A funny thing happened on the way to the journal: a commentary on Foucault's ethics and Stuart Murray's "Care of the self"

Stuart Murray's 'Care and the self: biotechnology, reproduction, and the good life' utilizes Foucault's "care of the self" to examine health domains in its title. The present author discusses three important articulations of concern with the Foucauldian concepts of care of the self that are absent in the work of Murray and others: first, the voluntarism and individualism inherent in ideas about care of the self; second, the absence of the interactional and relational; and, third, the perpetuation of the interpretation of Foucault's concept of governmentality, 'the conduct of conduct', as primarily coercive

Data Access Governance

Enabling researchers’ access to large volumes of health data collected in both research and healthcare settings can accelerate improvements in clinical practice and public health. Because the source and subject of those data are people, data access governance has been of concern to scientists, ethics and regulatory scholars, policy-makers and citizens worldwide. This chapter examines the topic of data access governance. We discuss the underlying values and goals of data access governance, focusing in particular on the scientific and social implications for open access and data sharing, on the rights and interests of data subjects as well as those of data producers, and on the ethical conduct of data sharing. We then present existing data access arrangements of organisations and repositories that exemplify varying modes of good practice. We argue these models exemplify the tension between promoting open access to databases on the one hand, and, on the other, protecting the rights and interests of the parties involved, including data subjects, researchers, funding organizations and commercial entities. We suggest that principles of transparency, fairness and proportionality in consideration of all stakeholders’ interests and values is key to achieving this balance

Biobank Economics and the “Commercialization Problem”

The economic aspects of biobanking are intertwined with the social and scientific aspects. We describe two problems that structure the discussion about the economics of biobanking and which illustrate this intertwining. First, there is a ‘sustainability problem’ about how to maintain biobanks in the long term. Second, and representing a partial response to the first problem, there is a ‘commercialisation problem’ about how to deal with the voluntary altruistic relationship between participants and biobanks, and the potential commercial relationships that a biobank may form. Social scientists have argued that the commercialisation problem is inadequate as a way to construct the multiple tensions that biobanks must negotiate. We agree that the commercialisation problem is an inadequate framework; turning to alternative accounts of bioeconomy, we suggest that contemporary consideration of the economics of biobanking primarily in terms of participants and their bodily tissue may reproduce the very commodification of science that these scholars critique. We suggest that an alternative conception of the economics of biobanking beyond the logics of commodification, which may thereby allow broader questions about the social and economic conditions and consequences of biobanks to be posed

'I just keep thinking I haven't got it because I'm not yellow': a qualitative study of the factors that influence the uptake of Hepatitis C testing by prisoners

<p>Abstract</p> <p>Background</p> <p>Hepatitis C viral (HCV) infection is a significant public health problem. In the UK, an estimated 200,000 individuals have active HCV infection, most of whom are injecting drug users (IDUs). Many IDUs spend time within the prison system therefore screening for HCV infection in this setting is important. However, uptake of testing within prisons is very low.</p> <p>Methods</p> <p>Qualitative interview study. 30 interviews with 25 male and 5 female prisoners with a history of injecting drug use.</p> <p>Results</p> <p>Personal and institutional barriers to uptake of testing for HCV were identified. Personal barriers included: prisoners' fears and lack of knowledge about HCV, low motivation for testing, lack of awareness about the testing procedure, and concerns about confidentiality and stigma. Institutional barriers included: the prisons' applications procedure for testing, inadequate pre- and post-test discussion, lack of pro-active approaches to offering testing, and lack of continuity of care on discharge and transfer.</p> <p>Conclusion</p> <p>This study highlights potential areas of development in the management of HCV in prisons. Further research is needed to evaluate care pathways for HCV in the prison setting and to develop and assess interventions to improve the uptake of testing for HCV by prisoners.</p

Beyond trust: Amplifying unheard voices on concerns about harm resulting from health data-sharing

Background: The point of care in many health systems is increasingly a point of health data generation, data which may be shared and used in a variety of ways by a range of different actors. Aim: We set out to gather data about the perspectives on health data-sharing of people living in North East England who have been underrepresented within other public engagement activities and who are marginalized in society. Methods: Multi-site ethnographic fieldwork was carried out in the Teesside region of England over a 6-month period in 2019 as part of a large-scale health data innovation program called Connected Health Cities. Organizations working with marginalized groups were contacted to recruit staff, volunteers, and beneficiaries for participation in qualitative research. The data gathered were analyzed thematically and vignettes constructed to illustrate findings. Results: Previous encounters with health and social care professionals and the broader socio-political contexts of people’s lives shape the perspectives of people from marginalized groups about sharing of data from their health records. While many would welcome improved care, the risks to people with socially produced vulnerabilities must be appreciated by those advocating systems that share data for personalized medicine or other forms of data-driven care. Conclusion: Forms of innovation in medicine which rely on greater data-sharing may present risks to groups and individuals with existing vulnerabilities, and advocates of these innovations should address the lack of trustworthiness of those receiving data before asking that people trust new systems to provide health benefits

