Dr. Joe at the bookofjoe -- the world's only blogging anesthesiologist -- has a couple of posts up this week about MatchingDonors.com, a site which makes an end-run around the calcified bureaucracy of the existing United Network for Organ Sharing by letting potential organ donors and recipients find each other online. MatchingDonors likens what they do to asking in a church or community group for volunteer donors, but doing so with a worldwide audience. With upwards of 60,000 patients in the United States alone waiting for an organ donation, MatchingDonors has the potential to accelerate the process of getting organs to those who need them. Unsurprisingly, its existence is troubling to those who believe the current model is the best way to ensure fair distribution of organs.
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MatchingDonors and similar groups which will inevitably follow could be, for the medical world, as unsettling as peer-to-peer music sharing has been to the RIAA. Not because it involves profits -- although Dr. Joe is fairly dismissive of the motives of UNOS officials -- but because it involves power. MatchingDonors removes the gatekeeper power from UNOS and the medical establishment, and puts the ability to find suitable donors and recipients into the hands of individuals. Such a transfer of power does not happen easily, and UNOS is putting up a fight.
Dr. Joe is having none of it:
Sure enough, yesterday's USA Today had a story in which UNOS' predictable stable of biomedical ethicists - in the O.R., we consider them basically roadblocks who, if in a jam, would abandon their stated precepts in a [transplanted] heartbeat - started in with their usual "ethical concerns," "fear abuses," exploit vulnerable people," "subvert the equitable allocation of donated organs," "undermine the public's trust" shibboleths and nonsense.
Hey, it's all about the wonderful, highly-paid executive jobs at UNOS and the burgeoning departments of biomedical ethics at universities nationwide, is what's behind these concerns.
Trust me, it's sure not about the patients who need transplants.
I'm not going to argue that he's wrong about UNOS -- he's in the field, and he'd know far better than I. I would suggest, however, that concerns about abuses of what is essentially a peer-to-peer organ-sharing network are not entirely unfounded. Distributed networks are very hard to control -- that's one of their strengths -- and preventing the illegal sale of organs (the chief ethical fear about the system) will be much more difficult in a world where Matching Donor-type networks are commonplace methods of linking organ donors and recipients. At the same time, end-to-end connections of individuals with a common interest is what the Internet does best. MatchingDonors is frightening to the transplant establishment precisely because the person-to-person model will almost certainly be significantly more effective at connecting organ donors and recipients.
The current system is clearly broken. From the backlog of recipients (where people die all too often before receiving a transplant), to the systemic racial bias, to the lack of effort on the part of UNOS to lobby for "implied" or "presumed consent" laws (making it much more difficult for the family of the deceased to prevent post-mortem donation), the organ transplant world is ready for something new. MatchingDonors.com may well be the necessary transformation -- but we should be clear-eyed about all aspects of its potential.
Having been the first person to receive a live donor organ transplant(Pres/St. Lukes Hosp, Denver 10/20/04) connected through www.matchingdonors.com I frind the actions of UNOS executives to be criminal. The same can be said of hospitals such as Buffalo General Hospital in Buffalo, NY which are now blacklisting patients seeking live organ donors via the internet. In the Buffalo case, Paul Cardinali, a 32 year old man is in dire need of a kidney transplant ASAP. He has 3 potential live donors through matchingdonors. The hospital is refusing to even begin testing the potential donors. The hospital establishment and transplant department will be held criminally accountable if anything happens to Mr. Cardinali. I will make sure the charges get filed for criminally negligent homicide. There is another woman in California in a similar situation at Stanford University Medical Center. Website live donor matches are both legal and ethical. UNOS should be put out of business immediately. They are a rogue organization engaging in racketeering.