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Adopted Individuals’ Views on the Utility and Value of Expanded Carrier Screening

  • Sara Spencer
  • Sarah Ewing
  • Kathryn Calcagno
  • Suzanne O’Neill
Original Research

Abstract

Adoptees may not have family medical history and ethnicity information. Carrier screening assesses reproductive risk. Expanded carrier screening (ECS) screens for many genetic conditions regardless of a patient’s knowledge of family history and ethnicity. This study aimed to better understand the opinions and attitudes of adopted individuals on the use of ECS in determining a patient’s reproductive genetic risks. Specifically, the study assessed how adopted individuals feel that results of ECS may be useful to them and whether adoptees feel that meeting with a genetics professional in the process of undergoing ECS would be useful. Adult adoptees (N = 124) were recruited online. Their opinions on ECS were explored. The majority reported they had never been offered carrier screening (92%). The majority of adoptees wanted ECS (76%). Neither the amount of contact with biological relatives nor having medical knowledge about biological relatives was significantly associated with adoptees’ desire to pursue ECS. There was a significant positive correlation between adoptees of higher education levels and the amount they would pay for ECS (p = 0.004). The majority of participants (95%) indicated a genetics professional would be helpful when undergoing ECS. The findings suggest this population may want ECS and support from genetics healthcare professionals. Advocacy for genetic counseling and testing for adoptees appears justifiable.

Keywords

Adopted Genetic test Expanded carrier screen Reproductive risk Family history Ethnicity 

Notes

Acknowledgements

The research performed to produce this manuscript was conducted to fulfill a Master’s degree requirement.

Funding information

Funding for recruitment incentive was provided by the Northwestern University Graduate Program in Genetic Counseling.

Compliance with Ethical Standards

Conflict of Interest

Sara Spencer, Sarah Ewing, Kathryn Calcagno, and Suzanne O’Neill declare that they have no conflict of interest.

Human Subjects and Informed Consent

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. For this type of study, formal consent is not required, but consent was implied once participants initiated the survey.

Supplementary material

10897_2018_256_MOESM1_ESM.docx (20 kb)
ESM 1 (DOCX 20 kb).

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Copyright information

© National Society of Genetic Counselors, Inc. 2018

Authors and Affiliations

  1. 1.Obstetrics and GynecologyNorthwestern MedicineChicagoUSA
  2. 2.Department of Clinical GenomicsMayo ClinicRochesterUSA
  3. 3.Genetics CenterOrangeUSA
  4. 4.Center for Genetic MedicineNorthwestern UniversityChicagoUSA

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