“Reexamining the Right Not to Know Genetic Information”
While promising to eventually revolutionize medical research and practice, the capacity to cheaply and quickly generate an individual's entire genome has not been without controversy. Producing information on this scale seems to violate some of the accepted norms governing how to practice medicine, norms that evolved during the early years of genetic testing when a targeted paradigm dominated. One of these widely accepted norms was that an individual has a right not to know genetic information about him or herself. Prompted by evolving professional practice guidelines, the right not to know has become a highly controversial topic, particularly in the context of research utilizing genomic sequencing. The medical community and bioethicists are actively engaged in a contentious debate about the extent to which individual choice should play a role (if at all) in determining which clinically significant findings are returned. This talk will explore the extent to which it is legally and ethically necessary to respect the so-called right not to know genetic information about oneself. Challenging the majority view that the right not to know is sacrosanct, the speaker will push back against that vigorously held (although not always rigorously defended) position, in defense of the idea that we should abandon the notion of a strong right not to know. Drawing on the fields of law, philosophy and social science, he will provide an extended argument in support of a default for returning high value genetic information without asking about a preference not to know. He will conclude by providing some recommendations about how best to balance individual autonomy and professional beneficence as the field of genomic medicine continues to evolve.