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Adult adoptees and their use of direct‐to‐consumer genetic testing: Searching for family, searching for health
Author(s) -
Lee Heewon,
Vogel Rachel I.,
LeRoy Bonnie,
Zierhut Heather A.
Publication year - 2021
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1002/jgc4.1304
Subject(s) - demographics , affect (linguistics) , ethnic group , snowball sampling , medicine , young adult , family history , public health , genetic testing , genetic counseling , psychology , clinical psychology , family medicine , gerontology , demography , genetics , nursing , biology , communication , pathology , sociology , anthropology
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.