«If you give them your little finger, they’ll tear off your entire arm»: losing trust in biobank research

Ursin, Lars Øystein; Ytterhus, Borgunn; Christensen, Erik; Skolbekken, John-Arne

doi:10.1007/s11019-020-09969-w

Cited by 14 publications

(19 citation statements)

References 25 publications

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“…The conducted research confirmed the relationship between the willingness to donate biological material to a biobank and trust, selected preferred values and other specific personal features. Earlier research has also suggested a relationship between donation and trust in the context of biobanking [ 18 , 30 , 31 , 45 ]. Our research, however, revealed that not only general trust in people was important but specific kinds of trust, such as trust in scientists and doctors, play a more important role.…”

Section: Discussionmentioning

confidence: 99%

“…In our review of 61 previous social research studies, it was found that donation is a complex process that may be determined by psychosocial factors such as people’s knowledge and positive opinions of biobanks, trust, beliefs about the expected benefits, access to information about the research, donors’ cultural and religious beliefs and privacy protection [ 21 , 22 , 23 , 24 , 25 , 26 , 27 ]. A few studies reported donors’ motivations [ 27 , 28 , 29 , 30 , 31 ]. It is also known that knowledge about psychosocial attitudes toward biobanking may increase the effectiveness of the recruitment process [ 32 ].…”

Section: Introductionmentioning

confidence: 99%

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Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables

Pawlikowski

Wiechetek

Majchrowska

2022

IJERPH

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Over the past few decades, there has been a dynamic development of biobanks collecting human biological material and data. Advances in biomedical research based on biobanks, however, are highly dependent on the successful enrolment and participation of human subjects. Therefore, it is crucial to recognise those factors affecting the willingness of individuals to participate in biomedical research. There are very few studies pointing to the role of trust, preferred values and specific psychological factors. The aim of our study was the analysis of the most significant relationships between selected moral and psychological variables (i.e., preferred values, types of trust and personality) and willingness to donate biological material to biobanks. The research was carried out on a Polish representative national sample of 1100 people over 18 years of age. Statistical methods with regression models were used during the analyses. The willingness to donate samples to a biobank was associated with different types of trust and specific values. Based on regression analysis, the most important factors related to the willingness to donate material to biobanks seemed to be (1) trust towards scientists and doctors and (2) selected preferred values such as knowledge, self-development and tradition. Other values or personality traits did not seem to be as important in this context. The obtained results can be useful in building the social responsibility of biobankers and scientists, issuing more appropriate opinions by research ethics committees and planning better communication strategies between participants and biobanks.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables

Pawlikowski

Wiechetek

Majchrowska

2022

IJERPH

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“…Our ndings here report on the participants' experiences and thoughts on how CO90s engaged with them and the resultant relationship and trust they developed for it. This kind of trust that participants develop for their longitudinal cohort studies has been mentioned elsewhere [37] including in other studies [38] such as the Irish Longitudinal Study of Ageing (TILDA) which reported that their participants felt they had a bond with the study and a special rapport with data collectors and that this impacted on participant retention [39]. Consistent with previous writings [40] we have evidenced here that cohort study participation should not be considered a unidirectional activity, the interviews reported here demonstrate that the perceived reciprocity contributed to sustaining the long-term commitment required for a longitudinal study.…”

Section: Discussionmentioning

confidence: 75%

What does engagement mean to participants in longitudinal cohort studies? A qualitative study

Ochieng

Minion

Turner

et al. 2021

Preprint

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Background Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies their involved in may promote their recruitment and retention within the studies. It is also thought that participant input can improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study. Methods Participants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique. Results Participants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study. Conclusions The experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt -in receiving gifts from CO90s and other times more nuanced- for example through CO90s ethical conduct. This perceived reciprocity aligns well with Maussian conception of gifting and in this case espoused participants’ trust in the cohort resulting in a unique participant-cohort study relationship.

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“…Our findings here report on the participants’ experiences and thoughts on how CO90s engaged with them and the resultant relationship and trust they developed for it. This kind of trust that participants develop for their longitudinal cohort studies has been mentioned elsewhere [ 58 ] including in other studies [ 59 ] such as the Irish Longitudinal Study of Ageing (TILDA) which reported that their participants felt they had a bond with the study and a special rapport with data collectors and that this impacted on participant retention [ 60 ]. Consistent with previous writings [ 30 ] we have evidenced here that cohort study participation should not be considered a unidirectional activity, the interviews reported here demonstrate that the perceived reciprocity contributed to sustaining the long-term commitment required for a longitudinal study.…”

Section: Discussionmentioning

confidence: 96%

What does engagement mean to participants in longitudinal cohort studies? A qualitative study

et al. 2021

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Background Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study. Methods Participants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique. Results Participants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study. Conclusion The experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants’ expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies.

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«If you give them your little finger, they’ll tear off your entire arm»: losing trust in biobank research

Cited by 14 publications

References 25 publications

Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables

Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables

What does engagement mean to participants in longitudinal cohort studies? A qualitative study

What does engagement mean to participants in longitudinal cohort studies? A qualitative study

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