International Data Sharing in Practice:New Technologies Meet Old Governance

The social structures that govern data/sample release aim to safeguard the confidentiality and privacy of cohort research participants (without whom there would be no data or samples) and enable the realization of societal benefit through optimizing the scientific use of those cohorts. Within collaborations involving multiple cohorts and biobanks, however, the local, national, and supranational institutional and legal guidelines for research (which produce a multiplicity of data access governance structures and guidelines) risk impeding the very science that is the raison d'etre of these consortia. We present an ethnographic study, which examined the epistemic and nonepistemic values driving decisions about data access and their consequences in the context of the pilot of an integrated approach to co-analysis of data. We demonstrate how the potential analytic flexibility offered by this approach was lost under contemporary data access governance. We identify three dominant values: protecting the research participant, protecting the study, and protecting the researcher. These values were both supported by and juxtaposed against a “public good” argument, and each was used as a rationale to both promote and inhibit sharing of data. While protection of the research participants was central to access permissions, decisions were also attentive to the desire of researchers to see their efforts in building population biobanks and cohorts realized in the form of scientific outputs. We conclude that systems for governing and enabling data access in large consortia need to (1) protect disclosure of research participant information or identity, (2) ensure the specific expectations of research participants are met, (3) embody systems of review that are transparent and not compromised by the specific interests of one particular group of stakeholders, and (4) facilitate data access procedures that are timely and efficient. Practical solutions are urgently needed. New approaches to data access governance should be trialed (and formally evaluated) with input from and discussion with stakeholders

How does smallholder farming practice and environmental awareness vary across village communities in the karst terrain of southwest China?

Worldwide, karst terrain is highly sensitive to human activity due to extensive areas of thin soil and rapid water flow to groundwater. In the southwest China karst region, poor farming decisions can promote land degradation and reduce water quality with negative consequences for livelihoods in a region where farmers already suffer from the highest national poverty rates. Targeting management advice to farmers through knowledge exchange and decision support can help alleviate land use impacts on the karst environment but first requires baseline knowledge of how local farming communities understand and approach soil and water management. We used a catchment-wide survey (n = 312 individuals in seven villages) to investigate differences in environmental awareness, catchment understanding, and farming practices amongst farmers and community leaders in a typical karst catchment in southwest China. Age, gender and village of residence of farmers showed an association with the type of challenges perceived to be most serious. Access to labour, issues of water quantity and/or quality affecting irrigation, and fertiliser costs were recognised as being particularly problematic for the viability of farming. Sources of information used to learn about farming practices, the environment and fertiliser use were more diverse for younger (< 40 yr old) farmers and levels of training and acquired knowledge regarding land management practices varied significantly between villages in the catchment. The identification of significant associations between villages or sample demographics, and a variety of questions designed to understand farmer attitudes and their environmental awareness, provide clearer insight upon which knowledge exchange and training programmes can be co-designed with catchment stakeholders. This has the potential to lead to improved farming practices with co-benefits for farmers and the environment; helping sustain ecosystem services for impoverished communities in fragile karst ecosystems

Smart homes, private homes? : an empirical study of technology researchers’ perceptions of ethical issues in developing smart-home health technologies

Background: Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought to contribute to dialogue between ethics and the engineering community. Methods: Either face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants’ consent, interviews were audio-recorded, transcribed and analysed using a thematic approach. Results: Two overarching themes emerged: in ‘Privacy’, researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In ‘Choice’, researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design. Conclusions: The tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of (bio)ethics as a critical partner to smart-home engineering

Digital methodology to implement the ECOUTER engagement process

ECOUTER (Employing COnceptUal schema for policy and Translation Engagement in Research) – French for ‘to listen’ – is a new stakeholder engagement method incorporating existing evidence to help participants draw upon their own knowledge of cognate issues and interact on a topic of shared concern. The results of an ECOUTER can form the basis of recommendations for research, governance, practice and/or policy. This paper describes the development of a digital methodology for the ECOUTER engagement process based on currently available mind mapping freeware software. The implementation of an ECOUTER process tailored to applications within health studies are outlined for both online and face-to-face scenarios. Limitations of the present digital methodology are discussed, highlighting the requirement of a purpose built software for ECOUTER research purposes