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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
American Society of Human Genetics Social Issues Committee report on genetics and adoption: points to consider. (1991). Am J Hum Genet, 48(5), 1009–1010.
Baum, S., Ma, J. & K. Payea. (2013). Education Pays 2013: the benefits of higher education for individuals and society.. Retrieved from http://www.dev.skylinecollege.edu/sparkpoint/about/documents/education-pays-2013-full-report.pdf
Beauchamp, K. A., Muzzey, D., Wong, K. K., Hogan, G. J., Karimi, K., Candille, S. I., & Haque, I. S. (2017). Systematic design and comparison of expanded carrier screening panels. Genetics in Medicine, 20, 55–63. https://doi.org/10.1038/gim.2017.69.
Bell, C. J., Dinwiddie, D. L., Miller, N. A., Hateley, S. L., Ganusova, E. E., Mudge, J., & Kingsmore, S. F. (2011). Carrier testing for severe childhood recessive diseases by next-generation sequencing. Science Translational Medicine, 3(65), 65ra64. https://doi.org/10.1126/scitranslmed.3001756.
Calcagno, K. (2012). Medical family history taking practices of private adoption agencies in select Midwest states. (Master of Science), Northwestern University, Chicago
Cho, D., McGowan, M. L., Metcalfe, J., & Sharp, R. R. (2013). Expanded carrier screening in reproductive healthcare: perspectives from genetics professionals. Human Reproduction, 28(6), 1725–1730. https://doi.org/10.1093/humrep/det091.
Chokoshvili, D., Vears, D., & Borry, P. (2017). Expanded carrier screening for monogenic disorders: where are we now? Prenatal Diagnosis, 38, 59–66. https://doi.org/10.1002/pd.5109.
Dunlop, S., Coyte, P. C., & McIsaac, W. (2000). Socio-economic status and the utilisation of physicians’ services: results from the Canadian National Population Health Survey. Social Science & Medicine, 51(1), 123–133.
Edwards, J. G., Feldman, G., Goldberg, J., Gregg, A. R., Norton, M. E., Rose, N. C., & Watson, M. S. (2015). Expanded carrier screening in reproductive medicine-points to consider: a joint statement of the American College of Medical Genetics and Genomics, American College of Obstetricians and Gynecologists, National Society of Genetic Counselors, Perinatal Quality Foundation, and Society for Maternal-Fetal Medicine. Obstetrics and Gynecology, 125(3), 653–662. https://doi.org/10.1097/AOG.0000000000000666.
Gross, S. J., Pletcher, B. A., & Monaghan, K. G. (2008). Carrier screening in individuals of Ashkenazi Jewish descent. Genetics in Medicine, 10(1), 54–56. https://doi.org/10.1097/GIM.0b013e31815f247c.
Harris, I. D., Fronczak, C., Roth, L., & Meacham, R. B. (2011). Fertility and the aging male. Revista de Urología, 13(4), e184–e190.
Hinton Jr., R. B. (2008). The family history: reemergence of an established tool. Critical Care Nursing Clinics of North America, 20(2), 149–158, v. https://doi.org/10.1016/j.ccell.2008.01.004.
Jones, J., Placek, P. (2017). Adoption by the numbers, 1–41. Retrieved from https://indd.adobe.com/view/4ae7a823-4140-4f27-961a-cd9f16a5f362
National Society of Genetic Counselors. (2014). Genetic testing and adoption. Position Statment. Retrieved from http://www.nsgc.org/p/bl/et/blogid=47&blogaid=152
Rhodes, J. C., Barfield, W. D., Kohn, M. A., Hedberg, K., & Schoendorf, K. C. (2002). Releasing pre-adoption birth records: a survey of Oregon adoptees. Public Health Reports, 117(5), 463–471.
Romero, S., Rink, B., Biggio Jr., J. R., & Saller Jr., D. N. (2017). Committee opinion no. 690: carrier screening in the age of genomic medicine. Obstetrics and Gynecology, 129(3), e35–e40. https://doi.org/10.1097/AOG.0000000000001951.
Srinivasan, B. S., Evans, E. A., Flannick, J., Patterson, A. S., Chang, C. C., Pham, T., & Patrizio, P. (2010). A universal carrier test for the long tail of Mendelian disease. Reprod Biomed Online, 21(4), 537–551. https://doi.org/10.1016/j.rbmo.2010.05.012.
Sweeny, J. C., & Soutar, G. N. (2001). Consumer perceived value: the development of a multiple item scale. J of Retailing, 77, 203–220.
Tietze, C. (1957). Reproductive span and rate of reproduction among Hutterite women. Fertility and Sterility, 8(1), 89–97.
Vandivere S, Malm, K., & Radel, L.. (2009). Adoption USA: a chartbook based on the 2007 National Survey of Adoptive Parents. Retrieved from http://aspe.hhs.gov/hsp/09/NSAP/chartbook/
Ventura, S. J., Curtin, S. C., Abma, J. C., & Henshaw, S. K. (2012). Estimated pregnancy rates and rates of pregnancy outcomes for the United States, 1990–2008. National Vital Statistics Reports, 60(7), 1–21.
Acknowledgements
The research performed to produce this manuscript was conducted to fulfill a Master’s degree requirement.
Funding
Funding for recruitment incentive was provided by the Northwestern University Graduate Program in Genetic Counseling.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
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.
Electronic Supplementary Material
ESM 1
(DOCX 20 kb).
Rights and permissions
About this article
Cite this article
Spencer, S., Ewing, S., Calcagno, K. et al. Adopted Individuals’ Views on the Utility and Value of Expanded Carrier Screening. J Genet Counsel 27, 1341–1348 (2018). https://doi.org/10.1007/s10897-018-0256-2
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10897-018-0256-2