Respect for patient autonomy has served as the dominant ethical principle of genetic counselling, but as we move into a genomic era, it is time to actively re-examine the role that this principle plays in genetic counselling practice. In this paper, we argue that the field of genetic counselling should move away from its emphasis on patient autonomy and toward the incorporation of a more balanced set of principles that allows counsellors to offer clear guidance about how best to obtain (...) or use genetic information. We begin with a brief history of how respect for patient autonomy gained such emphasis in the field and how it has taken on various manifestations over time, including the problematic concept of nondirectiveness. After acknowledging the field's preliminary move away from nondirectiveness, we turn to a series of arguments about why the continued dominance of patient autonomy has become untenable given the arrival of the genomic era. To conclude, we describe how a more complete set of bioethical principles can be adapted and used by genetic counsellors to strengthen their practice without undermining patient autonomy. (shrink)

The Belmont Report has had an enormous influence on the ethics of biomedical research over the last several decades. It has served as a philosophical foundation for federal regulations governing human subjects research, and its principles are well known to individuals across the research enterprise. Given the outsized influence Belmont has enjoyed as a core document in bioethics, it is worth reminding ourselves of the historical context in which it came to be. In this article, we examine the societal forces (...) that helped bring about the Belmont Report and that shaped its conception of ethical research. In turn, we set the stage for discussions on whether Belmont remains applicable as the research enterprise... (shrink)