Decisional conflict among adolescents and parents making decisions about genomic sequencing results

Abstract

Genomic testing of adolescents is increasing yet engaging them in decision-making is not routine. We assessed decisional conflict in adolescents and a parent making independent decisions about actual genomic testing results and factors that influenced their choices. We enrolled 163 dyads consisting of an adolescent (13-17 years) not selected based on a specific clinical indication and one parent. After independently choosing categories of conditions to learn for the adolescent, participants completed the validated Decisional Conflict Scale and a survey assessing factors influencing their respective choices. Adolescents had higher decisional conflict scores than parents (15.6 [IQR:4.7-25.6] vs 9.4 [IQR:1.6-21.9]; P = .0007). Adolescents with clinically significant decisional conflict were less likely to choose to learn all results than adolescents with lower decisional conflict (19.6% vs 80.4%; P < .0001) and less likely to report their choices were influenced by actionability of results (33.3% vs 18.9%; P = .044) and feeling confident they can deal with the results (71.2% vs 91.9%; P = .0005). Our findings suggest higher decisional conflict in adolescents may influence the type and amount of genomic results they wish to learn. Additional research assessing decisional conflict and factors influencing testing choices among adolescents in clinical settings are required. recommended by the ACMG while others may offer to return genomic screening results specific to study aims. 9,[11][12][13] Offering large amounts of genomic information to participants can make decisionmaking about which results to learn increasingly complex. When faced with such a complex decision, individuals may experience decisional conflict, which is a "personal uncertainty about which course of action to take when choice among competing options involves risk, regret or challenge to personal life values." 14 Making decisions about learning genomic information can be particularly challenging for asymptomatic minors -especially if they are offered the option to learn about carrier status or adult onset conditions that are not actionable in childhood. Concerns about learning carrier results or adult-onset conditions include psychosocial harms such as undue loss of autonomy and privacy; stress, anxiety and stigmatization. 15,16 However, benefits also include being aware of treatment and screening options, not being blindsided by a diagnosis at a later age, and the ability to make informed reproductive decisions and prompt life changes. 17 Literature focusing on the return of secondary genomic results has mainly focused on understanding the preferences of adults and parents with children who are at risk of or previously diagnosed with a genetic condition. 16,18,19 Adolescents' preferences about secondary findings and factors that influence their decisions to learn genomic information have largely been unexplored. In addition, most studies have involved hypothetical return of secondary findings and may not accurately depict preferences of the participa...

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

“…In contrast, adult participants want SSR in order to have greater certainty about personal risk [ 8 , 30 ], to determine whether they required screening [ 8 ], because it was recommended by their healthcare professional or desired by a relative [ 8 ], or for insurance or planning purposes [ 8 , 30 , 88 ]. Participants also listed a desire to know health information [ 5 , 12 , 81 ], provide diagnostic certainty [ 82 ], prevent disease/improve health [ 5 , 12 , 81 , 86 , 88 ], adopt better health habits [ 88 ] and alter medical management as reasons for wanting their results [ 5 , 82 ].…”

Experiences With Genetic Counseling, Testing, and Diagnosis Among Adolescents With a Genetic Condition

“…Given that the application of GS is relatively recent, only 1 study thus far has addressed this use of GS empirically . Two articles examined the decision-making by, and return of results to, adolescents regarding genomic testing . However, these studies evaluated genomic testing decision-making in adolescents who did not have clinical indications for testing and therefore were not included in this scoping review.…”

Exome sequencing study in a clinical research setting finds general acceptance of study returning secondary genomic findings with little decisional conflict

“…Decisional conflict was assessed with a widely-used 17item scale, which includes sub-scales assessing decision quality related to feeling informed, feeling one's decision is consistent with one's values, experiencing an acceptable degree of uncertainty around the decision, feeling supported, and feeling effective in one's decision-making (test-retest reliability coefficient = 0.81; α = 0.78-0.92) (O'Connor, 1995). General self-efficacy was assessed using a short-form, 6-item scale (α = 0.79-0.88) (Brignardello-Petersen, 2017; David et al, 2018;Raghuram Pillai et al, 2020;Romppel et al 2013). Lastly, the survey included previously used questions regarding risk perception (Tong et al, 2015), and seven novel items regarding previously hearing of WES, ability to cope with receiving a PF or SF, and acceptability of returning SF in a research setting.…”