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4 - Direct-to-Consumer Genomics and Personal Health Data

from Part I - Consumer Genetic Technologies: Rights, Liabilities, and Other Obligations

Published online by Cambridge University Press:  27 August 2021

I. Glenn Cohen
Affiliation:
Harvard Law School, Massachusetts
Nita A. Farahany
Affiliation:
Duke University School of Law
Henry T. Greely
Affiliation:
Stanford University School of Law
Carmel Shachar
Affiliation:
Harvard Law School, Massachusetts
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Summary

The mishandling of personal data by firms like Facebook, Yahoo!, Macy’s and Target has given rise to heightened public concern regarding consumer data privacy and protection, particularly when genetic and health information are implicated. Responding to these concerns, DTC genetic testing services such as Ancestry.com have publicly stated that “You always maintain ownership of your data.” These DTC services thus join a growing chorus calling for the recognition of personal property rights (ownership) in individual health data. But recognizing property in genetic data would represent a significant departure from current U.S. law and give individuals powerful rights to control, and exclude others from using, information that has significant value for biomedical research and public health monitoring. And in the context of DTC genetic testing, property rights in resulting data are largely unnecessary, as the use of such data is almost always covered by binding contractual arrangements that can limit undesired use and dissemination. Accordingly, this chapter argues that, given existing contractual, regulatory and liability regimes, data propertization is unnecessary in the context of DTC genomic testing, and should be avoided in the broader healthcare context as well.

Type
Chapter
Information
Consumer Genetic Technologies
Ethical and Legal Considerations
, pp. 51 - 64
Publisher: Cambridge University Press
Print publication year: 2021

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