide eggs for cloning-based stem cell research should be paid beyond reimbursement of their expenses, this bioethics expert said, “I think that we are an ethics committee, and I actually think that, if good science demands these oocytes, that we have the obligation to provide them.” At issue here is not agreement or disagreement with the policy in question, but the risk of advisors becoming justifiers, promoters, or rubber-stampers.
Capping the number of scientists and aligned bioethicists on the new bioethics council would help prevent or at least mitigate such problems. In addition, the council should adopt robust conflict-of-interest policies of the sort that regulatory agencies have developed to protect the public interest.
Looking beyond our borders
Third, a national bioethics council should take advantage of the important work that has already been done throughout the world toward development of responsible policies for genetic, reproductive, and biomedical technologies. The United States is in many ways an outlier, with few meaningful regulatory and oversight policies in place. By contrast, many key countries, including the United Kingdom, Canada, France, and Japan, have established national regulatory agencies designed to facilitate research done in an accountable and socially responsible manner, while precluding unacceptable activities.
Although the differences among national cultures and contexts can be significant, members of the new bioethics council could learn a great deal from both the successes and the shortcomings of other countries’ experiences. Consultations and meetings with policy makers and staff who have been involved with these agencies, and with scholars who have studied them, would likely provide important insights.
These suggestions would help put a new bioethics council on a productive and democratically accountable course. They would encourage both substantive and practical insights into the consequential issues it will surely confront. And they are consistent with the values that President Obama has declared will guide his administration.
Marcy Darnovsky, PhD, is associate executive director of the Center for Genetics and Society, www.geneticsandsociety.org. The Center’s recommendations for the Obama Administration are compiled in Responsible Federal Oversight of the New Human Biotechnologies.
Comments on this article
The stem cell issue, in regards to its production, is solved but, what about the Ethics of Medical Experimentation using human beings?
Is there a plan beyond, try it and see what happens?
Remember, a rat grew an ear on its back!
The “gradualism” where we think small steps are safe, before the full doses is tried, is not a viable option when the threshold on what is safe is not established.
August 20th, 2009 at 2:44 amWe all saw Michael Fox plead for his survival but, the only way to establish a safe limit is by experiment and if the patient dies or impaired for life, then we will know a level that is dangerous.
But, how about if some effects take six months or longer? Must we all say “Give a shot. Go for broke!” except the patient?
Yes, I know, after some die, we will know more. Was that the reason for the Tuskegee Syphilis Experiment? How about the Nazi medical experiments? How about the lobotomy give to the daughter of Ambassador Kennedy, in early 1900?
Lobotomy is still legal in some states in the Union and some nations. It was invented and used in the US first, do we have some Ethical responsibility to admit our mistake and try to stop it? Or, do we say “The Genie is out of the bottle, ops!”
Science, it can be argued, is a tool for extending the coping mechanisms of humans. All power is two-edged, in that it can be applied to destructive ends more efficiently. The power of a match to light a fire to produce warmth, or to cook food, can be used to commit arson on a school or a hospital.
There seems (to me, at least) currently to be a broad presumption among both scientists and laymen, that there is no need of any “giver” of higher ethic in science, or outside science, than a societal consensus that some things are not acceptable. After all, if a majority of us think something is not cricket about burning down a school or a hospital, we will not do it. And, just in case a lunatic fringe population of us humans doesn’t grasp that, and abide by it, we have a legal system in place to punish, or reabilitate them, so that some will not just go out and do it again.
How interesting it is (to me, at least) that some inside and outside science academics and applied science professions deem that horrid metaphysical thing called “religion” to be a horrid enemy of scientific progress. Though a majority of scientists DO indulge in one kind of religion or another, the impression given by some (vis a vis C. Dawkins) is that any religious convictions are antithetical to empirical clarity.
If science extends the power to cope, or destroy the vestiges of community coping (as manifest in a school or a hospital), so too does it extend the power to “get away” with cheating.
If there is not any higher law giver, and science and social compacts (conscious or otherwise) are the ultimate tests of what is acceptable in science and society, this raises what might be called they “WHY NOT” problem.
