Soliciting Organ Donors on Facebook Pushes Ethical Envelope

NATIONAL HARBOR, MD. – Facebook is being used to directly solicit living kidney donors, and some aspects of that use raise privacy and ethical issues, according to Dr. Alex Chang.

The social networking site has been widely praised since its May 1 launch of a program allowing users to add organ donor status to their timelines and facilitating users’ linking to their state or national organ donor registries. However, its use for directly soliciting living donors raises issues of concern that organ transplant programs need to recognize and respond to, said Dr. Chang, a nephrology fellow at Loyola University Medical Center, Maywood, Ill.

"What I like about what Facebook has done is that it increases organ donation awareness and makes it personal. ... Facebook, I think, will dramatically increase organ registries if this is implemented well. However, careful consideration of the risks and benefits should be taken prior to being a living kidney donor," Dr. Chang said in an interview at a meeting sponsored by the National Kidney Foundation.

In their poster presentation at the meeting, Dr. Chang and his colleagues analyzed 144 English-language pages on Facebook devoted to soliciting a living kidney donor for a specific person in need. Potential organ recipients ranged in age from 2 to 69 years, and included all racial and ethnic groups and blood types. Of the pages for which the relationships between the page creator and the patient could be determined, 37% were created by the patients themselves, 31% by their children, and 32% by other family or friends.

People posted a range of information from one-sentence requests to explicit medical histories, as well as photographs of family and of the patient receiving hemodialysis.

"Much more careful consideration of the ethical implications of using social media is needed. The privacy issue is huge. ... Many people do not realize the vast amount of information that can be garnered from their Facebook pages, and when you add medical information to that, the risk is increased more," he said.

Although the contribution of Facebook in soliciting donors couldn’t be determined, 30% of the pages reported that donors had been tested, and 12% that a kidney transplant had been received. Individuals for whom donors were tested were significantly more likely to be white and to have more than 50 posts by others on their sites.

The risks of kidney donation were mentioned by 5% of the pages; only 11% mentioned associated costs. "I thought that was pretty astonishing since you are asking a very serious favor of your friends and family and/or strangers, and there is little mention of the actual risks and costs. Oftentimes, donors are caught unaware of certain financial costs such as missing 2 weeks of work and [the fact that] the long-term consequences of living kidney donation are still not totally certain. I believe this deserves fair mention if this method of media is being used for this purpose," Dr. Chang said.

Also of concern: Offers to sell kidneys were posted on 3% of pages.

"In my view I think it is premature to promote using Facebook to solicit living kidney donors. However it is happening and will continue to happen. I think that transplant programs have to recognize this and come up with plans on how to deal with social media–mediated living kidney transplant."

Dr. Chang said he had no relevant financial disclosures.

NATIONAL HARBOR, MD. – Facebook is being used to directly solicit living kidney donors, and some aspects of that use raise privacy and ethical issues, according to Dr. Alex Chang.

The social networking site has been widely praised since its May 1 launch of a program allowing users to add organ donor status to their timelines and facilitating users’ linking to their state or national organ donor registries. However, its use for directly soliciting living donors raises issues of concern that organ transplant programs need to recognize and respond to, said Dr. Chang, a nephrology fellow at Loyola University Medical Center, Maywood, Ill.

"What I like about what Facebook has done is that it increases organ donation awareness and makes it personal. ... Facebook, I think, will dramatically increase organ registries if this is implemented well. However, careful consideration of the risks and benefits should be taken prior to being a living kidney donor," Dr. Chang said in an interview at a meeting sponsored by the National Kidney Foundation.

In their poster presentation at the meeting, Dr. Chang and his colleagues analyzed 144 English-language pages on Facebook devoted to soliciting a living kidney donor for a specific person in need. Potential organ recipients ranged in age from 2 to 69 years, and included all racial and ethnic groups and blood types. Of the pages for which the relationships between the page creator and the patient could be determined, 37% were created by the patients themselves, 31% by their children, and 32% by other family or friends.

