What Happened to Bioethics?

Twenty years ago, even ten years ago, bioethics was a prominent national issue, and an active and intensely contested political question. In 1998, human cloning was much on the agenda, with Dolly the sheep having been cloned not long before and the Clinton administration and congressional Republicans both eager for some boundaries — even if they didn’t quite agree on what those ought to be. In 2008, we were coming off of eight years of intense debate about federal funding of embryonic stem cell research, a debate that involved high-stakes politics, a prime-time presidential speech to the country, a veto by President Bush of a bill a Republican Congress had sent him, and a politicization of the case for biomedical research of a sort we had never seen before.

Such intense focus on bioethics seems almost strange now. At the very least, public interest has faded a lot. But in order to think about why, and about what lessons we can learn about where things stand today, we might recall a couple of facets of that unusual period of intense focus on bioethics, particularly the stem cell debate in the first decade of this century.

The stem cell debate was bizarre in many ways, and revealing. We had, for instance, the spectacle of a major party’s nominee for the presidency — John Kerry in 2004 — making funding a specific subfield of biomedicine a prominent plank of his platform and case to the country. His vice-presidential nominee, John Edwards, stood before his party convention and a vast national television audience and said, “If we do the work that we can do in this country — the work that we will do when John Kerry is president — people like Christopher Reeve are going to walk, get up out of that wheelchair and walk again.” Not to be outdone, Pennsylvania Senator Arlen Specter famously insisted in a 2007 press conference that embryonic stem cells had “the potential to conquer all known maladies.”

Prominent medical researchers allowed themselves to be dragged into this circus, cooperating in the spreading of false claims and abiding misinformation to a degree that should in retrospect leave them deeply ashamed. And the sheer prominence and intensity of that debate about funding meant that some related bioethics issues rose to the surface too: questions about cloning, about the creation of chimeras and hybrids, about creating and destroying embryos for research.

All of these became legislative debates. And the work of the President’s Council on Bioethics, first chaired by Leon Kass, used the attention that all of this drew to also shed light on other key questions — from biomedical enhancement technologies to caregiving at the end of life and many more.

A lot of these debates put starkly and plainly the question of how to balance human dignity and human health, or the imperative to respect life and the desire to prolong life. These are deep and fundamental questions that rarely rise so directly to the surface of our politics and that forced some extraordinarily interesting and revealing arguments to happen.

The debate about these questions often had a particular shape that is worth noticing as we ask ourselves where things stand today. The arguments that advocates of embryo research a decade ago made when they were challenged by opponents were sometimes stunningly radical. They argued, in essence, that the sheer fact of human mortality amounted to a crisis that should cause us to put aside ethics when considering medical research.

That sounds exaggerated. But it’s worth looking back at those arguments. Irving Weissman, the Stanford biologist who was a prominent advocate of embryonic stem cell research, reflected in a 2004 U.S. Senate hearing on the meaning of ethical limits on funding for research. As recorded in his written testimony, he said, “Those in a position of advice or authority who participate in the banning or enforced delays of biomedical research that could lead to the saving of lives and the amelioration of suffering are directly and morally responsible for the lives made worse or lost due to the ban.”

Others were even more clear and explicit. The eminent Harvard political scientist Michael Sandel, who was a member of the Bush bioethics commission, offered a hypothetical to illustrate his point that opponents of embryo research didn’t actually believe what we said. Here’s the hypothetical, as he put it in The Case Against Perfection (2007):

Suppose a fire broke out in a fertility clinic, and you had time to save either a five-year-old girl or a tray of twenty frozen embryos. Would it be wrong to save the girl? I have yet to encounter a proponent of the equal-moral-status view who is willing to say that he or she would rescue a tray of embryos.

This, Sandel argued, meant that such proponents didn’t really believe that human embryos are human beings. But it’s worth following the logic of this as an argument for justifying the treatment of human embryos as raw materials to be destroyed for research. Say you were in a room with your spouse and a complete stranger, and a fire broke out. If you were only able to save one of them, surely you would rescue your spouse and not the stranger, and no one could blame you. But would that then give you the right to go around killing strangers on purpose to take their organs for research? Is that not the logic of the fertility-clinic hypothetical?

The problem, in other words, is with applying the logic of a building on fire — the logic of triage and emergency — to everyday life. Our world is not a burning building. To argue that it is, as was at times suggested by the case for morally controversial medical research, would be to deny the legitimacy of almost every ethical and moral limit on action, if that action were directed to addressing the emergency. And if our human nature or our mortal condition itself is the emergency, then almost any action — any means — would be morally permissible to extend our lives.

This was too often the argument that lay at the bottom of the sorts of cases we heard in the stem cell debate. In response, critics of the research, and most prominently President George W. Bush himself, tried to offer a kind of case for moderation — for finding a way to advance medicine while also respecting some boundaries on research, by insisting there was room and time for ethics.

By moderation I don’t mean finding some mushy middle or avoiding controversy. Bush certainly didn’t do that. I mean moderation in the deepest sense — a moderation that consists of properly balancing genuinely competing practical goods by grounding our judgments about them in a commitment to the moral principles at the foundation of our society. That’s what a durable moderation in politics would require, and I think it’s also a kind of definition of statesmanship: prudence in defense of principle.

