Integrity, Trustworthiness, and Effectiveness: Towards an Ethos for Forensic Genetics.

Forensic genetics comes under critical scrutiny when developments challenge previously accepted legal, ethical, social, and other boundaries. Forensic geneticists continue to build a knowledge culture within a community of practice that acknowledges ethical standards of conduct in both research and the societal application of forensic genetics. As the community further cements and extends its societal role, and in that process often pushing at ethical and legal boundaries, it requires a strong, resilient, and responsive ethos that, in setting clear parameters for conduct, fosters the field's sense of purpose. While supra-national declarations and human rights protections, coupled with local regulations, provide some parameters for practice, and discipline-specific guidance has refined an agenda for forensic genetics research and application, this maturing field needs to now define its core principles. This contribution proposes the values of integrity, trustworthiness, and effectiveness as a foundational triptych for a bespoke forensic genetics ethos to ensure the augmentation of developments that range from a purely science-oriented to a wider societally relevant knowledge culture.

Ethics as Lived Practice. Anticipatory Capacity and Ethical Decision-Making in Forensic Genetics.

Greater scrutiny and demands for innovation and increased productivity place pressures on scientists. Forensic genetics is advancing at a rapid pace but can only do so responsibly, usefully, and acceptably within ethical and legal boundaries. We argue that such boundaries require that forensic scientists embrace 'ethics as lived practice'. As a starting point, we critically discuss 'thin' ethics in forensic genetics, which lead to a myopic focus on procedures, and to seeing 'privacy' as the sole ethical concern and technology as a mere tool. To overcome 'thin' ethics in forensic genetics, we instead propose understanding ethics as an intrinsic part of the lived practice of a scientist. Therefore, we explore, within the context of three case studies of emerging forensic genetics technologies, ethical aspects of decision-making in forensic genetics research and in technology use. We discuss the creation, curation, and use of databases, and the need to engage with societal and policing contexts of forensic practice. We argue that open communication is a vital ethical aspect. Adoption of 'ethics as lived practice' supports the development of anticipatory capacity-empowering scientists to understand, and act within ethical and legal boundaries, incorporating the operational and societal impacts of their daily decisions, and making visible ethical decision making in scientific practice.

An Analysis of the Learning Health System in Its First Decade in Practice: Scoping Review.

BACKGROUND: In the past decade, Lynn Etheredge presented a vision for the Learning Health System (LHS) as an opportunity for increasing the value of health care via rapid learning from data and immediate translation to practice and policy. An LHS is defined in the literature as a system that seeks to continuously generate and apply evidence, innovation, quality, and value in health care. OBJECTIVE: This review aimed to examine themes in the literature and rhetoric on the LHS in the past decade to understand efforts to realize the LHS in practice and to identify gaps and opportunities to continue to take the LHS forward. METHODS: We conducted a thematic analysis in 2018 to analyze progress and opportunities over time as compared with the initial Knowledge Gaps and Uncertainties proposed in 2007. RESULTS: We found that the literature on the LHS has increased over the past decade, with most articles focused on theory and implementation; articles have been increasingly concerned with policy. CONCLUSIONS: There is a need for attention to understanding the ethical and social implications of the LHS and for exploring opportunities to ensure that these implications are salient in implementation, practice, and policy efforts.

Health technology identities and self. Patients' appropriation of an assistive device for self-management of chronic illness.

In recent years, assistive technologies have gained acceptance as tools for supporting chronically ill patients in achieving improvements in physical activity. However, various healthcare and sociological studies show contradicting results regarding the physical and social impact of using such devices. This paper explores real-time user appropriation of an assistive monitoring/tracking device, the pedometer, in a healthcare intervention, with a particular focus on the technology identities users attribute to the pedometer. The study site was a rehabilitation programme at a local Danish health centre supporting patients with chronic obstructive pulmonary disease. As part of this empirical study, six focus-group interviews were conducted with patients before and after they used pedometers. The analysis of respondents' accounts shows that monitoring devices become part of users' complex socio-technical ensembles in which the use of the device and its tracking of activity is constantly negotiated through experimentation with type and frequency of use; interpretation of knowledge and experience gained via the device; and negotiation of expectations, wellbeing, and the value of quantified knowledge for the management of chronic illness. On the basis of these findings the paper brings together and advances sociological scholarship on chronic illness, embodiment, the quantified self and technology adoption.

Research campaigns in the UK National Health Service: patient recruitment and questions of valuation.

