The spring and summer of 2008 saw little decisive action in Washington on bioethics issues, as Congress began to concentrate on appropriations measures and “must-pass” legislation and the news media turned their attention to the presidential campaigns.

Human–Animal Hybrid
Prohibition Act

One notable event was the introduction on April 24 of the Human–Animal Hybrid Prohibition Act (H.R. 5910) in the House of Representatives. Introduced by Rep. Chris Smith (R-NJ), it had thirteen cosponsors by the end of June. An identical bill, introduced in November 2007 by Senator Sam Brownback (R-KS), had eighteen cosponsors, including Democrat Mary Landrieu (D-LA) and presumptive Republican presidential nominee John McCain (R-AZ). Such legislation seems both timely and necessary in light of the British parliament’s decision to allow efforts to make cloned human embryos using animal eggs.(1) Such hybrid embryos would have human nuclear DNA, but include some animal mitochondrial DNA from the cytoplasm of the egg, with unpredictable results for any patient who may someday receive stem cells derived from this source. The House and Senate bills would forbid U.S. researchers to produce such “cybrids” as well as human–animal hybrids produced by other means, such as by combining human sperm and animal eggs or vice versa. The legislation would also prohibit placing a human embryo in a nonhuman animal’s womb or vice versa.

Enactment of the
Genetic Information Nondiscrimination Act

More than twelve years after such legislation was first introduced in Congress, the Genetic Information Nondiscrimination Act (H.R. 493) was finally enacted into law on May 21 (Public Law 110-233). This new law prohibits health insurers and employers from discriminating against individuals and their families on the basis of the results of genetic tests—or as President Bush said when signing the bill, “it protects our citizens from having genetic information misused.”(2)

A key breakthrough in clearing the bill for passage was due to the efforts of Rep. Bart Stupak (D-MI), who in April 2007 won House approval for compromise language ensuring that genetic information regarding an unborn child or a child placed for adoption cannot be misused to discriminate against a family.(3) In April 2008, the Senate finally accepted the House’s new language on this point, and resolved a final technical issue regarding companies’ legal liability, before unanimously approving a final bill. The House accepted this final version in May by a vote of 414 to 1.

The significance of this legislation can only grow as modern science discovers more and more genetic markers for diseases and disabling conditions, or for an increased risk of developing these in later life. Strong nondiscrimination laws will be needed to ensure that such discoveries are used to facilitate and personalize treatments for affected individuals, not to exclude them or their families from employment or health coverage because a company considers them a “bad risk.” In particular, such a company will be barred from pressuring couples to “screen” their embryos for genetic perfection, or to abort (or cancel adoption plans for) a child expected to need medical care in the future for a genetically based condition.

House Hearing on
Stem Cell Research

On May 8, 2008, the Subcommittee on Health of the House Committee on Energy and Commerce held a hearing titled “Stem Cell Science: The Foundation for Future Cures.” Subcommittee member Diana DeGette (D-CO), longtime sponsor of bills to promote federal funding of embryonic stem cell research, announced in advance that from her perspective the hearing had two goals: to disprove the claim that new advances in other stem cell research provide a “substitute” for embryonic stem cell research; and to promote new legislation she planned to introduce in June 2008 to impose “federal ethical oversight” of all stem cell research in the United States, whether publicly or privately funded.(4) In both respects the hearing must have been a disappointment to her.

To be sure, the hearing began with introductory statements by some subcommittee members hailing the promise of embryonic stem cells.(5) Subcommittee chair Rep. Frank Pallone (D-NJ) said that “the scientific community appears to be in agreement” that embryonic stem cells hold “the greatest promise” for treatments. Full-committee chair Rep. John Dingell (D-MI) complained that embryonic stem cell funding has been restrained by “politics,” despite “the well-documented benefits” of embryonic stem cells (none of which he identified). Rep. DeGette said it makes her “particularly angry” for people to hold up adult stem cells as a “substitute” for embryonic stem cells when the latter have shown such great promise while adult cells have shown “no clinical promise” for diseases such as juvenile diabetes. Even before the scientists themselves testified, however, other subcommittee members such as Rep. Marsha Blackburn (­R-TN) pointed out that adult stem cells, not embryonic stem cells, have been used in successful clinical trials. Rep. Mike Ferguson (R-NJ) observed that his own mother’s life had been extended through an adult stem cell treatment when she had multiple myeloma; and Rep. Tim Murphy (R-PA), noting that the clinical benefits of embryonic stem cells so far are “zero,” also observed that ethical concerns about destroying early human life cannot simply be dismissed by calling them “politics.”

