Arthur Caplan Discusses Issues Facing The Growing Field of Bioethics

Interview By:, Franklin Hoke and Karen Young Kreeger, pp.12 Date: October 17, 1994 In May 1994, preeminent bioethicist Arthur Caplan moved his base of operations from the University of Minnesota, Minneapolis, where he had established the Center for Biomedical Ethics, to the University of Pennsylvania in Philadelphia. There, he launched the Center for Bioethics, hoping to expand the purview of his activities through association with the extensive biomedical research community at Penn and in the greater Philadelphia area-- initially, for example, sharing temporary offices with the university's Institute for Human Gene Therapy. The 44-year-old Caplan, who is the author of dozens of scholarly papers, also strives to make critical bioethical debates comprehensible to the public, most recently in his book Moral Matters: Ethical Issues in Medicine and the Life Sciences (New York, John Wiley & Sons Inc., 1995). As the fall semester got under way at Penn last month, Caplan met with Senior Editor Franklin Hoke and Associate Editor Karen Young Kreeger of The Scientist for a wide-ranging discussion of his views and plans. Following is an edited presentation of the interview. Q Why did you decide to move to Penn? A Well, Minnesota--the medical school in particular--had oriented itself very strongly toward some high-tech forms of transplantation, like bone marrow, while Penn has this emerging gene therapy, testing, and screening interest and was pulling together a group of people to do molecular medicine. So, intellectually, that was a big draw for me. Also, Minnesota didn't have much of a group doing health economics and policy. But Wharton [Penn's business school] does, and that was another attraction. Q Is Philadelphia a good place to practice your discipline? A Surprisingly, Philadelphia has not been a major presence on the bioethics front, although it has all these medical schools and hospitals--Fox Chase [Cancer Center], the [American] College of Physicians, and so forth--and it has a lot of pharmaceutical companies. So it looked like a place where one could go and make something happen. Q What are some of the new things you hope to do here? A We'll definitely be moving into the genetics area, and we'll try to work with Penn's very good history and sociology of science units in the areas of eugenics, heredity, and human nature theories. So, we'll go into everything from the most practical questions--such as insurance implications--to lofty theoretical matters [like] what's a disease and whether medicine has, as its mission, to improve or enhance as well as repair things. Q What bioethical areas are you most concerned about? A I'm especially interested in the rationing of health care, both at the bedside and in terms of who gets access to high-tech treatment--things like that. I'm also interested in how to divvy up the health-care budget for the readers of The Scientist. Should we spend more money on research or put some kind of embolism in the research pipeline to slow down cost? And what is the proper incentive system for technology transfer? And then there are end-of-life care decisions--termination- of-treatment- and assistance-in-dying- type matters. And questions of research on children--do we have a system that protects their interests? If I tell you that your daughter is sick and we can lop off half her pancreas to try to save her, and you ask, "What are my options?" and I say, "None," and you say, "Okay, you have my consent"--is that good enough? Does informed consent mean anything in the context of very sick kids? My hunch is that it doesn't--and then how do we replace or supplement informed consent? Q Do you have a particular technique for exploring this sort of issue? A When I was in Minnesota, our center had a reputation for trying to integrate descriptive empirical work with prescriptive things, and I think we will do that at Penn, too. Before I tell people what to do, I'd like to know sort of what they're doing first. It may turn out that what they're doing is what they're supposed to do, and it may waste a lot of time to fish around for what they ought to do if you don't know what they're doing already. I have the feeling that most people don't read the informed consent form, so shaping it into a finely honed document is probably not useful for a lot of people. On the other hand, there may be issues coming up from the subjects that are not captured on the informed consent form. But if you don't debrief them you'll never know that they were mad about this or that nobody ever told them, for example, that they were going to be nauseated after a certain test. That's the place where I think we can do some interesting empirical examination. Q What are the origins of bioethics? A Well, bioethics more or less started in response to scandals over such things as the Tuskegee Study, where people were deceived about getting treated for their syphilis and not told that they had syphilis; or the Brooklyn Jewish Chronic Disease Study, where demented, terminally ill elderly patients were given live cancer cells with no one's consent; or the Texas Contraceptive Trial, where women were given placebos to test the effectiveness of birth control pills. In response to these early T60s scandals, bioethics shows up in the late T60s and says, "We're going to fix this." Q You say that "descriptive empirical work" is important to you. Is that approach new to bioethics? A Yes, it's definitely new. The scope