Sample and data sharing barriers in biobanking: consent, committees, and compromises

Colledge, Flora; Persson, Kirsten; Elger, Bernice Simone; Shaw, David

doi:10.1016/j.anndiagpath.2013.12.002

Cited by 28 publications

(22 citation statements)

References 19 publications

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“…13 Many biobanks prefer to seek from potential participants general consent for future unlimited uses of their samples, while others choose to contact enrolled participants to ask them to re-consent to use a previously obtained sample. 18 Those within our study overwhelming supported sample use in studies specific to IBD, the immune system or microbiota. There was less support for studies outside of IBD, and therefore a commitment at the time of informed consent to limit future uses of samples and genetic data to IBD research would be valuable.…”

Section: Discussionmentioning

confidence: 64%

Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking

Long

Cadigan

Cook

et al. 2015

Inflammatory Bowel Diseases

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Background/Aims Little is known about beliefs, understanding and perceptions of biobanking among patients with inflammatory bowel diseases (IBD). We aimed to further understand perceptions of biobanking in the IBD community. Methods Subjects were recruited to participate in a 1:1 telephone interview on their perceptions of the risks and benefits of contributing specimens for research. These interviews informed a survey instrument evaluating perceptions of biobanking within CCFA Partners cohort. We used descriptive statistics to summarize participant responses, and bivariate statistics to compare willingness to participate in biobanking by disease and demographic factors. Results A total of 26 interviews were conducted. Various themes emerged from the interviews and aided in the development of the survey instrument. Concerns focused upon storage, loss of confidentiality, outside uses and life insurance discrimination. A total of 1007 individuals completed the survey. In all, 397 (39.4%) reported they would definitely donate samples, 568 (56.4%) would probably donate, 36 (3.6%) probably not, and 6 (0.6%) would definitely not donate. No significant differences in willingness to donate samples were seen for Crohn’s disease (CD) versus ulcerative colitis (UC) (p=0.25) or for remission versus active disease (p=0.14). For sample-type preference, 956 (89.6%) would donate blood, 997 (93.5 %) saliva and 822 (77.1%) stool. Conclusions Large majorities of patients with IBD demonstrated a willingness to donate specimens for biobanking, albeit with concerns. Addressing these concerns will enhance participation and engagement and create greater alignment between the desires of research participants and the governance structure and operating policies of biobanks.

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Section: Discussionmentioning

confidence: 64%

Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking

Long

Cadigan

Cook

et al. 2015

Inflammatory Bowel Diseases

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“…The first challenge for biobanks consists in finding an equilibrium between the scientific interests of researchers and the expectations of donors. This can be reached by exploiting at best the capabilities and flexibility of current forms of informed consent (Kaye, 2012;Macilotti, 2013;Colledge et al, 2014;D'Abramo, 2015). However, the design of an informed consent able to guarantee the sustainability of resources availability does not solve the issues related with the economic interests usually hidden behind the scientific research.…”

Section: Introductionmentioning

confidence: 99%

Samples and data accessibility in research biobanks: an explorative survey

Capocasa

Anagnostou

D’Abramo

et al. 2015

Preprint

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Biobanks hold human biological samples and/or data giving a crucial contribution to the progress of biomedical research. However, the effective and efficient exploitation of these resources depends on their accessibility. In fact, making bio-resources promptly accessible to all, can favour collaboration among research groups as well as multidisciplinarity. Although this has become a rather common belief, several laboratories still apply secrecy and withholding of samples and data. In this study we conducted a questionnaire based survey in order to investigate sample and data accessibility in research biobanks operating all over the world. 46 out of the 238 contacted biobanks have decided to participate. Most of them provide permission to access their samples (95.7%) and data (85.4%), but free and unconditioned accessibility seems not to be a common practice. The analysis of the biobanks guidelines regarding the accessibility of their resources reveal the importance of three aspects: (i) request for applicants to explain what they would like to do with the required resources; (ii) the role of funding, public or private, in the establishment of fruitful collaborations between biobanks and research labs; (iii) request of co-authorship in order to give access to their data. These results suggest that economic and academic aspects are involved in determining the extent of sharing of samples and data stored in biobanks. As a second step of this study, we investigated the reasons behind the high diversity of the requirements for accessing to biobanks’ resources. The analysis of informative answers suggested that the different modalities of resource accessibility seem to be largely influenced by both social context and legislation of the countries where biobanks operate.

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“…A number of publications have discussed how cost recovery cannot exclusively cover the operational costs of a biorepository. [17][18][19][20][21] Analyses have found that, at most, 5%-25% of operation costs could be recovered through distribution fees because the actual cost of collecting and distributing tissue is prohibitive for the requesting researcher. 22,23 Even with aggressive marketing, the demand for biospecimens varies and is irregular based on individual researcher needs, research funding, and availability of required samples.…”

Section: The Biobank Core Facilitymentioning

confidence: 99%

Sustainability in a Hospital-Based Biobank and University-Based DNA Biorepository: Strategic Roadmaps

Seiler

Eschbacher

Bowser

et al. 2015

Biopreservation and Biobanking

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Sustainability in the biobanking community has recently become an important and oft-discussed issue as biorepositories struggle to balance limited external funding and complex cost recovery models with high operating costs and the desire to provide the highest quality materials and services to the research community. A multi-faceted view of biobanking sustainability requires consideration of operational and social sustainability in addition to the historical focus exclusively on financial sustainability. Planning and implementing this three pillar model creates a well-rounded biorepository that meets the needs of all the major stakeholders: the funders, the patients/depositors, and the researcher recipients. Often the creation of a detailed business plan is the first step to develop goals and objectives that lead down a path towards sustainability. The definition of sustainability and the complexity of a sustainable business plan may differ for each biorepository. The DNASU Plasmid Repository at Arizona State University stores and distributes DNA plasmids to researchers worldwide, and the Biobank Core Facility at St. Joseph's Hospital and Barrow Neurological Institute consents patients and collects, stores, and distributes human tissue and blood samples. We will discuss these two biorepositories, their similar and different approaches to sustainability and business planning, their challenges in creating and implementing their sustainability plan, and their responses to some of these challenges. From these experiences, the biobanks share lessons learned about planning for sustainability that are applicable to all biorepositories.

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Sample and data sharing barriers in biobanking: consent, committees, and compromises

Cited by 28 publications

References 19 publications

Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking

Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking

Samples and data accessibility in research biobanks: an explorative survey

Sustainability in a Hospital-Based Biobank and University-Based DNA Biorepository: Strategic Roadmaps

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