The art and science of biobanking

Knoppers, Bartha Maria; Hudson, Thomas J.

doi:10.1007/s00439-011-1067-9

Cited by 15 publications

(11 citation statements)

References 16 publications

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“…Neither is there any guidance on the rights of family members or the estate over the HBM, data and research results of the deceased donor. [12] It is recommended that these issues be discussed with the donor and be included in the informed consent process. The donor's wishes in the event of death should be recorded and respected.…”

Section: Property Rights -Some Considerationsmentioning

confidence: 99%

Biobank research: Time for discussion and debate

Dhai

Mahomed²

2013

S Afr Med J

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Section: Property Rights -Some Considerationsmentioning

confidence: 99%

Biobank research: Time for discussion and debate

Dhai

Mahomed²

2013

S Afr Med J

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“…Sanctions gain an added importance in an internationally transdisciplinary community, such as the population biobanking community. Biobanking involves researchers from a wide range of disciplines who may never meet via e-mail, never mind face to face [38,40]. Therefore, the usual discipline-based sanctions against unscrupulous users may not work.…”

Section: Transforming Privacy and Enacting Securitymentioning

confidence: 99%

Securing the Data Economy: Translating Privacy and Enacting Security in the Development of DataSHIELD

Murtagh

Demir

Woodward

et al. 2012

Public Health Genomics

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Contemporary bioscience is seeing the emergence of a new data economy: with data as its fundamental unit of exchange. While sharing data within this new ‘economy’ provides many potential advantages, the sharing of individual data raises important social and ethical concerns. We examine ongoing development of one technology, DataSHIELD, which appears to elide privacy concerns about sharing data by enabling shared analysis while not actually sharing any individual-level data. We combine presentation of the development of DataSHIELD with presentation of an ethnographic study of a workshop to test the technology. DataSHIELD produced an application of the norm of privacy that was practical, flexible and operationalizable in researchers’ everyday activities, and one which fulfilled the requirements of ethics committees. We demonstrated that an analysis run via DataSHIELD could precisely replicate results produced by a standard analysis where all data are physically pooled and analyzed together. In developing DataSHIELD, the ethical concept of privacy was transformed into an issue of security. Development of DataSHIELD was based on social practices as well as scientific and ethical motivations. Therefore, the ‘success’ of DataSHIELD would, likewise, be dependent on more than just the mathematics and the security of the technology.

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“…12 We are told that as a new discipline biobanking requires heightened ethics committee scrutiny and governance oversight. 47,48 As clinical annotation of biospecimens provides them their research value, distributing human tissues to researchers personalizes the donors within the research domain leading to biobanks taking on the stewardship responsibilities for the tissue. 33,49 As a consequence, …”

Section: Message 3: Biobanking Is Responsible For the Ethical Usage Omentioning

confidence: 99%

Getting the message about biobanking: returning to the basics

Catchpoole¹

2017

BSAM

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Much has been written about biobanks and biobanking. Since biobanking rose to prominence in the 1990s and became a scientific discipline in its own right, the collection and distribution of human tissue samples or "biospecimens" has been the subject of much critique, debate, and assessment. However, what is the message these discussions provide the wider research community? Are they reflective of progression of a new discipline? Do they represent clarity in the field or confusion? At one point we are told that biobanks are vital infrastructure, yet in the next breath we are told that biobanks are complex, full of risk, inefficient, and unsustainable. Biobanks struggle to receive sustainable funding with many restructuring or closing down, producing dilemmas about what to do with the legacy resources. This review critiques five key messages being relayed by the biobanking community, identifying the five messages that are actually being received by the research community. It also presents a "back to basics" view for biobanking that will return our attention back to five fundamental principles that should guide the ongoing discussion. This includes that biobanking is about the active provision of tissue for research that is vital for improved health outcomes. This activity is founded in human interrelationships, is already performed routinely within hospitals, and is driven by the opportunity to learn from the information contained within the biospecimens. The examples provided will be drawn from New South Wales, Australia, where building a state-wide biobanking infrastructure has been implemented, and which highlight areas where back to basics approach will be beneficial. A back to basics view of biobanking will highlight that the current positions proposed to deal with these issues are mere "straw men" solutions and that the need for a fundamental shift in our thinking is the real issue that needs to be addressed.

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The art and science of biobanking

Cited by 15 publications

References 16 publications

Biobank research: Time for discussion and debate

Biobank research: Time for discussion and debate

Securing the Data Economy: Translating Privacy and Enacting Security in the Development of DataSHIELD

Getting the message about biobanking: returning to the basics

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