The Art and Science of Medicine
Volume XXVI Number 1
Photo © 2003 Tyagan Miller
Medical Progress, Moral Costs
Eric Meslin is a modern kind of guy. He communicates speedily by cell phone and e-mail, he tries to stay one step ahead of his kids on the information superhighway, and as an Indiana University professor of philosophy, medical and molecular genetics, and medicine, he's fully conversant with the most cutting-edge medical technologies of our time.
But he's not necessarily a booster for progress--at least not as it's simply understood.
"Progress is not simply a straight line from discovering fire to building computers," says Meslin. "It's not just technological sophistication and fancy machines. It involves political, economic, and social factors."
It's the factors that trip things up. Politics, money, human relationships, all these force us to make moral choices about what we value and support, what we discount or are willing to leave behind. Perhaps nowhere are the choices tougher than in the realm of medicine and science. That's where Meslin steps in.
What we know, what we do
Meslin is a bioethicist. He came to IU in 2001 to found and direct the Center for Bioethics, a universitywide unit housed on the IUˇPurdue University campus in Indianapolis. Using principles and methods derived from the humanities, law, science, and other fields, Meslin and bioethicists like him consider the moral impact of progress: they try to bring clarity to the myriad consequences, implications, and choices that result from scientific research.
Take stem-cell research as an example. Stem cells are those unusual early human cells that we now know can be coaxed to multiply and transform into other types of cells. They have great potential, say scientists, harboring possible remedies to numerous disorders and diseases--diabetes, Parkinson's, Alzheimer's, and more.
"Stem cells are a big deal, phenomenal biological news," Meslin says. "There is no downside at the level of basic science."
Although stem cells may be retrieved from several places, including the umbilical cord (see story, Page 20) and children's "baby teeth," scientists, the media, and the public's eye have lately been fixed on one source: the embryo. And that's where the moral maelstrom begins.
What is the status of an embryo? Do embryos have rights? What about unused frozen embryos? Studies calculate that thousands, perhaps hundreds of thousands, of frozen embryos are stored in fertility clinics around the country, with more routinely discarded every day. If stem cells from embryos that are no longer needed can be used to develop treatments for the tremors of Parkinson's or the memory loss of Alzheimer's, shouldn't they be used for research instead of discarded? Or are the embryos private property? Can they be adopted? Are they children?
When does human life begin?
Science is no help here. There is no debate over the scientific definition of an embryo: it is a fertilized ovum in the very earliest stages of cell division and development. It's how we regard that scientific fact that starts the arguing.
"Science alone is neither ethical nor unethical," Meslin says. "Science alone can not tell us if (embryonic) stem-cell research is ethically acceptable, because people hold varying beliefs about the moral status of the embryo and varying beliefs about who ought to decide. Science is necessary--without the discovery of stem cells, this would be a hypothetical discussion--but it can't tell us whether it is acceptable to use stem cells from embryos.
"Ethical issues come up," he continues, "when we make use of science. It's what we do with the information that raises the moral questions."
And as a society, we have to decide what we're going to do with stem cells. At present, our federal government bans funding for work on embryonic stem cell lines, although private donations are supporting such work in California and elsewhere.
"We have to take a position," Meslin says, "since research is proceeding on the international stage as well. What are the consequences for this country of the current White House policy limiting, rather than encouraging, stem-cell research?"
Meslin is used to thinking about such issues in national and international terms. Before coming to IU, he was executive director of the National Bioethics Advisory Commission, which counseled President Clinton on issues such as cloning, experiments on the mentally ill, and international research. Increasingly, Meslin says, bioethicists are being asked to venture beyond providing information to participate in the messy task of policy advice.
"The most challenging aspect of policy development is accommodating diverse perspectives," he says. "There will necessarily be compromises, and some members of the public will range from disappointed to outraged, depending on the positions they hold."
A familiar debate?
The stem cell debate recalls the ethical tempest that swirled when in vitro fertilization began to be used to create "test tube babies" some 30 years ago. Today, IVF treatments seem commonplace. As a whole, we've gotten over what Leon Kass, chair of President Bush's bioethics commission, has termed "the yuck factor"--a gut reaction of shock or outrage to a scientific or medical technology that seems to reach too far.
"The public has become more comfortable with discussions of fertility, it's gotten used to IVF," Meslin says. "If the science is well designed, and it's used in ways that are safe, then it's up to individuals to make informed decisions about whether they want to take advantage of the technology.
"I'd like to think an informed public--including elected representatives in state and federal legislatures--can move beyond knee-jerk reactions and try to understand scientific technologies before passing judgment."
At the same time, Meslin points out that some areas of health care and science will always elicit ethical concern. "Not surprisingly," he says, "these are issues at the dawn and sunset of life, those involving human reproduction and those involving death and dying."
