Literature DB >> 32789669

Impacts of personal DNA ancestry testing.

Caryn Kseniya Rubanovich1, Riley Taitingfong2, Cynthia Triplett3, Ondrej Libiger4, Nicholas J Schork5,6, Jennifer K Wagner7, Cinnamon S Bloss8.   

Abstract

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.

Entities:  

Keywords:  Direct-to-consumer testing; Ethnicity; Genetic ancestry; Personal genetic information; Race

Year:  2020        PMID: 32789669     DOI: 10.1007/s12687-020-00481-5

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  47 in total

1.  Genetics. The science and business of genetic ancestry testing.

Authors:  Deborah A Bolnick; Duana Fullwiley; Troy Duster; Richard S Cooper; Joan H Fujimura; Jonathan Kahn; Jay S Kaufman; Jonathan Marks; Ann Morning; Alondra Nelson; Pilar Ossorio; Jenny Reardon; Susan M Reverby; Kimberly TallBear
Journal:  Science       Date:  2007-10-19       Impact factor: 47.728

2.  Anticipated versus actual emotional reactions to disclosure of results of genetic tests for cancer susceptibility: findings from p53 and BRCA1 testing programs.

Authors:  M Dorval; A F Patenaude; K A Schneider; S A Kieffer; L DiGianni; K J Kalkbrenner; J I Bromberg; L A Basili; K Calzone; J Stopfer; B L Weber; J E Garber
Journal:  J Clin Oncol       Date:  2000-05       Impact factor: 44.544

3.  Psychological studies in Huntington's disease: making up the balance.

Authors:  M Duisterhof; R W Trijsburg; M F Niermeijer; R A Roos; A Tibben
Journal:  J Med Genet       Date:  2001-12       Impact factor: 6.318

Review 4.  Identity and genetic ancestry tracing.

Authors:  Carl Elliott; Paul Brodwin
Journal:  BMJ       Date:  2002-12-21

5.  Effect of direct-to-consumer genomewide profiling to assess disease risk.

Authors:  Cinnamon S Bloss; Nicholas J Schork; Eric J Topol
Journal:  N Engl J Med       Date:  2011-01-12       Impact factor: 91.245

6.  Case Study on Ancestry Estimation in an Alaskan Native Family: Identity and Safeguards Against Reductionism.

Authors:  Alyssa C Bader; Ripan S Malhi
Journal:  Hum Biol       Date:  2015-10       Impact factor: 0.553

7.  Barriers and Strategies Related to Qualitative Research on Genetic Ancestry Testing in Indigenous Communities.

Authors:  Jessica W Blanchard; Gloria Tallbull; Chantelle Wolpert; Jill Powell; Morris W Foster; Charmaine Royal
Journal:  J Empir Res Hum Res Ethics       Date:  2017-04-23       Impact factor: 1.742

8.  Consumer perceptions of direct-to-consumer personalized genomic risk assessments.

Authors:  Cinnamon S Bloss; Laura Ornowski; Elana Silver; Michele Cargill; Vance Vanier; Nicholas J Schork; Eric J Topol
Journal:  Genet Med       Date:  2010-09       Impact factor: 8.822

9.  A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.

Authors:  Ellen W Clayton; Colin M Halverson; Nila A Sathe; Bradley A Malin
Journal:  PLoS One       Date:  2018-10-31       Impact factor: 3.240

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  3 in total

1.  Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services.

Authors:  Christi J Guerrini; Jill O Robinson; Cinnamon C Bloss; Whitney Bash Brooks; Stephanie M Fullerton; Brianne Kirkpatrick; Sandra Soo-Jin Lee; Mary Majumder; Stacey Pereira; Olivia Schuman; Amy L McGuire
Journal:  Am J Hum Genet       Date:  2022-02-24       Impact factor: 11.043

2.  Direct-to-consumer genetic testing: Prospective users' attitudes toward information about ancestry and biological relationships.

Authors:  James W Hazel; Catherine Hammack-Aviran; Kathleen M Brelsford; Bradley A Malin; Laura M Beskow; Ellen Wright Clayton
Journal:  PLoS One       Date:  2021-11-29       Impact factor: 3.240

3.  Remembering St. Louis individual-structural violence and acute bacterial infections in a historical anatomical collection.

Authors:  Rita M Austin; Molly Zuckerman; Tanvi P Honap; Hedwig Lee; Geoff K Ward; Christina Warinner; Krithivasan Sankaranarayanan; Courtney A Hofman
Journal:  Commun Biol       Date:  2022-10-03
  3 in total

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