Genetic Privacy Bill Could Harm Research

Article excerpt

A bill designed to protect the privacy of genetic information of individual citizens was introduced in the U.S. Senate last spring. Sponsored by Sens. Pete Domenici, R-N.M., and Paul Simon, D-Ill., S 1898 or the "Genetic Confidentiality and Nondiscrimination Act of 1996," addresses an appropriate concern. But it fails to recognize that its provisions would have an overwhelmingly detrimental effect on genetic research.

Genetic research has progressed at an astonishing pace during the past two decades in a largely unregulated environment. It holds great promise in diagnosis and treatment of a variety of genetically related diseases. Included are inherited disorders for which specific genetic explanations have been or are being identified. These include fibrocystic disease, sickle cell disease, Alzheimer's disease, diabetes, leukemia and cancer.

Although many people would benefit from this progress, only a very few would be harmed by breaks in confidentiality of genetic information. The Domenici-Simon bill seeks to protect these very few while creating a serous hazard to benefits that would flow to the very many. The prologue to the bill focuses entirely on potential negative aspects of obtaining human genetic information. It fails to point out the many benefits of genetic studies. The bill, which exceeds the U.S. Constitution in length, attempts to micromanage procedures for confidentiality and disclosure, records and tissue-sample storage. The bill would create a morass of legal interpretation. Provisions of the bill - some clearly specified and some that are likely to arise from court interpretations - would essentially bring human genetic research to a halt in this country because: (1) High administrative expenses will be caused by the need to acquire consent of source individuals for any studies involving genetic information. These will restrict study of archival specimens on which much progress in genetic understanding of cancer has been based to date. (2) The bill would create a daunting potential for liability for researchers. Strong penalties are specified for studies of specimens that currently can be studied without permission of the donors; these are acquired by sampling of blood, other body fluids or by surgical operations. In the vast majority of studies, the information obtained can be safeguarded by conventions already in place. I know of no harm done to individuals by inappropriate release of genetic information in the many studies with which I have some familiarity. (3) Expenses of research would be increased by an inappropriate requirement of informed consent for study of archival specimens, and the broad rights to genetic and psychological counseling specified by the bill. …