Realizing the promise of population biobanks: a new model for translation

Abstract

The promise of science lies in expectations of its benefits to societies and is matched by expectations of the realisation of the significant public investment in that science. In this paper, we undertake a methodological analysis of the science of biobanking and a sociological analysis of translational research in relation to biobanking. Part of global and local endeavours to translate raw biomedical evidence into practice, biobanks aim to provide a platform for generating new scientific knowledge to inform development of new policies, systems and interventions to enhance the public’s health. Effectively translating scientific knowledge into routine practice, however, involves more than good science. Although biobanks undoubtedly provide a fundamental resource for both clinical and public health practice, their potentiating ontology—that their outputs are perpetually a promise of scientific knowledge generation—renders translation rather less straightforward than drug discovery and treatment implementation. Biobanking science, therefore, provides a perfect counterpoint against which to test the bounds of translational research. We argue that translational research is a contextual and cumulative process: one that is necessarily dynamic and interactive and involves multiple actors. We propose a new multidimensional model of translational research which enables us to imagine a new paradigm: one that takes us from bench to bedside to backyard and beyond, that is, attentive to the social and political context of translational science, and is cognisant of all the players in that process be they researchers, health professionals, policy makers, industry representatives, members of the public or research participants, amongst others.

Navigating the perfect [data] storm

“…However, the accelerating pace of genome science will demand an internationally coherent approach if we are to have any chance to address future challenges. And, as we argue below, this necessitates the active consideration of the viewpoints of a range of stakeholders; whether scientific, professional, public or participant (16). Development of such a global vision for ethical, legal and the social implications (ELSI) of genomics is underway (32) and must underpin protection both of the participants, whose data are the basis of scientific knowledge, and of the scientists and others who produce that knowledge.…”

“…Engagement is, therefore, a tool for translation -i.e. T1 tm -in translational science terminology (16). Translation of scientific knowledge into societal impact (health and health service improvement) requires development of tools and mechanisms for the strategic engagement of stakeholders.…”

“…Ethico-legal policies and guidelines, which already reflect local cultural and societal norms, must take account of the increasingly global nature of bioscience research (32). A robust data infrastructure must also be attentive to the translational aims and social impact of its knowledge generation (16). In order to maintain the trust of its constituency -the general public as well as professional, political, commercial stakeholders -it must develop mechanisms to take account of all of these perspectives.…”

“…Second, there is a need to establish effective mechanisms for recognising the substantive contributions of everybody in building, maintaining and operating data infrastructures (8,10), not just the research leaders that obtain funding (11). Third, there is a need to optimise the exploitation of an increasing deluge of large, complex data sets (12)(13)(14) and to identify the social dimensions of optimising data curation (15) and data sharing (16,17). Fourth, the management and use of data and the generation of knowledge needs to be taken forward with social impact and translational aims in mind, particularly by engaging the insights of all relevant stakeholders (16).…”

The art and science of biobanking

“…To that end, this special issue on biobanking opens with an overview of the scientific logic underpinning the creation of biobanks and describes what translation might mean for population biobanking research (Murtagh et al 2011). The authors argue that biobank resources need to be embedded within health systems and that both policy makers and health care providers need to be involved early on in the process.…”