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15 - Losing Our Minds?

Direct-to-Consumer Genetic Testing and Alzheimer’s Disease

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

There is a deep tension at the heart of modern genomics between the idea that science has now proven that there is only one race, the human race versus an enduring concern with genetic variation that might correlate with racial and ethnic categories. This tension shapes how we conceptualize the nature of race, approach problems of health disparities, and formulate related regulatory directives. Recently, this tension has become manifest in the shift from “personalized” to “precision” medicine and the inauguration of the massive “All of Us” initiative from the NIH aiming to enroll one million people into a genomic data base. This chapter will explore this shift and consider the broader ethical, legal, and social implications of reintroducing race (now as a “subpopulation”) at the forefront of biomedical advancement. In the move from “personal” to “precision” medicine, race is being hard-wired into massive data bases as a basic category for structuring biomedical research and practice. Such practices run the risk of reinvigorating dangerous and inaccurate conceptions of race as biological in a manner that could both undermine attempts to address persistent race-based health disparities and fuel pernicious racist ideologies.

Type
Chapter
Information
Consumer Genetic Technologies
Ethical and Legal Considerations
, pp. 198 - 210
Publisher: Cambridge University Press
Print publication year: 2021

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