Thursday, August 20, 2015

A privacy-preserving market design intervention to avoid Tay Sachs disease

Scott Kominers draws my attention to a 1987 news note in JAMA, with a privacy-sensitive market design for keeping people's sensitive genetic information private.

Tay Sachs disease is a lethal recessive-gene disease: when two carriers of the relatively rare gene have a child, they risk having a child who will be born with the disease. Genetic screening offers a chance to alert potential marriage partners if they both carry the gene. But in some of the Jewish communities in which the gene is relatively more common, there was a reluctance to be tested, for fear of being stigmatized as a carrier of the disease. An organization called Dor Yeshorim was formed to offer the following service:

 "All those taking the blood test would be assigned a number, and their test results filed at the screening center by number alone; names would not be recorded. Nor would those being tested be informed of the results, thus eliminating the anxiety of stigmatization. When a match was proposed, the matchmaker would call the screening center, revealing only the prospective couple's numbers. The matchmaker would then be informed whether the proposed match would involve two Tay-Sachs carriers.

"If the match were not to involve two carriers, marriage plans could proceed. If both parties were identified as carriers, the matchmaker would be told only that the two families should contact the center to verify the couple's numbers. The families would then be informed that both of the children were carriers and referred to counseling. Thus, carriers would learn their status only if they were to be matched with other carriers. Then both families could report that the match had failed to come about for other reasons and could look for new matches.

 by Beverly Merz, "Matchmaking Scheme Solves Tay-Sachs Problem," JAMA Nov 20, 1987, 2636-7 (Medical News and Perspectives)

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