A Lack of Information About Family Health History Motivates Adopted Individuals to Pursue Elective Genomic Testing

Elective genomic testing (EGT) for medically actionable disease predispositions may help adopted individuals (adoptees) with limited knowledge of family health history (FHH) information understand their inherited risks. In this prospective cohort study, patients who participated in Sanford Health's EGT program were surveyed at the time of enrollment between August 2020 and April 2022 about their motivations for pursuing EGT and perceived risks for three conditions. Data from self-reported adoptees and nonadoptees were analyzed using bivariate analyses. Of the 5799 eligible patients, 197 (3.4%) reported that they were adopted. Adoptees were more likely than nonadoptees to report lack of information about FHH as a very important motivation for pursuing EGT (81% vs. 32%, p < 0.001) and were more likely to rate it as their most important motivation (45% vs. 5%; p < 0.001). Other motivations, including learning about personal disease risk (72% vs. 61%; p = 0.016) and providing disease risk information to children (69% vs. 57%; p = 0.003), were also more likely to be rated as very important by adoptees than by nonadoptees, respectively. No differences in risk perceptions were observed. A lack of FHH information is an important reason why adoptees pursue EGT. Adoptees may hope that EGT will identify inherited risks for disease.