TJ Kasperbauer, PhD, a Post-Doctoral Fellow at the IU Center for Bioethics, and Peter H. Schwartz, MD, PhD, Director of the IU Center for Bioethics, published an article titled “Genetic Data Aren’t So Special: Causes and Implications of Reidentification” in the Sept-Oct 2020 issue of the Hastings Center Report. In the article, Kasperbauer and Schwartz compare the dangers of reidentification of genetic data to those stemming from re-identification of other sorts of data, such as health, financial, and consumer information. Many experts have assumed that there are special dangers from the possible re-identification of de-identified genetic data, but Kasperbauer and Schwartz argue that these dangers are not higher than for non-genetic data. One practical consequence is that special disclosures about the risks of re-identification do not need to be presented to patients or research participants consenting to share genetic data or biological samples. Instead, the healthcare system should find ways outside of informed consent documents to educate patients about the risks of data sharing, re-identification, and privacy violations for genetic and non-genetic information.
For the published version in the Hastings Center Report, click here.