Think of it this way (please). The reasoning behind presuming that a human will perform in “acceptable” ways is that he will want to out of fear of retribution by the community if he gets caught. But if science extends the capacity to use forensics, it ALSO, provides knowledge wherewith a violation of the social existential compact might be evaded by one’s knowing how to leave no forensic path to discovery of the culprit.
In street language, this reads, “Cannot knowledge of forensics to CATCH a researcher in cooking the research stats for personal gain, be applied ALSO to cooking the stats so as not to leave a trace one has done so?
But, then, let us brush off the table any fear of getting caught cooking the stats or lying about what one has observed in a rigorous scientific study. Let us turn, instead, to the
notion that evolution has prepared humans to WANT to so live that we opt for behavior that is conducive to the common good, and opt out of behavior that is contrary to the common good. Has not “good science” gone into demonstrating that the FIRST order of human psychological coping mechanisms are “programed” to save number one, and number one’s closest genetic kin first of all, and one’s tribe secondarily, and humanity tertiarily, or something to that effect? That IS what social psychologists have determined, is it not?
If so, then we have as much as said, on the one hand, that scientists “can be” objective in wishing, in their recording of research stats, in such a way as both to do no harm and to be truthful out of desire of being so, UNLESS, there is some coping beed (survival benefit, if you prefer) for doing otherwise.
Do we not see this then: That what science has come nearest to “proving” (if, indeed, it can prove much of anything) is that if science must rely upon the hierarchy of human coping mechanisms, and there is no higher ethical authority or law giver to answer to, then fudging one’s research stats has only one thing to hold it back, the fear of getting caught. In case I have not made it clear yet, if the researcher has much to gain by producing results that verify a pharmeceutical product will work, it can be worth much to his employer and, hence, can be quite advantageous to himself/herself, whereas, if it does not “work” as hoped, it is worthless, WHY NOT fudge a little.
Shall we object that this would not be “good science.” Who says? There is no higher “good.” One’s livlihood might be at stake. People who die are just gone and existentially as they would be if they never had never been. What’s this metaphysical concept of “good,” anyway. What seems good is only a matter of coping better, FIRSTLY as an individual, SECONDLY as a member of one’s genetic closest genetic likes (family) and somewhere farther down the line the rest of humanity. Biologists and social psychologists and some specialists in science have “established” this, have they not.
How interesting it is, also, (to me, at least) that in every case that has been tried in a court of (human) law, the burden of proof has been upon those who assert that god is. It may never happen, but would it not be a beautiful irony if the shoe were to be put on the other foot, and some atheist biologists were constrained to prove God is NOT!
One atheist writer I admire (for his eloquence and logic, although I do not grant all the ASSUMPTIONS he deems to be self-evident) has offered a sizeable monetary reward for anyone who can prove (empirically) that God exists. What if the countrary offer were made to HIM, offering him double his offer in exchange for proof by him, or anyone else, that God is NOT.
If there is wisdom in these words, think about them. If there is not, so what. Think and do ANYTHING that is “good” in your opinion. Cook your stats in your research and focus only on how to hide your cheating. Be the evolved human you were “meant” to be.
Why not, (:>)
Your friend (and a believer),
August 20th, 2009 at 2:17 pmJeanious
The big gorilla in the middle of the Consultation Room is the incentive to produce more expensive drugs that can show minor improvements but are never tested long enough with a large enough population to find the long term consdequences.
Could there be drugs on the market that initially improve health but in the long term damage the so-called “Immune System” whatever that may be?
Why is that there is no attempt to define how the Immune System works? Is it controlled only in the brain? Do we have any idea for a model on how the Brain works?
We have computer-generated, false-color movies of brain activity but do we have any clue at what are we looking?
October 9th, 2009 at 3:08 amWe can tell activity from non-activity but, do we have a clue as to how and why the activity?
If we were to admit the limits to our medical knowledge, perhaps we can clarify the treatment of, for example, high-blood pressure that, according to some, will produce a dependency that could kill, if interrupted.
Why is it that people with Diabetes and Alzhaimer’s are often found to have low suger?
Could it be that drugs, that counters the brain commands to the heart pump action, for example, ruins the normal brain control of the heart?
My doctor was very clear “If you start taking this drug, you can never stop!”