Altruistic kidney donations are on the rise, but some voice ethical concerns

[Karol]

Altruistic kidney donations are on the rise, but some voice ethical concerns

By: Katie Worth 02/06/11 4:00 AM
Examiner Staff Writer

Two women reunited in the lobby of a waterfront hotel one recent morning, with one embracing the other, the other awkwardly hugging back, both laughing.

“She’s like that, she gets all touchy-feely on me,” said the giggling tall blonde in black, Sally Kennerson. “Oh, I know you’re not a hugger — I don’t mean to hug you so much,” said a broadly smiling Shar Carlyle, but not before giving Kennerson another squeeze.

Their comfort level with hugs is just the beginning of their differences. Carlyle is a self-described “crunchy granola liberal” from Marin County, unmarried and childless, with a degree in dance therapy. Kennerson is a former Air Force recruit from Denver, a mother of three, executive director of a painting and decorating contractors organization, and proud of her conservative beliefs. But what the women have in common is not trivial — a pair of kidneys.

Six years ago, Kennerson donated one of her kidneys to Carlyle, then a virtual stranger she had met online just months before. Last month, the two women reunited because Kennerson, who now lives in St. Louis, was visiting the Bay Area on a business trip and she and Carlyle spent some time catching up. Kennerson jokes that she donated her kidney to Carlyle in hopes of convincing a Californian to vote Republican.

“We’ll do whatever it takes to get votes,” she said, with a grin.

It did not work — the two still do not see eye to eye on politics. But the pair of kidneys they have is a bond that has kept them close, and one shared by an increasing number of strangers. Ten years ago, only a handful of so-called altruistic kidney donations were conducted each year worldwide. Today, there are at least 100 each year in America alone, and the trend is likely to continue upward, according to bioethicists and surgeons.

But live kidney donations to strangers remains a controversial practice, and doctors and law enforcement are concerned that people are illegally offering to sell their organs under the veneer of altruism. Federal law bans the sale of organs, but San Francisco-based transplant bioethicist Katrina Bramstedt said of every 100 kidney donors she has screened, perhaps two or three of them are trying to sell their own organs — a crime punishable for both parties by fines and prison time.

While the most common form of organ donation occurs after a person is deceased, improvements in vehicle safety have slowed down organ harvesting from the dead in recent years. This has forced people in need of kidneys to search for living donors, often someone in their family or circle of friends, but sometimes from people they have never met.

Some hospitals refuse to participate in altruistic organ donations, with many medical professionals simply unable to believe that someone could give away an organ to someone they do not know without a profit motive, said Dr. Amy Waterman, an assistant professor of medicine at Washington University in St. Louis and the vice chair of the United Network for Organ Sharing’s Living Donation Committee.

“At first, people just couldn’t understand why anyone would want to donate an organ while they’re alive,” Waterman said. “And once that became OK, people asked, ‘Why would a friend want to donate to a friend? That seems kind of crazy.’”

But San Francisco’s California Pacific Medical Center, where Kennerson and Carlyle had their organ transplant surgeries, has become a destination in Northern California for people who wish to donate their kidneys to strangers, said Dr. Stephen Katznelson, the medical director for the hospital’s kidney transplant program.

UC San Francisco’s transplant center has also conducted about 10 to 20 altruistic donations, said professor of surgery Dr. John Roberts. Many of the most recent donations have started donation chains, where, for example, an altruistic donor will give a kidney to a stranger. That stranger’s wife might have been willing to give him a kidney, but they were a poor match. So instead, she gives her kidney to another stranger, who in turn has a poorly matched loved one willing to give a kidney to someone else.

These chains make giving up a kidney even more attractive for people inclined to give, Roberts said, and will spur on the trend of altruistic donations.

Participating in such a chain was not possible in Carlyle’s case — she had no one in her family or circle of close friends able to donate a kidney. She had been diagnosed with a deadly genetic kidney disease that had already killed her father and youngest brother, and a second brother was living on dialysis while awaiting a new kidney. She was willing to try anything to avoid the same fate. She decided to put up a profile on MatchingDonors.com, a then-new social network that tries to match people who need organs with strangers who are willing to give them one.

Within a few months, Kennerson had heard about the site on a news show, decided to peruse it and found Carlyle’s profile. During the next weeks and months, they e-mailed and spoke on the phone, and Kennerson came out to San Francisco and met Carlyle and her family. They knew they had the same blood type — a good first step — but further tests illuminated that they were a much better match for each other than they had dared hope. When Kennerson came to San Francisco a second time, it was to have one of her kidneys removed and given to Carlyle.

Exactly what motivates an altruistic donor varies.

Bramstedt is writing a book on the people who give up organs to strangers, and she has interviewed 22 of the donors and found that while there was no demographic or socio-economic profile for the people who chose to donate, they all have a deep sense of responsibility to serve others.

