Crowdsourcing organ transplant ethics

 In Slate, an upbeat article about the ethical issues associated with deceased organ allocation and (before that) access to dialysis, and the benefits and difficulties with crowdsourcing the solutions.  

The Kidney Transplant Algorithm’s Surprising Lessons for Ethical A.I.  A more democratic approach to A.I. is messy, but it can work.  BY DAVID G. ROBINSON

This article is adapted from Voices in the Code: A Story About People, Their Values, and the Algorithm They Made, out Sept. 8 from Russell Sage Foundation Press.

" in the world of organ transplants, surgeons and data scientists have an unusual habit of being brutally honest about the human lives behind their work—of inviting others into the impossible choices their field confronts. For better and worse, the organ transplant system is itself a real-life laboratory of more inclusive, accountable techniques for building and using A.I.—approaches that are now being proposed in U.S. and EU legislation that could cover courtrooms, hiring, housing, and many other sensitive domains.

...

"Where did this culture of moral humility—one that’s now shaping the design of a high-stakes A.I. system—come from?

"Collaborative decision-making about hard ethical choices in kidney medicine began before the digital revolution. It began before there were many kidney transplants. "

After the development of dialysis there were..."just a handful of dialysis machines, ...Whom to save? Scribner and his team were inundated with pleas from dying patients and their doctors.

"Faced with this quandary, Scribner and his colleagues chose to do something extraordinary: They shared their moral burden with the Seattle community they served. Rather than pretending that their technical expertise gave them special moral standing, they chose to be morally modest, and to widen the circle. The doctors still decided who was medically eligible for dialysis. But then, they established a second committee, a group of seven laypeople chosen by the local medical society, who would make the non-medical decision of how to allocate the few available slots among the many eligible patients. The committee members were given some basic education about kidney medicine, but weren’t told how to make their moral choices.

“They Decide Who Lives, Who Dies” was the headline of a 1962 Life magazine article about this new group. Its members, who were anonymous, were photographed in shadow. A clerical collar can be seen on one. The lone woman of the group, a homemaker, clasps a pair of reading glasses in her folded hands. The article reported that the committee’s approach was based on “acceptance of the principle that all segments of society, not just the medical fraternity, should share the burden of choice as to which patients to treat and which ones to let die.”

"The Life story described some biases that played out on the committee—they favored male breadwinners who had children to support—and it triggered widespread revulsion. A pair of scholars wrote that the committee was judging people “in accordance with its own middle-class suburban value system: scouts, Sunday school, Red Cross. This rules out creative nonconformists … the Pacific Northwest is no place for a Henry David Thoreau with bad kidneys.” The original Life story never mentioned race, but later reporting suggested the committee had been biased in favor of white applicants. The committee only ran for a few years. Other dialysis facilities used different rationing strategies—including first-come, first-served—and in 1972 Congress passed an extraordinary law to provide dialysis at public expense through Medicare to all patients who needed it. That proved to be a humane, if extremely costly, escape route from the rationing problem that Scribner once faced.

"Along with all its faults, I think the Seattle committee also gave us much to admire. It was profoundly, even uncomfortably, honest about the hard choices at the center of kidney medicine. It refused to pretend that such choices were—or ever could be—entirely technical. And it tried, albeit clumsily, to democratize the values inside a complex, high-tech system. The Seattle physicians and their lay colleagues were rationing a scarce supply of dialysis treatments. But even after Congress provided dialysis for everyone, the shortage of transplantable kidneys was destined to spark similar questions, ones we still face today."

HT: Tom Riley