Adult adoptees’ attitudes regarding the potential use of genetic information to fill the gap in their family health history

Strong, Kimberly A.; May, Thomas; McCauley, Michael P.; Kirschner, Alison La Pean; Jeruzal, Jessica; Wilson, Samantha L.; Zusevics, Kaija L.; Knight, Carmen

doi:10.1177/0308575917704553

Cited by 18 publications

(31 citation statements)

References 36 publications

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“…Traditionally, adoptees have sought information about their biological family through adoption agencies, governmental organizations, public records, and use of private investigators. These avenues to identify family information can be time‐consuming, expensive, and outside of their control (Strong et al., 2017; Wrobel, Grotevant, Samek, & Korff, 2013). In domestic adoptions, state laws enacted in the first half of the twentieth century sealed records as part of standard adoption practice (Sokoloff, 1993; United Nations, 2009).…”

Section: Introductionmentioning

confidence: 99%

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

Lee

LeRoy

Zierhut

2020

Journal of Genetic Counseling

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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.

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Section: Introductionmentioning

confidence: 99%

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

Lee

LeRoy

Zierhut

2020

Journal of Genetic Counseling

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“…Their curiosity is likely a result of limited knowledge and access to FHH. However, adoptees may express greater interest in genetic testing as a result of their reporting greater health problems 9. In our study, adoptees were twice as likely to report a personal history of a condition they perceived to be genetic than non-adoptees.…”

Section: Discussionmentioning

confidence: 60%

“…Social identity has been shown to influence health-related behaviours, which could contribute to differences between adoptees’ and non-adoptees’ motivations and desire for genetic testing 8. Adoptees often share characteristics, such as limited family history knowledge and lack of contact with birth family members, motivating them to consider genetic testing to learn about personal risks and to make health information more accessible for future generations 9 10…”

Section: Introductionmentioning

confidence: 99%

“…Genetic testing has the potential to mitigate disadvantages caused by lack of family history 5. Adoptees have demonstrated interest in using genetic testing to fill gaps in their health history 9. For example, adoptees overwhelmingly reported interest in pursuing expanded carrier screening; the majority expressed curiosity as a motivating factor for pursuing genetic testing 11.…”

Section: Introductionmentioning

confidence: 99%

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Adopted individuals’ interest in elective genomic testing

et al. 2020

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PurposeAdoptees are a population that could benefit from genetic testing to fill gaps in family health history (FHH). Elective genomic testing (EGT) provides adoptees with clinical genetic testing options to learn about genetic health risks in the absence of FHH. We assessed adoptees’ interests in, motivations for and perceived utility of EGT.MethodsAdult adoptees and non-adoptees completed an anonymous, online survey regarding their interest and motivations for EGT, perceived utility of potential results and willingness to pay for EGT. A validated measure of social identity was included to measure the effects of social identity on testing interest.ResultsThere were 112 adoptees and 229 non-adoptees included in the study. Adoptees reported greater interest in EGT (OR 5.0, 95% CI 2.2 to 11.3) than non-adoptees. They were motivated by curiosity and a desire to learn information about risks to children and grandchildren more than non-adoptees. Adoptees with higher education and non-adoptees with higher incomes were significantly more likely to spend more on EGT. Adoptees with higher incomes and non-adoptees with higher education were not significantly more likely to spend more. Social identity was a significant mediator between adoption and testing motivation.ConclusionUnderstanding adoptees’ unique motivations and interests in EGT will allow healthcare providers to better address the informational needs and desires of this population. Social identity provides a foundation for recognising adoptees’ universal experiences that influence motivations for genetic testing.

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“…It may be because of a lack of interest, a concern over how the data is used and how it's stored, or perhaps a lack of finances or unwillingness to put finances towards the test. Finances are important because users also tend to be at least middle class and educated, but if the users are only one or neither they may be involved in the testing for another reason, such as having encountered a health scare or experiencing a lack of knowledge about their genetic health due to, for example, adoption (Baptista et al, 2016;Crouch, Yu, Shaker, & Tabor, 2015;Strong et al, 2017).…”

Section: Race and Population Geneticsmentioning

confidence: 99%

Witnessing the Genetic Self: How Non-Specialists use Reveal Videos to Approach Genetics and Race Through Direct-To-Consumer Genetic Ancestry Testing

Berry¹

2023

Preprint

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This paper investigates the interpretation and expression at work when those without a higher education in genetics take a direct-to-consumer (DTC) genetic ancestry test (i.e. AncestryDNA) and then communicate this experience through online video on YouTube, most commonly through the Reveal genre of videos. Through non-random quota sampling a diverse corpus for analysis was created and then analyzed through the lenses of critical race theory, intersectionality, and María Lugones’s concepts of transparency and thickness, with focusing guidance from Gubium and Holstein’s narrative components to uncover how the test-takers approached genetics and race. The variations in how individuals approach their DTC genetic ancestry test results and communicate them through the videos, touching on topics such as race, family, self-identity, and stories, were discovered to work well alongside Roth and Ivemark’s recently presented genetic options theory.

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Adult adoptees’ attitudes regarding the potential use of genetic information to fill the gap in their family health history

Cited by 18 publications

References 36 publications

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

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

Adopted individuals’ interest in elective genomic testing

Witnessing the Genetic Self: How Non-Specialists use Reveal Videos to Approach Genetics and Race Through Direct-To-Consumer Genetic Ancestry Testing

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