The Right Not to Know

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%.

These data demonstrate that support for a strong RNTK is soft; while autonomy and the RNTK may seem sacrosanct in isolation, forcing people to confront the tradeoffs inherent in real world cases changes many minds. This suggests that practical conceptions about the RNTK are less absolute than some of the recent literature might have us believe.

If views on the RNTK are less settled than one might think, and if people are open to considering tradeoffs between autonomy and beneficence, then it becomes important to rigorously examine what those tradeoffs might entail. This kind of analysis has thus far been absent from the debate. The focus on an autonomy-based RNTK has had the unfortunate effect of short-circuiting discussion of the topic. Specifically, the autonomy-dominated conversation has focused on the harms associated with not honoring individual preferences. That focus has not allowed for a comprehensive analysis of the harms and benefits of honoring or ignoring the RNTK. The reality is that both options will have potential negative consequences. Whichever direction is chosen, we will necessarily be making a mistake in one of two directions: unwanted disclosure, or lost opportunity for medical intervention.

In a forthcoming law review article, I explore these tradeoffs, pushing back against the vigorously held position that we must always honor the RNTK. In doing so, I ask three questions: 1) How many people genuinely wouldn’t want to know genetic information about themselves that could have a profound impact on morbidity or mortality? 2) If people were given genetic risk information that they would have preferred not to know, what is the magnitude of the harm they actually experience? 3) How many people undergoing genomic sequencing would erroneously or accidentally not receive potentially lifesaving information if we actively solicit patient preferences about knowing or not knowing?

In the end, I develop an argument for returning high value genetic information without asking about a preference not to know. I acknowledge that this is a controversial position, but one that seems important to explore, even in the face of an opposing majority view. Autonomy is a core principle of clinical ethics, but the rapid expansion of sequencing power is challenging conventional wisdom in uncomfortable ways, and I believe that we must rigorously reexamine of what appropriate standards of care look like in the era of genomic medicine.

Benjamin Berkman, J.D., M.P.H, is the Deputy Director of the Bioethics Core at the National Human Genome Research Institute, and a faculty member in the NIH Department of Bioethics.  

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  1. Were it me, I’d like to be spared of meaningless information & told only meaningful information.

    Which, of course, means that if I should have been given genetic information which would have predicted the disease I later developed in life.

    This is a conditional tense.