High participation rate among 25 721 patients with broad age range in a hospital-based research project involving whole-genome sequencing – the Lausanne Institutional Biobank

Bochud, Murielle; Currat, Christine; Chapatte, Laurence; Roth, Cindy; Mooser, Vincent

doi:10.4414/smw.2017.14528

Cited by 8 publications

(11 citation statements)

References 35 publications

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“…A purposive sampling framework for the interview was drawn up based on patient characteristics: decision regarding participation in the BIL (coded participation, anonymous participation or refusal to participate), sex, age and mode of admission to Lausanne University Hospital (emergency or planned procedure). This sampling strategy was consistent with the findings of Bochud et al (2017) that highlighted that age, sex and mode of admission in the BIL induced significant differences in whether patients accepted to participate.…”

Section: Patient Selection and Methods Of Approachsupporting

confidence: 85%

“…Seventeen of the 22 patients were asked for broad consent whilst hospitalized. This rate is consistent with Bochud et al (2017) and with the broad consent procedure in place at the time of our study.…”

Section: Interviewees' Characteristicssupporting

confidence: 88%

“…Many scholars (Hawkins and O'Doherty 2010;McNamara 2007;O'Neill 2004;Tutton et al 2004) assume that trust is an essential determinant of participants' decisions to contribute to biobanks. These data and the BIL's high consent rates at the time of this research (Bochud et al 2017) suggest that building a trust-relationship was an essential element of recruiters' work.…”

Section: Discussionmentioning

confidence: 72%

“…Patients could also indicate whether they would like to be recontacted to receive individual clinically relevant research results. Between January 1, 2013 and June 31, 2015, 79% of the 25,721 people asked to sign the BIL broad consent agreed to coded participation and 5.5% accepted the anonymous form; 15% declined to participate in the BIL (Bochud et al 2017).…”

Section: Introductionmentioning

confidence: 99%

See 3 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: Patient Selection and Methods Of Approachsupporting

confidence: 85%

Section: Interviewees' Characteristicssupporting

confidence: 88%

Section: Discussionmentioning

confidence: 72%

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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“…Secondly, almost two thirds of patients eligible were excluded because they did not sign the CGR. This might have created a selection bias, as younger people tend to provide consent more frequently (27); still, the direction and magnitude of the bias are hard to estimate. Thirdly, our epidemiological study was limited in the identification of important clinical and biological determinants of hyponatremia (volume status, plasma and urine electrolytes, and osmolality), which are critical to understand its diagnostic, therapeutic, and prognosis significations.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Prevalence and Description of Hyponatremia in a Swiss Tertiary Care Hospital: An Observational Retrospective Study

Vollenweider

Kissling

et al. 2020

Front. Med.

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Background: Hyponatremia (serum sodium concentration <135 mEq/L) is the most common electrolyte abnormality among hospitalized patients. Our aim was to study the epidemiology of hyponatremia in hospitalized patients, as well as the short-term mortality rates, the length of stay (LOS), and associated hospital costs. Methods: This retrospective cohort study included 6,539 hospitalizations in the internal medicine ward of a Swiss tertiary-care teaching hospital between January 1, 2012, and December 31, 2018 (42.7% women, mean age 69 years). Using serum sodium concentration, we identified hospitalizations with hyponatremia and calculated the prevalence of overall hyponatremia, admission hyponatremia (AH), hospital-acquired hyponatremia (HAH), and persistent hyponatremia (PH) at discharge. We also studied the impact of hyponatremia on 30-day readmissions, in-hospital and 30-day mortality, and hospital LOS and costs, using multivariable logistic regression and Cox proportional hazards models, with normal natremia as reference.

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Biobanks and Individual Health Related Findings: from an Obstacle to an Incentive

2021

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Despite the benefits biobanks are expected to bring, there have recently been concerns raised that the public and private non-profit biobanks still prevailing in Europe often fail to reach their initial objectives due to a variety of reasons, including a shortage of funding and insufficient utilization of collections. The necessity to find new ways to manage biobanks has been clearly recognized and one way to do this is to follow the success of some commercial direct-to-consumer genetic testing (DTC GT) companies in the biobanking field. This paper is focused on a double role the return of individual health related findings (IHRF) detected through the biobanking activities can play in the management of biobanks. These findings can be seen as an untapped opportunity to offer health related information to biobank participants. At the same time, the IHRF policy can also serve as an additional tool that can improve biobanking governance. This paper aims to consider diverse IHRF approaches as well as to explore some key ethical concerns related to them. In particular, it reveals how different accounts of personal autonomy shape consent policies related to IHRF and emphasizes ethical controversies related to the commercial DTC GT initiatives as well as some non-profit biobanks.

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High participation rate among 25 721 patients with broad age range in a hospital-based research project involving whole-genome sequencing – the Lausanne Institutional Biobank

Abstract: A large proportion of adult patients, even among the elderly, are willing to actively participate and receive incidental findings in this systematic hospital-based precision and genomic medicine research program with broad consent.

Cited by 8 publications

References 35 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

Prevalence and Description of Hyponatremia in a Swiss Tertiary Care Hospital: An Observational Retrospective Study

Biobanks and Individual Health Related Findings: from an Obstacle to an Incentive

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