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Original research
Adopted individuals’ interest in elective genomic testing
  1. Jessica Edgar1,
  2. Annie Bao1,
  3. Tara Maga1,2,
  4. Marci Schwartz3,
  5. Carin Yates4,
  6. Sara Spencer1,5
  1. 1Center for Genetic Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA
  2. 2Hereditary Cancer Program, University of Illinois at Chicago, Chicago, Illinois, USA
  3. 3Genomic Medicine Institute, Geisinger, Danville, Pennsylvania, USA
  4. 4GeneDx, Gaithersburg, Maryland, USA
  5. 5Obstetrics and Gynecology, Northwestern Medicine, Chicago, Illinois, USA
  1. Correspondence to Jessica Edgar, Center for Genetic Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL 60611-3008, USA; jessica.edgar1{at}yahoo.com

Abstract

Purpose Adoptees 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.

Methods Adult 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.

Results There 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.

Conclusion Understanding 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.

  • genetic counseling
  • genetic testing
  • genetics

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Footnotes

  • Contributors JE and SS had substantial contribution to concept/design, data acquisition, data interpretation and drafting of the manuscript. AB had substantial contribution to concept/design, data interpretation and drafting of the manuscript. CY, MS and TM had substantial contribution to concept/design and drafting of the manuscript. All authors reviewed and approved the manuscript.

  • Funding Research for this article was funded by the Graduate Program in Genetic Counseling at Northwestern University.

  • Competing interests JE, SS, TM and AB have nothing to disclose. MS reports personal fees from Geisinger Health, outside the submitted work; and she is a former co-chair of the National Society of Genetic Counselors Precision Medicine Special Interest Group (an unpaid position). CY is an employee of GeneDx, a genetic testing company that provides healthy exome genomic testing as described in the article.

  • Patient consent for publication Not required.

  • Ethics approval The study was granted Northwestern Institutional Review Board approval, study number STU00210305, on 22 August 2019.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as online supplemental information. The data supporting the findings of this study are available within the article and its online supplemental materials.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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