Beyond Politics
The Strange Saga of the President's Council on Bioethics
by Brandon Keim

Though scientists are perhaps not so apolitical as is sometimes thought, the sort of widespread outrage which seized headlines during February and March of this year was unprecedented in recent history. More than three thousand scientists — among them Nobel laureates, leading medical experts, former federal agency directors, and university chairs and presidents — signed statements by two scientific advocacy groups, the venerable Union of Concerned Scientists and
newcomer Science in Policy, accusing the Bush Administration of gross and intentional manipulations of science. The Administration is not, they said, the first to distort science for political ends; but by systematically suppressing data from the government's own scientists, stacking scientific advisory committees, ignoring independent advice, and misrepresenting scientific knowledge in order to mislead the public, the abuses of our present political leadership have reached levels never before seen in the United States.

The abuses of science identified by the two groups are mind-boggling in scope. Science in Policy, which focused on environmental issues, provided analyses of the Bush Administration's conduct regarding the Arctic National Wildlife Refuge, the Clean Water Act, the Clear Skies Initiative, climate change, the Endangered Species Act, the Healthy Forest Initiative, the National Forest Management Act, the Roadless Area Conservation Rule, the spread of invasive species, Superfund, toxins, and snowmobiles in Yellowstone National Park. To this list the Union of Concerned Scientists added mercury emissions, multiple air pollutants, abstinence-only sex education, airborne bacteria, breast cancer, drug abuse, lead poisoning, workplace safety, reproductive health, Iraq's weapons, arms control, Army science, and nuclear security. Even more issues were detailed in a report released last year by California Congressman Henry Waxman: agricultural pollution, oil and gas practices, healthcare disparities, drinking water, prescription drugs, missile defense, education policy, and — of particular concern to this article — stem cell research.

In July of 2001, President Bush invited Leon Kass, a University of Chicago bioethicist, to make a presentation about research on stem cells, which are derived from both adult tissues and — far more controversially — embryos. Instructed to bring someone with a viewpoint opposite from his own, Kass chose Daniel Callahan of the Hastings Center, a renowned bioethics think tank. A former editor of the liberal publication Commonweal, Callahan's politics may have seemed superficially contrary to those of Kass, who is a fellow at the ultraconservative American Enterprise Institute, but both strongly disapproved of the destruction of embryos to produce stem cells. As a longtime friend and colleague of Callahan, Kass must have known this.

A little more than one month later, in a nationally televised broadcast, President Bush announced his stem cell policy: Federal funding would only be available for embryo stem cell lines established before his August 9 speech. It was a compromise that satisfied few. Some criticized the policy because, despite implying that the destruction of embryos was morally unacceptable, it supported work on stem cell lines already in development, and — perhaps more importantly —
permitted such work to continue in the private sector. Others denounced the inevitable stunting of embryonic stem cell science in the United States, predicting that its potential medical benefits might never be realized — and, even if they were, would emerge in a highly proprietary commercial research system. President Bush insisted that the cell lines established before his announcement would be sufficient to "explore the promise and potential of stem cell research."

Lost, however, in the President's translation was the distinction, made to him one week earlier by a delegation from the National Institutes of Health (NIH), between developed and developing stem cell lines. Not all stem cell lines are capable of sustained growth, and it was impossible to predict which would later be useful. That September, Health and Human Services Secretary Tommy Thompson testified to the Senate that the number of fully established stem cell lines was actually less than half of what the President had implied — though Thompson insisted that many of sixty-four other lines would soon be ready.

Two years later, Jay Lefkowitz, who had recently left his position as head of the Domestic Policy Council in the White House, claimed in a Washington Post op-ed that there was "every reason to believe" that, of seventy-eight cell lines qualifying for federal funds, "more and more will make their way to scientists once they are properly readied." But in an unpublished report to Congress, James Battey, director of the NIH stem cell task force, said that only fifteen of those lines are useful for more than rudimentary research, and under a "best case scenario" only twenty-three lines would ever be available to the research community. Of the remaining fifty-five lines, Battey found that seven are duplicates, seventeen have failed to replicate, and thirty-one belong to institutions outside the United States that neither receive NIH funding nor are likely make their lines "freely available for widespread distribution at any time in the forseeable future." The Administration has not released Dr. Battey's assessment to the public.

