Life at the Epicenter
A Wisconsin professor takes on stem cells, religion, and Star Trek
Bioethicists like R. Alta Charo ’79 operate where scientific innovation butts up against cultural ethos. As a professor of law and bioethics at the University of Wisconsin-Madison law and medical schools, she has spent two decades studying global attitudes toward emerging technology and is riveted by the resulting debates, which are informed by history, common sense, religion, corporate profits, and politics. “It’s fun,” she says of this vortex. “Who would not want to be where it’s all actually happening? I get to be surrounded by people who are as passionate and involved as I ameven if they are passionate about things I abhor.”
Charo focuses on reproductive technology (she concentrated in biology at Harvard, and then went on to Columbia Law School), but her work covers a range of classic bioethics issues. While serving on the presidential National Bioethics Advisory Commission (1996-2001), she helped draft reports on cloning and stem-cell research. She also examined the ethical implications of conducting research on mentally impaired people and pursuing clinical trials in developing countries. This spring saw the culmination of several collaborative projects, including her work as a member of the National Academies’ Board on Life Sciences in creating the embryonic-stem-cell research guidelines released in April.
In June, she began work with a committee tapped to assess the Federal Drug Administration’s system of evaluating and ensuring drug safety, especially after the drugs are on the market. “There is a new opportunity to observe how they affect people, and whether there are adverse events associated with the drug use in some or all sub-populations, such as children,” she explains. “I don’t know how the work will go yet,” she adds, happily. “But I know it’s going to be very political.”
Developed as a discipline only a few decades ago, bioethics is now reflected in the way people think and talk about every aspect of the human life cycle. “In the arenas of sex, conception, birth, illness, care-giving, and deathmost of the time it was religious leaders and theologians who made pronouncements on what was right and wrong, and who were the opinion leaders who influenced government policy,” asserts Charo.
That began to change in the 1960s and 1970s, as more secular views were aired. And by the 1990s, she says, a broad national discussion was under way among scientists, doctors, lawyers, philosophers, sociologists, and anthropologistsat the very moment biotechnology was taking off. “The current religious backlash against that secular juggernaut is really a struggle to reassert control over these issues,” she maintains. “Bioethics has simply been flung up into the swirl of talking heads because it is a lens through which, I think, the more fundamental debate over the role of religion and the role of government is being debated.”
Charo has been researching historic and current examples of the governmental regulation of morals in America. “America may have been settled by some as a religious haven, but note that it was a haven for disaffected Christian sects, not for non-Christians,” she says. “And though there was, from the time of the Constitution, formal separation of church and state, the two were never really all that far apart. To some extent, today’s fight is about making all religions (and atheism) truly equally welcome in the public square.”
Nowhere, she says, is the effort to regulate morals clearer today than in the abortion wars (although the fight over gay marriage, she observes, is a close second). Speaking before a group of Harvard Medical School faculty members in April, Charo examined the phenomenon of conscience clauseslaws in at least 45 states that allow physicians to refuse to perform an abortion without retribution from employers (the subject of her June 16 New England Journal of Medicine article). In most cases, physicians must refer patients elsewhere, but in regions with few providers, she notes, a refusal is tantamount to denying access altogether to a legal service. In Wisconsin, a bill that passed the legislature last year, was vetoed by the governor, and now has been reintroduced, takes that idea several steps further. It would allow healthcare professionals to abstain from “referring, counseling, recommendingor doing anything that was construed as participating” intreatment related to assisted suicide, fertility services, abortion, or any treatment based on fetal-tissue research or embryonic stem cells. “Under this law, for example, a physician can refuse to provide basic vaccinationschicken pox, rubellabecause these were derived from fetal-tissue research,” she says. “And the physician cannot be sued or disciplined.” “What’s next?” she asked the group. “I’m waiting for the bus driver who refuses to make that routine stop because it happens to be near the abortion clinic.”
Charo believes the abortion wars are proxies for the debate over women’s independence: “whether women should be free of the fear of punishment for sex, single motherhood, for ‘careerism,’ and, in general, for independence.” She can’t abide “sanctity of life” arguments, in part because of her own religious orientation. “The fact that I am Jewish makes a difference, I think. The argument is that if I do these things (have an abortion, use stem cells) then I am taking control, I am playing God, and destroying the sanctity of life,” she says. “But that is a Christian view of an anthropomorphic activist God controlling things. In Judaism, God commands humans to improve the world, to heal the world. Humans take control, not God.”
And what about embryonic-stem-cell research? “If a fertility clinic were on fire and you had only enough time to run in once to effect a rescue, which would you grabthe unconscious clinic worker or a tank full of hundreds of frozen embryos?” she asks (see “Debating the Moral Status of the Embryo,” July-August 2004, page 41). “Regardless of whether or not you think embryos are morally significant, it is (or ought to be) possible to set priorities. Put another way, opponents take the radical position that we should protect embryos (whose moral status is debatable) before we protect men, women, and children (whose moral status is not). I take the conservative positionprotect first those whose moral status is unquestioned, and when they’ve been cared for, do what you can for the rest.”
Speaking more personally, Charo tells the story of a friend who died of Lou Gehrig’s disease in her thirties. “For seven years I went back and forth from Madison to Long Island to be with her and to help out. There is nothing, nothing that the Right to Lifers can say to me that can ever persuade me that concern for 64 undifferentiated cells in a blastocyst matters one trillionth as much as one glimmer of hope that stem-cell research could find a cure for that disease,” she says. “Those people talk about compassion and love? They should have spent one weekend with my friendI challenge them to have ended that weekend as certain of their views as they are today.”
