Direct-to-consumer genetic testing and the changing landscape of gamete donor conception: key issues for practitioners and stakeholders.
Autor: | Gilman L; Department of Sociological Studies, University of Sheffield, UK., Redhead C; Centre for Social Ethics and Policy, University of Manchester, UK., Hudson N; Centre for Reproduction Research - De Montfort, University, UK., Fox M; Law School, University of Liverpool, UK., Nordqvist P; Department of Sociology, University of Manchester, UK., MacCallum F; Department of Psychology, University of Warwick, UK., Kirkman-Brown J; Institute of Metabolism and Systems Research, University of Birmingham, UK., Frith L; Centre for Social Ethics and Policy, University of Manchester, UK.. Electronic address: Lucy.frith@manchester.ac.uk. |
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Jazyk: | angličtina |
Zdroj: | Reproductive biomedicine online [Reprod Biomed Online] 2024 Jan; Vol. 48 (1), pp. 103421. Date of Electronic Publication: 2023 Sep 24. |
DOI: | 10.1016/j.rbmo.2023.103421 |
Abstrakt: | Research Question: What effect does direct-to-consumer genetic testing (DTCGT) have on information finding and sharing in relation to gamete donor conception? Design: This study used in-depth qualitative interviews with parents through donor conception, donors, the relatives of donors and donor-conceived people who have used, or considered using, DTCGT. Interviews were conducted between September 2021 and February 2023. Sixty people defined themselves as having been affected by donor conception and DTCGT. Fifty-seven of these were resident in the UK at the time of interview. The final sample included 19 (spermatozoa, egg or embryo) donors, 25 donor-conceived people, 20 parents through donor conception and two relatives of donors. Five participants occupied more than one of these roles. Results: The rise of DTCGT is affecting how information about donor conception is managed: it shifts patterns of knowledge about donor conception; increases flexibility regarding the age of access to information about donor relatives; can lead to a growing role for non-professionals, including wider family members, in gatekeeping information about donor conception; accentuates the effect of donor conception for donors' and the relatives of donor-conceived people; and shapes, and is shaped, by the formal regulatory donor information management systems. Conclusion: Fertility professionals should inform people using, or considering, donor conception, or (potential) donors, about the different ways DTCGT can affect sharing information about donor conception. Support is needed for those affected by these changes. (Copyright © 2023 The Author(s). Published by Elsevier Ltd.. All rights reserved.) |
Databáze: | MEDLINE |
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