Adopted individuals’ interest in elective genomic testing

Abstract

PurposeAdoptees are a population that could benefit from genetic testing to fill gaps in family health history (FHH). Elective genomic testing (EGT) provides adoptees with clinical genetic testing options to learn about genetic health risks in the absence of FHH. We assessed adoptees’ interests in, motivations for and perceived utility of EGT.MethodsAdult adoptees and non-adoptees completed an anonymous, online survey regarding their interest and motivations for EGT, perceived utility of potential results and willingness to pay for EGT. A validated measure of social identity was included to measure the effects of social identity on testing interest.ResultsThere were 112 adoptees and 229 non-adoptees included in the study. Adoptees reported greater interest in EGT (OR 5.0, 95% CI 2.2 to 11.3) than non-adoptees. They were motivated by curiosity and a desire to learn information about risks to children and grandchildren more than non-adoptees. Adoptees with higher education and non-adoptees with higher incomes were significantly more likely to spend more on EGT. Adoptees with higher incomes and non-adoptees with higher education were not significantly more likely to spend more. Social identity was a significant mediator between adoption and testing motivation.ConclusionUnderstanding adoptees’ unique motivations and interests in EGT will allow healthcare providers to better address the informational needs and desires of this population. Social identity provides a foundation for recognising adoptees’ universal experiences that influence motivations for genetic testing.

How does the genomic naive public perceive whole genomic testing for health purposes? A scoping review

“…Three studies conducted focus groups [ 53 , 55 , 60 ] while one study used both focus groups and a survey [ 58 ]. The US has contributed the most to this field thus far, undertaking six of the 16 studies identified in the literature search [ 49 , 50 , 52 , 53 , 55 , 58 ]. This is followed by Canada ( n = 2) [ 48 , 51 ] and Japan ( n = 2) [ 54 , 59 ].…”

“… Not representative Survey with questions regarding respondent demographics, interest in whole genome sequencing for themselves and their youngest children. Edgar et al [ 50 ] USA To have a better understanding of the specific genomic risk information adoptees are interested in learning. Total = 341; Non-adoptees = 229; Adopted individuals = 112 Non-adopted individuals were recruited via Amazon Mechanical Turk, a crowdsourcing Internet platform.…”

“…Greenhalgh et al [ 39 ] define this question as the downstream value of the technology, including the evidence of benefit to patients and affordability. Willingness to pay for genomic testing was directly assessed in three studies [ 50 , 52 , 57 ]. Gibson, Hohmeier and Smith [ 52 ] found that if the entire cost of the pharmacogenomic test was covered by insurance, 89% of participants ( n = 24) would undertake testing [ 52 ].…”

“…Sixteen studies were included in the analysis [46][47][48][49][50][51][52][53][54][55][56][57][58][59][60][61]. Most were quantitative (n = 12), using questionnaires to assess public perceptions [46-52, 54, 56, 57, 59, 61].…”

Direct-to-consumer genetic testing: Prospective users’ attitudes toward information about ancestry and biological relationships

“…Our participants also varied widely in their views about the desirability of communicating with previously unknown relatives. As has been observed by others, some were eager to find kin, especially those who had few relatives or gaps in their family history [ 45 ] or who had been adopted [ 55 ]. Many, however, expressed concerns about intrusion on their personal privacy, being taken advantage of, and potential to upset existing family relationships and to create new obligations [ 28 ].…”