Families Find Hope on Social Media for Relatives Needing Organ Transplants

Despite countless media campaigns, organ donation rates in the United States and the UK have remained static while need has risen dramatically. Families Find Hope On Social Media Platforms For Relatives Needing Organ Transplants.


Bexley, Kent -- (SBWIRE) -- 09/09/2013 -- New efforts to increase organ donation through public education are necessary to address the waiting list of over 100,000 patients. Families are finding hope on social media for relatives needing organ transplants but turning to social media has opened up a new set of ethical questions for a sensitive topic.

The Facebook Effect:

On May 1, 2012, the online social network, Facebook, altered its platform to allow members to specify “Organ Donor” as part of their profile. Upon such choice, members were offered a link to their state registry to complete an official designation, and their “friends” in the network were made aware of the new status as a donor. Educational links regarding donation were offered to those considering the new organ donor status. On the first day of the Facebook organ donor initiative, there were 13?054 new online registrations, representing a 21.1-fold increase over the baseline average of 616 registrations.

With live donors, social media opens the playing field, but it also has its pitfalls, said Michael Volk, a transplant physician and bioethicist from the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.
“If you do it through social media, people with the most compelling story are likely to find someone, celebrities are more likely to find someone, people with more money to pay for the advertising. That certainly does raise some ethical concerns about fairness,” he said. “Most of these concerns would be overcome by effective regulation.”

'Power of social media':

Dr. Andrew Cameron, an associate professor of surgery and head of the liver transplant program at Johns Hopkins Hospital believes social media will be the solution to the regulation problem. He was one of the people who organized the roll-out of an organ donation initiative that started May 1, 2012, on Facebook allowing users to display their organ donation status on their pages and register to be a donor through the site.

Within a few days, the number of people registering on a state-by-state basis for donation increased 21-fold, he said. “It was an interesting success in that it spoke to the power of social media. This is a public health problem, and it’s one that depends on communication of a difficult topic,” Cameron said. Now, Johns Hopkins is working with Facebook again to develop an app that can be downloaded by people in need of a kidney transplant. The app will guide them on how to tell their story through social media and how to inform potential donors of what it’s going to take.

VideoDonor 'YouTube Alternative for Organ Donation Videos':

In the meantime, Dean Jones a designer from the UK has lunched a organ donation video sharing website and app called VideoDonor which allows users tell to share there stories with potential donors around the world. On YouTube, the wildly popular video-sharing site, the most-watched video clips include David Letterman's public evisceration of Paris Hilton, music videos by Rihanna and Soulja Boy, and, of course, a young man's heartfelt plea to "leave Britney alone." Organ Donor have widely used this platform to reach out but one of the dangers of reaching out on the Internet is that you never know what you might find — including porn, predators and hate speech. In contrast VideoDonor's founder states that the site is “family friendly and kid safe.” To live up to that slogan, VideoDonor has now set up an elaborate security system: Absolutely everything is monitored, 24 hours a day, seven days a week by the “video police.”

How to help
There is no age limit or health history restrictions to join the organ donor registry.
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