Profile: Ruth Faden

April 2014 Home Column List 2

Profile: Ruth Faden

Barbara Pash


Ruth Faden. Photo courtesy of the Berman Institute.
When Ruth Faden looks back on her long career, she can pinpoint the moment she decided to go into public health.

She was doing her master’s degree in American studies at the University of Chicago, working for a professor doing research on female contraception. Her job was to recruit young women to test a new intrauterine device. She considered volunteering to use the IUD herself. But when Faden told the professor—whom she remembers as a kind and caring person—his response shocked her: “Oh no, my dear,” he replied, “why don’t you wait until we know more.”

“It turned my world upside down,” says Faden, who was horrified that she had been recruiting women for such a risky project. She changed her course of study, and got a master’s and a doctoral degree in public health, both from the University of California Berkeley, and embarked on a new career.

Faden is the founder of Johns Hopkins Berman Institute of Bioethics, and has been the director since it opened in 1995. The institute focuses on the ethics of clinical practice, biomedical science and public health locally and globally, and engages students and policymakers in discussions of those issues. Located on the Johns Hopkins East Baltimore Medical Campus, site of Hopkins Hospital and Kennedy Krieger Institute, the institute, with a staff of over 30 core and affiliated faculty, is one of the largest such facilities in the world. Since inception, the institute has received more than $30 million in federal research funds and $49 million in philanthropic support.

Not only did she help found the premier institute on bioethics, Faden has also written seminal books in the field and won numerous awards, most recently the 2011 Lifetime Achievement Award granted to Faden and her husband, bioethicist Tom Beauchamp, by Public Responsibility in Medicine and Research, a nonprofit dedicated to advancing the highest ethical standards in the conduct of research.

A youthful 63, Faden’s brown hair is cut in a short pixie style. Sitting at a conference table in her spacious office, her rimless glasses give her a professorial air, but her attitude is warm and gracious.

“We deal with issues that are not obviously unethical. There are moral dilemmas with good arguments on either side. That is the space we occupy, helping people become attuned,” says Faden, who is also a professor at the Hopkins Bloomberg School of Public Health and Hopkins School of Medicine as well as a senior research scholar at the Kennedy Institute of Ethics at Georgetown University.

Faden tends to work on what she calls the “dramatic” issues. There is no shortage of them—from who has access to the limited supply of vaccines to how to design and fund health care systems. To prepare for a possible worldwide avian (bird) flu pandemic in 2006, she organized an international project that delineated best practice principles, down to such details as making sure that the culling of chickens in China, if necessary, would not unfairly fall on small farmers.

One current issue that interests bioethicists, she says, is kidney transplants. A marvel of modern medicine, live donors are in short supply—and people can spend years on a transplant list.

But what if you can afford to go to a poverty-stricken country and buy a kidney from a donor, as routinely occurs on the black market. Even if the donor agrees—“gives his informed consent” is the jargon—“that is not enough,” Faden explains. “Some propositions may not be ethical, depending on the context. You are taking unfair advantage because desperate people will agree to bargains that people who are able to live even minimally decent lives likely never would.”

Faden mentions less obvious bioethics issues, such as an elderly woman whose Medicare benefits will not cover the cost of specialized equipment. But her sister’s insurance will. Should the equipment be ordered in the latter’s name? Or how about the 13-year-old girl who has a venereal disease and asks that her parents not be informed. What is the practitioner’s responsibility?

“These are everyday quandaries professionals deal with,” Faden says.

Medical ethics is nearly as old as medicine itself, but modern bioethics is much broader than medical ethics, which is now a subfield within bioethics. Bioethics is the ethics of medicine, of the biological sciences and of national and global public health policies. Bioethics is an interdisciplinary field in which philosophers, theologians, social and biological scientists, physicians, nurses and other health professionals work together on ethical challenges.

The field was hastened in the post-World War II era in reaction to the Nazi’s so-called medical experiments and by the 1970s revelation of the Tuskegee, Alabama, syphilis studies in the United States. (Between 1932 and 1972, the United States Public Health Service studied untreated syphilis in hundreds of poor, rural black men who thought they were receiving free health care from the government.)

Jeffrey Kahn, a professor and deputy director for policy and administration at the institute, dates the formal study of the field to advances in medicine and the invention of medical devices that allow the once impossible to happen.

He cites kidney dialysis, a life-saving machine that was once in short supply, as well as ventilators, which kept young Karen Quinlan alive long after it was thought possible in the 1970s right-to-life case that shocked the nation.

“The birth of the field was medical, but Ruth brought in the public health aspect. She is in the forefront of what we now think of as public health policy,” says Kahn, who met Faden when he was a graduate student in the field and considers her a mentor.

When Faden entered the field in the 1970s, though, bioethics as an academic discipline was barely a whisper. She recalls it being so small and so male-dominated that she was unaware it was a field. At the time, there were two bioethics institutes in the country and no doctoral programs or postdoctoral fellowships.

Now, every accredited medical school in the United States teaches the subject. It is also taught at the undergraduate level and in graduate and professional schools of public health and law.

In 2007, Faden was one of the founding members of The Association of Bioethics Program Directors. Its membership of 67 centers, institutes and departments, mostly in the United States and a few in Canada, accounts for about three-fourths of such facilities in the two countries.

