By his eighth birthday, Boyce had seen the death of his father, the removal of himself and 12 siblings from his mother's care, five foster homes, and eventually, the Walter E. Fernald State School in Waltham, Massachusetts. They labeled him feeble-minded and institutionalized him for the remainder of his youth. It was at Fernald, where brutality was a fact of life, that Boyce joined the "Science Club"--a group of boys who ate oatmeal laced with radioactive isotopes each morning in exchange for special treats. A quart of milk when they donated blood. A baseball game. A trip to the beach on their birthdays.
"They bribed us by offering us special privileges," Boyce told the committee, "knowing that we had so little that we would do practically anything for attention; and to say, 'This is their debt to society,' as if we were worth no more than laboratory mice, is unforgivable."
In the late 1940s and early 1950s, the federal government, in collaboration with the Quaker Oats Company, funded studies in which the Science Club boys were fed radioactively labeled nutrients--like iron and calcium--to see how these nutrients were metabolized. The boys didn't know they were guinea pigs. But the Fernald boys weren't alone in their unwitting radiation exposure. Terminal cancer patients were subjected to "total-body irradiation" at toxic levels to help scientists learn, among other things, the biological effects of exposure to atomic weapons. Elsewhere, more than 200,000 military personnel were used in disturbing ways--like flying through atomic clouds--to study the atomic bomb. Just prior to the hearing at which Boyce told his story, hints of these and many other secret radiation experiments began to surface--many thought to be related to the Cold War.
Ruth Faden, chair of the advisory committee, sat directly across from Boyce, at the center of a high-powered team, and she just wanted to cry. But she didn't. You have to remember your role, she told herself, remember your position. President Bill Clinton had charged her with finding the truth behind allegations that the government dismissed the human rights of its citizens to advance its own military agenda. For this, she needed to maintain her composure. Boyce's was not the first testimony, nor would it be the last. The audience was filled with victims and their families: hospital patients who had been injected with plutonium during the development of the atomic bomb, impoverished pregnant women who were fed radioactive iron to uncover the nutritional requirements of pregnancy, prisoners whose testicles were irradiated to study the effects exposure had on reproduction ... the list seemed endless.
"Even if my heart was breaking or my mind was bursting and I just couldn't take anymore," recalls Faden, "I had to find a way to just stay there because what these people deserved was, at minimum, my undivided, totally focused attention."
Faden's eyes moved from Boyce to her colleagues and back again, keeping tabs on who was focused on the testimony, and who needed a break, a release from the intensity. But for Faden, there would be no release. This is poetic, because in her life story-- one filled from its beginning with the knowledge that injustice is part of the world--the advisory committee is but a single chapter.
When people hear that Faden's parents were both Holocaust survivors, they put two and two together and say, Oh, of course, that must be why she became a bioethicist. But it's not that simple. "I always cringe a bit when people say that's why," she says. "I hate to trade in any respect on this extraordinary suffering that my parents experienced." But to be sure, Faden's family history had an impact on her understanding of the world. "It's true that I didn't grow up quite like other people," she admits. "I grew up knowing, from the time I was very little, what it meant to truly violate the dignity of the human spirit. And somehow, it made me think about things a bit differently a little earlier in life." But her thoughts centered around more than the Holocaust.
Growing up in a working class Jewish neighborhood of Philadelphia
where her father worked as a furrier, Faden never thought of
herself as poor. But she knew there was something wrong with the
way the families around her struggled. Few adults had more than
a high school education, and some never even made it that far.
The inner city schools where she and her neighbors studied were,
she says, a joke. In overfilled classes run by teachers with no
passion for sharing wisdom, Faden learned practical things, like
making Waldorf salads.
She knew she and her classmates weren't getting what they needed. "After graduation, forget college," says Faden. Some of her classmates ended up working full time as shoe salesmen, beauticians, anything to help support their families. The lucky ones went to community college at night. At 15, after eight months in a body cast from scoliosis surgery, and taking the SATs upside down in a hospital bed, Faden felt academically underprepared, to say the least.
Even though she skipped a grade in elementary school for being an early reader, Faden never saw herself as having any academic talent. "I didn't have a perception of myself as a smart person," she says, "and we had no money." A high school counselor assured her she shouldn't waste her money applying to four-year schools. But Faden's mother, a poet and artist whose education was interrupted before high school by the Holocaust, said, The application fee is only a few dollars, please give it a shot. So Faden applied to local colleges. After getting turned down by the University of Pennsylvania for what they called an inadequate high school education, Faden enrolled at Temple University at age 16. She had no intention of staying at Temple; she just needed to prove to Penn that she could do it. By her second year Penn accepted her as a transfer student. After finishing her coursework at the Ivy League school two years later, she began a graduate career that would end with two master's degrees and a PhD. By 26, she was on the faculty at the Johns Hopkins School of Public Health.