Like many politicians before him, President Bush skillfully reserves Friday afternoons for announcements he would prefer not to be covered by the press. These tend to surface in lesser-noticed Saturday news and quickly fade. However, perhaps because of lingering anger at the original echo-box debate between Leon Kass and Daniel Callahan, frustration with the state of embryo stem cell science since the ban on federal funding, disappointment at the failure of Bush's promised stem cell lines to materialize, or simmering disillusionment with the Administration's abuses of sciences — or some combination of them all — the February 27 Friday afternoon dismissal of Elizabeth Blackburn and William May from the President’s Council on Bioethics soon erupted into controversy. Prominent stories in the Washington Post and the New York Times were soon followed by editorials alleging that the Council turnover was ideologically driven, the latest installment of the Bush Administration's stem cell debacle.

Formed in September of 2001 to evaluate the social and ethical implications of biomedical and behavioral technologies, the President’s Council on Bioethics was originally viewed with suspicion by skeptics, who felt it was meant only to offer elaborate justifications of judgements the Administration had already made. With Bush’s choice of Leon Kass to chair the Council, whose first task would be to evaluate the ethics of cloning, such suspicions appeared grounded. However, though the Council unanimously condemned cloning for reproductive purposes, ten of its seventeen members actually voted against a ban on cloning embryos for stem cell research. This potentially embarrassing situation was avoided only by a last-minute change to the question being voted upon. Though a majority of the Council eventually approved the recommendation of a four-year moratorium on research cloning — a scenario which they had not previously discussed — their first report, Human Cloning and Human Dignity: An Ethical Inquiry, expressed a wide range of views, including dissenting personal statements from Council members.

Among the critics of Human Cloning, and also of the Council's subsequent Beyond Therapy: Biotechnology and the Pursuit of Happiness and Monitoring Stem Cells, released in, respectively, October 2003 and January 2004, were Blackburn and May, the two Council members whose February dismissals caused such a stir. Unlike Kass, both Blackburn, a highly regarded cell biologist, and May, a widely respected theologian, supported research cloning. In a Washington Post op-ed entitled "We Don't Play Politics With Science," Kass insisted that the replacement of May and Blackburn was completely apolitical. He pointed out that May had originally intended to serve no longer than two years, and, after an unsubtle jab at Blackburn's spotty attendance of Council meetings, cited the continued, vociferous presence of other dissenters as evidence of the Council's intellectual openness.

Though some thought May might have been targeted by the Administration for his December criticisms of its controversial Medicare plan, and wondered if Blackburn's attendance — she was present at only half of the Council meetings — merely
provided a convenient pretext for her replacement, this part of Kass's argument seemed plausible. Quite unbelievable, however, was Kass's claim to ignorance of the political or religious backgrounds of their replacements: Diana Schaub, chairwoman of Loyola College's political science department, Peter Lawler, a political scientist at Berry College, and Benjamin Carson, a pediatric neurosurgeon at Johns Hopkins University. Setting aside the preposterousness of the idea that new Council members would be chosen without any foreknowledge of their views on issues the Council may consider, there is ample reason to believe that Kass was quite familiar with their work.

In addition to reviewing Human Cloning in First Things — a conservative religious journal to which Kass has been a frequent contributor — Diana Schaub had served with Kass on the publication committee of another conservative publication, The Public Interest. They also participated in an October 29, 2002 American Enterprise Institute panel discussion on cloning, where Schaub equated research cloning to "slavery plus abortion," and another in December of 2003, where the topic of discussion was Beyond Therapy. Peter Lawler also participated in that discussion, and had reviewed Beyond Therapy for National Review Online. Benjamin Carson is a prominent Seventh Day Adventist activist who had signed a petition in opposition to all forms of human cloning. Of the three, Carson is perhaps the only one with whose views Kass could conceivably have been unfamiliar; yet his presence calls into question another of Kass's claims — that the Council is about to move its focus to neuroethics and neurological technologies. With Carson the lone Council member with expertise in
neuroscience, such a shift appears either unlikely or unwise. Meanwhile, though Kass may decry charges of religious stacking as "malicious and false," pro-life groups felt otherwise. The Family Research Council, in an article entitled "Good News on the Pro-Life Front," celebrated the replacement of two Council members who "had strongly supported conducting research on human embryo cells" with "three new members that fall more in line with the President's pro-life views."

