Adult Adoptees and Their Use of Direct-To-Consumer Genetic Testing: Searching for Family, Searching for Health

Heewon Lee 1 2, Rachel I Vogel 3, Bonnie LeRoy 1, Heather A Zierhut 1

Affiliations

PMID: 32602181
DOI: 10.1002/jgc4.1304

Abstract

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.

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