Biobanks need publicity

Gaskell, George; Gottweis, Herbert

doi:10.1038/471159a

Cited by 77 publications

(61 citation statements)

References 2 publications

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“…34,35 And while it is true that several studies Table 2 Scientists' statements advocating for a general or broad consent approach Scientists' perspectives on consent for biobanking Z Master et al have found that many in the general public and patient participants prefer general consent, this view is certainly not unanimous. Studies have found that many desire to have some form of ongoing control, such as a tiered or re-consent approach.…”

Section: (Participant 5)mentioning

confidence: 99%

Scientists’ perspectives on consent in the context of biobanking research

2014

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Most bioethics studies have focused on capturing the views of patients and the general public on research ethics issues related to informed consent for biobanking and only a handful of studies have examined the perceptions of scientists. Capturing the opinions of scientists is important because they are intimately involved with biobanks as collectors and users of samples and health information. In this study, we performed interviews with scientists followed by qualitative analysis to capture the diversity of perspectives on informed consent. We found that the majority of scientists in our study reported their preference for a general consent approach although they do not believe there to be a consensus on consent type. Despite their overall desire for a general consent model, many reported several concerns including donors needing some form of assurance that nothing unethical will be done with their samples and information. Finally, scientists reported mixed opinions about incorporating exclusion clauses in informed consent as a means of limiting some types of contentious research as a mechanism to assure donors that their samples and information are being handled appropriately. This study is one of the first to capture the views of scientists on informed consent in biobanking. Future studies should attempt to generalize findings on the perspectives of different scientists on informed consent for biobanking.

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Section: (Participant 5)mentioning

confidence: 99%

Scientists’ perspectives on consent in the context of biobanking research

2014

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“…Current knowledge is scant concerning the perspectives of the general public and their support for biobank research and the establishment of national biobank infrastructures (25). Even in countries where biobank research is relatively known to the general public, little public debate has taken place surrounding biobank research, which makes it difficult for researchers to determine the wishes and attitudes of the various populations regarding the use of biological samples and data.…”

Section: Societal and Political Challengesmentioning

confidence: 99%

ELSI challenges and strategies of national biobank infrastructures

Budin‐Ljøsne¹,

Harris²,

Kaye³

et al. 2012

Nor J Epidemiol

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National biobank infrastructures are now being implemented in several European countries. Individually, biobanks are invaluable as national research resources; collectively, they are the critical elements needed for the actualization of the pan-European biobank infrastructure. The national biobank infrastructures are confronted with a number of challenges of legal, ethical, political, societal, financial and educational nature which must be articulated and addressed in order to optimize the use of the biobanks in national and international research. The community of researchers involved with these biobanks has charted the most pressing issues experienced by the national biobanks in their nascent stages of development. Our findings reveal great commonalities in the nature of the challenges that the national hubs are facing. These challenges and the strategies developed to address them are described in this paper.

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“…Biobanks have become civic projects through which we negotiate relations between citizens, state and industrial actors; between duties, entitlements, and obligations. 93,94 It is sometimes said that all this attention suddenly afforded biobanks reflects a crisis of trust; but this framing assumes that people used to trust biobanking scientists. 95 There is no evidence to support this assumption; rather, it seems to be the case that biobanking has become known to a greater public.…”

Section: Projectsmentioning

confidence: 99%

Size matters: the ethical, legal, and social issues surrounding large-scale genetic biobank initiatives

Hoeyer¹

2012

Nor J Epidemiol

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During the past ten years the complex ethical, legal and social issues (ELSI) typically surrounding large-scale genetic biobank research initiatives have been intensely debated in academic circles. In many ways genetic epidemiology has undergone a set of changes resembling what in physics has been called a transition into Big Science. This article outlines consequences of this transition and suggests that the change in scale implies challenges to the roles of scientists and public alike. An overview of key issues is presented, and it is argued that biobanks represent not just scientific endeavors with purely epistemic objectives, but also political projects with social implications. As such, they demand clever maneuvering among social interests to succeed.

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Biobanks need publicity

Cited by 77 publications

References 2 publications

Scientists’ perspectives on consent in the context of biobanking research

Scientists’ perspectives on consent in the context of biobanking research

ELSI challenges and strategies of national biobank infrastructures

Size matters: the ethical, legal, and social issues surrounding large-scale genetic biobank initiatives

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