IN JUNE 2012, Canadian teen Tyler Schwering died after an accident. Knowing it is what he would have wanted, Tyler’s mother, Kim LeBlanc, consented to organ donation on his behalf. That decision saved the life of Dave Allingham, who received Tyler’s heart the next day. A year later, after finding one another with the help of social media, LeBlanc and Allingham met. Both say the experience was life-changing.
“Seeing what has come of something horrible has given me peace,” says LeBlanc. Allingham, now free of his heart condition, welcomed the chance to express his gratitude. “I cherish the gift I’ve been given,” he says. “Tyler’s legacy is alive and well.”
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Look around Facebook and it isn’t hard to find dedicated to connecting the families of deceased donors with the recipients of their loved one’s organs. Discussion boards feature pleas for information from those involved, desperate to know more about the people on the other side of their donation story.
Groups like these are a reaction to . Frustrated by this, people are . By turning to social media, families of the deceased and organ recipients seek to reap the that can arise when the two sides get to know each other. Yet, they are also unwittingly exposing themselves to should relationships go awry. It is time for policy-makers to restrictions and developing policies that will promote safe encounters for those who want them.
Since its advent in the 1950s, organ transplantation has become the treatment of choice for various diseases that eventually lead to organ failure. , tens of thousands of people who die donate their organs to other people every year. Yet, with few exceptions – such as Israel and some programmes in the US – organ donation organisations can’t disclose identities, even when both sides want to meet.
The decades-old regime of mandated anonymity arose in response to concerns about the risks of identity disclosure. For example, it was feared that getting to know an organ recipient could complicate the grieving process for donor families, or lead to feelings of indebtedness in recipients.
Times have changed. These policies should be : unfair restrictions on the autonomy of competent adults. Although there are risks to direct contact, shows there can be mutual and profound benefits. Getting to know a recipient can allow donor family members like LeBlanc to find meaning in loss and see the legacy of their loved one’s gift. For recipients like Allingham, the ability to express gratitude can be transformative. Denying people these benefits is paternalistic and wrong.
Some places have recognised this – though most have not. As a result, people turn to platforms like Facebook to make contact. This exposes how mandated anonymity isn’t just unfair, it is also . The reality is that barriers are increasingly bypassed through the Wild West of social media, but this means there is then no support available for those involved.
Organ donation organisations should face up to the realities of the social media age by developing responsible policy to facilitate direct contact between donor families and organ recipients. A balanced approach will help to protect anonymity for those who want it and allow safe contact when both sides wish it. There is no stopping mutually interested parties from meeting. The question now is, how do we manage it responsibly?
Nicholas Murphy is a postdoctoral fellow at Western University in Ontario, Canada. Charles Weijer is a professor of medicine and philosophy at Western University.