Controversy over the Presidential Council on Bioethics is not limited to its membership. Janet Rowley, Michael Gazzaniga, and Blackburn, who during the preparation of the Council’s reports were its only practicing scientists, jointly wrote a sharply critical introduction to a special printing by the Dana Press of Beyond Therapy; Blackburn and Rowley co-authored a People's Library of Science article entitled "Reason as Our Guide," in which they outlined the shortcomings of both Beyond Therapy and Monitoring Stem Cells; and, in addition to making her case to interviewers from numerous mainstream newspapers, Blackburn explained herself in a Washington Post op-ed called "A 'Full Range' of Bioethical Views Just Got Narrower."

Because of their scientific credentials, the charges of Blackburn and Rowley are potentially most significant in relation to Monitoring Stem Cells. In summary, they alleged that the report's science was skewed, ignoring or obscuring important facts, with the effect of understating the potential for research and therapy of embryonic stem cells while overstating that of adult stem cells.

Blackburn and Rowley’s criticism is in a few cases easily checked: for instance, the pair claim that Monitoring Stem Cells fails to make clear "that the best-characterized adult stem cells are hematopoietic stem cells," though the report states precisely that in its introduction. Other instances are not so clear-cut. Blackburn and Rowley say that the report ignores a “vast difference” in our understanding of embryonic and adult stem cells, with the latter having far less therapeutic potential. The report calls this view a "presumption," and the precise differences a "major unresolved issue." But it also indicates that most adult stem cells may in fact have less therapeutic use, and posits that each type of stem cell may be suited to particular therapies: for example, adult for the treatment of elderly Parkinson's patients, and embryonic for children with Type I diabetes.

Skeptics of the Council's work might see such a stance as cleverly obfuscatory equivocation. However, three prominent stem cell researchers reviewed the report's science prior to its publication; according to Kass, each "pronounced the treatment fair, careful, and accurate," and all their suggested changes were made. Among the reviewers was James Thomson, one of the two scientists who discovered embryonic stem cells in 1998, and who in 2001 filed a federal lawsuit demanding that the National Institutes of Health fund embryonic stem cell research. (The other discoverer, John Gearheart, is equally vocal in his advocacy, and each was commissioned to write one of the seven scientific review articles appended to Monitoring Stem Cells). It is difficult to see how a report flawed in the manner suggested by Blackburn and Rowley could pass unscathed through such a gauntlet. And though the scientific accuracy of Beyond Stem Cells may be debatable, it is clear that Blackburn's accusations of a biased "resistance" to the accurate portrayal of stem cell science, driven by "the strong implication that medical research is not what God intended," are unfounded. So is her suggestion that the report was guided by the 'wisdom of repugnance,' a (notoriously untrustworthy) moral compass elsewhere espoused by Kass but wholly absent in Monitoring Stem Cells. The report's discussions of policy and ethics are comprehensive and evenhanded, with the ethics chapter qualifying its assertions — 'according to,' 'others believe,' et cetera — so that no position is ever favored over another or permitted to score even a slight rhetorical victory.

If anything, the conclusion implicit in the report's discussions is one equally applicable to supporters and opponents of embryonic stem cell research: The Bush Administration's policy is fundamentally flawed and unsustainable. If one believes that destroying an early-stage human embryo to harvest stem cells for medical research is morally unacceptable, then
denying federal funding to such research, while permitting it to continue in the private sector, is hypocritical. Equally unpalatable is federal funding for stem cell lines developed prior to the policy's August 9, 2001 inception; if destroying the embryos is wrong now, it was wrong then. Meanwhile, if one believes the destruction of embryos for research purposes is justifiable, then the Bush policy is crippling an area of science with potentially great human benefits — and, moreover, ensures that any progress will arise in a commercial research system whose public interest is limited to paying customers.

