AAAS Fellow Ruth Fischbach may be petite in physical stature, but she is a powerhouse in the field of bioethical science who, after decades of research and teaching, shows no signs of slowing down. Protecting the safety and rights of individuals whose lives may be impacted by medically related discoveries, decisions and research, fuels her passion to keep at it.
"Bioethics is a compound word—bio pertains to life, animals, humans, plants," explains Fischbach. "Ethics is how we choose to do the right thing—the instilling of morality and philosophy. I can't think of a more important field. It encompasses our way of life on our planet."
The definition of bioethics isn't straightforward. Bioethicists ask the tough, but morally imperative, questions, such as, "Should we use untested treatments to help a patient who is dying?" "What are the costs and benefits of a drug or device?" and "Are the patients and participants being protected?"
Among her many contributions to the field, Fischbach is co-founder of the Center for Bioethics at Columbia University in New York City, which just celebrated its 13th anniversary. She has produced seminal bioethics resources and guidance documents for researchers, received an NIH Award of Merit for her efforts in establishing the Tuskegee Center for Bioethics, and was elected distinguished leader by the board of directors at Public Responsibility in Medicine and Research.
One major area on her current radar is the brain. "We are doing amazing brain surgery, developing drugs, and even using implants without really understanding the mechanism," says Fischbach. Neurological developments raise many questions, she notes. For instance, conditions from Parkinson's to epilepsy to depression and even OCD may benefit from deep brain implants, but what if it induces or worsens symptoms instead of relieving them?
Similarly, there are questions about which therapies are acceptable for those who are terminal. "Should we use untested treatments to help a patient who is dying?" asks Fischbach. "During the AIDS epidemic, scientists were being methodical but people could not wait." For bioethicists, she says, these are tremendous dilemmas. "For people who are in desperate stages, we can give informed consent, and inform them about the risks as best as we can—that's the best we can do," says Fischbach.
Fischbach's drive to give a voice to those who may not have one is likely deeply rooted in her own family's history. "My entire family in Europe was exterminated during the Holocaust," says Fischbach, adding, "They say that bioethics arose from the ashes of the Holocaust."
Her career in patient advocacy began with a nursing degree from Cornell (although she originally wanted to be a physician, as a woman, her parents discouraged her). She became the first nurse practitioner in rheumatology at the Robert Breck Brigham Hospital in Boston (now Brigham and Women's), where she examined and prescribed tests and medication for patients—a revolutionary role for nurses at that time.
She went on to Beth Israel Hospital, where she was appointed coordinator of a research project to see how to increase patients' adherence to their medical regimens. The researchers gave patients a copy of their medical record, which detailed what happened in the examination. They soon realized that just having patients take a copy of the record home wasn't sufficient to promote adherence, so they began something novel: Patients co-authored their own record with their treating medical staff.
"Now I could see both sides, the observer and the patient," says Fischbach. "It gave me great insight into what transpires with a patient, and I came to see that healthcare providers are often at fault for not really listening to their patient."
As Fischbach continued to build her career, she and husband Gerry Fischbach—a renowned neuroscientist whom she met at Cornell—also were building a family. They had four children, two of whom became respected physicians in their own right. She and her husband juggled work and family, but Fischbach managed to not only start over but to thrive at a new school or hospital whenever her husband had to move for a new job.
Fischbach got her first taste of biothetics while working on her dissertation and during a post doctorate at Washington University Medical School (WUMS). There, she sat in on a medical ethics class taught by the forerunner of bioethics at WUMS, John Vavra, and eventually began to help teach the class. When Vavra passed away, she was the only one qualified and prepared to take over his course. From 1986 to 1990, Fischbach headed and expanded the Ethics Program and founded the Humanities in Medicine Program there.
After the family moved to Boston in 1990, Fischbach's work shifted to the national stage. She served as bioethicist/medical sociologist at Harvard Medical School in the Department of Social Medicine and the Division of Medical Ethics for eight years before becoming Senior Advisor for Biomedical Ethics in the Office of the Director of Extramural Research at the National Institutes of Health (NIH). There, she was a part of many federal interagency committees designed to protect the rights and promote the welfare of research participants.
Fischbach has many research concerns, including studies related to autism (whether autism is portrayed correctly in the media and whether or not it's possible to get informed consent from a child on the autism spectrum, for instance). Not surprisingly, bioethical concerns surrounding stem-cell research are another area of interest.
"It's a field fraught with controversy and passionate feelings on both sides," says Fischbach. The promise of new drugs and new therapies from stem-cell research looms large and people are desperate, she says. Unfortunately, she adds, some disreputable practitioners overseas are injecting patients with ineffective and potentially harmful substances while claiming great benefits. It's a stark illustration of what can happen when there is no oversight mandating careful following of the scientific method and phases of clinical research to ensure patient safety.
On the other side of the debate are people who believe that life begins at conception, and for them, there is no ethical use of embryonic cells for research. Personally, Fischbach says she is in favor of stem cell research after weighing the potential benefits. She cites the fact that there are roughly 400,000 to 500,000 embryos stored in fertility clinics—some of which may not be used and may be destroyed—that have been donated for research by some couples. Fischbach says she is respectful and grateful for the gifts that these couples can give.
This intrepid pioneer of bioethics is still asking the tough questions through her research, lectures and seminars. Fischbach observes that, "people are reluctant to call in the bioethicists for fear we will dictate things, but we are not there to tell people what to do. We are there to discuss the costs, benefits, and harms and to present options."
As bioethicists race to keep up with new medical technologies, it's more imperative than ever that they—and we—consider the effects. "It's reckless to not consider potential harm; we need to be constantly observant," says Fischbach. "The bioethics mantra is, 'It's not what you can do; it's what you should do.'"