From Carnival Barkers to Policy Wonks
Coming of age amidst revolutions in molecular biology, genetics, organ transplantation, in-vitro fertilization, neuroscience, robotics—it’s hard to think of an area of engineering or the life sciences that couldn’t be added to this list—bioethics was and probably always will be fertile territory for mind-bending water-cooler chitchat. Who isn’t fascinated by debating the ethical status of (to take an example Amy Gutmann threw out to an undergraduate bioethics class last year) elective surgery to replace a perfectly healthy arm with a super-capable bionic one? Yet the field’s spadework is increasingly shifting toward peer-reviewed journals and the policymaking arena.
Gutmann’s work on Obama’s presidential bioethics commission is emblematic. During the 2000s, George Bush’s Council on Bioethics was known for producing reports that were long on philosophy, with a primary focus on concepts like human dignity. Obama, by contrast, charged his commission with offering “practical policy options.”
Judging from the new commission’s reports and public meetings, that is precisely the spirit in which Gutmann has taken her assignment. Whereas the Bush-era Council on Bioethics tackled subjects like “Human Cloning and Human Dignity” and “Biotechnology and the Pursuit of Happiness,” its successor has let its wonk flag fly. Its latest report reviewed regulations governing federally sponsored research involving human volunteers, and recommended 14 changes to current practices. Another report focused on “research across borders,” surveying varying norms of human-subjects research around the world and making recommendations such as the implementation of a US system to compensate subjects for research-related injuries. A report titled “New Directions: The Ethics of Synthetic Biology and Emerging Technologies” recommended the incorporation of “suicide genes” into synthetic organisms to limit their lifespan, and the evaluation of regulatory requirements to ensure that “risks to communities and the environment should not be unfairly distributed” among different groups in the population—and went all 192 pages without uttering the phrase human dignity (which, as was noted in a Bush bioethics council report that deployed it repeatedly, is “absent … as an explicit concept in American law”).
Ezekiel Emanuel personifies the growing influence of bioethicists on policymaking. Aside from being the brother of Rahm (the current mayor of Chicago) and Ari (a high-powered Hollywood talent agent who inspired the character played by actor Jeremy Piven on the HBO series Entourage), Emanuel is perhaps best known for his views on euthanasia. Though his writing on the subject has been misrepresented to the point of absurdity—if not well past that point—by Republican opponents of national health-care reform, some of whom accused him of paving the way for so-called “death panels,” Emanuel’s work on physician-assisted suicide is an example of what one might call evidence-based bioethics.
“The analogy I like to make is to physics,” he explains. “We’ve got to have a group which does theoretical physics and a group which does experimental physics. And it’s basically the same in bioethics. You need people who do theory and think about the right resolution, but you also need people who do empirical work and test out, do those theories work in the real world? What is the real world—how are they solving the problems, or how are they seeing the dilemmas? Does it match up with theory? Do we need to modify them?
“One of the things I’ve become quite skeptical of is conventional wisdom,” Emanuel goes on. “When people say, ‘Oh, for sure, people think this,’ [my response is], ‘Yeah? You got any data?’ Because you don’t know. And the public can surprise you.”
With respect to physician-assisted suicide, the common argument in the 1990s was that those likeliest to request it would be dying patients in the grips of unremitting pain. This assumption was even central in federal court rulings, such as a Ninth Circuit Court of Appeals decision in 1996 that struck down a state law prohibiting physician-assisted suicide. Emanuel, whose colleagues once commemorated his spirit of “combative collegiality” by presenting him with a hefty chef’s knife (mounted safely in a glass case)—led a study testing this assumption by interviewing cancer patients.
“Then we actually interviewed patients close to the end of life, as confirmed by their doctor,” he recalls. “And one of the things you find out is, what motivates people who might be interested in assisted suicide or euthanasia is not pain. It turns out to be other things. It turned out to be depression. They have a much higher rate of depression.
“And once you think about euthanasia in the context of depression being the main motivator,” he adds, “then it looks less like euthanasia and a ‘good death,’ and much more like suicide.”
Partly on the basis of that research, Emanuel argued at length against the legalization of physician-assisted suicide (which many contemporary bioethicists supported) in, among other venues, The Atlantic. Soon thereafter, the US Supreme Court came down on his side of the issue, unanimously finding no constitutional right to die with the help of a physician. Later, Emanuel expanded his argument in the New England Journal of Medicine, analyzing available data to estimate the potential cost savings from physician-assisted suicide—another line of argument often cited by advocates of legalization. He (and a co-author who took a different position on the overall issue) concluded that it amounted to “less than 0.1 percent of total health care spending in the United States.”
