Key Ethics Term: Right Not to Know

Though we often talk about a patient’s right to be informed about the risks and benefits of treatment options or about prognosis, there is a correlative right not to be so informed (or not to know).

This right has become particularly prevalent in the field of genetics, where patients could come to know that they are at risk for a serious disease for which there is no effective treatment (e.g. Huntington’s disease). Under such circumstances, some patients may decide that they do not want to know their risk and respecting that choice may be both a matter of respecting autonomy and ensuring beneficence.

However, the existence of this right is contested. And even for those who agree that there is such a right, what that right entails is complicated by risk to the patient (e.g. some patients may ask not to know even when there are potentially effective treatments) and by risk to others (e.g. when genetic testing reveals genetic information that would affect family members).

For further reading…

  • Berkman and Hull (2014). The “Right Not to Know” in the Genomic Era: time to Break From Tradition? Am J Bioeth, 14(3):28-31.

  • Gilwa et al (2015) Institutional review board perspectives on obligations to disclose genetic incidental findings to research participants. Genetics in Medicine, Nov 2015.