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7 - The Myth of “Anonymous” Gamete Donation in the Age of Direct-to-Consumer Genetic Testing

from Part II - Privacy in the Age of Consumer Genetics

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

Although the United States has long had a history of allowing anonymous gamete donation, that “anonymity” does not actually exist, given the increasingly widespread use of DTC genetic testing. Over 15 million people have undergone DTC autosomal genetic tests, and. recent studies show that a genetic database covering only two percent of the population could match nearly anyone in that population, especially if they are of European-descent. In the US, assisted reproduction is accessed overwhelmingly by those of European-descent. Thus, a legal regime that allows “anonymous” donation is misleading those involved with donor gametes. Although there are passionate debates about the need to preserve anonymity to ensure that there are enough sperm and egg donors available for those who seek assisted reproduction, those arguments are moot due to the state of DTC testing and the language of “anonymous” donation misleads all of the parties involved with donor conception. Clinics are able to claim this in order to ensure a steady supply of gamete donors. This chapter addresses the legal and ethical quandaries that the facade of anonymous donation creates and suggests how to best resolve these issues with both public law and private governance strategies.

Type
Chapter
Information
Consumer Genetic Technologies
Ethical and Legal Considerations
, pp. 93 - 106
Publisher: Cambridge University Press
Print publication year: 2021

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