As for Kennerson, touchy-feely Carlyle describes her as a “true American hero,” but Kennerson rejects that kind of description. She simply did it because it made sense to her.

“I knew there wasn’t a lot of risk to myself beyond the surgical risk, and once I found out that I was such a great match for Shar, I thought it was something I really needed to do,” Kennerson said. “She needed a kidney and I had an extra. That was it.”

SF hospital adapts to changes in kidney-donation process

Six years ago when Sally Kennerson decided to donate her kidney to Shar Carlyle, the women had to hide the nature of their acquaintance.

Carlyle and Kennerson did not let on that they had met on then-new website MatchingDonors.com, a social network that aims to connect patients in need of new organs and potential altruistic donors. People in need of an organ pay $600 to post a profile on the site that tells their story and tries to attract a sympathetic donor. Potential donors can peruse the profiles and perhaps choose one to donate to, if they are a good blood and genetic match.

When Kennerson spotted Carlyle’s profile on the site, their hospital, California Pacific Medical Center, had a policy against accepting strangers who met that way.

“I think a lot of transplant programs have some concerns with using [MatchingDonors.com] because at their inception, there had been some concerns about money changing hands,” said Dr. Stephen Katznelson, the director of CPMC’s transplant center.

MatchingDonors.com has worked to allay those fears, policing the site and watching out for potential scammers or organ purveyors, according to founder Paul Dooley. And slowly, it has become more accepted around the country. Dooley said more donations have occurred each year the website has existed. And just this month, three more MatchingDonors.com-paired surgeries are planned, bringing the total to 141. He said 40 or 50 more surgeries are planned for this year.

Recently, CPMC decided to adjust its policy and accept pairs who met on the Internet on a case-by-case basis, Katznelson said. He said hospital officials are considering a system where Internet pairs participate in a closed-chain swap, where the donor’s kidney goes to a true stranger and that stranger’s donor goes to the originally intended recipient.

“It kind of uncouples the donor and recipient [who met on the Internet] and may therefore decrease any concerns about money exchanging hands,” Katznelson said.

What compels someone to donate an organ to a complete stranger?

For her book “The Organ Donor Experience: Good Samaritans and the Meaning of Altruism” slated to be published next year, Katrina Bramstedt interviewed 22 benevolent donors about what motivated them to give up an organ to a stranger. Here is what she found:

“Most of them come from the background of working in a service environment, or their family did. A lot of them had background in the military, a sense of volunteerism and of service. Almost all of them have a history of blood donation. They weren’t necessarily wealthy people or had high-powered jobs, but they were people with a lot of empathy, people who have the ability to turn and look outward, and they love to help and they actually feel a responsibility for taking care of other people.

“They feel a duty to help when they themselves feel they have so much — it doesn’t mean they have money, they can feel they have so much in other ways. They just feel they have to give back somehow, and that is consistent over and over and over in these 22 people I interviewed.”

People in need of kidneys

Here are some sample profiles posted to MatchingDonors.com:

Mary Christoffersen
Blood type: A-positive
Age: Not listed
State: California
Description of situation: “I am praying that someone on Matching Donors will free me from this prison of pain and suffering. I go to dialysis, to my doctor, and then home. My world has shrunk to those 3 places.”

Doug Gold Blood type: A-positive
Age: 27
State: Nevada
Description of situation: “I was born with only one kidney which failed just before my thirteenth birthday. I just want to get back to the life I had of traveling, feeling good, helping people, and being a productive member of society without being tied down to a machine.”

John Myers
Blood type: O-positive
Age: Not listed
State: Arizona
Description of situation: “John started getting sick in 2003. He was misdiagnosed until June 2005 when he went to the emergency room and found out he was in kidney and heart failure and needed a transplant. A kidney would save his life, give him life and hope.”

Elifida Amesquita
Blood type: O-positive
Age: 70
State: Texas
Description of situation: “My name is Blanca and I am writing in behalf of my mother. We have prayed to God to move someone’s heart to donate my mom a kidney. I understand that only God can make miracles. We need someone to give my mom the gift of life.”

Michael Marks
Blood type: B-positive
Age: 45
State: Pennsylvania
Description of situation: “One of my children is autistic [Asperger’s syndrome] and needs my financial and emotional support. Unfortunately, my attention has been diverted recently to my own health problems. I am scheduled to begin dialysis three days a week in a very short time. I would also like to remain able to help my family members, especially my autistic son.”

By the numbers

87,730: People on national waiting list to receive a donated kidney
1,121: Average number of days a patient must wait for a kidney
18: People who die every day while waiting for a kidney
16,520: Kidney transplants in 2008
5,968: Living-donor trans-plants in 2008 — the remainder were deceased donors

Sources: Organ Procurement and Transplantation Network, OrganDonor.gov, National Kidney Foundation

http://www.sfexaminer.com/local/2011/02/altruistic-kidney-donations-are-rise-some-voice-ethical-concer