Adult adoptees and their use of direct-to-consumer genetic testing: Searching for family, searching for health

Heewon Lee, Rachel I. Vogel, Bonnie LeRoy, Heather A. Zierhut

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


Use of direct-to-consumer genetic testing (DTC-GT) is rapidly growing in the United States. Yet little is known about how specific populations like domestic and intercountry adoptees use DTC-GT. Adoptees often have little to no biological family history, which may affect how they use DTC-GT. This study aimed to examine adult adoptees' motivations to pursue DTC-GT, experiences completing a test, and reasons for not completing one. An online survey consisting of 41 closed-ended questions was distributed to domestic and intercountry adult adoptees in a snowball convenience method addressing seven areas: (a) demographics and adoption experience, (b) family health history, (c) familiarity with DTC-GT, (d) actual DTC-GT experience, (e) hypothetical DTC-GT experience, (f) health results, and (g) satisfaction with DTC-GT. Descriptive statistics were performed on participant demographics and adoption characteristics, and chi-squared and Fisher's exact tests compared demographics and adoption characteristics by familiarity with DTC-GT and completion of DTC-GT. A total of 117 adoptees met criteria and completed the survey. Adoptees were motivated to use DTC-GT to search for biological family (83.0%), verify race and ethnicity (72.3%), and find out where ancestors came from (66.0%). Most participants completed DTC-GT (80.3%); completion was significantly associated with searching for biological relatives (p < 0.01) and with older age (p = 0.05). For those who received health information (59.6%), 44.4% of participants reported talking with a health provider. Adoptees are using DTC-GT to search for biological relatives, confirm their ethnicity and ancestry, and gain information about their health. Genetic counselors and health professionals should be prepared to address DTC-GT with adoptees as nearly half discussed their results with providers; findings from this study provide insight into how this unique population uses DTC-GT, and the possibility of patient-centered, tailored care for adopted patients who do not have family health history.

Original languageEnglish (US)
Pages (from-to)144-157
Number of pages14
JournalJournal of Genetic Counseling
Issue number1
StatePublished - Feb 2021

Bibliographical note

Publisher Copyright:
© 2020 National Society of Genetic Counselors

Copyright 2021 Elsevier B.V., All rights reserved.


  • adoptee
  • direct-to-consumer genetic testing (DTC-GT)
  • disparities
  • diversity
  • domestic
  • family history
  • genetic counseling
  • genetic testing
  • intercountry
  • underrepresented populations

PubMed: MeSH publication types

  • Journal Article

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