As an advisor to the Obama administration, Emanuel helped to shape the Patient Protection and Affordable Care Act in ways that drew upon both his bioethics background and his related expertise on resource allocation and cost-effectiveness.
“For example, we spent a long time negotiating some elements around the comparative-effectiveness work to make sure [we addressed] some of the ethical concerns of religious groups about not biasing some of the results against people who wanted to have end-of-life care,” he says. “That negotiation was clearly ethical, involved a lot of ethical choices and discussions.”
Though it’s less directly an extension of his bioethics work, he also takes credit for incorporating administrative simplification, particularly as related to health care billing, into the law.
“I can say very confidently, had I not pushed that, it would not have been in the bill,” he says. “Because Congress was not interested in it. Most of the administration didn’t see its importance. It’s worth $30-$40 billion a year, mostly to the private sector. Hospitals will save money. Doctor offices will save money. Insurance companies will save money. But it wasn’t going to happen without the government setting standards.”
Around the time he came to Penn, Emanuel began writing occasional columns for The New York Times exploring where the biggest potential cost savings are—and aren’t—in the US health care system.
In one of them, he took dead aim at the “medical arms race” to build proton-beam treatment facilities—like the Roberts Proton Therapy Center at Penn [“Inside the Cancer-Cell Smasher,” Mar|Apr 2009]. Citing the lack of evidence that proton-beam therapy is more effective than cheaper treatment options, he called the rush to build new centers “crazy medicine and unsustainable public policy.” (Combative collegiality indeed.) In that article, he also examined a few ideas for how to deal with the situation—each of which has bioethical dimensions. Medicare could simply refuse to pay for the treatment except where it has been proven clinically superior. Or, since clinical trials depend on some level of reimbursement for the treatment under scrutiny, Medicare could pay for the treatment—but only for patients who are enrolled in a randomized trial comparing their treatment outcomes to those of other methods. Or hospitals could just charge willing (i.e. wealthy) patients a premium for proton-beam therapy over less expensive, more conventional options.
“When is two-tier medicine ethical, and when is it not ethical?” Emanuel mused one morning in his College Hall office. “I think that is another deep kind of allocation question that we need to look at … I’m very confident that there are times when a two-tiered system is perfectly ethical. And so I think we need to understand that a little better. And part of the question is: Does the public understand that also?”
Public enlightenment has been Art Caplan’s mission for as long as he’s been at Penn.
“I thought, there’s no point in doing bioethics if you can’t engage the public,” he says. “Because part of what’s going on here is giving them things to think about, almost a prophetic role of saying there’s a problem coming that you should pay attention to.”
Going forward, those prophets are likely to be addressing emerging dilemmas around vaccination research and policy, organ and tissue transplantation, and neuroethics—and “you’re going to have to be certified to do it,” Caplan says. “I suspect the master’s degree is minimal, and the advanced master’s degree is going to be what you need to teach it.”
Which is where Emanuel’s plans for a master’s of science in bioethics program (MSc) come in. While the MBE program did end up generating a crop of professional academic bioethicists, it did so from the ranks of its junior faculty, not—as was never the aim—its students. (Paul Root Wolpe C’78 now runs a bioethics program at Emory; David Magnus runs one at Stanford.)
“There is, as in many areas of medicine, a pipeline problem,” says Emanuel. “There are only a few sites around the country where you can get suitable training. And so part of the plan is to make Penn the best place in the world to train to become a bioethicist.”
Notwithstanding the MBE program’s success in spreading bioethical modes of analysis to health providers, clinical researchers, lawyers, and the like, he adds: “What Penn hasn’t, in my opinion, been at the forefront of—and where we’re moving to—is in the scholarly work around bioethics. And that’s not to say it hasn’t been there. It hasn’t been No. 1 in the world, and my plan is to make it No. 1 in the world.”
Logistically, that means growing the Department of Medical Ethics and Health Policy from four standing faculty members to 11 over the next few years, to permit a one-to-one ratio between faculty mentors and MSc students.
“You have to have a certain critical mass of faculty to do this kind of mentoring,” explains Autumn Fiester. “Helping a student get from concept of research all the way through [the regulatory process and implementation] requires an enormous quantity of personnel and depth of mentoring.
“Zeke has an extraordinary track record of creating a pipeline and actually placing students at the end of their training,” she adds. “The NIH has one of the most formidable bioethics training programs in the country, and he’s been running that program for a long time.”
May|June 2012 Contents
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