Although scientific and commercial excitement about genomic biobanks has subsided since the biotech bust in 2000, they continue to fascinate life scientists, bioethicists, and politicians alike. Indeed, these assemblages of personal health information, human DNA, and heterogeneous capital have become and remain important events in the ethics and politics of the life sciences. For starters, they continue to reveal and produce the central scientific, technological, and economic paradigms so ascendant in biology today: genome, infotech, and market. Biobanks also illustrate what (...) might be called the new distributive politics of biomedical research. Within those politics, the commodification of persons – or at the very least, of their informational representations – has challenged the ontological, ethical, and political underpinnings of the social contract between researchers and their human research subjects. In brief, biobanks are unsettling relations between genes, tissue, medical records, and persons. But it is also clear that these relations are increasingly being restructured by new rights of control, access, exclusion, and use known as “property,” both material and intellectual. (shrink)

Key to concerns about public involvement in technology governance is the concept of lay expertise, the idea that lay people possess some kind of special knowledge that neither trained experts in technology, ethics and social sciences nor professional politicians possess. There are at least four different meanings of "lay expert": (1) Lay people who are educated into quasi-experts on a particular issue or technology; (2) Lay people who turn themselves into experts in order to challenge scientific experts; (3) Lay people (...) with particular knowledge based on tradition and experience; (4) Lay people who represent an alternative perspective to expert views because they are non-experts. The challenge is that lay people are often ignorant in the relevant matters and wish to leave governance to experts. Still, there are normative reasons for lay engagement, either as stakeholders or as citizens in a deliberative democracy. According to the second approach, political decisions should be based on an inclusive open debate aimed at the better argument, providing lay people a crucial role in governance. In order to include lay people without making them hostage to experts, politicians or interest groups, we can engage them in focus group interviews which are analysed by social scientists and included in the interdisciplinary debate in journals and political forums. (shrink)

The forensic use of DNA involves the public in a number of roles. The rapid adoption of DNA identification as a part of the legal system and continuing developments have afforded little opportunity to thoroughly interrogate public understandings of issues. This article reports on a survey that explores public understanding of the forensic use of DNA: sources of knowledge, understandings of processes, and attitudes toward DNA use. Overall, knowledge about DNA use was limited, particularly around means of taking samples and (...) storage, and two thirds stated that they did not have enough information about DNA use. While the majority agreed that such use of DNA is “a great step forward,” they “would be happy to give a DNA sample if requested,” and considered DNA evidence to be important, concern was indicated about some areas, such as possible mistakes. This was particularly the case for indigenous peoples. (shrink)

Biobanks are designed with particular purposes in mind. These purposes are reflected in the governance frameworks that define the conditions for participation and access by researchers. In this paper, I analyse two different models: the commercially aligned deCODE biobank and the ‘public good’ framework of UK Biobank. These diametric models have both featured ‘the public interest’ as pivotal to their achievements. However, if properly understood, the public interest rhetoric of deCODE actually conflicts with any professed community interest. The reasons why (...) are explained, and the effects this has on conditions for participation are critiqued, before reflecting on how each model might have an impact on reproductive health research. (shrink)

According to surveys and opinion polls, citizens in Nordic welfare societies have positive, supportive attitudes towards medical research and biobanking. In Finland, it was expected that this would result in the active biobank participation of patients and citizens. Indeed, public support has been rhetorically utilised as a unique societal factor and advantage in the promotion of Finnish biobanks, underlining the potential Finland offers for the international biomedical enterprise. In this paper, we critically analyse the use of notions such as ‘willing (...) population’ and ‘engaged people’ in the promotion and legitimation of biobanking. First, there is a seeming contradiction between positive attitudes and actual participation rates, as biobanks have faced unexpected challenges in participant recruitment during the first years of their operations. As a result, the concept of a willing population was redirected to problematise the necessity of informed consent. Second, we question whether it is even meaningful to assume the existence of an informed and engaged population with regard to biobanking. Therefore, we suggest that it is problematic to talk about a willing population at the same time as the relevance of the informed consent system is being questioned by biobank actors and policy makers. We analyse this tension in relation to existing data on Finnish people’s attitudes, pointing out that positive, supportive views do not directly transform into high participation rates; nor do they justify the claims of policy makers and biobank proponents that people are willing to participate, when in fact surveys report that people know very little about biobanks. (shrink)

A number of public controversies have emerged around forensic DNA testing backlogs at crime laboratories in the United States. This study provides a first look at public responses to such backlogs, using a controversy in the state of Wisconsin as a case study. First, it builds on research about public understandings of DNA and the “CSI effect” to develop a theoretical framework. Next, it explores news coverage of the Wisconsin backlog. It then uses survey data to show that public understandings (...) of DNA, media use, and demographic factors were related to how closely respondents followed the story about the backlog and/or how much they supported increased spending on DNA testing at the crime lab. Self-reported understanding of DNA predicted following the backlog, whereas perceived reliability of DNA evidence predicted both following the backlog and support. Total television viewing was not related to either following the backlog or support, but watching crime television predicted following the backlog. Reading a newspaper and watching local TV news each predicted following the backlog; reading a newspaper also predicted support. These results suggest a number of theoretical insights into how members of the public may reason about and draw on media messages regarding DNA and DNA testing in responding to forensic DNA testing backlogs. (shrink)

The UK Chief Medical Officer’s 2016 Annual Report, Generation Genome, focused on a vision to fully integrate genomics into all aspects of the UK’s National Health Service. This process of integration, which has now already begun, raises a wide range of social and ethical concerns, many of which were discussed in the final Chapter of the report. This paper explores how the UK’s 100,000 Genomes Project —the catalyst for Generation Genome, and for bringing genomics into the NHS—is negotiating these ethical (...) concerns. The UK’s 100 kGP, promoted and delivered by Genomics England Limited, is an innovative venture aiming to sequence 100,000 genomes from NHS patients who have a rare disease, cancer, or an infectious disease. GEL has emphasised the importance of ethical governance and decision-making. However, some sociological critique argues that biomedical/technological organisations presenting themselves as ‘ethical’ entities do not necessarily reflect a space within which moral thinking occurs. Rather, the ‘ethical work’ conducted by organisations is more strategic, relating to the politics of the organisation and the need to build public confidence. We set out to explore whether GEL’s ethical framework was reflective of this critique, and what this tells us more broadly about how genomics is being integrated into the NHS in response to the ethical and social concerns raised in Generation Genome. We do this by drawing on a series of 20 interviews with individuals associated with or working at GEL. (shrink)

Modern biobanks typically rely on the public to freely donate genetic data, undergo physical measurements and tests, allow access to medical records and give other personal information by questionnaire or interview. Given the demands on participants it is not surprising that there has been extensive public consultation even before biobanks in the UK and elsewhere began to recruit. This paper considers the different ways in which biobanks have attempted to engage and appeal to their publics and the reaction of potential (...) and actual donors. Whilst those organising biobanks presumably want to be as close to their publics as they need to be in order to successfully recruit and sustain participation in sufficient numbers, the closer the relationship the more obligations and expectations there are on both sides. (shrink)