could be anything from what happens to someone who's signing up as a subject for a research project all the way out to how a doctor decides who gets access to a CAT scan. You just come in and interview a dozen or so people at length, almost like a journalist would, and sort of follow them over time and paint the picture. Now, I'm not sure that anybody can say, statistically, what number of case studies is enough to generalize out to. But we are not interested in generalizing--we're not interested in saying we understand the whole population. Our empirical approach lets us pick up what the problems are. I don't care if only one person encounters a problem or 10 do; even if it's a problem of one person, it's still a problem. Q Does the use of an empirical approach help make bioethics a science? A The goals of ethics research aren't the same as those of scientific study. The scientist may want to know how common a problem is or, if you change variables, will it go away. I am more interested in finding out simply what problems exist out there. I sometimes think of this as "moral systematics." It's like doing taxonomy. I talk this way in part because I grew up as an evolutionary biologist, but it seems to me that I'm closer to moral ethology in a sense of how an animal behaviorist might study what's going on out in nature and look for problem identification and classification. The other type of empirical work involves what I could call historical-sociological studies. We might, for example, be looking at genetics as part of a historical review of what happened in eugenics. Does anybody really know what the Nazis did? Has anyone really looked at their arguments about why they did it? And do we really understand enough about the German or American experience with eugenics? I am interested in looking at old laws, old policies, old ethics arguments. What did the scientist in Germany say about working in the camps? Q And what are the present-day applications? A I would call that an analogical examination. Does the analogy hold up? Is it tight enough? Do you see the same arguments today that you saw in the camps? Are the empirical circumstances different from what they are today? We want to see if the analogies, metaphors, and similes hold up in relation to current issues. If someone compares abortion to the Holocaust, for example, is that because fetuses are a target of government policies intended to eliminate inferior genetic human beings? If they mean that what the Germans did in their genocidal activities is like what we have as a policy about terminating pregnancies, we know, through our analogical examination, that this comparison is not correct. So, that argument against abortion falls away--even though you still might think there must be moral standing for the fetus. I am interested in knowing if the ethnic arguments from the past are convergent, divergent, homologous, or analogous so as to understand whether I'm looking at a real phenomenon or an accidental similarity. It's important to do this; if you just start from your armchair to come up with ethical theories, you may arrive at something very interesting, but something close to what a mathematician does, or a math modeler. Q Like people who would model an ecosystem without ever stepping into nature? A Right, they don't step in the lake, and they don't care to. But that's not my bent--my bent is to step into the lake, to be sort of a moral naturalist and look for phenomena. That's why I like being around the hospital; that's why I like tying in to the people who do the work with social science tools. Q What influences led you to bioethics? A Actually, those go all the way back to my early days, at Columbia University, where as a graduate student I spent a year at its medical school. So, I got interested in health- care ethics by hanging around the hospital and the clinic. That's how the idea of using the hospital as the laboratory began, and out of that came my strong belief that if you're going to be credible to doctors and scientists, you must understand their world, their limits, their time constraints, the financing that they're up against, and how they talk. Q You mean that before laying down ethical laws to people, you have to understand what really influences what they can and can't do? A You shouldn't set your morality beyond what's possible. Sometimes, a limit on morality is human nature, fallibility, mistakes, a certain amount of egoism and greed. In order to take that into account, you don't want to pretend that it's a world of saints with infinite resources and unlimited time and that we should all act in this way. Q Returning to the subject of gene therapy, will there be an organizational relationship between your group and Penn's institute? A The tie is really through me. I have an appointment in the department of cellular and molecular engineering, as a professor. I'm written into many of their grants, to sort of watch that the gene therapy protocols meet the requirements of the human subjects' study. So, it's not a center-to- center marriage; it's more of a faculty-to-faculty marriage. Q But doesn't the National Institutes of Health's Recombinant DNA Activities Committee [RAC] already have a very developed pattern of thinking about the ramifications of gene therapy before the protocols are in place? A To tell you the truth, while I'm not against having a national RAC, the NIH committee may have outlived its usefulness at this point in time in terms of the level of review necessary for