Impacts of personal DNA ancestry testing
Autor: | Caryn Kseniya Rubanovich, Cinnamon S. Bloss, Jennifer K. Wagner, Riley Taitingfong, Nicholas J. Schork, Ondrej Libiger, Cynthia Triplett |
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Jazyk: | angličtina |
Rok vydání: | 2020 |
Předmět: |
medicine.medical_specialty
Race Epidemiology Genetic genealogy media_common.quotation_subject Ethnic group Genetic ancestry Personal genetic information 03 medical and health sciences Race (biology) Direct-to-consumer testing 0302 clinical medicine Ethnicity Genetics Medicine Genetics (clinical) media_common 0303 health sciences business.industry Public health 030305 genetics & heredity Public Health Environmental and Occupational Health Test (assessment) 030220 oncology & carcinogenesis Personal identity Original Article Personalized medicine business Demography |
Zdroj: | J Community Genet Journal of community genetics, vol 12, iss 1 |
Popis: | Consumer uptake of direct-to-consumer (DTC) DNA ancestry testing is accelerating, yet few empirical studies have examined test impacts on recipients despite the DTC ancestry industry being two decades old. Participants in a longitudinal cohort study of response to health-related DTC genomic testing also received personal DNA ancestry testing at no additional cost. Baseline survey data from the primary study were analyzed together with responses to an additional follow-up survey focused on the response to ancestry results. Ancestry results were generated for 3466 individuals. Of those, 1317 accessed their results, and 322 individuals completed an ancestry response survey, in other words, approximately one in ten who received ancestry testing responded to the survey. Self-reported race/ethnicity was predictive of those most likely to view their results. While 46% of survey responders (N = 147) reported their ancestry results as surprising or unexpected, less than 1% (N = 3) were distressed by them. Importantly, however, 21% (N = 67) reported that their results reshaped their personal identity. Most (81%; N = 260) planned to share results with family, and 12% (N = 39) intended to share results with a healthcare provider. Many (61%; N = 196) reported test benefits (e.g., health insights), while 12% (N = 38) reported negative aspects (e.g., lack of utility). Over half (N = 162) reported being more likely to have other genetic tests in the future. DNA ancestry testing affected individuals with respect to personal identity, intentions to share genetic information with family and healthcare providers, and the likelihood to engage with other genetic tests in the future. These findings have implications for medical care and research, specifically, provider readiness to engage with genetic ancestry information. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s12687-020-00481-5) contains supplementary material, which is available to authorized users. |
Databáze: | OpenAIRE |
Externí odkaz: |