The lack of family health history experienced by most adopted persons can represent a marked disadvantage for these individuals. Genetic testing has the potential to reliably and usefully fill informational gaps, but considerable challenges need to be addressed to assemble an economic case for affordability.
Lack of family health history experienced by most adopted persons can represent a marked disadvantage. This Comment discusses the role of genetic testing in filling this informational gap and the challenges that need to be overcome.
Subscribe to Journal
Get full journal access for 1 year
only $22.08 per issue
All prices are NET prices.
VAT will be added later in the checkout.
Rent or Buy article
Get time limited or full article access on ReadCube.
All prices are NET prices.
May, T. et al. Does lack of ‘genetic relative family health history’ represent a potentially avoidable health disparity for adoptees? Am. J. Bioeth. 16, 33–38 (2016).
Kalia, S. S. et al. Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SFv2.0): a policy statement of the American College of Medical Genetics and Genomics. Genet. Med. 19, 249–255 (2017).
May, T. et al. Can targeted genetic testing offer useful health information to adoptees? Genet. Med. 17, 533–535 (2015).
May, T. & Evans, J. P. Addressing perceived economic obstacles to genetic testing as a way to mitigate disparities in family health history for adoptees. Health Econ. Policy Law https://doi.org/10.1017/S1744133118000488 (2018).
May, T., Lee, R. M. & Evans, J. P. Healthcare challenges faced by adopted persons lacking family health history information. Narrat. Inq. Bioeth. 8, 103–106 (2018).
May, T. & Grotevant, H. Autonomy, well-being, and the value of genetic testing for adopted persons. HEC Forum 30, 283–295 (2018).
The author thanks K. A. Strong, J. P. Evans, H. Grotevant, R. M. Lee and K. L. Zusevics for supporting the Genomic Family History for Adopted Persons project since its very early days, and continuing to the present. Their influence is reflected in the core ideas articulated here.
The author declares no competing interests.
About this article
Cite this article
May, T. The value of genetic testing for family health history of adopted persons. Nat Rev Genet 20, 65–66 (2019). https://doi.org/10.1038/s41576-018-0080-4
Psychological correlates of interest in genetic testing among Korean American adoptees and their parents
Journal of Genetic Counseling (2020)
Toward Clinical Implementation of Next-Generation Sequencing-Based Genetic Testing in Rare Diseases: Where Are We?
Trends in Genetics (2019)