protocols relative to the risks. Most of the people who are on RAC do gene therapy; they want to do it right--but they also want to do it. I'd like to think we can come at gene therapy at Penn with a little bit more of an objective eye in terms of saying, "We don't care whether it proceeds or not, we're just interested in looking at the ethical issues." Q What type of issues? A Remember the incident in California involving gene therapy for brain cancer? Basically, RAC had all these rules about what you had to do to get gene therapy, and then they threw them out the window when a woman who knew a senator made an appeal. That's the kind of thing we'd like to look at and say, "Don't let politics override the system." It's not a good idea. It's not compassionate, necessarily, to grant a terminally ill person access to a gene therapy intervention that's not on a protocol. But it was hard for them to say it, because they were getting influenced by national politics. It's easier for us, at Penn, to say it; we're not accountable to NIH or Congress or anything like that. Q Where does the Human Genome Project [HGP] office for ethical, legal, and social implications [ELSI] fit into the spectrum? A ELSI is interesting, because it is the only area of NIH that has been set up with a specific allocation of money to look at ethical issues. And that's good. On the other hand, I think that they have spent a lot of their time committing themselves on issues identified by people who weren't in close contact with what was going on in genetics. I will tell you, flat out: Bioethics, in my view, is weak in genetics. There are not a lot of philosophers, theologians, and lawyers who know anything about it--I mean anything! I'm talking about, do they know a chromosome from a gene from an aardvark? It's an area where bioethics has not intersected well with the scientific community. Most of the people who come into bioethics have much more of a clinical focus than a basic science focus. It's hurt the ELSI program in a lot of ways. And I lobbied [HGP official] Francis Collins pretty hard about this, saying I think it's time we sort of get past the declarations of morality into the nitty-gritty of it. Q Don't you think a lot of researchers fear that bioethical influences will impose too many constraints on their work? A There's a common equation between ethics and saying no. But my argument is that sometimes the job of ethics is to say yes. I'll give you an example. I'm working on an article that you'll probably hear about because people will be streaming down the street to lynch me. It's called "What's wrong with eugenics?" or "What's wrong with germ-line engineering?" I happen to think the answer to both those questions is, nothing, intrinsically. The question of whether I should be able to pick blue eyes or brown or tall people or short--I don't think there's anything wrong with that, fundamentally. Q It's a matter, then, of when to say yes or no? A There may be reasons we ought not practice eugenics that have to do with politics and the fear that some people may go down the slippery slope, as the Germans did. If you're worried about coercion--and the Chinese force that kind of stuff--you oppose it. But if it's a pure question of, if I turned on gene X and made my child grow another two inches, and there was no risk to the kid, and nobody made me do it, I don't see the problem. You know, you make children play the piano an hour a day, seven days a week, for 10 years, and you understand that you've imposed a lot of views on them of what they should become. You start to think about it, it's like, cripes, making him two inches taller may be the least of his worries. It's more whether you make him study in the yeshiva seven hours a day after school. That's imposing a much more cognitive type of thing on a kid. So, I don't buy the idea that the mission of ethics is to say no or go slow or don't do it. That's an oversimplified view. My idea is, sometimes it means yes and go faster and you ought to do it, so why aren't you doing it? It seems to me if you could do germ-line therapy to eliminate killer diseases, not only should you do it, you must do it. If you could eliminate sickle cell or Tay-Sachs by a safe form of altering sperm or egg or embryo, I think it's morally incumbent upon you to do it. Q In connection with AIDS research, what are some significant bioethical considerations--for instance, those connected with arriving at an adequate experimental protocol that could be used by AIDS researchers in developing a live attenuated-virus vaccine? A If it looked like some lines of vaccine research were promising but were limited by the absence of an animal model, then I'd be surprised if we wouldn't take the proper steps. Specifically, we might try vaccines on people who are brain dead and who are about to have their life support disconnected. We might decide that we could add a provision to their living will or their transplant donor card that said, "You could use me for a limited period of time to test a vaccine." You might get some information that would make you feel more secure before you went to a living human. It seems, as a reasonable place to turn, you may find individuals who are terminally ill who want to volunteer as human models. The other population that's likely to be morally appropriate for this are those groups in high-risk categories whose behavior can't be changed. Of course, there's always an obli-gation to try to get somebody to stop doing what puts them at risk. But