People are turning to social media to bridge the chasm between those in need of life-saving organs and those who can help. This offers hope but also introduces risks
?| May 29, 2012?|
VITAL SIGNS: Last October a team of researchers at Loyola University Medical Center began tracking how Facebook was being used as a tool for connecting potential donors with those in need of an organ.
Image: Courtesy of uchar, via iStockphoto.com
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Since launching in February 2004, Facebook has proved highly effective at creating opportunities for the average Web user to create campaigns that reach a mass audience. Most recently such opportunities have extended to organ donation, an area that could benefit from the social network's attention?controversy over its recent initial public offering aside, Facebook's membership is more than 900 million and growing.
Indeed, with demand for healthy organs for transplantation growing worldwide, Facebook has already become a popular channel for people soliciting kidneys, livers and other potentially lifesaving organs. Earlier this month the social network began offering members the ability to identify themselves as organ donors on their Facebook pages and to locate state organ-donation registries if they would like to become donors.
Last October a team of researchers at Loyola University Medical Center began tracking how Facebook was being used as a tool for connecting potential donors with those in need of an organ. The researchers focused on kidney solicitations in particular and studied 91 Facebook pages seeking kidney donations for patients ranging in age from two to 69. Of the Facebook pages studied, 12 percent reported receiving a kidney transplant and 30 percent reported that potential donors had stepped forward to be tested to determine whether they were compatible, the researchers recently reported at a meeting of the National Kidney Foundation. One page reported that more than 600 people had been tested as potential donors for a young child.
There was a broad range in terms of how much personal information people disclosed. Some Facebook pages simply asked people to donate, without providing any other information. Other pages provided great detail about patients who needed kidneys, including explicit medical histories and family photos as well as emotional accounts of hospital stays, emergency room visits, financial problems and the difficulties of living on dialysis, according to the researchers led by Alexander Chang, nephrology fellow at Loyola University Chicago Stritch School of Medicine.
The research findings also raised ethical concerns: 3 percent of the pages received offers to sell kidneys, mostly from people in Third World countries. Would-be donors typically asked for $30,000 to $40,000, even though selling organs is illegal in most countries. In addition, only 5 percent of pages mentioned the risks of kidney donation (such as possible internal bleeding and/or infection as a result of the surgery) and only 11 percent mentioned associated costs.
Scientific American interviewed Chang to find out more about his team's reasons for examining Facebook as a means of soliciting kidney donations, the potential impact that social networks could have on the organ-donation shortfall and the possible dangers posed by using Facebook to match those in need of an organ transplant with potential donors.
[An edited transcript of the interview follows.]
What inspired you to study social media?Facebook, in particular?as means for soliciting living kidney donors?
As a nephrology fellow, I became interested in this issue as the transplant waiting list continues to grow and is outpacing the donor pool (from both deceased and living kidneys). The only really growing segment of the donor pool is coming recently from donors not related to the patients receiving the kidneys, and it seemed to me that social media must be an extremely easy way for people to search for kidney donors, as people are connected via Facebook to large numbers of friends, family and acquaintances they would not normally interact with in person or even by telephone or e-mail. As I could find no research on the subject, I thought it would be important to characterize what people are currently doing and how they are going about doing it.
Are you and your colleagues also looking at other organs (the liver, for example) being solicited via Facebook?
We specifically looked at kidney donors, as this is my interest as a nephrologist but also because the issues of kidney donation are quite unique, as living liver donations do not occur very often (and incur more risk to the donor) and bone marrow donations usually entail very little risk to the donors.
What was your process for searching Facebook for kidney donors?
We created a search on October 3rd, 2011, and looked for terms including "kidney donor," "need kidney," "kidney donation," "seeking kidney," "find kidney" and "kidney search." We found 131 pages in English. Of these pages, only 78 specified the purpose of finding a kidney for a specific person. We found an additional 13 pages that had the purpose of finding a kidney for someone, linked from these 78 pages, giving us a total of 91 pages for our study.
What conclusions can you draw at this time about how much Facebook use contributed to making successful solicitations?
Since these are just publicly accessible pages on Facebook, certainly this is just a snapshot of how people are using Facebook, as Facebook gives users the option of making pages "private," and people may also be sending messages directly to their friends via the social networking site. Such messages would not be included in our study. Since we only studied 91 pages, and our information was only derived from what was shared by the Facebook page to the public, this work should be considered hypothesis-generating.
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