Getting a Fair Share: Attitudes and Perceptions of Biobank Stakeholders Concerning the Fairness of Sample Sharing

Colledge, Flora; Elger, Bernice Simone

doi:10.1111/bioe.12134

Cited by 7 publications

(5 citation statements)

References 7 publications

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“…Our choice of participants was further driven by our interest in determining from the researcher’s perspective the factors that influenced research using ethnically and racially diverse human biospecimens. This level of response was missing from the literature, there were a few reports polling biorepository directors [ 5 , 49 , 56 , 57 ] but virtually nothing surveying principal investigators/researchers. Our survey was therefore designed to be short and administered via an electronic web interface, as we recruited participants from an NIH database of funded investigators (see below).…”

Section: Methodsmentioning

confidence: 99%

To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region

Oushy

Palacios

Holden³

et al. 2015

PLoS ONE

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BackgroundCancer health disparities research depends on access to biospecimens from diverse racial/ethnic populations. This multimethodological study, using mixed methods for quantitative and qualitative analysis of survey results, assessed barriers, concerns, and practices for sharing biospecimens/data among researchers working with biospecimens from minority populations in a 5 state region of the United States (Arizona, Colorado, New Mexico, Oklahoma, and Texas). The ultimate goals of this research were to understand data sharing barriers among biomedical researchers; guide strategies to increase participation in biospecimen research; and strengthen collaborative opportunities among researchers.Methods and PopulationEmail invitations to anonymous participants (n = 605 individuals identified by the NIH RePORT database), resulted in 112 responses. The survey assessed demographics, specimen collection data, and attitudes about virtual biorepositories. Respondents were primarily principal investigators at PhD granting institutions (91.1%) conducting basic (62.3%) research; most were non-Hispanic White (63.4%) and men (60.6%). The low response rate limited the statistical power of the analyses, further the number of respondents for each survey question was variable.ResultsFindings from this study identified barriers to biospecimen research, including lack of access to sufficient biospecimens, and limited availability of diverse tissue samples. Many of these barriers can be attributed to poor annotation of biospecimens, and researchers’ unwillingness to share existing collections. Addressing these barriers to accessing biospecimens is essential to combating cancer in general and cancer health disparities in particular. This study confirmed researchers’ willingness to participate in a virtual biorepository (n = 50 respondents agreed). However, researchers in this region listed clear specifications for establishing and using such a biorepository: specifications related to standardized procedures, funding, and protections of human subjects and intellectual property. The results help guide strategies to increase data sharing behaviors and to increase participation of researchers with multiethnic biospecimen collections in collaborative research endeavorsConclusionsData sharing by researchers is essential to leveraging knowledge and resources needed for the advancement of research on cancer health disparities. Although U.S. funding entities have guidelines for data and resource sharing, future efforts should address researcher preferences in order to promote collaboration to address cancer health disparities.

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Section: Methodsmentioning

confidence: 99%

To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region

Oushy

Palacios

Holden³

et al. 2015

PLoS ONE

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“…Several empirical studies demonstrate heterogeneous and partly insufficient application of governance procedures in practice [9,10,17,18]. In order to improve this situation, it is essential to have a comprehensive understanding of the currently applied spectrum of governance procedures and elements.…”

Section: What Is the Current Practice Of Governance?mentioning

confidence: 99%

Current practices for access, compensation, and prioritization in biobanks. Results from an interview study

et al. 2018

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Human biological materials and related data stored in biobanks are valuable resources for biomedical research. Transparent, effective, and efficient governance structures and procedures for access, compensation, and priority setting are needed, but recent debates indicate challenges in the practical application of such governance processes. This study aimed to assess the practical experiences and attitudes of biobank experts regarding the governance of biosample access, prioritization, and compensation. Qualitative, semi-structured telephone interviews were conducted with 20 biobank directors from eight countries. Respondents highlighted the need for sound governance structures in order to ensure acceptance by all stakeholders (patients/donors, researchers, research funders, public, and others). They stressed practical difficulties in trying to make best use of biomaterials. As biobanks often form part of larger academic and clinical settings, the different and sometimes conflicting interests of researchers, clinicians, patients, funders, and biobank staff currently affect the governance of access decisions. Investments such as intellectual input, financial, and human resources need to be compensated adequately. Biobanks thereby have a dual role stewarding the hosted biosamples and acting as a service provider for local researchers from universities or hospitals. In order to facilitate efficient use of human biological materials, greater harmonization of at least minimum standards for access and compensation are required at both a national and an international level.

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“…The issue of fair distribution of samples was a subject which promoted intense discussion among respondents, and has been addressed in detail in a separate paper (Colledge and Elger 2015). Seven individuals stated that they felt that situations of unfairness existed in biobanking; of these, four stated explicitly that lack of fairness could hinder sample sharing.…”

Section: Fairnessmentioning

confidence: 99%

Obstacles to Widening Biosample Research

2017

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Switzerland has an excellent culture of medical research and is a melting pot for medical experts with international expertise. Nevertheless, as in other countries, the resources available to medical researchers are not being fully used. Biological samples, which enable a host of medical research studies to be carried out without invasive methods involving patients, are frequently left unused or forgotten. The aim of this study is to examine the experiences of biobank stakeholders regarding the use or underuse of biosamples, in order to develop paths to optimize biosample research. Interviews were carried out with 36 biobank stakeholders in Switzerland concerning their experiences with biosample use, and the possible obstacles at each stage of the process. Interviews revealed that standard operating procedures were the most frequently cited obstacle, although these were not judged to be severe hindrances. Despite a stated desire to develop biosample research, skepticism of sharing networks and wariness of new partnerships were strong themes. Biobanking still functions as an emerging field, in which exchange practices have yet to be established at the national and international levels. Sample exchange continues to function largely based on personal contacts; while this is an inherent feature of competitive medical research, opportunities for large-scale studies may be lost due to excessive caution.

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Getting a Fair Share: Attitudes and Perceptions of Biobank Stakeholders Concerning the Fairness of Sample Sharing

Cited by 7 publications

References 7 publications

To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region

To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region

Current practices for access, compensation, and prioritization in biobanks. Results from an interview study

Obstacles to Widening Biosample Research

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