Now, at 50, Faden is executive director of the Johns Hopkins Bioethics Institute, an independent, interdisciplinary center with two dozen faculty members whose affiliations range across the university--Arts & Sciences, Medicine, Public Health, Nursing. Faden is also the university's Philip Franklin Wagley Professor of Biomedical Ethics. She spends her days meeting with research fellows and doctoral students, administrators, and countless others, while making sure she and her faculty can attend their kids' school plays and other personal events that, in Faden's eyes, keep the world sane and functional. Somewhere in all this, she finds time to write articles and editorials, drive car pool, laugh, work on her latest book project, and make it home for dinner by 7 p.m.
Now that her 25-year-old daughter, Karine, is in law school, on her way to becoming a health lawyer, dinnertime is shared with her 12-year-old-son, Zack, a self-proclaimed politics junkie who wants to be either a professional tennis player or the president (he sees drawbacks and limitations to both), and her husband, Tom Beauchamp, a philosopher. With him she co-authored A History and Theory of Informed Consent, considered the authoritative text in its field.
Less than a year before Faden sat listening to Boyce's story, she would have laughed if you'd told her she'd have top security clearance to the White House and work for the president. That's not exactly what she had in mind for her career, she says. Making the move to government work started with a message from Tara O'Toole, then the assistant secretary of energy, now a senior fellow at Public Health's Center for Civilian Biodefense Studies. O'Toole's message landed amid piles of paper on Faden's desk, which is, like her life, scattered. Faden didn't return the call. She meant to, and she would have gotten around to it, but there were so many other things to do. The messages kept coming, and eventually, after prodding from a mutual friend, Faden found herself listening as O'Toole told her about secret human experiments conducted by the Department of Energy (DOE) in the '40s and '50s. They'd just been uncovered, and from what O'Toole could tell, it all happened without the patients' knowledge or consent.
"If these allegations are even remotely right," Faden told her, "this is profoundly serious." "I know," said O'Toole, "that's why I called."
O'Toole asked Faden to look over some materials and consult the DOE about what to do next. Faden was riveted. And when she started reading, she couldn't believe what she saw. She told the DOE that the government needed to create an independent mechanism for investigating these allegations. She told Hazel O'Leary, the secretary of energy, that the materials suggested government involvement far beyond the DOE--that there was reason to question the Manhattan Project, the Department of Defense, the Atomic Energy Commission, and surely others. Faden wished them luck and went home, thinking her role was over. But she was wrong. Her phone rang again, but this time it was O'Leary calling to say the Clinton administration had decided to establish a presidential commission to investigate the allegations.
"That's terrific," said Faden, "great idea."
O'Leary told her the investigations would span six of the seven cabinet offices.
"Yesss!" said Faden with trademark enthusiasm.
But there was one more thing, said O'Leary: The president wanted her to head the commission.
Faden almost fell over.
A month later, she was chair of a committee that didn't yet
exist. She had 18 months to hire a staff of 60 who would gather
around the country, drink many cups of coffee, interview doctors,
countless patients and family members, conduct in-depth studies
into everything from the history of human experimentation to
current practices, write a 620-page report on their findings, and
present a slew of recommendations to the president as to how the
U.S. government should proceed. She had no idea where to
Faden, as she says, is a hell of a cook, but she can't follow recipes. "You know," she says, "I don't like to be constrained. I just look at a recipe for inspiration, then I close the book." This is exactly how she whipped up the advisory committee. She closed the book, imagined the perfect ingredients, and started getting her hands dirty. She knew she needed experts in philosophy, history, physics, medicine, and any other field relating to both the work of the committee and the research they were investigating. For Faden, the perfect ingredients in bioethics--whether it's for an advisory commission or a bioethics institute--must come from as many relevant disciplines as possible.
But this, and many other aspects of bioethics, are at the center of some pretty heated debate these days.
People didn't use to say, "I want to be a bioethicist when I grow up." That's because until fairly recently, there was no such thing. "Bioethics is relatively young," says Faden. It's still at a point of definition from within and without. And some argue that, since there's no standard procedure of education followed by certification, perhaps there is still no such thing as a bioethicist. Doctors and lawyers receive special training and certification--why not bioethicists? It's not that simple, says Faden, because bioethics isn't a clear-cut field.
Sometimes bioethicists are, in a sense, practitioners--they work on a case-by-case basis serving as mediators and overseers for decisions ranging from when to remove life support, to whether patients in a research study have been adequately informed of risks. Other times, they specialize in what Faden calls "inquiry," situations where they're not practitioners per se, but thinkers and arguers. Topics vary, but their goal is aimed at stimulating public debate and affecting policy changes. For example: Much of today's pathbreaking biomedical research--like, say, any research done with stem cells--falls outside oversight requirements if it's not funded by government money. Many bioethicists, including some at Hopkins, are arguing publicly-- through academic papers, editorials, and interviews--that this must change. Without oversight, research proceeds outside the public eye, just as it did with the human radiation experiments. This doesn't mean the research is tainted or that the scientists' motives are not pure, says Faden. It means no one knows for sure.