People posted a range of information from one-sentence requests to explicit medical histories, as well as photographs of family and of the patient receiving hemodialysis.

"Much more careful consideration of the ethical implications of using social media is needed. The privacy issue is huge. ... Many people do not realize the vast amount of information that can be garnered from their Facebook pages, and when you add medical information to that, the risk is increased more," he said.

Although the contribution of Facebook in soliciting donors couldn’t be determined, 30% of the pages reported that donors had been tested, and 12% that a kidney transplant had been received. Individuals for whom donors were tested were significantly more likely to be white and to have more than 50 posts by others on their sites.

The risks of kidney donation were mentioned by 5% of the pages; only 11% mentioned associated costs. "I thought that was pretty astonishing since you are asking a very serious favor of your friends and family and/or strangers, and there is little mention of the actual risks and costs. Oftentimes, donors are caught unaware of certain financial costs such as missing 2 weeks of work and [the fact that] the long-term consequences of living kidney donation are still not totally certain. I believe this deserves fair mention if this method of media is being used for this purpose," Dr. Chang said.

Also of concern: Offers to sell kidneys were posted on 3% of pages.

"In my view I think it is premature to promote using Facebook to solicit living kidney donors. However it is happening and will continue to happen. I think that transplant programs have to recognize this and come up with plans on how to deal with social media–mediated living kidney transplant."

Dr. Chang said he had no relevant financial disclosures.

NATIONAL HARBOR, MD. – Facebook is being used to directly solicit living kidney donors, and some aspects of that use raise privacy and ethical issues, according to Dr. Alex Chang.

The social networking site has been widely praised since its May 1 launch of a program allowing users to add organ donor status to their timelines and facilitating users’ linking to their state or national organ donor registries. However, its use for directly soliciting living donors raises issues of concern that organ transplant programs need to recognize and respond to, said Dr. Chang, a nephrology fellow at Loyola University Medical Center, Maywood, Ill.

"What I like about what Facebook has done is that it increases organ donation awareness and makes it personal. ... Facebook, I think, will dramatically increase organ registries if this is implemented well. However, careful consideration of the risks and benefits should be taken prior to being a living kidney donor," Dr. Chang said in an interview at a meeting sponsored by the National Kidney Foundation.

In their poster presentation at the meeting, Dr. Chang and his colleagues analyzed 144 English-language pages on Facebook devoted to soliciting a living kidney donor for a specific person in need. Potential organ recipients ranged in age from 2 to 69 years, and included all racial and ethnic groups and blood types. Of the pages for which the relationships between the page creator and the patient could be determined, 37% were created by the patients themselves, 31% by their children, and 32% by other family or friends.

People posted a range of information from one-sentence requests to explicit medical histories, as well as photographs of family and of the patient receiving hemodialysis.

"Much more careful consideration of the ethical implications of using social media is needed. The privacy issue is huge. ... Many people do not realize the vast amount of information that can be garnered from their Facebook pages, and when you add medical information to that, the risk is increased more," he said.

Although the contribution of Facebook in soliciting donors couldn’t be determined, 30% of the pages reported that donors had been tested, and 12% that a kidney transplant had been received. Individuals for whom donors were tested were significantly more likely to be white and to have more than 50 posts by others on their sites.

The risks of kidney donation were mentioned by 5% of the pages; only 11% mentioned associated costs. "I thought that was pretty astonishing since you are asking a very serious favor of your friends and family and/or strangers, and there is little mention of the actual risks and costs. Oftentimes, donors are caught unaware of certain financial costs such as missing 2 weeks of work and [the fact that] the long-term consequences of living kidney donation are still not totally certain. I believe this deserves fair mention if this method of media is being used for this purpose," Dr. Chang said.

Also of concern: Offers to sell kidneys were posted on 3% of pages.

"In my view I think it is premature to promote using Facebook to solicit living kidney donors. However it is happening and will continue to happen. I think that transplant programs have to recognize this and come up with plans on how to deal with social media–mediated living kidney transplant."

Dr. Chang said he had no relevant financial disclosures.