The National Institute for Health Research (NIHR) aims to improve national 'health and wealth' by providing infrastructural support to enable clinical research in National Health Service settings in England and Wales. Cognisant of the consequences of studies' failure to achieve required numbers of participants, it also actively campaigns to promote patient awareness of research, and willingness to participate in trials. In this paper, we analyse recent NIHR campaigns and policies designed to encourage patients to participate in clinical research to interrogate how they are implicated in the national bioeconomy. In doing so we expand the notion of 'clinical labour' to include the work of patient recruitment and highlight an emergent obligation on patients to contribute to research processes. Whereas once patient knowledge and experience may have been devalued, here we draw on the concept of 'assetisation' (Birch 2012) to explore the emergent relationship between healthcare system and patient as research participant. We consider how patients' contribution goes beyond the provision of standardised objects of valuation so that patients themselves may be perceived as assets to, not only recipients of, the national healthcare system.

Patient-initiated recruitment for clinical research: Evaluation of an outpatient letter research statement.

BACKGROUND: UK Hospital Trusts are charged with increasing patients' research awareness and willingness to take part in research. This includes implementing strategies to encourage patient-initiated enquiries about participation. OBJECTIVES: To evaluate the impact of a research statement inserted in outpatient letters in one clinical service, and to derive suggestions on potential steps towards increasing patient-initiated recruitment. SETTING: A medical outpatient clinic of a research-active hospital trust, serving an inner-city multi-ethnic population across two boroughs. METHODS: Pre-intervention and post-intervention questionnaires were administered face-to-face to new patients. Questionnaires included closed questions and one open comments section. Data were analysed for frequencies, with thematic coding of open-ended responses. RESULTS: The response rates were 87% for the pre-intervention survey and 92% for the post-intervention survey. In the post-intervention survey, 85% of patients did not notice the research statement in the letter. More than half found the statement "a little unclear," whilst one-third considered it "clear." Three-quarters of respondents perceived the statement to be "a little helpful." Only one person enquired about participating in clinical research having read the statement in the outpatient letter. CONCLUSION: The analysis suggests that simple, single-solution approaches such as including research statements in outpatient letters are unlikely to be sufficient to significantly facilitate patient-initiated recruitment. Recruitment efforts need to take into consideration the diversity of patient constituencies including the reasons they seek health care, and how patients can meaningfully access information (research literacy).

Precaution, governance and the failure of medical implants: the ASR((TM)) hip in the UK.

Hip implants have provided life-changing treatment, reducing pain and improving the mobility and independence of patients. Success has encouraged manufacturers to innovate and amend designs, engendering patient hopes in these devices. However, failures of medical implants do occur. The failure rate of the Articular Surface Replacement metal-on-metal hip system, implanted almost 100,000 times world-wide, has re-opened debate about appropriate and timely implant governance. As commercial interests, patient hopes, and devices' governance converge in a socio-technical crisis, we analyse the responses of relevant governance stakeholders in the United Kingdom between 2007 and 2014. We argue that there has been a systemic failure of the governance system entrusted with the safety of patients fitted with medical implants. Commercial considerations of medical implants and the status quo of medical implant governance have been given priority over patient safety despite the availability of significant failure data in an example of uncertainty about what constitutes appropriate precautionary action.

Technological innovations in forensic genetics: social, legal and ethical aspects.

This paper discusses the nature of four waves of technological innovations in forensic genetics alongside the social, legal and ethical aspect of these innovations. It emphasises the way in which technological advances and their socio-legal frameworks are co-produced, shaping technology expectations, social identities, and legal institutions. It also considers how imagined and actual uses of forensic genetic technologies are entangled with assertions about social order, affirmations of common values and civil rights, and promises about security and justice. Our comments seek to encourage the participation of scientific actors in the development of anticipatory governance deliberations concerning the widening application of forensic genetics in an increasing number of criminal and civil jurisdictions.

[Ethical considerations on new developments in reproductive medicine]. / Ethische Uberlegungen zu neuen Entwicklungen in der Reproduktionsmedizin.

Reproduction and the family are central elements in the lives of people, and in the narratives and practices of diverse cultures and societies. In the development of ever more powerful techniques of assisted reproduction a number of questions have emerged. They lie at the heart of what it means to reproduce, to be a parent, to be a human being. Reproductive technologies and their consideration influence perceptions and practices in regard to reproduction and beyond, thus embodying anthropological implications for the understanding of family, motherhood, health, offspring, responsibility and others. Technological capabilities and socio-cultural perceptions are strongly intertwined. The role of bioethics in this context is to explore human nascency as a process. To better understand this process and its implications for human life both medical and social, we suggest considering different perspectives on reproductive technologies to widen our understanding. These perspectives range from the potential child and its parents to health care professionals and the state. In expanding our perception of reproduction, social scientific methods can help to situate philosophical and ethical issues, thus rendering bioethical examination of reproductive technologies more socially robust. In this paper, we provide an overview of several bioethical key themes in assisted reproduction: methodological questions in regard to providing better understanding of this field, selective and inclusive social aspects of assisted reproduction, financial and governance considerations, and an applied consideration of the IVF research interface.