The lead witness was Dr. Elias Zerhouni, Director of the National Institutes of Health. Although Dr. Zerhouni disagrees with President Bush and openly favors federal funding of embryonic stem cell research, he declined to provide some of the answers the subcommittee’s embryonic stem cell enthusiasts wanted. He said there is no clear sign that current funding restraints are placing the United States behind other countries in stem cell research, as about 50 percent of all publications on the subject worldwide are by U.S. researchers. He also denied that U.S. researchers are running out of existing embryonic stem cell lines for federally funded research, as more than two dozen eligible cell samples (some of which have never been cultured in animal feeder cells) remain in storage for future use if needed. He also acknowledged that the tendency toward tumor formation is “a problem you need to resolve” before anyone could try to use embryonic stem cells for a human treatment.

Asked about the new advance in reprogramming ordinary adult cells into “induced pluripotent stem cells,” Dr. Zerhouni said these cells seem to have all the versatility of embryonic stem cells, calling the advance “extraordinarily exciting” and “one of the biggest breakthroughs in stem cell research in recent years.” He said he expected an “exponential growth” in use of these cells, as the technique for making them is “more practical” and “easier to do” than deriving stem cells from embryos.(6) He added that these reprogrammed cells could ease the moral “concerns” that many have about embryonic stem cells.

When Rep. Tammy Baldwin (D-WI) invited Dr. Zerhouni to explain how the Bush policy is stifling privately funded research, by forcing researchers to build entirely separate laboratories for their research using cell lines not eligible for federal funds, Dr. Zerhouni responded that this is actually not required by the federal policy and is not happening. “We haven’t had a case” where this was a concern, he said.

The panel then heard from researchers in the field, and from two patients.

Two researchers—John Gearhart, Ph.D., of Johns Hopkins University, and Dr. George Daley of Harvard—clearly saw it as their task to sing the praises of embryonic stem cells, which Dr. Daley insisted are still the “gold standard” for stem cell research. He said his laboratory is doing research using reprogrammed adult cells, which he agreed constitute “a major breakthrough in medical research,” but is also continuing research in embryonic stem cells and even pursuing the cloning of human embryos for their stem cells. In response to a later question, he said he also favored allowing the creation of human–animal hybrid embryos if this should prove useful for research. Asked about the clinical uses of embryonic stem cells, Dr. Daley insisted that this is “a fresh new technology” that faces “a very long and tedious path” toward treatments. Dr. Gearhart later agreed that treatments from embryonic stem cells may take a decade or two to emerge.

These admissions made the testimony of two patients especially poignant. Douglas Rice, a heart patient from Washington state, described how his heart was repaired and his life saved by a treatment using adult stem cells from his own body—a treatment for which he had to travel to Thailand using his own money, because the United States was not yet conducting clinical trials in this life-saving technique. Mr. Rice urged expanded funding for adult stem cell clinical trials to save patients here and now, adding that “siphoning off federal funding for embryonic stem cell research has not helped patients like me.”

Also speaking was MS patient Weyman Johnson, chairman of the National Multiple Sclerosis Society. Despite the testimony by his own scientific allies that embryonic stem cells may not treat human diseases for many years to come, he insisted that “embryonic stem cell research holds an incredibly unique promise to repair nerve cells, to slow the progression of MS, to help find a cure.” Ironically, the day before the hearing, public reports had emerged of over a dozen MS patients in Canada experiencing an unexpectedly dramatic and lasting remission of their disease—from an adult bone marrow stem cell treatment.(7) Supporters of adult stem cell research distributed these reports at the hearing.

Other researchers at the hearing reported on progress toward using adult stem cells to treat patients. Dr. Amit Patel of the University of Pittsburgh described how he has treated over a hundred heart patients using adult stem cells, and trained other physicians to treat many more. And John Fraser, Ph.D., of Cytori Therapeutics in California outlined progress toward using adult stem cells, including stem cells obtained from fat tissue, to treat various conditions. “The natural role of adult stem cells in repair and regeneration makes them ideally suited for clinical use,” said Dr. Fraser. “This has been proven in tens of thousands of bone marrow transplant patients in the last forty years. This paradigm is now increasingly being repeated as other adult cell types associated with repair and regeneration are being applied in different diseases.” Dr. Fraser concluded that he and his colleagues “are very optimistic regarding the ability of our approach to harness the natural role of adult stem and regenerative cells to provide clinical and cost-effective treatments for a range of human diseases in the near future.” There was nothing here to document the “unique promise” of embryonic stem cells.

