Sickle cell screening policies as portent: how will the human genome project affect public sector genetic services?

Abstract

The Human Genome Project holds much promise for providing dramatic improvements in our understanding of and means to diagnose and treat many diseases. As this enormously important endeavor proceeds, research on ethical, legal, and social implications of this new science is being conducted to forecast problems and recommend policy option solutions to avoid what might otherwise become adverse consequences. Sickle cell screening is an example of a technology that was introduced in a manner that raised poignant issues. On the basis of sickle cell issues, we examined policy issues likely to occur as new genetic technologies are incorporated into medical practice. Discussion and development of a national consensus on the appropriate content and just delivery of public sector genetic services is vital; otherwise, the impact of Human Genome Project-derived technology may result in misadventures that amplify problems currently evident in newborn screening programs. New DNA-based diagnostic technologies and therapies will soon enter the stream of commerce. The recommendations offered here, while based on examination of sickle cell disease policies, are intended to address both current inequities as well as potential future issues related to stigmatization and distributive justice.