Research in human genetics: the tension between doing no harm and personal autonomy

Abstract

The physician-patient relationship was governed for centuries by the ethical principle of beneficence and the physician's dedication to the principle of doing no harm. This structure shifted, however, to the principle of personal autonomy as medical and surgical knowledge expanded and patients, rather than physicians, became the locus of decision-making authority. In biomedical research in the United States, however, beneficence of the research professional remained dominant until a spectrum of doubtful research practices was made public in the 1970s and thereafter. Over the past three decades, state and federal governments have instituted regulations that provide increased protections for human research subjects, although research results are rarely shared with subjects because of the provisional nature of unconfirmed laboratory results. Now, however, genetics researchers and others suggest that subjects may well have an interest in present and future results, even though provisional. These issues are presently under discussion and may eventually open new possibilities for sharing research information with subjects who wish to be informed.