Rep. DeGette’s other goal, enlisting support for legislation to give the NIH oversight of all privately funded stem cell research in the United States, also sparked little enthusiasm. Dr. Daley said such ethical oversight would be useful (no doubt assuming that under Rep. DeGette’s bill, the research in cloning and human–animal hybridization that he favors would not be among the abuses found to be unethical). But Dr. Zerhouni wondered to what extent the NIH is equipped to oversee research it does not fund, and other researchers expressed little interest in having more federal regulation imposed on their work.

A final witness, Dr. Joseph Bertino of the Cancer Institute of New Jersey, was apparently invited by subcommittee chair Frank Pallone so that Rep. Pallone could highlight the wonderful things happening with embryonic stem cells in his home state. However, two striking facts emerged from Dr. Bertino’s testimony. First, in November 2007, New Jersey voters decisively defeated a ballot initiative to boost public funding of embryonic stem cell research in the state (making it the first ballot initiative to be defeated in the state in seventeen years, according to Rep. Ferguson of New Jersey). Second, while stem cell research is being conducted with state funds already appropriated by the legislature, all the promising research projects Dr. Bertino specifically cited turned out to use adult stem cells.

The upshot was a sobering message for Rep. DeGette: Be careful what you wish for. If you say you want a hearing to show which stem cell research is creating a foundation for future cures, you may accidentally get just that.

U.S. Bishops’ Statement
“On Embryonic Stem Cell Research”

On June 13, the Catholic bishops of the United States at their Spring 2008 general meeting made their most authoritative contribution thus far to the national debate on stem cell research. Their statement “On Embryonic Stem Cell Research,” approved by a vote of 191 to 1, is the first document specifically on this issue to be approved by the full body of bishops.(8)

The statement acknowledges the recent breakthroughs in adult and cord blood stem cells, and in reprogramming adult cells into “induced pluripotent stem cells,” which undermine the claim that human embryo destruction is necessary for scientific and medical progress. However, the statement’s chief focus is on the intrinsic moral wrong of destroying human lives, at any stage of development, to serve a supposed “greater good.” It responds to various arguments offered to justify such destruction in this case, such as the argument that so-called “spare” human embryos are not truly human beings, do not have human rights, or may justifiably be killed because they will “die anyway.” It also reviews how efforts to pursue embryonic stem cell research have led researchers and their allies to defend ever more egregiously unethical practices such as human cloning, exploitation of women for their eggs, “fetus farming” and human–animal hybridization. The bishops declare:

It now seems undeniable that once we cross the fundamental moral line that prevents us from treating any fellow human being as a mere object of research, there is no stopping point. The only moral stance that affirms the human dignity of all of us is to reject the first step down this path. We therefore urge Catholics and all people of good will to join us in reaffirming, precisely in this context of embryonic stem cell research, that “the killing of innocent human creatures, even if carried out to help others, constitutes an absolutely unacceptable act.”(9)

News coverage of the statement was generally respectful, with some articles being especially helpful in understanding the statement’s message and context.(10) One exception was the headline for Reuters’ wire service story, “Bishops condemn stem cell research,” which ignored the statement’s strong support for ethically responsible stem cell research.(11)

Coverage in the St. Louis Post-Dispatch dwelled on the political context, noting that both major presidential nominees at this point seem to oppose the restraints President Bush has placed on federally funded embryonic stem cell research. While the Obama campaign declined the newspaper’s request for an interview, Bob Heckman of the McCain campaign said that Senator McCain’s position on embryonic stem cell research funding “was a tough decision for him to make, like it is for many pro-life Catholics.” Heckman added, “He has said that this is a very difficult decision for him and that his mind is genuinely open ... He is encouraged by advancements in the science, and he hopes it gets to a point where this is a moot question.”(12)

Oddly, the most vociferous article attacking the bishops’ statement appeared in the Orlando Sentinel hours before the bishops approved it or even considered final amendments. The author was Jon O’Brien, a former program manager for International Planned Parenthood Federation who now heads a pro-abortion group calling itself “Catholics for Choice.” O’Brien accused the bishops of “going against a long Catholic tradition of supporting scientific endeavor,” citing a passage of the Catechism of the Catholic Church (although the passage, like the U.S. bishops’ statement, praises research only when it “does not override moral laws”). O’Brien’s real complaint is that the bishops do not bow down to scientists as our infallible moral teachers: “As governments and scientists around the world aver that stem-cell research is ethical and consistent with contemporary morality, the hierarchy places religious dogma at the center of its public-policy pronouncements, rather than sound scientific reasoning.”(13)

