Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Comment
. 2020 Sep;50(5):30-39.
doi: 10.1002/hast.1183.

Genetic Data Aren't So Special: Causes and Implications of Reidentification

T J Kasperbauer, Peter H Schwartz
Free article
Comment

Genetic Data Aren't So Special: Causes and Implications of Reidentification

T J Kasperbauer et al. Hastings Cent Rep. 2020 Sep.
Free article

Abstract

Genetic information is widely thought to pose unique risks of reidentifying individuals. Genetic data reveals a great deal about who we are and, the standard view holds, should consequently be treated differently from other types of data. Contrary to this view, we argue that the dangers of reidentification for genetic and nongenetic data-including health, financial, and consumer information-are more similar than has been recognized. Before different requirements are imposed around sharing genetic information, proponents of the standard view must show that they are in fact necessary. We further argue that the similarities between genetic and nongenetic information have important implications for communicating risks during consent for health care and research. While patients and research participants need to be more aware of pervasive data-sharing practices, consent forms are the wrong place to provide this education. Instead, health systems should engage with patients throughout patient care to educate them about data-sharing practices.

Keywords: genetic data; genetic essentialism; identifiability; informed consent; privacy.

PubMed Disclaimer

Comment on

References

Notes

    1. “Federal Policy for the Protection of Human Subjects,” Fed. Reg. (January 19, 2017), https://www.federalregister.gov/documents/2017/01/19/2017-01058/federal-.... For the changes that were proposed, see “Federal Policy for the Protection of Human Subjects,” Fed. Reg. (September 15, 2015), https://www.federalregister.gov/documents/2015/09/08/2015-21756/federal-....
    1. “Analysis of Public Comments on the Common Rule NPRM,” Council on Governmental Relations, 2016, https://www.cogr.edu/COGR/files/ccLibraryFiles/Filename/000000000346/Ana....
    1. A. P. Schwab et al., “Genomic Privacy,” Clinical Chemistry 64, no. 12 (2018): 1696-1703, at 1702.
    1. Office of Science Policy, “NIH Guidance on Consent for Future Research Use and Broad Sharing of Human Genomic and Phenotypic Data Subject to the NIH Genomic Data Sharing Policy,” National Institutes of Health, 2018, https://osp.od.nih.gov/wp-content/uploads/NIH_Guidance_on_Elements_of_Co....
    1. The full consent form is available from the authors.

Publication types