Drawing a blank: Contract terms in direct-to-consumer genetic testing for family tracing after adoption or out-of-home care
Purpose Increasingly, people separated from biological family through adoption or out-of-home care (OOHC) are using direct-to-consumer (DTC) DNA testing and genetic genealogy websites to find family. This is the first study to examine the clickwrap contracts applying to this population. Methods We i...
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| Published in: | Adoption & fostering Vol. 49; no. 4; pp. 421 - 440 |
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| Main Authors: | , , |
| Format: | Journal Article |
| Language: | English |
| Published: |
London, England
SAGE Publications
01.12.2025
British Association for Adoption & Fostering |
| Subjects: | |
| ISSN: | 0308-5759, 1740-469X |
| Online Access: | Get full text |
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| Summary: | Purpose
Increasingly, people separated from biological family through adoption or out-of-home care (OOHC) are using direct-to-consumer (DTC) DNA testing and genetic genealogy websites to find family. This is the first study to examine the clickwrap contracts applying to this population.
Methods
We identified 17 companies providing DTC DNA or genetic genealogy services for family tracing to users in Australia. We used NVivo software to analyse their terms and conditions.
Results
Despite the growing use of DNA services by people affected by adoption or OOHC, the platforms’ contracts rarely referred to this population. Risks that contracts canvassed, such as unexpected findings, were not tailored to these users. Links to support services were insufficient. Privacy protections varied.
Conclusion
DTC DNA companies and genetic genealogy platforms should directly address their use by people seeking family after adoption or OOHC. Greater attention should be paid to the potential outcomes, including negative outcomes, of testing for this purpose and the role of third-party services, such as genetic genealogists and volunteer ‘search angels’, in supporting users. People using DTC DNA testing and genetic genealogy platforms after an experience of adoption or OOHC should weigh up the platforms’ features against their privacy needs and decisions to disclose information in search of their biological relatives.
Plain language summary
People who were adopted or in out-of-home care, or family members who lost contact with them, often use DNA testing to try to find each other. They can use a DNA test purchased online or post their DNA data and other information on ‘genetic genealogy’ websites. When they do this, certain terms and conditions apply to them. These terms and conditions are decided by the DNA companies. They set out what rights the company or website has and what rights its users have. We wanted to find out whether the terms and conditions were appropriate for people searching for family after having experienced adoption or out-of-home care. We collected information about the terms and conditions of 17 companies selling DNA tests or running genetic genealogy websites. We considered what issues might arise for the people using these services to look for family after adoption or out-of-home care.
We found that companies selling DNA tests, or running genetic genealogy platforms, almost never mentioned people who had experienced adoption or out-of-home care. Their terms and conditions did not include information that would be very relevant to these people, such as details of support services and warnings about how distressing the consequences of searching and finding (or not finding) family might be. Nor did they mention the role of third-party genetic genealogy professionals and ‘search angels’. The ways that companies protect people’s privacy varied.
We suggest that companies providing DNA testing and genetic genealogy websites should provide clearer information about things that are important to people who are using the services to find family after adoption or out-of-home care. They should say more about what the specific risks might be for these people and should also address the role of third-party searchers. Users should think about how they might both protect and share their personal information to suit their own needs. |
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| Bibliography: | ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 14 |
| ISSN: | 0308-5759 1740-469X |
| DOI: | 10.1177/03085759251383975 |