by George Taniwaki
A few weeks ago, my friend Carol Borthwick, who runs QEAN Medical, brought to my attention a website called MatchingDonors.com. It is a 501(c)3 nonprofit organization that matches organ donors and recipients.
Image from MatchingDonors
The site is mentioned in a story that appeared on CBS News in 2005. The story featured two people who met via the website. Their surgeries took place at Porter Adventist Hospital in Denver (the city where the recipient lives) after their initial surgeon declined to perform them at an unnamed hospital that decided that donor-recipient pairs made over the Internet were ethically unacceptable.
The first donor-recipient pair to meet via MatchingDonors and follow through with a transplant also appeared on CBS News in 2004 (the story incorrectly states that the site is for-profit). By coincidence, these two people also had their operations in Denver, at Presbyterian St. Luke’s Medical Center. By another coincidence, I used their picture to illustrate my first blog post. And like the story in the previous paragraph, the surgeon who was originally scheduled to perform the operations declined after learning how the two met. The hospital ethics committee ruled that the surgery met guidelines and another surgeon at the hospital performed the operations.
Wanting to learn more about MatchingDonors, I joined almost immediately. Donors can register for free. Recipients pay from $295 for a 30-day membership up to $595 for a lifetime membership (meaning lifetime of the MatchingDonors website, not the patient). However, I wasn’t sure what my next steps would be. Until learning of MatchingDonors, I had never considered contacting potential recipients directly. Should I contact them one at a time or all at once? How do I pick? People post their pictures, bio, and story, so this is like a dating site, except to solicit organs. I expect that all of these patients are also on the national organ waiting list, so their use of MatchingDonors means they want to circumvent the list and find a compatible donor sooner. The MatchingDonors website says as much. I can see how this raises a variety of ethical issues. In an opinion piece in the Chicago Tribune in July 2007, Timothy Murphy, a bioethicist at Illinois College of Medicine, advocates against allowing directed stranger donations.
I realize that very few people ever consider making a live organ donation. It’s hard enough to make the choice if the recipient is a relative or friend. It is even harder to think about doing it when there isn’t an emotional connection to the recipient to drive the altruism. There may be many people who are in favor of the idea of a live donation, but are on the fence when it comes to actually making the donation to a “deserving” individual. I hope my blog pushes them to the “I can do this” side. But what if the unknown recipient is less than perfect? For instance, what if the recipient might be a drug abuser, or a convicted felon? What if the recipient might be mentally ill or poor and unlikely to maintain the rigorous and expensive antirejection drug regimen? Would you refuse to donate then?
If you aren’t willing to donate to just anyone, then services like MatchingDonors serve an important and valuable role in increasing the number of transplants by helping donors find a recipient with whom they can create a bond with that tips the scale in favor of donation. A well-argued rebuttal to the Chicago Tribune opinion was written by Tom Simon, who donated one of his kidneys to a woman he found using MatchingDonors.
The consensus regarding the ethical acceptability of various organ donation practices changes quickly. Thirty years ago, only donations from either closely related individuals were possible. But with improved immunosuppressant drugs, transplants from strangers, always deceased, became possible. Most hospitals preferred transplants using deceased donor organs over live organ donations because of the dictum of “do no harm” to the donor. However, because the outcomes were better, live donations became preferred, but still viewed with caution. Despite the availability of immunosuppressant drugs, hospitals only allowed biologically related individuals to be live donors. Then, about a decade ago, some hospitals began allowing spouses to donate. The permitted group then expanded to include friends, then coworkers, then nondirected stranger donations (which is the process that I am pursuing), and finally strangers that met specifically to complete a donation. However, this expansion of allowed donors is still controversial as can be seen in 2002 J. of Law, Medicine, and Ethics (subscription required). Today, about half of hospitals allow nondirected stranger donations. Currently, only a few hospitals allow directed stranger donations and the comments by ethicists are mostly negative, but I expect attitudes to evolve over time.
After joining MatchingDonors, I do a few quick searches. First, I find that there over 7,000 donors registered but fewer than 500 kidney patients. This is the opposite of what I expected. This may be due to the high cost of membership for patients, but it also shows the power of social networking websites to attract and engage like-minded folks to participate. I filter the 500 patients for AB+ blood type and find 11. Then I filter those 11 for Washington state, and find zero matches. So there is nobody on the list that matches me that might already be a candidate for surgery at UWMC. I could broaden my search to include other states or other blood types (with whom I could form an incompatible pair in order to participate in a pair exchange) but I’m not prepared to do either.
I occasionally receive email messages from patients on MatchingDonors. They all appear to be blast mails by a new member, a form letter saying why they need a kidney and why I should either donate my kidney to them or form an incompatible pair if we don’t match. The emails are a bit unnerving, but since they are not addressed to me personally, I don’t respond. I don’t think I will contact any patients and will continue to pursue a nondirected donation through UWMC.
For more ideas on finding a donor, see my Kidney patient guide.
[Update2: Forming an incompatible pair with a recipient would not be a good strategy as explained in a Mar 2010 blog post.]