As with their complaints about Monitoring Stem Cells, some criticism by Blackburn and Rowley of Beyond Therapy apparently relies on a reading that is both selective and, at times, mistaken in its understanding of the text's purpose. In "Reason as Our Guide" they claim that the report overstates the possibility of parents someday selecting for their offspring such traits as temperament or intelligence, mentioning the scientific unlikelihood of this only "in passing," and making it easy to believe that customized children are imminent. Yet only the most careless reader would misunderstand the report's admonition that "proph-ecies and predictions of a 'new (positive) eugenics' seem greatly exaggerated. In consequence, much of the public disquiet created by loose talk of genetically engineered 'designer babies' seems unwarranted." In the subsection devoted to the technical possibilities of directed genetic change, "dreams of fully designed babies" are dismissed as "pure fantasies."

Most of the "Better Children" discussion — the report's other chapters, along with its introduction and conclusion, are "Superior Performance," "Ageless Bodies," and "Happy Souls" — is devoted not to genetic engineering, but to reproductive
and child-rearing biotechnologies which have already arrived, and whose rapid growth has outpaced critical evaluation:
prenatal diagnosis, sex selection, and the medical use in children of psychotropic drugs. Far from taking its specter literally,
Beyond Therapy uses issues raised in the discussion of genetic engineering as a convenient starting point to evaluate these other, immediately relevant practices.

Blackburn and Rowley’s other major complaint is with the report's portrayal of aging-retardation research as driven by a desire for immortality. Despite such caveats as "the scientific quest to slow the aging process is not explicitly aimed at
conquering death," the report indeed mischaracterizes the motivations of many researchers; and though some of them — both fringe and mainstream — indeed seek their fountain of youth in biotechnology, the report represents their influence too greatly. However, very little of "Ageless Bodies" is spent deliberating immortality. After summarizing contemporary anti-aging science — from dietary recommendations to gene therapy, hormone treatments, and antioxidant use — the
implications of radically extended life are first considered at the individual level, and then the societal. In these areas, the criticisms of Blackburn and Rowley verge on the ridiculous. They accuse the report of having "minimized discussion of potential positive aspects of slowing biological aging, such as prolonged good health." For the record, the Ethical Issues section of "Ageless Bodies" begins,

Elsewhere, the report describes the desire to live longer as "one form of the true love of life . . . driven by a deep commitment to the activities and engagements to which our lives are dedicated." Which, along with much of the chapter's commentary, runs directly counter to Blackburn and Rowley's charge that the Report depicts anti-aging research as “predominantly to serve vanity." The pair also describe as evidence of conservative bias the report's reasonable assertion that a radically prolonged childhood would cause mental and physical development to proceed at different rates, and misconstrue the report's hypothesizing, "without presenting scientific or reliable evidence," that life-extension research "may result in a lifetime obsession with immortality" — a possibility that is mentioned as no more likely than any other, but deserving of consideration all the same. Also considered is whether a radical extension of lifespan might affect the nature of the commitments we make; our reproductive decisions; our conception the life cycle; and the structure of the working world.

The “Superior Performance” and “Happier Souls” chapters are similarly contemplative, examining, respectively, the nature of accomplishment and fulfillment, and how biotechnological augmentation could change the relationship between effort and accomplishment, enhanced and unenhanced, reality and mood. Unlike previous reports, particularly Human Cloning and Human Dignity, Beyond Therapy is largely philosophical. It also, as is quite clear from the outset, makes a very necessary and seemingly self-evident assumption, one sometimes overlooked by individuals engrossed in the immediate specificity of a particular discovery or branch of research: That technologies are often adapted in ways never conceived by their creators.

The effects of the biotechnologies discussed in Beyond Therapy, first adopted as therapeutics and later adapted as enhancements, are likely — especially in the beginning — to be wildly disproportionate in their distribution. The theoretical consequences of this receive glaringly little attention, an omission all the more inexplicable given the Council's admission in the conclusion that distributive justice, "a matter of great interest to many Members of this Council, though little discussed in previous chapters," may cause "severe aggravations of existing 'unfairnesses' in the 'game of life,'" favoring the wealthy and the privileged in creating "a biotechnologically improved 'aristocracy.'" Without intervention, they say, this "worrisome possibility" appears to be a "natural outcome of . . . our existing inequalities in wealth and status, the continued use of free markets to develop and obtain the new technologies, and our libertarian attitudes favoring unrestricted personal freedom for all choices in private life."

