Facebook is urging members to add organ donor status
MATT RICHTEL & KEVIN SACK
MOST Americans think about whether to register as an organ donor only when renewing a driver’s license. Facebook wants people to spend much more time thinking about it, and to encourage others to do so.
The company announced a new feature recently to allow its vast network of members to advertise their donor status on their pages. Facebook hopes the move will create a kind of social currency around organ donation, so that people declaring their intention to donate will create peer pressure for others to follow suit.
Nearly 7,000 people in the United States die each year while waiting for an organ transplant. It is a number that Facebook hopes to lower with its vast network of 161 million members in this country.
The company says it plans to add it in several other countries in the coming months. Globally, Facebook has about 900 million members.
This rare venture by Facebook into social engineering could have a profound effect, experts in the field of organ donation say.
“It’s a game changer,” said David Fleming, president and chief executive of Donate Life America, an organisation that works to promote organ donation.
Efforts to increase the rolls of organ donors – fewer than half of adults register – have enjoyed only modest success in part because the issue is one most people think about rarely, Fleming said.
“Standing in line at the DMV is not the time to have a soul-searching conversation about what happens when you die,” he said. Now, he added, “It will be part of an everyday conversation, everyday life.” Fleming and other organ donation experts say Facebook’s feature will not just spur more people to sign up with state registries but could also create an informal alternative to such registries that would, even though it does not carry the same legal weight, lead to more organ donations.
That is because a disclosure on Facebook could provide the evidence of consent that family members need when deciding whether to donate the organs of a loved one.
Under the Facebook plan, members will be able to declare and update their organ donation status. The status will appear with other biographical information in a section called Health and Wellness, which includes, for example, updates on whether a person has recently lost weight or has ever broken a bone.
This feature will also lead to links to state online donor registries, where people can change their donor status; or they can still do so the traditional way, by visiting their local motor vehicle department.
Some experts in the field of organ donation agreed that Facebook could substantially help change the culture, but they emphasised that the website would not become a de facto registry.
Charlene R Zettel, chief executive of Donate Life California, an arm of the national advocacy group, noted that when someone signs up with an official state registry, it is a legal declaration that allows their organs to be donated without family consultation.
In a situation where the deceased is not in a registry, organ procurement specialists often contact the family and succeed in persuading them to grant consent.
If people were to declare themselves organ donors on Facebook, Zettel said, it might simplify and hasten the decision for families to approve a donation.
“I think that it would certainly provide direction and comfort to the family,” she said. “Whether it would be legally defensible if a family wanted to challenge it, that’s a whole new arena.” The change at Facebook came about in part because of a college connection between Sheryl Sandberg, the company’s chief operating officer, and Dr Andrew Cameron, the surgical director of liver transplantation at Johns Hopkins Hospital.
Cameron, a 1991 graduate of Harvard, had written about his transplant efforts – and the struggles to find donors – for a class reunion booklet. His entry was read by Sandberg, a former classmate and a friend. At a reunion in May 2011, Cameron recalled standing at a mixer when Sandberg told him she had read about his efforts and had been thinking about the struggle to get more organ donors.
“She said: ‘I think we can fix that,”’ Cameron recalled. “It was a chills-up-thespine moment.” He said that people who died for want of an organ did so mostly because there were not enough donors, not because of any shortcomings in medical technology.
“The math will radically change, and we may well eliminate the problem,” he added.
This is not the first time Facebook has tried to use its network to address a social issue. Late last year it began a service called LifeLine that allows people to make contact with a suicide-prevention counsellor or to report someone through Facebook who they fear might be suicidal.
The company also introduced tools that year to discourage bullying and to allow people to report episodes of it.
At the same time, several Facebook initiatives have gotten negative reaction over the years, and longtime Facebook observers noted that there might be some people who do not support the idea of organ donation and would try to persuade others in their Facebook postings to pledge not to donate.
There are currently 114,000 people waiting for organ transplants, according to the federal Organ Procurement and Transplantation Network. Most of them – 92,000 – are waiting for kidney transplants, a procedure with a high rate of success.
But there is a vast shortage of organs to meet the need, with only 28,535 transplants performed last year. Between 6,000 and 7,000 patients have died in each of the past 13 years while waiting for organs. Because the growth in organ donations has not kept pace with the growth in needed transplants, the gap between supply and demand has been growing.
Donation rates have been increasing steadily, with 43 percent of those 18 or older designating themselves as organ donors last year, according to Donate Life America. Donation rates in 2010 ranged from seven percent in Texas to 76 percent in Alaska, according to the group.
Zettel, the chief executive of Donate Life California, predicted that Facebook’s move would lead to “an explosion of registrations.” BJ Fogg, who, as director of the Persuasive Technology Lab at Stanford University, studies how technology can change attitudes, said the prominence of organ donation on the Facebook site would “trigger people to make an important decision about whether to be an organ donor, a decision most people in the last year haven’t even considered.”