Under the umbrella term "inquiry," there's also ethics of healthcare policy, which is where Faden has turned her current focus. She and a Georgetown colleague, Madison Powers, are writing a book they hope will bring several issues into public debate: the impact of social, political, and economic inequalities on health. And questions of justice: like, You only have so much money you can spend to advance the health of a community; how should you spend it? How do you set priorities?
There are also bioethicists who do what Faden calls "moral and political theory," which connects public policy and clinical problems to broader forms of the questions they raise. So, for example, the general question, How do you treat a patient who is temporarily incompetent? turns into a question about what it means to be a person, and what it means to be incompetent ... important questions for patients, and for people like Fred Boyce, for whom the label of feeble-minded meant institutionalization and the Science Club.
Bioethicists, in reality, don't make decisions. In their roles as either practitioners or inquirers, they provide tools--in the form of ideas, insight, and arguments--to help others decide for themselves. For a family faced with the decision to end or maintain life-support for a loved one, the bioethicist acts as mediator for the family and the doctor, raising questions to help illuminate the situation from many angles. And when it comes to inquiry, says Faden, "individual scholars take individual positions [and] try to come up with good arguments for them ... it's up to the people who make those decisions to see if they find our arguments persuasive."
"Bioethicists," says Faden, "are in a weird world right now."
With increasing national interest in the field--whether it's
healthcare policy or research ethics--bioethicists like Faden get
calls from people asking: Is this right or wrong? These questions
make Faden laugh. "They want us to tell them in eight words or
less so they can get the quote: 'condemnable, says a prominent
bioethicist.' And it's not just the press, it's the national
appetite for a pithy insight. So I say, 'Wait a minute ... it's
a lot more complicated than that. Do you have two or three
To complicate matters, many of the ethical issues up for public commentary relate to very basic questions with a lot of controversy attached to them--like the moral value of the embryo, or the end of life. "Regardless of the stance you take on these issues," says Faden, "you're going to offend someone morally." This, in many cases, seems to lie at the core of the strongest criticism of the field: bioethics, some complain, doesn't represent the views of everyone.
But there is no one view held by the bioethics establishment. The Hopkins Bioethics Institute as a whole, says Faden, will never take a position for or against an issue. "Individual faculty members will take very strong positions, and sometimes collections of faculty within the institute may agree, but we are a community of individual researchers and scholars." And they don't always agree. "We don't have a common ideology," says Faden, "but we do have a common commitment to advancing the ethics of biomedical science, health policy, and medical care."
As Faden listened to Boyce tell his story about the Science Club, she didn't know what, if anything, would come from the committee's work. But listening to his voice, as its strains of childhood suffering echoed through the hearing room and onto the official record of the United States, was reward enough. "This I do know from my parents," Faden says with a long exhale, "being able to tell your story, to have it chronicled and legitimated, even if that's all that happens, even if the world doesn't change and there's no compensation for your pain or punishment for the people you perceive as the wrongdoers, just being listened to, being treated respectfully, and being told yes, I believe this happened to you, is an essential service to provide." But in the end, the advisory committee did much more than this.
"The ethics of research involving human subjects wasn't a big-burner national question, and I think we were instrumental in putting it at the center of interest in bioethics," says Faden. And the issue has remained at the center of interest because, as the committee discovered, the problems weren't isolated in history. committee members had hoped to say there were policies in place today to protect citizens from anything like the human radiation experiments. But they couldn't. What they reported instead were "serious deficiencies" in the system for protecting research subjects, and with this phrase, which has become a slogan for research ethicists, the committee set in motion years of follow-up.
During a ceremony in which the president accepted their recommendations, he established the National Bioethics Advisory Commission, a government successor to the committee, to investigate some of these serious deficiencies, and the NIH increased spending on research into the ethics of research. As far as policy changes, the President "accepted" all their recommendations but acted on few. "We were able to secure some very immediate policy changes that address some of the current deficiencies," says Faden. Policies like the one that now prohibits secret human experiments without the expressed informed consent of subjects.
But there are many deficiencies that haven't been addressed, such as the one that allowed children like Fred Boyce to be fed radioactive oatmeal. "Today," the committee wrote in its report "fifty years after the Fernald experiments, there are still no federal regulations protecting institutionalized children from unfair treatment in research involving human subjects. The committee strongly urges the federal government to fill this policy void."
"It will take time to determine whether we were a footnote in history or whether we had more impact than that," says Faden. "But in terms of the accomplishments of the commission, to me, one of the most important was recording history. Like any kind of completing or correcting of the historical record, there's an inestimable value that you have to attach to knowing that a part of history that was not acknowledged, not preserved, is now protected. It's there, and it will always be there." Like stories of the Holocaust that Faden's mother told in poems and visits to schools and synagogues, the stories of human radiation experiments in the United States are now undeniably real.
Rebecca Skloot is a freelance writer living in Pittsburgh.
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