Permission to Contact (PTC)—A Strategy to Enhance Patient Engagement in Translational Research

Cheah, Stefanie; O'Donoghue, Sheila; Daudt, Helena; Dee, Simon; LeBlanc, Jodi; Braun, Lauren; Barnes, Rebecca; Vercauteren, Suzanne; Boone, Robert H.; Watson, Peter H.

doi:10.1089/bio.2013.0023

Cited by 21 publications

(22 citation statements)

References 5 publications

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“…Another strategy for a tumor biobank is to refocus enrolment energy into obtaining consent for biobanking from representative populations diagnosed with cancer, independent of the likelihood of being able to secure fresh or frozen materials at the time of surgery. 12 This facilitates enacting processes to access to FFPE materials in the clinical pathology archives. Active utilization of population-based cancer registries can identify specialized potential cohorts associated with clinical FFPE biospecimens, for example, cohorts with biospecimens that span clinical events and that can be linked by a dedicated effort by the biobank to compile the cohort for researchers.…”

Section: Figmentioning

confidence: 99%

Biospecimen Complexity and the Evolution of Biobanks

Hartman

Matzke

Watson

2019

Biopreservation and Biobanking

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Biospecimens are critical in driving health research. There is increased demand for scale and quality of biospecimens that in turn drives biobanking operational costs, influences utilization, and threatens the sustainability of individual biobanks. Biospecimen research has begun to inform the details of new biobanking standards and the steps of the biobanking process that are most important to focus on to achieve higher quality. This focus on quality is currently centered mostly on intrinsic features of biospecimens and their annotating data. This review highlights additional quality features that are important to researchers in determining the fit for purpose in their research. First, we define complex qualities as those that are mostly extrinsic to the individual biospecimen and data, and second, we provide data on the growth in demand for biospecimens with this type of quality in cancer research biobanks. Finally, we discuss why biospecimen complexity is a challenge for biobanks and utilization of existing collections, and provide examples of strategies biobanks can consider to improve their focus on this aspect of quality, as we predict that researcher demand for complex biospecimens will continue to expand in the future.

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Section: Figmentioning

confidence: 99%

Biospecimen Complexity and the Evolution of Biobanks

Hartman

Matzke

Watson

2019

Biopreservation and Biobanking

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“…We have shown that when this ''Permission to Contact'' platform is shared by several biobanks and clinical research projects in a center or region there can be many benefits including enhanced enrollment and reduced overall cost of consent. 27,28 As noted above, there is significant and largely unrecognized diversity in types of biobanks. The small-and medium-sized mono-and oligo-user biobanks comprise the majority of biobanks, and are typically designed to address specific research questions.…”

Section: Operational Dimensionmentioning

confidence: 99%

“…This is one of the benefits for a biobank of implementing a ''permission to contact'' platform as a separate process in addition to operating the other components of its own existing consent mechanism. 27,28 The ''permission to contact'' serves the biobank itself but also provides another distinct product to researchers, either alone or in conjunction with a banked biospecimen. Similarly, adoption of the Biospecimen Reporting for Improved Study Quality (BRISQ) guidelines, 29 which is required or recommended by some journals such as Nature, is made easier to accomplish by the use of an online tool offered by the BRC.…”

Section: Operational Dimensionmentioning

confidence: 99%

A Framework for Biobank Sustainability

Watson

Nussbeck

Carter

et al. 2014

Biopreservation and Biobanking

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109

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Each year funding agencies and academic institutions spend millions of dollars and euros on biobanking. All funding providers assume that after initial investments biobanks should be able to operate sustainably. However the topic of sustainability is challenging for the discipline of biobanking for several major reasons: the diversity in the biobanking landscape, the different purposes of biobanks, the fact that biobanks are dissimilar to other research infrastructures and the absence of universally understood or applicable value metrics for funders and other stakeholders. In this article our aim is to delineate a framework to allow more effective discussion and action around approaches for improving biobank sustainability. The term sustainability is often used to mean fiscally self-sustaining, but this restricted definition is not sufficient for biobanking. Instead we propose that biobank sustainability should be considered within a framework of three dimensions - financial, operational, and social. In each dimension, areas of focus or elements are identified that may allow different types of biobanks to distinguish and evaluate the relevance, likelihood, and impact of each element, as well as the risks to the biobank of failure to address them. Examples of practical solutions, tools and strategies to address biobank sustainability are also discussed.

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“…To address issues regarding initial access to patients and biobank donation, some groups have demonstrated the success of 'Permission to Contact' models, under which all patients who present for care in a clinical setting are approached to request consent that they be contacted at a later date regarding future research opportunities. This method has the potential to dramatically improve the number of suitable participants available for biobank initiatives (80-94 % of those approached agree to be contacted), while at the same time increasing research potential with improved access to eligible patients, which is essential for the 'big data' science now being demanded to accurately characterize and validate biomarkers (Cheah et al 2013).…”

Section: Consentmentioning

confidence: 99%

Ethical Considerations in Biobanks: How a Public Health Ethics Perspective Sheds New Light on Old Controversies

Virani

Longstaff

2014

Journal of Genetic Counseling

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Biobanks, collections of biospecimens with or without linked medical data, have increased dramatically in number in the last two decades. Their potential power to identify the underlying mechanisms of both rare and common disease has catalyzed their proliferation in the academic, medical, and private sectors. Despite demonstrated public support of biobanks, some within the academic, governmental, and public realms have also expressed cautions associated with the ethical, legal, and social (ELSI) implications of biobanks. These issues include concerns related to the privacy and confidentiality of data; return of results and incidental findings to participants; data sharing and secondary use of samples; informed consent mechanisms; ownership of specimens; and benefit sharing (i.e., the distribution of financial or other assets that result from the research). Such apprehensions become amplified as more researchers seek to pursue national and cross-border collaborations between biobanks. This paper provides an overview of two of the most contentious topics in biobank literature - informed consent and return of individual research results or incidental findings - and explores how a public health ethics lens may help to shed new light on how these issues may be best approached and managed. Doing so also demonstrates the important role that genetic counselors can play in the ongoing discussion of ethically appropriate biobank recruitment and management strategies, as well as identifies important areas of ongoing empirical research on these unresolved topics.

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Permission to Contact (PTC)—A Strategy to Enhance Patient Engagement in Translational Research

Cited by 21 publications

References 5 publications

Biospecimen Complexity and the Evolution of Biobanks

Biospecimen Complexity and the Evolution of Biobanks

A Framework for Biobank Sustainability

Ethical Considerations in Biobanks: How a Public Health Ethics Perspective Sheds New Light on Old Controversies

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