Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research

Hoeyer, Klaus; Olofsson, Birgitta; Mjörndal, Tom; Lynøe, Niels

doi:10.1080/14034940310019506

Cited by 174 publications

(158 citation statements)

References 5 publications

(4 reference statements)

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“…However, some participants also viewed the study-specific model as time-consuming, wasteful, and burdensome, as also observed in prior studies (Hoeyer et al 2004;Master et al 2013;Murphy et al 2009;Platt et al 2013). We found some differences in qualitative themes about the study-specific model by race, with White participants in particular believing that this model would lead to too much contact, while having specific information about secondary research uses and being asked permission for each study were particularly important among Black participants.…”

Section: Time Consuming For Participants and Researcherssupporting

confidence: 62%

“…Participants who value research may be concerned about the effect of a consent model on the speed of scientific innovation. Simon et al (2011) showed that individuals value types of consent that allow them to provide input and be re-consented in the future, and other researchers have found that this makes participants feel respected (Hoeyer et al 2004;Master et al 2013). Brothers et al (2011) found that participants most preferred an opt-out consent model as opposed to a notice model of consent.…”

Section: Time Consuming For Participants and Researchersmentioning

confidence: 92%

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Differences in preferences for models of consent for biobanks between Black and White women

et al. 2015

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Biobanks are essential resources, and participation by individuals from diverse groups is needed. Various models of consent have been proposed for secondary research use of biospecimens, differing in level of donor control and information received. Data are needed regarding participant preferences for models of consent, particularly among minorities. We conducted qualitative semi-structured interviews with 60 women to examine their attitudes about different models of consent. Recruitment was stratified by race (Black/White) and prior biobank participation (yes/no). Two coders independently coded interview transcripts. Qualitative thematic analysis was conducted using NVivo 10. The majority of Black and White participants preferred Bbroad^consent (i.e., blanket permission for secondary research use of biospecimens), and the second most preferred model for both groups was Bstudyspecific^consent (i.e., consent for each future research study). The qualitative analysis showed that participants selected their most preferred model for 3 major reasons: having enough information, having control over their sample, and being asked for permission. Least preferred was notice model (i.e., participants notified that biospecimens may be used in future research). Attitudes toward models of consent differed somewhat by race and prior biobank participation. Participants preferred models of consent for secondary research use of biospecimens that provided them with both specific and general information, control over their biospecimens, and asked them to give permission for use. Our findings suggest that it will be important for researchers to provide information about future uses of biospecimens to the extent possible and have an explicit permission step for secondary research use.

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Section: Time Consuming For Participants and Researcherssupporting

confidence: 62%

Section: Time Consuming For Participants and Researchersmentioning

confidence: 92%

Differences in preferences for models of consent for biobanks between Black and White women

et al. 2015

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“…They rely on the voluntary participation of the general public, and unwillingness to contribute could compromise the success of some genetic projects. Hypothetical studies, conducted before some of the Biobanks were set up anticipated rates of participation as high as 70%, 4,5 and subsequent findings suggest that the general public are willing to contribute DNA samples to Biobanks despite some concerns about issues such as confidentiality 6 and in the absence of any immediate personal gains. However, formal reports on participation rates are rare.…”

mentioning

confidence: 99%

Consent to DNA collection in epidemiological studies: findings from the Whitehall II cohort and the English Longitudinal Study of Ageing

Meisel

Shankar

Kivimäki

et al. 2012

Genetics in Medicine

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Purpose: Epidemiological studies increasingly include DNA sampling in their protocols, but participation may vary by demographic, psychological, or health characteristics. This analysis explored sociodemographic (age, gender, religion, and education), health-related, and psychological predictors of participation in genetic data collection in two large epidemiological studies: the Whitehall II cohort and the English Longitudinal Study of Ageing. DNA consent in both studies was not obtained on initial enrollment, but after long-standing participation in the study. methods: Study participants who accepted or declined DNA sampling were compared.Results: Very few participants declined DNA sampling; 1.6% in Whitehall II and 1.0% in English Longitudinal Study of Ageing. In both cohorts, participants who declined were more likely to be female, nonwhite, and involved in religious activities; although only the ethnic effect consistently survived multivariate analyses. Decliners also felt less in control of events in their lives than those who consented, and this remained significant in multivariate analysis in the English Longitudinal Study of Ageing sample.conclusion: Consent to DNA sampling was very high in two established UK cohort studies. Differences between the subset of the population unwilling to provide DNA samples and those who consented were modest, although this may be due to the highly selected populations in these cohorts. However, our findings suggest that a greater proportion of decliners would create an important source of selection bias. 2012:14(2):201-206 Genet Med

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“…An alternative for 'one-time general consent' is 'one-time specific consent' (providing consent for specific types of future research at one moment) that provides opportunities to have more control over future uses of tissue, but would stifle research (Greely, 1999;Lauri, 2002;Caulfield et al, 2003;Furness and Nicholson, 2004;Dickenson, 2007;Helft et al, 2007) or requires additional resources (Wheeler et al, 2007). Still others argue that informing patients about future research with tissue is impossible, even in basic terms, and that consent cannot be truly 'informed' (Hoeyer et al, 2004).…”

mentioning

confidence: 99%

A trial of consent procedures for future research with clinically derived biological samples

et al. 2009

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BACKGROUND: The aims of this study were to determine which consent procedure patients prefer for use of stored tissue for research purposes and what the effects of consent procedures on actual consenting behaviour are. METHODS: We offered 264 cancer patients three different consent procedures: 'one-time general consent' (asked written informed consent), 'opt-out plus' (had the opportunity to opt out by a form), or the standard hospital procedure (control group). The two intervention groups received a specific leaflet about research with residual tissue and verbal information. The control group only received a general hospital leaflet including opt-out information, which is the procedure currently in use. Subsequently, all patients received a questionnaire to examine their preferences for consent procedures. RESULTS: In all, 99% of patients consented to research with their residual tissue. In the 'one-time consent' group 85% sent back their consent form. Patients preferred 'opt-out plus' (43%) above 'one-time consent' (34%) or 'opt-out' (16%), whereas 8% indicated that they did not need to receive information about research with residual tissues or be given the opportunity to make a choice. CONCLUSIONS: The 'opt-out plus' procedure, which places fewer demands on administrative resources than 'one-time consent', can also address the information needs of patients.

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Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research

Cited by 174 publications

References 5 publications

Differences in preferences for models of consent for biobanks between Black and White women

Differences in preferences for models of consent for biobanks between Black and White women

Consent to DNA collection in epidemiological studies: findings from the Whitehall II cohort and the English Longitudinal Study of Ageing

A trial of consent procedures for future research with clinically derived biological samples

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