For example, IVF still concerns Meslin--not because he opposes it on moral grounds, but because it remains unregulated research. "IVF clinics fall outside the federal regulatory umbrella covering research involving human subjects," he says, "and when an activity is unregulated, there is no opportunity to ensure that common standards exist for informing patients about risks and benefits, or to weed out the legitimate practitioners from the charlatans. Regulation isn't a panacea for all activities, but I think the public has a right to be fully informed about IVF procedures, some of which are risky to women."
In Meslin's view, the stem-cell debate should focus far less on sources of stem cells and far more on how the nation and the world are going to regulate the research. Stem-cell research needs to be "work done in the sunshine," he says, in accordance with consistent national policies and, most of all, open conversation and public input.
For Meslin, the issue of how to successfully engage the public in broad bioethical discussions is every bit as serious as the science itself. He worries that bioethicists may be perceived as elite "secular priests" and that media hype about high-tech cures may be obscuring some crucial issues.
"Bioethics is not only about sensational new technologies," he says. "Some of our most profound moral problems have gone unaddressed for years, such as health-care access." In the United States, Meslin notes, the number of people without access to basic health care is larger than the total population of Canada. "In Indiana," he adds, "we are facing dramatic challenges to our hospitals--underfunding and increased costs leading to fewer resources and sicker patients. And the tragedy is, it does not have to be this way.
"In the economically developed world," he continues, "we could, if we had the social and political will, guarantee universal access to basic health care. But we have chosen not to and directed resources elsewhere."
Marking moral progress
Investing in scientific progress and allocating the remaining resources are fundamentally moral choices, and they come with moral costs: Are more or less people going to get more or less care? Which people? What care?
"Ethical research is a very potent force for social change, but there are certain moral costs of scientific progress," Meslin says. "We still have a lot of progress to make in how society, as a whole, makes use of medical and scientific information. What do we want from the science? Who will benefit?
"In fact," he continues, "we should be pouring the same kind of resources--political, scientific, and financial--into ensuring basic health care as we have been committing to sequencing the human genome. We need to think, collectively, about what kind of society we want to live in."
Meslin may be cautious about high-tech medicine, but he's no pessimist. On the contrary, he believes genetic medicine will help address some fundamental problems, such as the development of new drug treatments for patients.
"We've been spending an awful lot of money developing drugs, only to find out in practice that some of them have negative side effects or simply don't work, or that others are too expensive for patients to afford," he says. "Through pharmacogenomics (the study of how genetics affects drug response), we can develop the right drugs to work for, and only for, the right people. We would help patients while decreasing resources now wasted in drug research and development."
Still, Meslin marks the words of philosopher Hans Jonas, who said in 1969, "progress is an optional goal, not an unconditional commitment, andňits tempo...compulsive as it may become, has nothing sacred about it."
Whatever the tempo of technological progress, we need patience and "a lot of humility," says Meslin. "In the midst of discussions about who gets what, who benefits from what, we need to retain perspective. Good science requires sound ethical thinking: this is a commitment scientists, legislators, and the public share."
A center for the common good
Amid the the hubris and the hype, the public has the ability to shape that perspective, according to Meslin.
"The more we know, and the more excited we are about the opportunities presented by scientific and medical advances, the more responsibility we place on ourselves to learn about them," he says. "But with a reasonable explanation of the subject matter, I believe the public can understand the science sufficiently well to understand the moral issues involved. The world isn't divided up into scientists on the one hand, and the public on the other. We are the public, all of us together."
That's why Meslin and his colleagues in the Center for Bioethics are particularly keen to involve multiple communities in their studies of bioethical issues. "In all that we do, we're trying to find ways to actively engage the community as much as possible in discussing these issues," he says.
The center aims the collective expertise of its staff and participants at bioethical issues likely to affect the greatest number of people. Meslin points to one current example: human biological materials stored throughout medical facilities at IUPUI.
"There are tissue samples and tumor registries at campuses all over the country, and this campus is no exception," he explains, "but we do not have a common, standard protocol for the collection, storage, and use of these materials. How do you get informed consent for material collected years ago that may now prove genetically valuable? What about material from deceased individuals? How do you protect privacy and confidentiality? The center can lend assistance in this case, by trying to determine a common approach."
Meslin adds that similar questions are flowing from work being done as part of the Indiana Genomics Initiative. "For example, we're looking at issues raised by the disclosure of genetic testing results and trying to understand what is at stake," he says. "It is a legal and ethical requirement to give patients sufficient information before they undergo a procedure or have a test, to allow them to give their informed consent. But it's not common for patients to decline to know the results.
"In genetics research, we're asking: is there a right not to know?"
Bioethicists look at such profound questions as an opportunity, not a burden, Meslin says: "If we can address these issues in careful and sensitive ways, we can make better decisions and better policy."
It all comes back to what we do with what we know. It sounds simple, but our future--medical, ethical, and otherwise--rests there. Meslin muses often about the scientific and technological world his young children will live in as adults: "The best thing we can hope for," he says, "is that we can be very clear and very careful about how we imagine what that future looks like."
Lauren J. Bryant is editor of Research & Creative Activity magazine.