Adoptees’ Pursuit of Genomic Testing to Fill Gaps in Family Health History and Reduce Healthcare Disparity

In the symposium of stories by adoptees who have faced health issues without family health history information, genomic testing is considered as a potentially life-saving means for adoptees to obtain family medical information. The authors share feelings of loss, frustration in healthcare settings, fear of unknown genetic susceptibility to disease, desire for knowledge and self-empowerment in medical decision making, and uncertainty about the utility of genomic testing. Adoptees may pursue ancestry testing, genetic genealogy to find biological relatives, and medical genomic testing. They may choose direct-to-consumer testing because of its affordability and accessibility. Adopted persons are gaining support from healthcare professionals in their pursuit of genomic testing. The National Society of Genetic Counselors’ position statement regarding genetic testing and adoption “supports consideration of genetic testing, including genome-wide testing, for adopted adults.” However, predictive genomic testing of children in the adoption process is not recommended by the NSGC unless testing may affect childhood medical management. The American Society of Human Genetics and the American College of Medical Genetics and Genomics similarly recommend that genetic testing of children in the adoption process be limited to diagnostic testing for conditions for which there is timely preventative or therapeutic intervention. Going forward, there is responsibility and opportunity for national genetics and genomics societies and healthcare systems to hone their practice guidelines for genomic testing for adoptees. A successful approach will include evidence-based guidelines for genomic testing, inclusion of genetic counseling before and after testing, and return of genomic test results to adoptees’ medical homes.