Three decades of genetic privacy: a metaphoric journey

• Published in: Human molecular genetics Vol. 30; no. R2; pp. R156 - R160
• Main Authors: Knoppers, Bartha Maria, Beauvais, Michael J S
• Format: Journal Article
• Language: English
• Published: England Oxford University Press 01.10.2021
• Subjects: Ethics, Clinical; Genetic Privacy - ethics; Genetic Privacy - trends; Human Genome Project; Humanities; Humans; Invited Review; Ownership
• ISSN: 0964-6906; 1460-2083; 1460-2083
• DOI: 10.1093/hmg/ddab164

Debates surrounding genetic privacy have taken on different forms over the past 30 years. Taking genetic privacy to mean an interest that individuals, families, or even communities have with respect to genetic information, we examine the metaphors used in these debates to chronicle the development of genetic privacy. In 1990–2000, we examine claims for ownership and of ‘humanity’ spurred by the launch of the Human Genome Project and related endeavors. In 2000–2010, we analyze the interface of law and ethics with research infrastructures such as biobanks, for which notions of citizenship and ‘public goods’ were central. In 2010–2020, we detail the relational turn of genetic privacy in response of large international research consortia and big data. Although each decade had its leading conceptions of genetic privacy, the subject is neither strictly chronological nor static. We conclude with reflections on the nature of genetic privacy and the necessity to bring together the unique and private genetic self with the human other.