Concerns Mount over Privacy As Genetic Research Advances

Research in genetics has changed the way scientists view many disorders that befall patients. For example, investigators have taken giant steps in understanding the molecular basis of diseases such as cancer and cystic fibrosis. Genetic research also has radically revamped the understanding of afflictions--including manic-depression and obesity--that in the past were blamed on the infirmity and weak will of their sufferers. CONFIDENTIALITY CONSIDERED: Utah's Jeffrey Botkin, says his study on

Stephen Hoffert

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CONFIDENTIALITY CONSIDERED: Utah's Jeffrey Botkin, says his study on confidentiality in research points to "a definite need for discussion on how journals, investigators, and institutional review boards can develop consistent policies and practices that adequately protect the privacy of subjects in genetic research."

Although genes now dominate many explanations of disease, more familiar units of human life--such as families and ethnic groups--play a major role in research. These two groups provide researchers with relatively uniform DNA samples, greatly streamlining searches for culprit genes.

The growing trend to focus research efforts in genetics on various groups identifiable by ancestry has forced many investigators and research institutions to take a fresh look at standards and practices for assuring the confidentiality of research subjects. Jeffrey R. Botkin, a pediatrician at the University of Utah, recently completed a study examining methods and standards among investigators and journals in protecting the privacy and confidentially of ...

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