Journal article
Adoptees’ views and experiences of direct-to-consumer (DTC) genomic testing: an exploratory interview study from the UK
- Abstract:
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Direct-to-consumer (DTC) genomic testing for ancestry and health may appeal to adoptees looking to fill gaps in their family information. There are only a handful of published studies on adoptees’ views and experiences of DTC testing and none of these is from the UK. The recent UK House of Commons Science and Technology Committee report (GB Parliament, House of Commons 2021) did not address the gains or challenges for adopted people specifically, although the Committee did consider that robust evidence of opportunities or risks for any user of a DTC testing kit is limited. In this study presented here, semi-structured interviews were conducted with ten UK adult adoptees recruited via social media. Reflexive thematic analysis (Braun and Clarke 2006, 2019) of the interview transcripts identified three main themes: Decisional influencers of longing, uncertainty and normalisation of DNA kit use; Informational drivers to gain clarity but avoid new worrisome information; and talk around Negotiating Visibility to birth family and commercial third parties. A further theme of Meaning Making related to adoptees’ views of testing outcomes as bringing feelings of resolution or discordance. This study identified many challenging deliberations for adoptees in evaluating whether to take a DTC test and what to do when their results were returned. Additionally, adoptees’ consideration of data privacy issues appears hampered by already having shared identifying information about themselves in their wider adoptee search. Further research is encouraged.
- Publication status:
- Published
- Peer review status:
- Peer reviewed
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- Files:
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(Preview, Version of record, pdf, 675.0KB, Terms of use)
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- Publisher copy:
- 10.1007/s12687-022-00622-y
Authors
- Publisher:
- Springer
- Journal:
- Journal of Community Genetics More from this journal
- Volume:
- 14
- Issue:
- 2
- Pages:
- 149–162
- Publication date:
- 2022-11-29
- Acceptance date:
- 2022-11-15
- DOI:
- EISSN:
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1868-6001
- ISSN:
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1868-310X
- Language:
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English
- Keywords:
- Pubs id:
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1333054
- Local pid:
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pubs:1333054
- Deposit date:
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2023-03-16
Terms of use
- Copyright holder:
- Kay and Taverner
- Copyright date:
- 2022
- Rights statement:
- © The Author(s) 2022. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.
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