Work

Drawing a blank: Contract terms in direct-to-consumer genetic testing for family tracing after adoption or out-of-home care

Year: 2025
Type: article
Abstract: 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.
Language: English
Subfield: Safety Research
Open Access status: hybrid
Estimated APC paid: $3,650
OpenAlex ID: W4415747079
FWCI: 1.09
Cites: 20
Cited by: 1
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