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Chapter 1 - Accessing Origins Information

The Implications of Direct-to-Consumer Genetic Testing for Donor-Conceived People and Formal Regulation in the United Kingdom

from Part I - ‘DIY’ Donor Linking: Issues and Implications

Published online by Cambridge University Press:  13 July 2023

By
Damian Adams ,
Marilyn Crawshaw ,
Leah Gilman  and
Lucy Frith
Edited by
Fiona Kelly ,
Deborah Dempsey  and
Adrienne Byrt
Fiona Kelly
Affiliation:
La Trobe University, Victoria
Deborah Dempsey
Affiliation:
Swinburne University of Technology, Victoria
Adrienne Byrt
Affiliation:
Swinburne University of Technology, Victoria
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Summary

Information on genetic relations, gamete donors and donor-related siblings, can now be located within two very different systems: ‘official’ regulatory systems; and emerging digital online systems, including direct-to-consumer genetic testing (DTCGT), ancestry sites and internet groups. The possibilities of finding genetic relatives through these online systems has risen dramatically in recent years, leading to claims that donor anonymity is dead regardless of which jurisdiction you live in. In this chapter, we explore how online systems have impacted on donor conception. We use UK examples to explore the social-cultural contexts, including the activism of donor-conceived people, which have shaped, and continue to shape, both systems. We consider the ethical, legal and social-emotional challenges for donor-conceived people in these new landscapes, especially in relation to their agency, as these different systems collide and interact, creating new spaces of sociality and challenges to existing power structures.

Keywords

DNA testingdonor conceived peoplegamete donorsdonor anonymitygeneticsregulationethicsonlinedigital technology
Type
Chapter
Information
Donor-Linked Families in the Digital Age
Relatedness and Regulation
 , pp. 15 - 32
Publisher: Cambridge University Press
Print publication year: 2023

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