Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data

Barazzetti, Gaia; Bosisio, Francesca; Koutaïssoff, Daria; Spencer, Brenda

doi:10.1038/s41431-020-0585-0

Cited by 20 publications

(15 citation statements)

References 50 publications

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“…Participants in the BIL accepted to participate without knowing the nature and aim of future research on their data and biological material and waived their right to opt in or out of future research. Literature and data from past (Barazzetti et al 2020) and present findings suggest that participants may refer to gift rationales in an attempt to convey the fundamental values and goals of their decision whether to participate. This assumption was not specifically addressed in our study but was spontaneously reported by recruiters and conveyed by patients during the interviews, suggesting that patients may feel the need to address such values.…”

Section: Fundamental Goals In Broad Consentmentioning

confidence: 58%

“…In a previous paper (Barazzetti et al 2020), we argued that participation in the BIL may, to some extent, be understood as a gift to the institution. We would argue here that patients seem to refer to gift rationales as a way to convey their fundamental goals whilst deciding whether to participate or not to a biobank in the presence of a recruiter.…”

Section: Fundamental Goals In Broad Consentmentioning

confidence: 99%

“…Since its establishment, the BIL has deployed constant efforts in order to improve its broad consent procedure (see box 1 in Barazzetti et al 2020 for an overview). At the time of this study (2013–2014), two broad consent procedures were used at the same time.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Patients’ decision to contribute to a biobank in the light of the patient-recruiter relationship—a qualitative study of broad consent in a hospital setting

et al. 2020

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Findings from recent studies show that the relationship developed with the particular researcher asking for broad consent plays an important role in the participant's willingness to give consent. Interviews and focus groups were conducted in order to present a description and analysis of meetings in which broad consent took place and to examine the role of recruiters in the patients' decision-making and in building trust in the Lausanne University Hospital Institutional Biobank (BIL). Our findings suggest that patient broad consent to biobanking is strongly related to its setting. BIL recruiters' were aware of their role as ambassadors of the BIL and their responsibility towards patients. Patient interviewees were sensitive to the quality of the information delivered, the timing of the consent request and the recruiters' attitudes and behaviours, including the presence of the white coat. Participating in the BIL also seemed to reinforce the patient's self-esteem and perceived efficacy, particularly since they are themselves ill and inactive when requested to participate. Recruiters and participants report that participation may be motivated by fundamental (existential) goals. Organisational factors also affected recruiters' activity and the broad consent procedure raising several ethical issues. This qualitative study suggests that biobanking based on information-based models of decision-making might need to be re-evaluated in order to improve broad consent. Our findings have implications for the practice of broad consent and patient autonomy, as well as for the recruiters' role and training.

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Section: Fundamental Goals In Broad Consentmentioning

confidence: 58%

Section: Fundamental Goals In Broad Consentmentioning

confidence: 99%

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Patients’ decision to contribute to a biobank in the light of the patient-recruiter relationship—a qualitative study of broad consent in a hospital setting

et al. 2020

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“…From this immortality arises new ethical challenges for healthcare professionals, patients and families alike. For example, the lifelong relevance and the breadth of inferences that can be drawn from genomic data mean that ensuring consent is sufficiently informed for the myriad of possible future interpretations is difficult to achieve at the point at which the sample is taken [2][3][4][5]. The evolving knowledge-base causes challenges for laboratory staff in determining when patient data should be reinterpreted, and the implications this may have for clinical care [6].…”

Section: Introductionmentioning

confidence: 99%

Immortal data: a qualitative exploration of patients’ understandings of genomic data

et al. 2023

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As ambitions to ‘mainstream’ genetic and genomic medicine in the UK advance, patients are increasingly exposed to information about genomic data. Unlike the results of many other medical investigations which are linked to the time of sample collection, genomic testing provides immortal data that do not change across time, and may have relevance for relatives and generations far beyond the patient’s own lifespan. This immortality raises new ethical challenges for healthcare professionals, patients and families alike, such as ensuring consent for possible future interpretations; determining when genomic data are best sought (at birth, on illness etc) and reinterpreted; and balancing the confidentiality of patients and duties of care towards others. This paper reports on qualitative work exploring the perspectives of patients and relatives participating in genomic testing, and suggests that their engagements with this immortality are shaped by: the contrast between the simplicity of sample provision and information gathered; understandings of heritability; and notions of genomic data as a collective resource. We discuss the implications this holds for practice and argue that the immortality of genomic data must take a more prominent position in patient and healthcare professional interactions.

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“…This immortality results in new ethical challenges for healthcare professionals, patients and families alike. For example, the evolving interpretation of genomic data means that ensuring that consent from patients is su ciently informed for the myriad of possible future interpretations is di cult to achieve at the point at which the sample is taken [2][3][4][5]. Equally, the evolving knowledge-base causes challenges for laboratory staff in determining when patient data should be reinterpreted, and the implications this may have for clinical care [6].…”

Section: Introductionmentioning

confidence: 99%

Immortal Data: A qualitative exploration of patients’ understandings of genomic data

Lyle

Weller

Horton

et al. 2022

Preprint

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As ambitions to ‘mainstream’ genetic and genomic medicine in the UK advance, genomic data is becoming increasingly familiar to patients. Unlike the results of many other medical investigations which are linked to the time of sample collection, genomic testing provides immortal data that do not change across time, and may have relevance for relatives and generations far beyond the patient’s own lifespan. This immortality raises new ethical challenges for healthcare professionals, patients and families alike, such as ensuring consent for possible future interpretations; determining when data should be reinterpreted; balancing the confidentiality of patients and duties of care towards others. Given the range of ethical challenges it raises, it is essential that the immortality of genomic data is brought to the fore. This paper reports on a qualitative study exploring the perspectives of patients and relatives participating in genomic testing, and suggests that their engagements with this immortality are shaped by: the simplicity of sample provision; understandings of heritability; and notions of genomic data as a collective resource. We discuss the implications this holds for practice and argue that the immortality of genomic data must take a more prominent position in patient and health care professional interactions.

show abstract

Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data

Cited by 20 publications

References 50 publications

Patients’ decision to contribute to a biobank in the light of the patient-recruiter relationship—a qualitative study of broad consent in a hospital setting

Patients’ decision to contribute to a biobank in the light of the patient-recruiter relationship—a qualitative study of broad consent in a hospital setting

Immortal data: a qualitative exploration of patients’ understandings of genomic data

Immortal Data: A qualitative exploration of patients’ understandings of genomic data

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