The Politics of Representation in the Governance of Emergent 'Secondary Use' Biobanks: The Case of Dried Blood Spot Cards in the Netherlands

Douglas, Conor M.W.; El, Carla G. van; Radstake, Maud; Teeffelen, S.R. van; Cornel, Martina C.

doi:10.1515/1941-6008.1178

Cited by 10 publications

(9 citation statements)

References 20 publications

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“…Having a better understanding of the basis of parents' preferences is helpful to inform policy; however, elsewhere, we have advocated a more involved role for parents in the decision-making process on how DBS are used, which goes above and beyond the current tick box procedure [5,34]. The organization of a parent-led advisory body, which operates as a part of a more formal DBS governance infrastructure, could play a significant role in deliberating, substantially influencing and communicating any changes regarding storage and use, thereby further increasing transparency [5,34,35].…”

Section: Discussionmentioning

confidence: 99%

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Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses

Teeffelen

Douglas

et al. 2015

Public Health Genomics

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Background: Neonatal dried blood spots (DBS) present a wealth of data. Currently, many countries discuss DBS storage, management and use. We collected data in the Netherlands on the awareness and views of an unheard stakeholder: mothers (-to-be). Methods: A survey was conducted on an Amsterdam pregnancy fair website in 2011. We included 1,272 women who were pregnant and/or had at least one child ≤5 years old. A descriptive analysis was used to score the awareness of and views on policies regarding the length of storage and secondary use. Results: 18.9% of mothers (n = 1,272) were aware of all five current DBS screening, storage and use policies. The views were positive for all ten potential specific secondary uses. Most support was given to etiology research, while test development by a company was least supported. Extending the DBS storage beyond the 5-year status quo was approved by 67.8% of the respondents, indefinite storage was approved by 54.7%. Conclusion: Mothers indicate support of several secondary uses and prolonged storage of DBS but report a low awareness of current storage and secondary use policies. Efforts must be made to involve parents as key stakeholders in DBS policies. This could be achieved through a parent-led advisory structure.

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Section: Discussionmentioning

confidence: 99%

“…The organization of a parent-led advisory body, which operates as a part of a more formal DBS governance infrastructure, could play a significant role in deliberating, substantially influencing and communicating any changes regarding storage and use, thereby further increasing transparency [5,34,35]. …”

Section: Discussionmentioning

confidence: 99%

Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses

Teeffelen

Douglas

et al. 2015

Public Health Genomics

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“…Current policies and guidelines are not clear as to what the status of patients is with regard to their samples and data. As Douglas et al (2012) have noted in relation to the secondary use of dried blood spots there is increasing pressure to find uses to existing collections to make them more productive. At the same time, there emerges an ambiguity as to the re-defi nition of patients as research subjects within the healthcare system and the ways in which information and samples on patients ought to be defi ned and managed.…”

Section: Hospital-based Biobank Researchmentioning

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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“… 81 It has also been proposed that bloodspots could be used for forensic purposes. 82 , 83 Such policies have, however, raised concerns over privacy and who should have access to samples collected – at least initially – for clinical purposes, and has motivated discussion regarding the extent to which consent given in a population screening context may cover activities beyond the primary purpose. 82 , 84 , 85 Lawsuits in the US and Canada 86 , 87 challenging such secondary uses of biological material obtained through screening have led to changes in storage policy and, in some cases, the destruction of millions of stored samples.…”

Section: Challenges To Genomic Approaches To Screeningmentioning

confidence: 99%

The Human Genome Project, and recent advances in personalized genomics

Wilson¹,

Nicholls²

2015

RMHP

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The language of “personalized medicine” and “personal genomics” has now entered the common lexicon. The idea of personalized medicine is the integration of genomic risk assessment alongside other clinical investigations. Consistent with this approach, testing is delivered by health care professionals who are not medical geneticists, and where results represent risks, as opposed to clinical diagnosis of disease, to be interpreted alongside the entirety of a patient’s health and medical data. In this review we consider the evidence concerning the application of such personalized genomics within the context of population screening, and potential implications that arise from this. We highlight two general approaches which illustrate potential uses of genomic information in screening. The first is a narrowly targeted approach in which genetic profiling is linked with standard population-based screening for diseases; the second is a broader targeting of variants associated with multiple single gene disorders, performed opportunistically on patients being investigated for unrelated conditions. In doing so we consider the organization and evaluation of tests and services, the challenge of interpretation with less targeted testing, professional confidence, barriers in practice, and education needs. We conclude by discussing several issues pertinent to health policy, namely: avoiding the conflation of genetics with biological determinism, resisting the “technological imperative”, due consideration of the organization of screening services, the need for professional education, as well as informed decision making and public understanding.

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The Politics of Representation in the Governance of Emergent 'Secondary Use' Biobanks: The Case of Dried Blood Spot Cards in the Netherlands

Cited by 10 publications

References 20 publications

Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses

Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses

Rethinking Therapeutic Misconception in Biobanking – Ambivalence Between Research and Treatment

The Human Genome Project, and recent advances in personalized genomics

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