there's some truth in the idea that if you go to a group of, let's say, sex workers in Thailand and say, "You've got to get out of this business," and you come back in two months and say, "You've got to get out of this business and you've got to use condoms," and they're still working there, that probably is the population you want to go to for your vaccine trials. You've done everything you can, and you continue to do it throughout your entire study, to get them out of the business, even if it hurts the study. But if you know they're going to do it, and you're not going to get them out, that's where you go for vaccine development. Q You're aware how radical these ideas are. A The intuitive thing is to say, "Well, you can't do this and, I don't know, we just have no vaccines." I think the right answer is, "Well, let's think more carefully about how could we do this and feel comfortable that we haven't hurt anybody or made them worse off." We've got an epidemic, and we've got to do something. Q Another area of considerable debate is technology transfer between universities and industry. What are the ethical considerations that must be addressed in the push to commercialize research results from academic labs? A There are really serious issues there. At one level, it's been a fight about conflict of interest and disclosure, and NIH is still struggling to come out with guidelines. They basically rely on disclosure, the assumption being if you tell people that you have this technology-transfer arrangement, it'll be okay because they'll know how to read your data or interpret what you say about whatever gizmo or drug it is that you're working on. The other argument is, you have to restrict how much scientists and doctors can work outside the university. A day a week is a common rule about how much outside work you can do. I think those provisions are nice, but they're not getting down to the real nitty-gritty questions. What's the impact of privatization on basic vs. applied research? If a university is supposed to be a place that pursues basic research more than a company would do, and yet companies underwrite more and more research or commercialization, will we find ourselves richer in the short run but poorer in the long run because we spent so much time developing this generation of technology that we don't have anybody working on the basic science for the next one? Also, what happens to the graduate students who work in the labs of people who are involved in corporate ventures? They can't do their thesis because they've got to do work for a guy who's making money, and they're a kind of cheap labor for that person. But if a company has a gizmo that you can't get at the school lab and if the company provides in-kind services worth hundreds of thousands of dollars that you could never get from your school, is that enough to pull your lab in an unacceptable direction? Remember, this is basically a subtle kind of a bribe to get you to do things. There are many, many interesting questions about how commercialization and for-profit motives are shaping biological and medical science. What you may need to do is teach that senior professor that you don't push the graduate students around, and you can't exploit them to do your work on the side, and you're not going to get promoted for how many inventions you make. You're still going to get promoted on the basis of how many students put out good papers from this lab. Q Why does bioethics seem to be such a hot area now? A I think bioethics is especially of interest these days for a couple of reasons. One, the cost of health care, the cost of medical research, the cost of certain medical innovation is up. So people always take an interest in what they're getting for all this money. There is still a kind of cornucopia of new technologies. Investments in the T50s and T60s are now paying off with different kinds of devices, so there are a lot of technology-driven questions: turning it on, turning it off, when to use it, who gets it, that sort of stuff. I think bioethics is of interest because we don't have any other place to turn. To some extent, our religious and political leaders fail us in terms of understanding enough about science to allow us to talk about what's going on. And to some extent, science has taken on the guise of secular religion. You may say that people go to the doctor with the same hopes that they once brought to the minister: Save me, prepare me, redeem me. In the Middle Ages, you used to see cathedrals; now, what you see are towering medical centers dominating the landscape. Q In your new book, Moral Matters, you make a strong case for the enduring value of ethical thinking. A I think a lot of scientists have the view that ethics is subjective--that it's all a lot of talking and yakking and blather that amounts to nothing--and that science is concrete. A computer scientist said he once asked the faculty at [the Massachusetts Institute of Technology], "How many people think that 1,000 years from now people will believe that the speed of light is 186,000 miles per second?" Half the faculty raised their hands. Then he asked, "How many people will believe 1,000 years from now that the road to hell is paved with good intentions?" Everybody raised their hands. The point is that ethics is more concrete in the long run than the physical stuff, which is contingent. And I believe that.

Arthur Caplan Discusses Issues Facing The Growing Field of Bioethics

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