And yet, more than a decade after the first organ swap in the United States, the transplant world remains disjointed, with competing private registries operating with little government oversight or regulation. The federal government started a paired exchange pilot project in late 2010, but it lags far behind nonprofits like the National Kidney Registry in making successful matches. Whether the disparate groups will join forces is uncertain. But the continuing fragmentation may be preventing potential transplant matches. And it means that a number of sensitive ethical concerns, like ensuring that kidneys are allocated according to universally accepted priorities, could go unsettled for years. “It’d be best if we could have a master registry,” said Katrina A. Bramstedt, a transplant ethicist and co-author of “The Organ Donor Experience: Good Samaritans and the Meaning of Altruism.” “But there are so many little kingdoms in the transplant world, and I don’t know that we’ll ever break away from that.” Registry leaders regularly call for a unified system even as they expand their own domains. Some are national in scope, others are regional, and some exist within a single hospital. “Unfortunately, I’m part of the problem, and I regret that,” said Dr. Michael A. Rees of the University of Toledo Medical Center, whose registry, the Alliance for Paired Donation, put together the first non-simultaneous kidney chain. “Dealing with the egos of transplant surgeons — and I’m one of them, and we all think we have the right way — is like herding cats. It’s such a solvable problem. We just need to work as a single entity.” In late March, a consortium of medical societies plans to hold a “consensus conference” near Washington to begin the search for common principles, and perhaps a common structure. “Organs should be seen as a national resource,” said the meeting’s organizer, Dr. Sandy Feng, a transplant surgeon at the University of California, San Francisco, medical center. “And so we should look for agreed-upon principles to guide practice.” The conference agenda includes discussion about whether there should be a single registry or whether multiple networks might work more effectively because of the logistical challenges posed by chains, Dr. Feng said. If there are going to be several registries, she said, they should abide by the same policies about how organs are distributed. For example, should more weight be given to making difficult matches for recipients who are particularly prone to rejection, or to achieving as many transplants as possible? Should a patient’s health status or age or time on the federal transplant waiting list be considered? The answers now vary from registry to registry. “This is organ allocation,” said Dr. Dorry L. Segev, a transplant surgeon at Johns Hopkins Hospital, which has a registry that caters to hard-to-match patients. “They’re deciding who lives and who dies.” With black-market organ brokers and Internet matching in the headlines, pioneers in kidney-paired exchange recognize that they may be one misplaced shipment or medical mishap away from deeper scrutiny. But they also continue to stretch boundaries. Garet Hil, founder of the National Kidney Registry, which is based on Long Island, N.Y., said he hoped to attempt a transoceanic swap some day soon. Others have discussed starting chains with deceased donor kidneys, adding magnitudes of logistical complexity. “It is a little bit like the Wild West,” said Dr. Robert A. Montgomery, another transplant specialist at Hopkins. “There has to be some regulation, and it has to be fair, because if people don’t think it’s fair, they’re not going to donate organs.”
