Document Type

Response or Comment

Publication Date

2009

Abstract

Lawmakers are stewards of social resources. A current debate-over screening newborns for genetic disorders-illuminates dilemmas of that stewardship that have particularly plagued bioethics. Recently in the Report, Mary Ann Baily and Thomas Murray told the story of little Ben Haygood. He died from MCADD, a genetic disorder that can make long fasting fatal. Screening at birth would have let doctors alert Ben's parents. "After Ben died," Baily and Murray wrote, "his father became a passionate advocate for expanding Mississippi's newborn screening program to add MCADD and other disorders." Soon, the Ben Haygood Comprehensive Newborn Screening Act increased the number of genetic disorders covered by the state's program from five to forty and provided teams to follow up positive tests. Is this a prudent and productive way to make public policy? Certainly it is understandable. Mr. Haywood knew that parents suffered and children died in ways newborn screening could prevent. He acted on his knowledge. The legislature knew that suffering and death could be prevented. It acted on its knowledge. Was it supposed to let Tiny Tim die?

Comments

Reprinted with the permission of the Hastings Center Report and Wiley-Blackwell.


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