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Biolaw and Bioethics
Published in Roger Brownsword, Technology, Governance and Respect for the Law, 2023
For many years, medical researchers have relied on ‘biobanks’ (that is, collections of biological samples and tissues that are curated and used for particular research purposes). However, we are entering an era of ‘big biobanks’ in which the collection of biological samples is complemented by various kinds of personal data (such as data concerning lifestyles) as well as medical records, all linked to further databases that are health-related (such as cancer registries and hospital episode statistics). The hope that encourages investment in such big biobanks is that, by interrogating the data, researchers will understand much more about the causes of prevalent diseases—in particular, by understanding the causal significance of a person’s genetic profile, their lifestyle, and their exposures, and so on—as well as finding responses that work more effectively for patients.
Trust, trustworthiness, and relationships: ontological reflections on public trust in science
Published in Journal of Responsible Innovation, 2023
Trustworthiness, in this normative sense, is about consideration of the tangible things that are necessary, in behaviour, in commitments, in material conditions or otherwise, for us to conceive of an actor as trustworthy. In the context of institutional science, this can be illustrated using the case of biobanks (O’Doherty et al. 2011). DNA biobanks are important resources for genomics research. These kinds of biobanks collect DNA samples from a very large number of people and provide these DNA samples and associated personal information about the individuals who donated those samples to researchers. Understandably, there are concerns about privacy, how best to gain appropriate consent for research, and so on. Both the biobanks and the researchers who want to use the biobank have an interest in people trusting the biobanks so that as many people as possible donate DNA and are satisfied for it to remain there. As such there is a good amount of research that asks what factors lead people to trust biobanks. The focus in much of this research is on the person doing the trusting (or not doing the trusting, as the case may be). The focus is not primarily on the practices of the biobank, but rather on the intrapsychic variables that can be manipulated to increase the trust toward biobanks inherent in any given person. The shift to trustworthiness, in this particular context, suggests that the primary focus should not be on the psychology of the people doing (or not doing) the trusting, but rather on the biobank. And the questions we should be asking are, Given what we know about the way the biobank is set up, is it deserving of our trust? How does the biobank treat and store biological samples? How does the biobank store personal information? What kind of safeguards are in place to prevent theft of samples or data? How are researchers vetted before they are given access to biobank resources? What ethics oversight is in place to ensure that discriminatory or other objectionable research is not carried out using my sample and personal information?In short, trustworthiness is about turning attention away from the person asked to trust and instead focusing on the person or institution asking to be trusted. It is about reflecting critically on very specific and tangible aspects of past and present conduct and institutional structures, and acting on those insights.