30- What motivates adopted individuals to pursue elective genetic testing? Findings from the Sanford Chip program

Elective genetic testing (EGT) may help individuals who are adopted (adoptees) with limited access to family health history (FHH) information understand their inherited risks.
A survey was administered upon enrollment in the Sanford Chip EGT program from August 2020 to April 2022. Survey items assessed participants’ motivations, expectations, and concerns about testing, as well as demographic characteristics, including adoption status. Data were analyzed using bivariate analyses.
Of the 5,799 patients who met inclusion criteria, 197 (3.4%) reported that they were adopted. Adoptees were more likely than non-adoptees to report lack of information about their family history as a very important motivation for pursuing the Sanford Chip (81% vs 32%; p<0.001); moreover, they were more likely to rate it as their most important motivation (45% vs 5%; p<0.001). Other motivations, such as interest in 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 non-adoptees, respectively. Adoptees were also more likely than non-adoptees to expect that the Sanford Chip would explain a family history of disease (52% vs 43%; p=0.004). There were no differences in concerns between adoptees and non-adoptees.
A lack of FHH information is an important reason why EGT is pursued by adoptees, who may hope it will identify inherited risks for disease.