At Harvard, Charo studied evolutionary theory and behavioral ecology with plans to focus on primates in graduate school. But she saw her exceptional LSAT scores (versus respectable GREs) as a sign of greater aptitude, and went to Columbia Law. After graduating, she took a job at the school’s Legislative Drafting Research Fund, where at one point she wrote a grant proposal on the developing legal norms on reproductive technology.
The grant was denied, but Charo, excited by the topic, became a legal analyst at the (now defunct) Biological Applications Program of the congressional Office of Technology Assessment. “I know all about sperm,” she says with a laugh. “I am the only person in medical history to get sent on a federally funded tour of California sperm banks.” But she was also exposed to the “abortion wars, cultural wars, and religious wars in America. And I got exposed to bioethics.” Desiring experience in lower-tech reproductive medicine, she also did a fellowship on international family planning, in which she studied, among other things, condom distribution in Indonesia and Ghana. In 1989, she took the post in Madison.
Not all bioethicists have a background in science. Charo keeps up with biological news to help “reduce the chances of overestimating the power of scientific discoveries or wandering off into science fiction land”and to better target potential ethical questions. Take, for example, a gene therapy conducted by inserting new genetic material into existing cells. One might take care to ensure that the vector does not trigger the immune system, she explains. “But an appreciation of science means one might also notice that this same technique could be used to engineer a pathogen that evades standard immunizations, thus making the pathogen more useful as a biological weapon. This exemplifies the ‘dual use’ dilemma. Technologies can usually be used for both good and evil, so how does one decide whether to censor the technology or merely attempt to regulate it? There is a Buddhist saying that each man is given keys that will open the gates of heaven, but these keys also open the gates of hell.”
Bioethicists argue from various starting points. “I focus on questions of equality,” Charo explains. “Which things are going to lead to more equality among people?” She considers herself more politically minded than some of her cohorts, and believes that societal and governmental structures should be considered at the outset, not after “purer academic” questions have been debated. “Our conversations would be more honest, more articulate, and more effective if we were to embrace this rather than bury it in the hope that bioethics can ever somehow be above politics,” she wrote in a column to appear in this summer’s report from the Hastings Center, a bioethics research institute. “Aristotle wrote that ‘man is naturally a political animal.’ So, it would seem, is the bioethicist.”
To escape the heat of twenty-first century politics, Charo retreats into the novels of Jane Austen“a more soothing way to pursue my interests” in ethical quandaries. She is also a great fan of Cary Grant (“Intelligence without humor is tedious, and humor without intelligence is buffoonery. But the two of them together? I could bask in that forever”); J.K. Rowling and Harry Potter; and home renovation. Her 1939 house has seen so many changes that she was named the guardian of her general contractor’s children between jobs two and three. Of the highly educated craftsmen who populate Madison, and often her home, she says, “They are a delightful group.…If any of them were single, I’d marry them.”
Charo is also an avowed Trekkie who has developed an undergraduate bioethics course using 14 episodes selected from all five series of Star Trek to ease tensions during particularly sensitive discussions. “Think of race, for example. In bioethics, you might talk about black couples who want a white sperm donor so that their child can have lighter-colored skin,” she says. That situation is mirrored in an episode from Star Trek: Voyager in which a half-Klingon, half-human woman who is frustrated about her background finds out that her future child will inherit Klingon traits and asks her doctor to make the infant genetically human. “Is it right to reject part of your heritage? Are you entitled to do that? Should the doctor accede to the patient’s wishes? Will the child be harmed or not?” Charo queries. “All these discussions can take place now because you’re talking about Klingons and humans.”
In the classroom and the courts, she reports, debates over such “moral issues” typically boil down to questions of individual rights versus governmental duties. “Can gay people get married? Can single women use IVF? Can gay couples use IVF? Can you use genetic testing to choose the sex of your child? All these questions begin with the premise that it is within the government’s purview to regulate these choices.”
That notion was blown apart in June 2003, she believes, by the 6-3 Supreme Court decision in Lawrence v. Texas that challenged the criminalization of sodomy. Justice Anthony Kennedy, a Reagan appointee, unexpectedly took a step back from weighing individual rights, she says, and asserted that, fundamentally, “the state has no legitimate interest in regulating sexual behavior. Just the fact that a majority may view [sodomy] as immoral does not give the state legitimate interest in forcing everybody to live by the majority’s values. This is profound stuff, and goes to the very heart of the role of government in the United States system.
“Does the government exist to identify and enforce the moral vision of proportionally dominant groups?” Charo continues. “Or does it have a more modest role, to simply facilitate individual choice while protecting vulnerable persons? These fundamental questions are a large part of what is driving these debates over questions of bioethics. There are many people who want the government to incorporate in its policies religious beliefs, and to enforce those policies.”
Charo is quick to add that she does not advocate eliminating religious considerations from dialogues over bioethics. “What needs to be discussed is whether, in these debates, we should insist upon what [philosopher] John Rawls calls ‘publicly accessible reasoning,’” she explains. That requires that any arguments in favor of a goal that may involve religious viewpoints should make equal sense to those who do not hold those religious views. “Otherwise we are fighting over whether or not your God is better than my God,” Charo emphasizes, “and whether or not your religion is better than my religion. And I find that to be a terrible way to set public policy.”
~Nell Porter Brown
Nell Porter Brown is assistant editor of this magazine.