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Our international study, 'Your DNA, Your Say', uses film and an online cross-sectional survey to gather public attitudes toward the donation, access and sharing of DNA information. We describe the methodological approach used to create an engaging and bespoke survey, suitable for translation into many different languages. We address some of the particular challenges in designing a survey on the subject of genomics. In order to understand the significance of a genomic result, researchers and clinicians alike use external databases containing DNA and medical information from thousands of people. We ask how publics would like their 'anonymous' data to be used (or not to be used) and whether they are concerned by the potential risks of reidentification; the results will be used to inform policy.

Our international study, 'Your DNA, Your Say', uses film and an online cross-sectional survey to gather public attitudes toward the donation, access and sharing of DNA information. We describe the methodological approach used to create an engaging and bespoke survey, suitable for translation into many different languages. We address some of the particular challenges in designing a survey on the subject of genomics. In order to understand the significance of a genomic result, researchers and clinicians alike use external databases containing DNA and medical information from thousands of people. We ask how publics would like their 'anonymous' data to be used (or not to be used) and whether they are concerned by the potential risks of reidentification; the results will be used to inform policy.

Decision-making capacity is an increasingly important medico-legal concept. The recent Mental Capacity Act employs a cognitive, process-based test of capacity, but in many psychiatric conditions pathological beliefs and values impair capacity even when the decision-making process is logically coherent. In such cases, capacity assessments implicitly rely on normative epistemic and evaluative standards. This raises a worry for the capacity test’s reliability, objectivity and tolerance of differences in beliefs and values. There is currently little conceptual research on capacity and the normative standards underpinning its assessment. This thesis makes an original contribution to research by employing a number of philosophical approaches to map out a conceptual terrain within which questions about the substantive standards of capacity assessment can be framed. Focusing on the nature of epistemic standards and third-person judgements about decision-making, the thesis examines the normative constraints determining what counts as a recognisable reason for a decision. It employs the theoretical apparatus of Davidson’s project of Radical Interpretation to explore the epistemology of interpretation, interrogating the conditions under which intentional attribution and the provision of reason explanations for behaviour are possible. It is contended that beliefs are intrinsically rational and intersubjective, and that judgements of irrationality are only possible against a background of shared belief between interpreter and observed agent. This view is defended against the objection that rationality is too stringent a constraint on belief. A misconception giving rise to this objection is then diagnosed. Drawing an analogy with Wittgenstein’s rule-following considerations, it is submitted that the constitutive normativity of belief need not be codified in order to exert a genuine constraint on intentional behaviour. Rather, the norms of belief ought to be construed as emerging

The Mental Capacity Act 2005 (MCA) was fully implemented in October 2007 in England and Wales. This article reports on two similar, but separate, pilot questionnaire studies that examined the experience of consultants in old age psychiatry and consultants in other psychiatric specialities in the early implementation of the MCA pertaining to issues relevant to black and minority ethnic (BME) groups. Fifty-two (27%) of the 196 consultants in old age psychiatry and 113 (12%) of the 955 consultants in other psychiatric specialities returned useable questionnaires. Eighty per cent or more of the consultants in old age psychiatry and consultants in other psychiatric specialities gave consideration to religion and culture and ethnicity in the assessment of decision-making capacity (DMC). Almost 50% of the consultants in old age psychiatry reported that half or more of the patients lacking fluency in English or where English was not their first language received an assessment of DMC with the aid of an interpreter and 40% of the consultants in other psychiatric specialities reported that no such patients received an assessment of DMC with the aid of an interpreter.The low rate of using interpreters is of concern. The nature of the consideration and implementation of factors relevant to culture, ethnicity and religion in the application of the MCA and the precise reasons for the low rate of using interpreters in patients lacking fluency in English or English not being their first language require clarification in further studies.

The value of sharing research data is widely recognised by the research community and funders are setting in place stronger policy requirements for researchers to share data. But the costs to researchers in sharing their data can be considerable and the incentives are sometimes few and far between. A recent report from the cross-disciplinary Expert Advisory Group on Data Access (EAGDA) highlights the need for a shift in cultures to provide greater support for researchers in sharing data and greater recognition for those who do it well. Dave Carr and Natalie Banner, from the Wellcome Trust, highlight some of the key findings and recommendations emerging from this work.