This skepticism for market values is quite surprising in a document produced under an Administration which has at times equated anti-globalism activists with terrorists, and recommended we respond to national tragedy by going shopping. And while the Council is willing to countenance the careful use of biotechnological enhancements for soldiers and surgeons, whose work serves the public good, it worries that insatiable economic logic may eventually demand their use among workers expected to labor longer and harder than naturally possible (with their earnings spent on the seductive offerings of a pharmaceutical industry which manufactures desires "almost as effectively as pills.") In our work, writes the Council,

Unfortunately, the report's criticism of Western capitalist 'democracy' — seen by Council member Francis Fukuyama as the pinnacle, history-ending accomplishment of human civilization — is, for all its vehemence, disappointingly incomplete. That the political and economic environment in which biotechnologies will emerge deserves to be critiqued as thoroughly as the biotechnologies themselves seems only logical, but the recommendation is never made.

This odd timidity is perhaps explained by the report's scapegoating of libertarian ideals, accompanied elsewhere in the report and in Kass' other writings with admonitions against 'liberalism' in its classical, morally permissive sense. In Life, Liberty, and the Defense of Dignity, Kass blames "liberalism and its alliance with the modern technological project" for corrupting our sense of human dignity, making our pursuit of happiness "perfectly compatible with utter self-indulgence, mindless pastimes, and the factitious gratification of high-tech amusements and drug-induced euphoria." But the homogenizing coccoon of mediated images and illusory experience into which individuals are lured from infancy is not the project of 'liberalism' or 'libertarianism,' but the vehicle by which modern power is sustained, by which satisfaction — or at least complacency — with prevailing social and economic norms, and a profitable dissatisfaction with ourselves, is nourished. The modern 'obsession with individualism' does not take the form Kass thinks; individualism and selfishness are two profoundly different things, and the individualism of most people is tightly circumscribed, if not altogether choked, by
the conditioning of consumerism and modern capitalism. An example of this is the wildly popular phenomenon of tellingly named 'reality television' shows, in which rampantly predatory self-interest is both valorized and, even worse, made to seem perfectly normal.

However, running beneath Beyond Therapy's confused conception of individualism is an admirable devotion to the individual. Biotechnologies are considered cause for concern when their adoption might threaten our individuality and pursuit of happiness, increasing our native powers at the price of "self-alienation," threatening us with the loss,
confoundment, or abandonment of our identity — and the latter is not conceived, as Blackburn and Rowley allege, as
intertwined with inviolable notions of godliness or nature. The 'wisdom of repugnance' is challenged, with initial feelings considered untrustworthy as anything but grounds for rational inquiry. What is considered 'natural' is not mystical,
but commonsensical; and 'playing God' is not characterized as usurping the rightful place of some divine entity, but shorthand for taking profound actions with insufficient wisdom. The guiding principle of Beyond Therapy is not anti-scentific mysticism: it is sympathetic, unapologetic secular humanism.

The reception by bioethicists and scientists of Beyond Therapy has been largely dismissive. As chronicled by Carl Elliot in Slate, David Magnus of the Stanford Center for Biomedical Ethics wrote that the report failed because Council members were "blinded by their own conservative ideology." Arthur Caplan of the University of Pennsylvania told Nature Biotechnology that it is "a politically conservative report" which promotes "the quasi-religious view that the natural is good. The editors of Nature Biotechnology simply mocked the report, penning a satirical editorial which concluded by saying, "There are times for getting to the damn point."

Unfortunately, these misreadings are perfectly understandable. With its systematic and unrelenting manipulation of science for political ends, the Bush administration has destroyed its own credibility; and Kass, playing clumsily along with the ideological skewing of the President’s Council on Bioethics, has likewise compromised his own integrity, casting himself — and, by extension, the Council — as a political pawn whose future work will be met with deserved skepticism. But while the Council indeed appears destined to become a house organ for rationalizing whatever policies are demanded by religious dogma, market interests, or political expediency, their latest reports, especially Beyond Therapy, do not deserve to be seen in this light. That biotechnologies may fundamentally change ourselves and our world has become a truism, repeated so often as to become abstract; in considering how we raise our children, how we judge accomplishment, what it would be like to live longer, and what makes us happy, Beyond Therapy makes the consequences of biotechnology immediate and, above all, personal. For such an important document to be devalued by the conduct of the Bush administration and Leon Kass is deeply unfortunate.

Brandon Keim is the former Communications Director of the Council for Responsible Genetics.