Return of research results from genomic biobanks: cost matters

Bledsoe, Marianna J; Clayton, Ellen Wright; McGuire, Amy L.; Grizzle, William E.; O’Rourke, P. Pearl; Zeps, Nikolajs

doi:10.1038/gim.2012.105

Cited by 55 publications

(42 citation statements)

References 5 publications

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“…A number of recent studies have identifi ed inconsistencies between international norms and guidelines on the return of IRR and IF, and the practices associated with biobanking. The studies note that there is no international consensus on the ways in which information from biobanking research should be returned to individuals (Wolf, 2013;Zawati & Knoppers, 2012;Bledsoe et al, 2013;Forsberg et al, 2009). Many of these studies have called for international guidelines regarding the return of IRR and IF (Zawati & Knoppers, 2012).…”

Section: Biobanks and Ambivalent Research Settingsmentioning

confidence: 99%

Rethinking Therapeutic Misconception in Biobanking – Ambivalence Between Research and Treatment

Tupasela

Snell

Cañada

2017

S&TS

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Some authors have noted that in biobank research participants may be guided by what is called therapeutic misconception, whereby participants attribute therapeutic intent to research procedures. This article argues that the notion of therapeutic misconception is increasingly less justifi ed when evaluating biobanks. We present four examples taken from recent developments in biobanking to argue why the notion of therapeutic misconception is problematic in that biobanking practices are increasingly seeking to bridge research and treatment in diff erent ways. In this article we explore examples where the boundary between research and treatment become increasingly blurred, as well as the contextual signifi cance of healthcare systems and their prevailing ideologies in healthcare management. We argue that biobanking practices are challenging the use value, as well as the philosophical and ethical underpinnings for the need to separate research and treatment, and thus the notion of therapeutic misconception in the fi rst place. We call this tension between research and treatment ambivalent research advancement to highlight the diffi culties that various actors have in managing such shifts within the healthcare-research systems.

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Section: Biobanks and Ambivalent Research Settingsmentioning

confidence: 99%

Rethinking Therapeutic Misconception in Biobanking – Ambivalence Between Research and Treatment

Tupasela

Snell

Cañada

2017

S&TS

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“…10 ARGUMENTS AGAINST DISCLOSURE Practical issues make disclosure unfeasible It is sometimes claimed that it would be too time consuming and costly to contact research participants, and that disclosure would therefore inhibit important research. 11 It has also been argued that variability in biobanks and practical implementation issues (biobanks vary in scale, biobank projects take a variety of forms, samples may be drawn from healthy participants or from those with disease) make it difficult to have a 'one-size-fits-all' approach to disclosing individual results. Moreover, the return of individual results to participants requires that biobanks retain links to identifying information, which implies the risk of breaching confidentiality.…”

Section: Disclosure Promotes Autonomymentioning

confidence: 99%

Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks

Viberg¹,

Hansson²,

Langenskiöld³

et al. 2015

Ethics, Law and Governance of Biobanking

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Incidental findings (IFs) are acknowledged to be among the most important ethical issues to consider in biobank research. Genome-wide association studies and disease-specific genetic research might reveal information about individual participants that are not related to the research purpose, but may be relevant to those participants' future health. In this article, we provide a synopsis of arguments for and against the disclosure of IFs in biobank research. We argue that arguments that do not distinguish between communications about pathogenic conditions and complex genetic risk for diseases fail, as preferences and decisions may be far more complex in the latter case. The principle of beneficence, for example, often supports the communication of incidentally discovered diseases, but if communication of risk is different, the beneficence of such communication is not equally evident. By conflating the latter form of communication with the former, the application of ethical principles to IFs in biobank research sometimes becomes too easy and frictionless. Current empirical surveys of people's desire to be informed about IFs do not provide sufficient guidance because they rely on the same notion of risk communication as a form of communication about actual health and disease. Differently designed empirical research and more reflection on biobank research and genetic risk information is required before ethical principles can be applied to support the adoption of a reasonable and comprehensive policy for handling IFs.

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“…A reduced requirement for researchers to communicate with biobanks may therefore be an unintended consequence of increased pressures upon biobanks to achieve cost recovery. There is currently heightened interest in the role of biobanks in managing returned research findings and incidental results (Bledsoe et al 2013;Wolf et al 2012). At present, these discussions pertain to the return of clinically significant information (Bledsoe et al 2013;Wolf et al 2012) and do not yet extend to measures of biospecimen quality and suitability for purpose.…”

Section: Biospecimen Qc Reporting From Researchers To Biobanksmentioning

confidence: 99%

“…There is currently heightened interest in the role of biobanks in managing returned research findings and incidental results (Bledsoe et al 2013;Wolf et al 2012). At present, these discussions pertain to the return of clinically significant information (Bledsoe et al 2013;Wolf et al 2012) and do not yet extend to measures of biospecimen quality and suitability for purpose. Nonetheless, any focus upon researcher-biobank communication is welcome and should highlight how little attention this topic has previously received.…”

Section: Biospecimen Qc Reporting From Researchers To Biobanksmentioning

confidence: 99%

A critical analysis of cancer biobank practices in relation to biospecimen quality

2015

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There are concerns that a substantial proportion of published research data is not reproducible, which may partially explain the frequent failure to translate pre-clinical results to clinical care. High-quality cancer biospecimens are needed for robust, reproducible research findings, with most researchers obtaining these specimens from cancer biobanks or tumour banks. This review provides an overview of the types of quality control (QC) activities conducted within cancer biobanks that pertain to biospecimen quality and of biospecimen quality reporting tools, including SPREC and BRISQ. We examine how QC assay results and other biospecimen data are communicated from biobanks to researchers, and whether these activities lead to improved biospecimen quality reporting within the literature and/or to improved research outcomes. We also discuss operational factors that limit QC activities within biobanks and evidence gaps requiring further research. In summary, whereas the provision of quality biospecimens is a common aim of cancer biobanks, QC activities remain underreported and are rarely discussed in the literature, compared with other aspects of biobank operations. Further research is required to determine how biobanks can most efficiently optimise biospecimen quality, and how communication between biobanks and researchers can be improved.

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Return of research results from genomic biobanks: cost matters

Cited by 55 publications

References 5 publications

Rethinking Therapeutic Misconception in Biobanking – Ambivalence Between Research and Treatment

Rethinking Therapeutic Misconception in Biobanking – Ambivalence Between Research and Treatment

Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks

A critical analysis of cancer biobank practices in relation to biospecimen quality

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