Bush tried to do this in two different ways in the course of his presidency. First, in setting his administration’s funding policy, he said that the government would fund research using embryos that had already been destroyed before the policy was announced but would not permit federal dollars to be an enticement to further embryo destruction. Whether he found it or not, he was seeking a principled middle ground.

And second, particularly in his second term, Bush emphasized funding research on scientific alternatives to embryo research, and especially on ways of giving non-embryonic cells the characteristics of embryonic stem cells, to avoid the need to destroy embryos.

Both of these approaches tried to answer an extreme case with a moderate one. But of course that didn’t keep the bioethics debates of the Bush years from getting very heated and intense on all sides.

Those debates seem to be over at this point, or at least they are not at the surface of our politics. We haven’t really seen them fought out in anything like a prominent way since about 2010. But why have they faded? Did one side win or lose? Are there lessons we can draw from them? And where does public policy actually stand in these areas now?

On the face of it, the debates seem to be over because Bush’s attempt at a compromise on stem cell research funding was thrown out by the Obama administration in 2009, and the National Institutes of Health began to fund embryo research without restricting the lines available for research to those that existed before funding was available.

Under the Bush administration’s compromise policy, 21 viable stem cell lines were eligible for research. Today the number is 398, including 20 that have been added since the Trump administration began. But that number offers a misleading impression of the direction of policy.

In fact, funding for embryonic stem cell research has not grown that dramatically since the end of the Bush years. In 2008, the NIH spent $88 million on the research. This year it is set to spend $266 million. That’s a lot of money, but it’s nothing like the explosion of support researchers expected and Democrats promised once the Bush policy was undone. It’s only half as much as the $516 million set to be spent this year on non-embryonic human stem cell research, and 15 percent of all NIH spending on stem cell research — human and animal, embryonic and adult.

Even more telling, spending this year for research on so-called “induced pluripotent human stem cells” — that is, adult cells induced to function like embryonic stem cells — will be fifty percent higher than the amount spent on human embryonic stem cell research. Roughly the same was true over the last three years of the Obama administration. That’s telling because the category of induced human pluripotent stem cells didn’t even exist for most of the time that the debate over the Bush stem cell policy was going on, and it’s fair to say that the category came into being, or at least got a very big boost, as a direct result of Bush’s policy itself.

Bush’s prohibition on funding for newly created lines of embryonic stem cells propelled the development of alternatives, and therefore encouraged work on developing cells that have the same properties as embryonic stem cells but can be generated without destroying human embryos. This new category of cells could well turn out to be more significant for the advancement of cell biology than embryonic stem cells themselves. The pattern of NIH funding certainly suggests researchers in the field think it is already. And it can, at least in part, be considered an achievement of the Bush policy, and of the prioritization of human life and human dignity in this area of policy.

But of course, neither these new cells nor embryonic stem cells have so far yielded anything like the miracle cures that some politicians were promising a decade ago. That’s the most significant story on the stem cell front over this period of relative political calm around the issue: Stem cell science has proven valuable for better understanding developmental biology, but its direct application for therapies looks further off and more implausible now than it did ten and fifteen years ago.

This isn’t necessarily a scientific setback: Better understanding the nature of cells and of human development is very important. But as with the more complicated promises of genomics and other flashy subfields of biology, investment in research, rather than opening up a direct path to therapy, often turns out to reveal a more complicated scientific reality. That is what scientific progress often involves.

This argues for humility in the political case for medical research, and it might also argue in particular for taking the time and making the effort to seek scientific paths around threats to human dignity and life in medical research, rather than setting the advance of medicine and the protection of vulnerable human life in opposition to each other. It argues for moderation, rightly understood, and for putting medical research in perspective in a way that makes room for ethics.

In a sense, Bush’s approach — both in his original stem cell policy and in his later emphasis on funding alternatives to embryo-destructive research — was to avoid a direct confrontation between medical research and human dignity. There’s a lot of wisdom in this desire to avoid the choice, because the evidence of that decade of heated debate about stem cells is that our country, if forced to choose, might well make the wrong choice.

But of course, the fact that a technical solution — a way around the moral quandary — turned out to be available in this case made it possible to avert the terrible choice. The early signs, before alternative stem cell technologies became apparent, were not so positive. The way our public debate about embryo research proceeded for much of the first decade of this century does not offer much hope that future debates — in which a technical solution may not be so readily forthcoming — will make room for moderation, or will see beyond the logic of permanent triage or a world on fire.

That means that although we have a kind of success to point to in some of the bioethics debates of this young century, we should also draw a cautionary lesson from them. The case for moderation was accommodated by luck. Nature won’t always be so kind to us. And our task is to advance the case for moral boundaries in science as a case for principled moderation — to think through how that case can be made stronger, more persuasive, and better suited to our society’s particular predilections in our time.

We have more to work with toward that goal than we might have had ten and twenty years ago, thanks to George W. Bush, Leon Kass, and many others. But it would still be hard to argue that we should leave the experience of the bioethics debates of this period hopeful, let alone confident, about where things now stand. The bioethics debates have died down for the moment. But they will be back. And they will be difficult.