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13 - Generational Failures of Law and Ethics

Rape, Mormon Orthodoxy, and the Revelatory Power of Ancestry DNA

from Part IV - Consumer Genetics and Identity

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 ethical and religious implications of consumer DNA testing are particularly fraught for deeply orthodox Mormons. Within the Latter-day Saint faith, the obligation to discover and build the relational structure of family across generations forms a core religious duty. Mormons have long fulfilled that duty through genealogical research, creating elaborate family group sheets and detailed pedigree charts. Their genealogical research then provided the foundation upon which for-profit companies like Ancestry.com began and continue to build.The fulfillment of religious duty through the biotechnology of DNA testing revealed a rape my mother suffered decades ago, a secret she considered sin. Across the decades, law failed my mother in so many ways.Although she chose anonymity and silence for 57 years, the relational nature of shared DNA and her granddaughter’s DNA test discounted my mother’s choice. Even if someone chooses anonymity for herself, unless all of her biological relatives do the same, she is always at risk of identification and publicity through shared DNA and genealogical databases like Ancestry.com. If law and ethics recognize an individual’s right to privacy and her claim to anonymity, how should it account for the relational nature of shared DNA that makes complete privacy, complete anonymity impossible?

Type
Chapter
Information
Consumer Genetic Technologies
Ethical and Legal Considerations
, pp. 173 - 185
Publisher: Cambridge University Press
Print publication year: 2021

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