“One of Ruth’s great contributions is that she built an institute like the Berman Institute,” says Kahn, the association’s founding president.

Faden’s initial focus was informed consent, the subject of her doctoral dissertation at the University of California. “I came from the women’s angle,” says Faden who, during her Berkeley years, volunteered at a women’s advocacy law firm.

For one of its cases, she looked into allegations that Latino women in southern California were being sterilized after giving birth. She discovered that the hospital was giving the women a consent form written in English, a language they didn’t necessarily understand. (She then reported her findings to the law firm that was doing the work but at this distance in time, she does not recall what happened with the case.)

After graduate school, her first job was teaching public health psychology at Hopkins School of Public Health. A few years later, in 1980, she convinced the public health school to start a bioethics program, which eventually led to the founding of the Berman Institute interdisciplinary facility.

“I came with a tremendous passion and recognition that important questions needed to be asked and answered,” says Faden.

Her background offers insight into her determination and dedication. Her mother and father were both Holocaust survivors. Her mother was interred at Birkenau, her father at Auschwitz. In that concentration camp’s infirmary, his appendix was removed—without anesthesia.

Because of the war, neither parent attended high school although they spoke multiple languages. They met after the war in a small town in Germany, married and immigrated to America, where Faden, an only child, was born and raised in Philadelphia.

“My parents had horrible lives but they were wonderful parents, giving me confidence and unending love,” says Faden, the emotion evident in her voice. “I can never disconnect my parents’ experience from my career.”

Being Jewish is central to her character, Faden says. She was raised with a profound awareness of the presence of evil and injustice in the world, and with a clear sense of Jewish commitment to doing what she could to “repair the world.”

It was only later in life that she made the connection between her Jewish beliefs and values and her career. “What I have always known is that I have a sacred duty to honor and witness what happened to my parents and their families because they were Jews, including an obligation to raise our children to carry on that sacred trust,” says Faden, who grew up in a home filled with Jewish songs, Jewish food, fond stories of the Old Country and Shabbat.

Faden’s achievements are too numerous to name. In 1986, she coauthored the landmark book A History and Theory of Informed Consent (Oxford University Press) with her husband, who is a senior research scholar at the Kennedy Institute of Ethics at Georgetown University and professor of philosophy there.

Faden has gone on to write articles and books on topics such as AIDS, women and childbirth policies. In 2006, she coauthored with Madison Powers, Social Justice: The Moral Foundations of Public Health and Health Policy, Issues in Biomedical Ethics (Oxford University Press), another classic in the field.

In 1990, then-President Clinton appointed her chair of his Advisory Commission on Human Radiation Experiments, one of several national bodies on which she has served. She cofounded the Hinxton Group, dealing with stem cell science, and the Second Wave, for pregnant women and drug and medical device policies.

“My father used to ask me, ‘What is it you do?’” Faden says, laughing. After her appointment to Clinton’s commission, when her picture with the president regularly appeared in the media, he had to revise his view. “He said, ‘I’m still not sure I know what you do but I know it’s important.’”

Alexander Capron, codirector of the Pacific Center for Health Policy and Ethics at the University of Southern California, says his colleague Faden connected bioethics with public health and with being a strong voice for women. Like Faden, Capron has spent 40-plus years in bioethics, starting, as he put it, “before there was a field.”

Capron, who brings a legal perspective to bioethics, has participated in numerous congressional and presidential committees and commissions, all of which, he believes, have moved bioethics from the realm of academic discourse to public discussion. Issues like the morning-after pill, stem cell research and genetic engineering “have TV dramas based on them,” he says. Capron believes Faden’s ultimate achievement may well be creating the Berman Institute, a testament to the force of her personality.

“A lot of scholars wouldn’t have the skills she has at building an institution,” says Capron. “The meetings, the fundraising, the organizing—it comes out of her life. The metric in academe is how many articles and books you’ve written, so there is an element of self-sacrifice.”

Faden and her husband live in Washington, D.C., where they belong to Washington Hebrew Congregation, a Reform synagogue, as well as Martha’s Vineyard Hebrew Congregation, a Reconstructionist synagogue. They have two adult children and two grandchildren.

“I have the most amazing family and the most remarkable grandchildren,” says Faden, a smile on her face.

For relaxation, Faden enjoys reading fiction, but her “passion,” she says, is cooking. She enjoys experimenting with various Jewish cuisines. She started with Eastern European Jewish cooking, mastering halla, gefilte fish, kreplach, egg noodles and, she assures, the “very best” chicken soup you’ll ever taste. She is now acquainting herself with other traditions such as Indian and Persian. But she still prepares holiday celebrations like Rosh Hashana and Passover from scratch, which, she says, is a challenge now that the family includes a few vegetarians.

The Hopkins Medical campus is undergoing a multimillion dollar building boom. In contrast to the chrome and glass towers that dominate the campus skyline, the Berman Institute is housed in a modest three-story brick building, a former police station circa 1876 whose interior has been renovated to a gleaming finish.

Despite the accolades, she is hardly ready to slow down. “I am hitting my stride,” says Faden, who is enormously proud of her role in the institute and of the growth of the bioethics field as a whole.

“Public interest has increased; there are more and more scholarships and programs,” says Faden. “The work we do is important. It makes the world a better place.” 

Barbara Pash is a freelance writer living in Baltimore, Maryland, who writes for a variety of print and online media.
 
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