Should results from genetic research be returned to research subjects and their biological relatives?

Stefan Eriksson

Uppsala University

Abstract. This paper addresses the question of whether to return information about disease and hereditary dispositions, resulting from research, including information that not only affects the research subjects but is also of interest to their biological relatives. An important prerequisite for a return is that results meet strong quality requirements. Moreover, the arguments in favor of a contact should outweigh those against it. When there is a moral demand to inform biological relatives, subjects themselves typically act as informants. If subjects are in doubt as to whether a contact is required, the investigators themselves must make a judgment. If they feel it is indeed necessary, they should try to strengthen subjects’ autonomy and encourage them to take responsibility. It is argued that this is neither a paternalistic line of action, nor does it undermine the autonomy of research subjects and their relatives.