By Benjamin E. Berkman, JD, MPH
While promising to eventually revolutionize medicine, 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 had a right not to know (“RNTK”) genetic information about him or herself. Prompted by evolving professional practice guidelines, the RNTK has become a highly controversial topic. 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.
In a recent paper published in Genetics in Medicine, my coauthors and I provide some data that illuminates this and other issues. Our survey of 800 IRB members and staff about their views on incidental findings demonstrates how malleable views on the RNTK can be. Respondents were first asked about the RNTK in the abstract: “Do research participants have a right not to know their own genetic information? In other words, would it be acceptable for them to choose not to receive any GIFs?” An overwhelming majority (96%) endorsed the right not-to-know. But when asked about a case where a specific patient has chosen not to receive clinically beneficial incidental findings, only 35% indicated that the individual’s RNTK should definitely be respected, and 28% said that they would probably honor the request not to know. Interestingly, the percentage of respondents who indicated that they do not support the RNTK increased from 2% at baseline to 26% when presented with the specific case. The percentage of people who are unsure similarly jumps, from 1% to 11%.