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April 10, 1996

Informed Consent for Genetic Research

Author Affiliations

Dana-Farber Cancer Institute Boston, Mass

JAMA. 1996;275(14):1085. doi:10.1001/jama.1996.03530380027020

To the Editor.  —For genetic research on previously stored tissue specimens of deceased patients, Dr Clayton et al1 recommend obtaining informed consent from relatives. The relatives who need to provide consent are not specified.The spouse of the decedent is usually considered the closest next of kin. However, those at risk for genetic traits are the blood relatives of the decedent, not the spouses. The interests of the spouse and the blood relatives might differ, particularly if no progeny are involved. Whose rights prevail if the spouse and blood relatives disagree? If a living spouse cannot be located, would consent from one blood relative suffice? To whom should genetic results be disclosed? Who will pay for the costs of obtaining reconsent? In addition to these issues, there are other questions of importance.2 How should investigators proceed while awaiting the answers?