Governing the research-care divide in clinical biobanking: Dutch perspectives

Boeckhout, Martin; Douglas, Conor M.W.

doi:10.1186/s40504-015-0025-z

Cited by 16 publications

(11 citation statements)

References 71 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…One important example of such engagement strategies has often consisted in the use of population surveys as a form of community consultation (Hemminki et al 2009; Cadigan et al 2013; Ahram et al 2014; Boeckhout and Douglas 2015). …”

Section: Introductionmentioning

confidence: 99%

Young people’s awareness on biobanking and DNA profiling: results of a questionnaire administered to Italian university students

Tozzo

Fassina

Caenazzo

2017

Life Sci Soc Policy

View full text Add to dashboard Cite

Current policy approaches to social and ethical issues surrounding biobanks manifest lack of public information given by researchers and government, despite the evidence that Italian citizens are well informed about technical and other public perspectives of biotechnologies. For this reason, the focus of our survey was to interview our University’s students on these aspects. The sample consisted of Padua University students (N = 959), who were administered a questionnaire comprising eight questions covering their knowledge about biobanks, their perception of the related benefits and risks, their willingness to donate samples to a biobank for research purposes, their attitude to having their own DNA profile included in a forensic DNA database, and the reasons behind their answers. The vast majority of the students invited to take part in the survey completed the questionnaire, and the number of participants sufficed to be considered representative of the target population. Despite the respondents’ unfamiliarity with the topics explored, suggested by the huge group of respondents answering “I don’t know” to the questions regarding Itaian regulation and reality, their answers demonstrate a general agreement to participate in a biobanking scheme for research purposes, as expressed by the 91% of respondents who were reportedly willing to donate their samples. As for the idea of a forensic DNA database, 35% of respondents said they would agree to having their profile included in such a database, even if they were not fully aware of the benefits and risks of such action.This study shows that Italian people with a higher education take a generally positive attitude to the idea of donating biological samples. It contributes to empirical evidence of what Italy’s citizens understand about biobanking, and of their willingness to donate samples for research purposes, and also to have their genetic profiles included in a national forensic DNA database. Our findings may have clear implications for the policy discussion on biobanks in Italy, in particular it is important to take into account the Italian population’s poor consciousness of forensic DNA database, in order to ensure a better interaction between policy makers and citizens and to make them more aware of the need to balance the individual’s rights and the security of society.

show abstract

Section: Introductionmentioning

confidence: 99%

Young people’s awareness on biobanking and DNA profiling: results of a questionnaire administered to Italian university students

Tozzo

Fassina

Caenazzo

2017

Life Sci Soc Policy

View full text Add to dashboard Cite

show abstract

“…Fourth, principles and practical requirements of research ethics will also need to be updated [18]. The paradigm of participant protection stands at the heart of traditional research ethics.…”

Section: Integrating Care and Research: Aspects To Considermentioning

confidence: 99%

Patients to learn from: on the need for systematic integration of research and care in academic health care

et al. 2017

View full text Add to dashboard Cite

Patients suffering from rare, extreme or extremely complex sets of symptoms have something to expect from efforts to improve care through research. Biomedical research and care have often been approached as distinct worlds which are and should be only loosely connected. For observational research focusing on data drawn from real-world settings, however, that approach is found wanting. Integrating research and care responsibly is the main challenge instead. Integrated IT infrastructures facilitating Personalized medicine and Big Data are crucial components of a learning health care system, in which patients regularly play a double role: as individuals to be treated and as cases to learn from. Drawing on the example of the Dutch Parelsnoer Institute (PSI), a national biobanking and IT infrastructure integrated with clinical care procedures, this article outlines the reforms that are needed. Systematic integration of research and care offers a promising avenue, provided that a number of conditions are met: data and IT infrastructures will require overhauls in order to facilitate secure, high-quality data integration between research and care; institutional focus is needed to bring patient populations and expertise together; ethical frameworks and approaches for integrating research and care responsibly require further elaboration; clinical procedures and professional responsibilities may need to be adapted in order to accommodate research requirements in clinical processes; and involvement of patients and other stakeholders in design and research priority setting is needed to further the goals of real-world and patient relevance. Relevance for patients: Integrating research and care in academic medicine in a more systematic fashion offers a promising perspective to current and future patients. In order to live up to these promises, research and care should be integrated more systematically in academic health science, with patients being included as research participants by default. Data and tissue infrastructures and facilities can provide a platform for doing so. At the same time, many issues remain to be settled. New ethical ways and means for protecting and respecting patient-participants in such a double role are also needed in this respect. In this way a deeper transformation is at stake as well: a change towards a setting in which patients fully take center stage in debate and action on the future of biomedicine.

show abstract

“…With perceived lack of support along with consistent reports of considerable paperwork [19,20], it is understandable that administrative activities that are not directly related to patient outcomes are deprioritised. Overall, the success of biobanking under an HCP-led model will be dependent on how well the consent process operates within existing workflows [21].…”

Section: Introduction To Healthcare Professionals' Involvement In Biomentioning

confidence: 99%

Enlisting the willing: A study of healthcare professional–initiated and opt-in biobanking consent reveals improvement opportunities throughout the registration process

Fradgley

Chong

Cox

et al. 2018

European Journal of Cancer

View full text Add to dashboard Cite

Biobanking consent processes should accord with patients' preferences and be offered in a consistent and systematic manner. However, these aims can be difficult to achieve under healthcare professionals' (HCPs) time-constrained workflows, resulting in low participation rates. This current perspective provides a brief overview of HCP involvement in consent and reports new data on participant attrition at each step of the biobanking consent process as experienced by 113 patients at an Australian tertiary cancer centre. To determine attrition in this HCP-driven consent process, we reviewed medical records for the following events: inclusion of biobanking consent forms; visible patient and HCP signatures; consent status selected (decline or accept) and specimen registration with local biobank. Accessible medical records revealed the following data: 75 of 85 records included viewable forms; 22 of 85 records included patient and 19 of 85 included HCP signatures; 15 of 85 records included signed and completed forms and 3 of 85 had samples banked with annotated clinical data. We compared these data with self-reported experiences of being approached to participate by HCPs. Of the 15 participants (17.6%) who successfully completed consent, only five could recall being asked and providing consent. The low enrolment rate is a considerable lost opportunity because most patients (59%) who were not asked to participate indicated they would have consented if asked. Furthermore, in comparing self-reported experiences with medical records, we believe cancer patients' preferences for participation are mismatched with actual biobanking enrolment, which has considerable attrition at each step in the consent process.

show abstract

Governing the research-care divide in clinical biobanking: Dutch perspectives

Cited by 16 publications

References 71 publications

Young people’s awareness on biobanking and DNA profiling: results of a questionnaire administered to Italian university students

Young people’s awareness on biobanking and DNA profiling: results of a questionnaire administered to Italian university students

Patients to learn from: on the need for systematic integration of research and care in academic health care

Enlisting the willing: A study of healthcare professional–initiated and opt-in biobanking consent reveals improvement opportunities throughout the registration process

Contact Info

Product

Resources

About