Attitudes of the general public towards the disclosure of individual research results and incidental findings from biobank genomic research in Australia

Fleming, Jennifer; Critchley, Christine; Otlowski, Margaret; Stewart, Cameron; Kerridge, Ian

doi:10.1111/imj.12911

Cited by 20 publications

(18 citation statements)

References 22 publications

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“…Our findings that the majority of participants chose to receive both PR and SF are consistent with previous studies of preferences for return of ES/GS results including reports of choices made by patients undergoing clinical testing, qualitative analyses of participants enrolling in ES/GS research, and general population studies. [15][16][17]19,20,27,28 The actual percentage of participants who chose or expressed a desire to receive SF has varied across studies, ranging from about 73 to 98%. 15,19,21,28,29 Our finding that 83.4% of study participants chose to receive SF falls nicely within this range.…”

Section: Discussionmentioning

confidence: 99%

Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease

et al. 2017

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Although consensus is building that primary (PR) and secondary findings (SF) from genomic research should be offered to participants under some circumstances, data describing (1) actual choices of study participants and (2) factors associated with these choices are limited, hampering study planning. We conducted a cross-sectional analysis of choices made for return of PR and SF during informed consent by members of the first 247 families (790 individuals) enrolled in the Baylor-Hopkins Center for Mendelian Genomics, a genome sequencing study. Most (619; 78.3%) chose to receive SF and PR, 66 (8.4%) chose PR only, 65 (8.2%) wanted no results, and 40 (5.1%) chose SF only. Choosing SF was associated with an established clinical diagnosis in the proband (87.8 vs 79%, P=0.009) and European ancestry (EA) (87.7 vs 73%, P<0.008). Participants of non-European ancestry (NEA) were as likely as those of EA to choose SF when consented by a genetic counselor (GC) (82% NEA vs 88.3% EA, P=0.09) but significantly less likely when consented by a physician (67.4% NEA vs 85.4% EA, P=0.001). Controlling for proband diagnosis, individuals of NEA were 2.13-fold (95% CI: 1.11-4.08) more likely to choose SF when consented by a GC rather than a physician. Participants of NEA were 3-fold more likely than those of EA to decline all study results (14.7% NEA vs 5.4% EA, P<0.008). In this ethnically diverse population, whereas most participants desired PR and SF, more than 20% declined some or all results, highlighting the importance of research participant choice.

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Section: Discussionmentioning

confidence: 99%

Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease

et al. 2017

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“…When asked what type of information they would want communicated, 94.4% reported they would want to receive "specific information obtained from your sample that may be important to your health or treatment" and 70% would want to receive any incidental finding not related to their underlying disease. 17 However, another recent study of 1200 members of the general public evaluating participants' personal use of incidental findings demonstrated that a Patients were asked what type of information they would like to be disclosed in the above scenarios. They were asked to agree, disagree, or remain neutral.…”

Section: Discussionmentioning

confidence: 99%

“…1 Although growing data have suggested that patients in both general and oncology settings favor the disclosure of incidental germline variants, ASCO acknowledges that further research is needed to determine best practices. 1,[17][18][19][20][21] Toward this end, the goal of the current study was to survey a broad cohort of patients with cancer presenting in a clinical oncology setting regarding their attitudes toward incidental germline variants discovered during tumor profiling that could affect their personal health or that of their families.…”

Section: Introductionmentioning

confidence: 99%

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Patient preferences regarding incidental genomic findings discovered during tumor profiling

Yushak

Han

Bouberhan

et al. 2016

Cancer

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Precis: During the process of tumor profiling, there is potential to detect incidental germ-line variants for hereditary cancer syndromes and other major health issues. Amongst a cohort of ambulatory oncology patients, a majority indicated a preference to receive information on these incidental healthrelated findings, but personal preferences for disclosure of different types of incidental findings should be clarified in advance of ordering a tumor profiling test.Keywords: Genomics, genome, germ-line mutation, incidental findings, questionnaire, disclosure Abstract Introduction: During the process of tumor profiling, there is potential to detect germ-line variants.

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“…This finding is quite odd in the landscape of studies on the same topic. In fact, regardless of the settings and type of participants surveyed [e.g., general population (15,16), general population vs. research participants (17), patients (18,19), biobank effective participants vs. potential participants (20,21)], a great majority of studies found that the disclosure of individual results is well accepted and can be even positively influential in the decision to donate. However, a few studies have already highlighted certain specific signals of the difficulties in disclosing individual health information.…”

Section: Discussionmentioning

confidence: 99%

Could the disclosure of individual health results hamper biobanking? Findings from a survey on potential donors screened for depression

Toccaceli

Fagnani

Gigantesco

et al. 2019

Preprint

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Background: Research based on the use of biological material stored in biobanks together with health information and clinical data may produce new strategies for prevention, early detection, accurate diagnoses, and tailored treatments. A postal survey on the knowledge and attitude towards research biobanking was conducted among a sample of individuals previously recruited in urban primary care services in Rome (Italy), and screened for major depressive disorder (MDD) (SET-DEP project). The present study aims at exploring the attitude of these participants towards the potential future disclosure of individual health results when participating in research biobanking. Methods: The survey was conducted with a validated questionnaire on the knowledge and preferences about donation for research biobanks; self-perceived health was collected and The Satisfaction With Life Scale was administered. Means and percentages were compared across groups by using t test or ANOVA and chi-square test respectively. Results: Out of 416 subjects who underwent the screening for MDD, 51 (12.2%) subjects responded to the mail questionnaire. The large majority of respondents (42 subjects, >82%) declared they would agree to the potential use of their biological samples for biomedical research purposes only if no feedback results regarding health or predisposition to diseases would be given to them. The agreement towards research biobanking was not associated with satisfaction with life (ANOVA: p=0.82) or self-perceived health (chi-square test: p=0.98). Conclusions: It is widely recognized that willingness to donate diminishes when the research scenario raises moral, religious or political concerns. Nevertheless, other emerging concerns, more deeply linked to an individual psychosocial sphere, may also affect research biobanking. Our findings show a prevailing preference opposing the disclosure of individual health results not only among MDD positive screened but also – and even more – among MDD negative screened participants. This suggests that there might be relevant personal factors influencing people’s preferences with respect to the feedback of individual results in the case of psychiatric disorders such as depression. Moreover, these preferences do not seem to depend on the perceived heath status or subjective wellbeing of respondents.

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Attitudes of the general public towards the disclosure of individual research results and incidental findings from biobank genomic research in Australia

Abstract: BACKGROUND:

Cited by 20 publications

References 22 publications

Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease

Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease

Patient preferences regarding incidental genomic findings discovered during tumor profiling

Could the disclosure of individual health results hamper biobanking? Findings from a survey on potential donors screened for depression

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