Adolescent perspectives on the return of individual results in genomic addiction research

Coors, Marilyn E.; Raymond, Kristen M.; McWilliams, Shannon K.; Hopfer, Christian J.; Mikulich‐Gilbertson, Susan K.

doi:10.1097/ypg.0000000000000083

Cited by 11 publications

(12 citation statements)

References 32 publications

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“…However, there remains a lack of clarity regarding the optimal mechanics of returning research results, with imaging and genetics paving the way while other data types remain in more nascent stages. Nevertheless, the enthusiasm for returning research results continues to grow, while several questions remain unanswered surrounding what to return, when, and how [16][17][18].…”

Section: Introductionmentioning

confidence: 99%

Return of individual research results: What do participants prefer and expect?

et al. 2021

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Newer data platforms offer increased opportunity to share multidimensional health data with research participants, but the preferences of participants for which data to receive and how is evolving. Our objective is to describe the preferences and expectations of participants for the return of individual research results within Project Baseline Health Study (PBHS). The PBHS is an ongoing, multicenter, longitudinal cohort study with data from four initial enrollment sites. PBHS participants are recruited from the general population along with groups enriched for heart disease and cancer disease risk. Cross-sectional data on return of results were collected in 2017–2018 from an (1) in-person enrollment survey (n = 1,890), (2) benchmark online survey (n = 1,059), and (3) participant interviews (n = 21). The main outcomes included (1) preferences for type of information to be added next to returned results, (2) participant plans for sharing returned results with a non-study clinician, and (3) choice to opt-out of receiving genetic results. Results were compared by sociodemographic characteristics. Enrollment and benchmark survey respondents were 57.1% and 53.5% female, and 60.0% and 66.2% white, respectively. Participants preferred the following data types be added to returned results in the future: genetics (29.9%), heart imaging, (16.4%), study watch (15.8%), and microbiome (13.3%). Older adults (OR 0.60, 95% CI: 0.41–0.87) were less likely to want their genetic results returned next. Forty percent of participants reported that they would not share all returned results with their non–study clinicians. Black (OR 0.64, 95% CI 0.43–0.95) and Asian (OR 0.47, 95% CI 0.30–0.73) participants were less likely, and older participants more likely (OR 1.45–1.61), to plan to share all results with their clinician than their counterparts. At enrollment, 5.8% of participants opted out of receiving their genetics results. The study showed that substantial heterogeneity existed in participant’s preferences and expectations for return of results, and variations were related to sociodemographic characteristics.

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Section: Introductionmentioning

confidence: 99%

Return of individual research results: What do participants prefer and expect?

et al. 2021

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“…Even patients suffering from stigmatizing diseases seem to follow this trend. Indeed, in a recent study, 78% of young participants suffering from SCPs and 73% of control group participants without SCP would like to receive results about their health, including those that have behavioral implications (Coors et al, 2015). The authors conclude that even vulnerable populations want to know individual research results.…”

Section: Ethical Issues Related To the Return Of Resultsmentioning

confidence: 99%

“…Questions concern issues such as who should be responsible for keeping contact addresses up to date, who should contact participants (physicians or other healthcare providers) (Elger et al, 2008;Elger, 2010), and which means of contact should be used (Coors et al, 2015) given that research participants have various preferences and expectations? For example, in a recent study including young patients undergoing treatment for substance and conduct problems (SCPs) and members of a control group, a majority (close to 70% in both groups) reported phone recontact as the ''best'' option, whereas a substantial majority in the range of one-fifth to one-third considered recontact by e-mail or social networking websites as viable options (Coors et al, 2015). The feasibility of recontacting is negatively affected by the way in which many current biobanks are organized.…”

Section: Practical Issues Related To the Return Of Resultsmentioning

confidence: 99%

“…The authors conclude that even vulnerable populations want to know individual research results. ''Data from this special and vulnerable population, which includes youth involved in the criminal justice system and substantial minority participation, bring an essential and missing perspective to the discussion of RIR [return of individual results]'' (Coors et al, 2015).…”

Section: Ethical Issues Related To the Return Of Resultsmentioning

confidence: 99%

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Returning Results: Let's Be Honest!

Elger

Clercq

2017

Genetic Testing and Molecular Biomarkers

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Biobank research has the potential to return results that could have beneficial and even life-saving consequences for participants. This possibility raises some important questions, not only about the ethical duty to return results within a research setting, but also about participants' right to refuse results and researchers' responsibility to respect that choice. This article argues in favor of adopting a return-of-results policy that limits participants' ability to refuse clinically relevant and actionable results. We state that biobanks should allow donors only if they are aware of and agree to this return policy. If they do not agree to this, they retain the option not to participate in the biobank research. The aim of this article is to discuss the practical and ethical reasons in favor of this return-of-result policy and, thus, to underline the importance of ''honesty'' in biobanking regulations.

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“…Moreover, these data offer insights for investigators to consider including several risks salient to their unique study population along with those required by local IRBs. Preliminary research demonstrates that investigators are not particularly accurate in predicting how adolescent participants with SUD will respond to information on researcher conflicts of interest and return of individual research results, despite years of experience with this population (Coors et al, 2015a, 2015b). Further research is necessary to determine how diverse populations understand the risks of broadly shared biobanks in order to address effectively best research practices for assent/consent.…”

Section: Discussionmentioning

confidence: 99%

Adolescents with substance use disorder and assent/consent: Empirical data on understanding biobank risks in genomic research

Coors

Raymond

Hopfer

et al. 2016

Drug and Alcohol Dependence

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Objective This study assessed whether a customized disclosure form increases understanding for adolescents with substance use disoder (SUD) when compared to a standard disclosure for genomic addiction research. Method We gathered empirical data from adolescents with SUD, family members, former patients followed since adolescence, and community counterparts. The study was conducted in four stages. Stage 1: national experts (n=32) identified current, future, speculative risks of broadly shared biobanks. Stage 2 assessed participants’ (n=181) understanding of current risks as a prerequisite for rating saliency of risks via a Visual Analogue Scale. Salient risks were incorporated into a customized disclosure form. Stage 3 compared the understanding of customized disclosure by participants (n=165) at baseline; all groups scored comparably. Stage 4 conducted a direct comparison of the standard disclosure to standard disclosure plus customized disclosure (n=195). Independent t-tests compared understanding in those receiving the standard disclosure to standard disclosure plus customized disclosure within 6 groups. Results The customized disclosure significantly improved understanding in adolescent patients (p=.002) and parents of patients (p=.006) to the level of their counterparts. The customized disclosure also significantly improved understanding in siblings of former patients (p=.034). Understanding of standard disclosure in patients versus controls was significantly different (p=0.005). The groups receiving the customized disclosure scored significantly higher. Understanding of the standard disclosure plus customized disclosure in patients versus controls was not significantly different. Conclusion Adolescents with addictions understand the risks of participating in genomic addiction research as well as their community counterparts when information provided is salient to them.

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Adolescent perspectives on the return of individual results in genomic addiction research

Cited by 11 publications

References 32 publications

Return of individual research results: What do participants prefer and expect?

Return of individual research results: What do participants prefer and expect?

Returning Results: Let's Be Honest!

Adolescents with substance use disorder and assent/consent: Empirical data on understanding biobank risks in genomic research

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