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

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.

Adoptees’ views and experiences of direct-to-consumer (DTC) genomic testing: an exploratory interview study from the UK

“…UK adoptees did not describe seeking information for these types of decisions. The sample in this UK study is older (mean age 56.3) than for previous studies (Baptista et al 2016: mean aged 44;Lee et al 2021: mean age 41.6%; Strong et al 2017: 70.6% aged < 40 3 ). Therefore, participants were less likely to be using the information for such things as reproductive decision-making.…”

“…This finding also suggests satisfaction scores could be misleading when trying to evaluate views and experiences on genetic technologies that are not well understood by the general public. Lee et al (2021) found that satisfaction levels were lower regarding health information than for ancestry results. In contrast, this UK study did not find disappointment expressed in relation to health information.…”

Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions

“…As one user mentioned in a post: Third, Ancestral Origin and Kinship/Feelings were the two most frequently discussed themes in these two subreddits, but kinship was a more prominent topic and was accompanied by a wider array of emotions. Some people sought to find new relatives, which is consistent with the growing body of literature that focuses particularly on people who were adopted [52] or who were conceived using gamete donation [53]. That interest in uncovering these relationships is driven in part by a desire for information about health history [54] or even identity is particularly intriguing since, until recently, the norm in the law in this country had been severing these connections [55].…”

Exploratory content analysis of direct-to-consumer pet genomics: What is being marketed and what are consumers saying?

“…Their study found that social influence impacted breed popularity more than health considerations, with inherited health conditions being secondary in a pet owner's decision to acquire a particular breed of dog. The notion of breed identity may also parallel human use of DTC-GT results to establish heritage (e.g., [36]).…”

“…Early research exploring motivations for people getting their own DNA tested also found non-health related reasons (e.g., [15]), such as consumers seeking tests for education, entertainment, and curiosity purposes [26]. Making the parallel between consumers using DTC-GT with little background information, Lee et al [36] found the majority of adult adoptees used tests to search for biological family, verify "race," and learn about their ancestry.…”