Adopting genetics: motivations and outcomes of personal genomic testing in adult adoptees

Abstract

Purpose-American adult adoptees may possess limited amounts of information about their biological families and turn to direct-to-consumer personal genomic testing (PGT) for genealogical and medical information. We investigated the motivations and outcomes of adoptees undergoing PGT using data from the Impact of Personal Genomics (PGen) Study. Methods-ThePGen Study surveyed new 23andMe and Pathway Genomics customers prior to and 6 months after receiving PGT results. Exploratory analyses compared adoptees' and nonadoptees' PGT attitudes, expectations, and experiences. We evaluated the association of adoption status with motivations for testing and post-disclosure actions using logistic regression models.Results-Of 1607 participants, 80 (5%) were adopted. As compared to non-adoptees, adoptees were more likely to cite limited family health history knowledge (OR = 10.1; 95% CI = 5.7-19.5) and the opportunity to learn genetic disease risks (OR = 2.7; 95% CI = 1.6-4.8) as strong motivations for PGT. Of 922 participants who completed 6-month follow-up, there was no Users may view, print, copy, and download text and data-mine the content in such documents, for the purposes of academic research, subject always to the full Conditions of use:http://www.nature.com/authors/editorial_policies/license.html#terms Figure S1 presents a flowchart of the PGen Study design and indicates the composition of the baseline and 6-month survey samples. Table S1 and Figure S2 compare the self-reported family health history information of adoptees and non-adoptees. Table S2 presents adoptees' and non-adoptees' views on genetic privacy 6 months following PGT. Table S3, Table S4, and Table S5 compare the demographics of the 6-month survey sample to those who were not retained for follow-up or excluded from the 6-month analyses for all participants, for adoptees, and for non-adoptees, respectively. Author Manuscript significant association between adoption status and PGT-motivated healthcare utilization or health behavior change. HHS Public AccessConclusion-PGT allows adoptees to gain otherwise inaccessible information about their genetic disease risks and ancestry, helping them to fill the void of an incomplete family health history.

Recent developments in genetics and medically assisted reproduction: from research to clinical applications

“…The results of these tests, which are usually provided commercially, enable the consumer to match relatives 'on-line'. This strategy has also already been broadly used by adoptees and foundlings [ 34 ]. Moreover, the current affordable costs of DTC genetic testing make it accessible to the majority of consumers in Europe and beyond.…”

Implementation of personalized medicine in Central-Eastern Europe: pitfalls and potentials based on citizen’s attitude

“…There are a variety of different motives for broad genetic testing when in good health [16]. Health-related motives may include the potential for early detection and intervention, prevention, and closer monitoring [17]; for adoptees, it can be a source of familial medical history [18]. Non-health-related motives may include curiosity, desire to learn ancestry information, participation in research, and recreation-related motives [16].…”

“…After consulting a physician, 73.5% of the respondents would request a genetic test to screen for genetic defects causing serious diseases, and 65.3% would ask for a genetic test to detect genetic risk factors for common diseases. Without a consultation, only 47.6 and 46.9% [18], where 80 adoptees and 1527 non-adopted adults expressed a high interest in ancestry information (73% of the non-adoptees and 83% of the adoptees were Bvery interested^in learning ancestry information).…”

Ancestry Testing and the Practice of Genetic Counseling

“…One recent study demonstrated that the difficulty of completing a questionnaire on family health history was not due to the tool itself, but rather due to the difficulty of accessing one's family history (Armel et al 2015). In some cases, ancestry testing is being used to rule in or rule out genetic relatedness between individuals in a family and is being ordered as a replacement for information missing due to adoption and lack of access to family health history (Royal et al 2010;Baptista et al 2016).…”