O’Brien never explains how the bishops could simultaneously be contradicting the Catechism and over-emphasizing “religious dogma.” Nor does he ever become clear on what “dogma” he wants to denounce, or what “scientific reasoning” he would offer as the key to sound morality. But at least it should have been clear to O’Brien, and to the asleep-at-the-switch editors of the Sentinel, that publicly attacking a statement that you couldn’t have read because it didn’t yet exist is, well, unscientific.

New Poll on Embryo Research

The O’Brien opinion piece mentioned above, like similar articles before it, claims that “the vast majority of Americans” endorse destroying human embryos for stem cell research. Such simplistic claims are called into question by a new detailed survey conducted by the polling company, inc. and commissioned by the Ethics and Public Policy Center.(14)

In this survey of over a thousand Americans, 59 percent of respondents said they are “familiar” with stem cell research—but only 23 percent of the total sample knew that adult stem cells had resulted in treatments for disease, and 32 percent wrongly thought that embryonic stem cells had done so. Remarkably, those who thought they were familiar with the topic were even more likely to get this wrong, with 40 percent of this group saying that embryonic stem cells had produced cures or treatments.

In all, 69 percent of respondents said they support “stem cell research.” But when the difference between adult and embryonic stem cells was explained to them, only 45 percent supported both kinds of research, while 39 percent supported adult but not embryonic (and 7 percent supported embryonic but not adult). When presented with two position statements—one saying it is ethical to destroy human embryos for the research due to the hope of curing disease, the other saying it is unethical because embryos are human beings that should be allowed to grow and develop—41 percent agreed that it is ethical while 51 percent said it is unethical.

Demonstrating people’s ambivalence on such issues and their ability to shift opinion based on which aspect of the issue is highlighted, 54 percent agreed with a statement that the costs of the diseases that embryonic stem cells may treat outweigh the costs associated with destroying embryos; yet 62 percent agreed with a statement that an embryo is a developing human life that should not be destroyed for research purposes. The respondents also divided evenly on whether unwanted or “spare” embryos from in vitro fertilization should be destroyed for research (47 percent support, 48 percent oppose).

Asked about the impact of new advances using adult stem cells and “reprogrammed” (induced pluripotent stem) cells, 66 percent agreed that these advances could end the embryonic stem cell debate, and 61 percent agreed that public funds should support these alternatives and not research requiring the destruction of human embryos. These results provide some support for the view expressed above by the McCain campaign that scientific advances may help resolve this debate.

The survey also asked about further steps toward a Brave New World. Most respondents opposed human cloning for any purpose (with 25 percent supporting its use for attempted babymaking and only 18 percent supporting its use for making embryos that would be destroyed in research). Sixty-seven percent opposed using in vitro fertilization to create embryos solely for research in which they are destroyed, 71 percent opposed the creation of human–animal hybrid embryos for research, and only 10 percent supported the idea of allowing embryos to be bought and sold for research purposes.

Remarkably, asked whether it should be legal for parents to terminate a pregnancy when testing “fairly soon after conception” detects a genetic condition, 57 percent said this should be legal for a fatal condition that would end the child’s life before or shortly after birth; but only 20 percent said it should be legal for a serious but nonfatal condition like Down syndrome, and only 3 percent would allow it to select the child’s sex.
Reviewing the results, author Yuval Levin concludes that “Americans remain uninformed and undecided about the novel possibilities biotechnology presents. The potential for medical advance draws support and excitement; the potential for unethical practices evokes concern and opposition. ... If there is one thing we can say with some confidence about American public opinion on these issues, it is that science and ethics marching together, rather than in opposition, would be a sight that all could welcome.”(15)

Another recent study of public opinion, conducted by researchers at the University of Wisconsin, confirms that the national debate on this issue is no simple confrontation between those who know the scientific facts and those who do not. The study found that public attitudes on embryonic stem cell research are shaped largely by “value predispositions,” such as the role of religion in one’s life, and to a lesser extent by “cues” picked up from news media, with amount of scientific knowledge playing “a minor role.”(16) Only among the minority of Americans who defer to scientists generally for their ideological views did greater knowledge of the subject correlate with stronger support. Says one author of the study, Dietram Scheufele, “Highly religious audiences are different from less religious audiences. They are looking for different things, bringing different things to the table ... It is not about providing religious audiences with more scientific information. In fact, many of them are already highly informed about stem cell research, so more information makes little difference in terms of influencing public support. And that’s not good or bad. That’s just what the data show.”(17)

