Biobank research: who benefits from individual consent?

Forsberg, Joanna Stjernschantz; Hansson, Mats; Eriksson, Stefan

doi:10.1136/bmj.d5647

Cited by 32 publications

(21 citation statements)

References 17 publications

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“…Research with stored biospecimens can provide substantial societal benefits, including greater understanding of disease mechanisms and discovery of new therapeutic modalities (Davey Smith et al 2005;Hansson et al 2006;Khoury et al 2004;Stjernschantz Forsberg et al 2011). However, participants who donate biospecimens for research may face some risks (Meslin and Quaid 2004;Trinidad et al 2011) including unwanted information disclosure, particularly as genetic data generated in biobank research is increasingly linked to clinical data (Greely 2007;Wendler and Emanuel 2002).…”

Section: Introductionmentioning

confidence: 99%

“…Various models of consent have been proposed for secondary research use of biospecimens (Hansson et al 2006;Mello and Wolf 2010;Petrini 2010;Stjernschantz Forsberg et al 2011;Wendler 2012). Many biobanks have used a notice model of consent, in which individuals are notified that their biospecimens may be used for secondary research purposes, often as part of a general consent form used at the time of donation.…”

Section: Introductionmentioning

confidence: 99%

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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: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2015

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“…Cette brève revue de la littérature souligne la vision positive de la recherche biomédicale [15,23,24]. Avec le développe-ment de tumorothèques virtuelles collaboratives, un nombre suffisant d'échantillons à analyser semble assuré mais un taux de consentement insuffisant peut entraîner une sélection non représentative des échantillons disponibles [25].…”

Section: Resultsunclassified

La recherche biomédicale à l’ère des tumorothèques

et al. 2012

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“…Jag har tidigare argumenterat för att inskränkningar i människors rätt till autonomi (förstått som rätten att fatta beslut i alla frågor som rör en själv) också kan motiveras med utgångspunkt i individen, eftersom ett system som bygger på att man alltid fattar egna beslut omöjliggör eller åtminstone försvårar ett effektivt samarbete där alla bidrar på lika villkor för att uppnå ett gemensamt mål, som var och en har nytta av. [43] Medicinsk forskning som utförs på sparade prover och data är ett bra exempel på detta. Eftersom ingen vet vilken sjukvård han eller hon (eller någon närstående) kommer att behöva i framtiden, 4 och det finns många sjukdomar som inte kan botas eller behandlas, har alla ett intresse av att medicinska framsteg görs på bred front.…”

Section: Integritetunclassified