For Sigrid Fry-Revere ’83, the exploration of medical ethics is both a professional calling and—after her son survived a kidney-cancer diagnosis 24 years ago—a personal mission. She holds a law degree and a doctorate in patient-care ethics from Georgetown University and has served as director of bioethics studies at the Cato Institute. In 2008, she founded the Center for Ethical Solutions, a nonprofit bioethics think tank. She has also written extensively on the issue, with articles in numerous publications, including The New York Times, Los Angeles Times and The Wall Street Journal.
In her just-released book The Kidney Sellers: A Journey of Discovery in Iran (Carolina Academic Press, 2014), Fry-Revere investigates Iran’s kidney market, which compensates organ donors. While this approach is highly controversial, she says, it is much more complex than merely selling organs. Here she talks about what she discovered in Iran, and why it could potentially be a model for change around the world.
What motivated you to write The Kidney Sellers?
Ever since my son was diagnosed with kidney cancer, I’ve been involved in the discussion about the organ shortage. While Iran claims to have solved its organ shortage, everyone I knew dismissed it as an exaggeration. I wanted to see for myself. Could we learn something from Iran’s 30 years of experience with compensated kidney donation? After going to Iran, I thought what I learned was so remarkable that I decided to write a book with a general audience in mind. I wanted to tell the story of pain and sorrow, of success and failure, of people willing to help others to help themselves and their families.
How does Iran’s system work?
In the late 1970s, Iran was part of the Eurotransplant network, developing the same types of cadaver-organ policies the rest of the West was developing. Because of the Islamic Revolution of 1979, the West imposed sanctions on Iran that cut the Iranian medical community off from its only source for cadaver-transplant technology. The Iranian medical community was desperate, lacking the infrastructure to provide even dialysis to most of its kidney-disease patients. At first, the Iranian medical community objected to people paying donors, then it looked the other way, and then it started regulating the process. After 15 years, the system evolved into a government-subsidized and sanctioned program.
What about the ethics of paying for organs?
When people think of organ selling they think of what they know about the black market and organ trafficking, which is highly unethical. But when there is rule of law and government support and regulation of a system that does not sell, but compensates donors for their service to others not only with money, but with health care, job services and legal protections such as informed consent and the enforcement of contracts, the risk of exploitation is minimal. Giving up a kidney is inherently good; that is why we encourage donation. Compensating kidney donors is a way to make altruism possible for those who, without financial support, couldn’t give.
How severe is the organ shortage in the United States?
Five years ago, the entire U.S. organ waiting list was 100,000. Today, the number of Americans waiting specifically for kidneys is 100,000. The average wait for a kidney is five years. Many kidney-disease patients don’t even try for a transplant. For those who brave the list, the chance of getting a transplant is less than 15 percent. Every day, 20 to 30 Americans die waiting for a kidney. The rest suffer on dialysis, getting sicker all the time and less likely to survive a transplant, even if they eventually get one.
How does the process of donating a kidney work in the United States?
In 1984, the United States banned all compensation for organs (with only a few minor exceptions) because of a scare created by a medical entrepreneur who suggested importing poor people from developing countries in order to purchase their kidneys. A ban was an understandable but regrettable overreaction. Today, there are financial disincentives to donate. For example, I personally was disqualified from donating to a friend—even though I was a medical match and I passed all my psychological tests—because I was found not to have enough of a “support group” to donate, meaning I did not have enough money in the bank to support myself while I recovered from surgery and, although my recipient was willing to help me meet my expenses, it was against the law for him to do so. He died. People donate to their friends and family, so the rich and well-to-do have friends who can afford to donate. The poor and most middle-class Americans don’t have friends who can afford to take two to three months off work to donate—let alone pay someone to help with their household chores or child care, so it is these Americans—both donors and recipients—who are disadvantaged by the existing system.
Why did you create the Center for Ethical Solutions?
I created the Center for Ethical Solutions as a dream think tank of my own—a non-partisan organization that would help bridge the gap between the academic world of patient-care ethics and what I know patients and their families need. I wanted to provide online information about ethical and medical issues and also provide tools that educate people and help them with their healthcare decisions.
How has Smith influenced your life and work?
At Smith, my great love was philosophy and, in particular, ethics. But I’ve also always had a practical side that wanted to improve the world—help people in a very concrete way. Smith taught me to stand up for what I believe in.
Abe Loomis is a freelance writer in western Massachusetts.