The Attack on “Dignity”

As noted in the last “Washington Insider” column,(18) one of the most recent publications by the President’s Council on Bioethics is a fascinating book-length collection of essays titled Human Dignity and Bioethics (Washington, D.C.: March 2008). This book, and the Council discussions leading up to it, reflect the legacy of former Council chair Dr. Leon Kass, whose effort to broaden and deepen bioethics debates by engaging basic issues of human nature and meaning has continued under his equally distinguished successor Dr. Edmund Pellegrino.

The idea of “human dignity” has become an essential albeit notoriously slippery concept in modern bioethics debates, and has become especially indispensable in multicultural and international contexts, as seen in UN documents on bioethics and human rights.(19) In 2005, the U.N. also urged its member nations “to prohibit all forms of human cloning inasmuch as they are incompatible with human dignity and the protection of human life.”(20)

Such principled declarations are anathema to those who think the task of b­ioethics is, in the words of Father Richard Neuhaus, to “professionally guide the unthinkable on its passage through the debatable on its way to becoming the justifiable until it is finally established as the unexceptionable.”(21) And so the Council’s book, though evenhanded and scholarly in its treatment, has come under scornful attack.

Writing in The New Republic, Harvard psychology professor Steven Pinker criticizes “the stupidity of dignity,” warning against the influence of “theocons” (theological conservatives) who are, among other things, “imposing a Catholic agenda on a secular democracy and using ‘dignity’ to condemn anything that gives someone the creeps.”(22) He notes ominously that many contributors to the Council’s book on dignity are Catholic, and most of them (like most Americans generally, one is tempted to observe) have “religious entanglements.” However, Pinker reserves his most vicious jibes for Jewish layman Leon Kass, accusing him of “pro-death, anti-freedom views” because he holds there are moral limits to our efforts to extend the human lifespan and to “own” and re-make our own bodies.

Dismissing such moral limits, Pinker claims that the concept of dignity is almost entirely useless in bioethics, because any positive value in the idea is already found in the idea of untrammeled autonomy—including our autonomy to pursue life and health in ways that trample on (what traditionalists would call) human dignity.

“Dignity is a phenomenon of human perception,” adds Pinker. It is a set of ­aesthetic “cues” (such as cleanliness and attractiveness) that tend to trigger “ascriptions of worth” from other human beings. As such, he claims, dignity is “fungible” and can be traded off for other values—after all, “getting out of a small car is undignified.” At this point his essay becomes mere wordplay on an aesthetic ­notion of “being dignified” that has more to do with an etiquette class than with the international human rights tradition.

Several pointed responses to Pinker’s tirade have appeared in print. In National Review Online, Yuval Levin notes that “Pinker’s essay is a striking exhibit of a set of attitudes toward religion and the West’s moral tradition that has become surprisingly common among America’s intellectual elite.” Those attitudes include “an inclination to reject any idea drawn in any way from a religiously inspired tradition—which unfortunately includes just about everything in the humanities.”(23)

Also responding is an editorial in the Vatican newspaper L’Osservatore Romano, no doubt confirming Pinker in his suspicion that human dignity is a papist plot. The article observes that reducing dignity to “autonomy” would automatically eliminate respect and protection for those who cannot exercise autonomy, such as the unborn and the debilitated elderly. “To affirm that all human beings intrinsically have dignity means to deny the pretext of extrinsically distinguishing between the ‘worthy’ and the ‘unworthy,’” says the author, a professor of jurisprudence in Rome. Respect for human dignity “does not halt progress, but orients it in the direction of justice, which can be based only on the equality of all human beings.”(24)

In one respect Pinker’s essay may be beneficial in clarifying the choice increasingly faced by our leaders in science, medicine, ethics, and government. The post-Enlightenment ideal of a secular world committed to human dignity and equality without the influence of religion seems endangered, as the most “progressive” scientists and thinkers attack even those secularized ideals as the atavistic holdovers of an outmoded religious past. Sheer self-assertion and goal-driven utilitarian calculation, advancing the longevity and well-being of those powerful and autonomous enough to seize their opportunities, may produce more and more impatience with concepts such as inherent human rights that can slow the wheels of progress. The prospect of a world run in this fashion may make people yearn for the comforts of religion.