Objectives:Recent legislative changes within the United Kingdom have stimulated professional debate about access to patient data within research. However, there is currently little awareness of public views about such research. The authors sought to explore attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient consent was not being sought.Methods:49 members of the public and four non-medical members of local community health councils in South Wales, UK gave their views on the value and acceptability of three current research scenarios, each describing access to data without patient consent.Results:Among focus group participants, awareness of research in primary care was low, and the appropriateness of general practitioners as researchers was questioned. There was general support for research but also concerns expressed about data collection without consent. These included lack of respect and patient control over the process. Unauthorised access to data by external agencies was a common fear. Current data collection practices, including population based disease registers elicited much anxiety. The key informants were equally critical of the scenarios and generally less accepting.Conclusions:This exploratory study has highlighted a number of areas of public concern when medical records are accessed for research without patient consent. Public acceptability regarding the use of medical records in research cannot simply be assumed. Further work is required to determine how widespread such views are and to inform those advising on confidentiality issues.

The notion of patients’ duties has received periodic scholarly attention but remains overwhelmed by attention to the duties of healthcare professionals. In a previous paper the author argued that patients in publicly funded healthcare systems have a duty to participate in clinical research, arising from their debt to previous patients. Here the author proposes a greatly extended range of patients’ duties grounding their moral force distinctively in the interests of contemporary and future patients, since medical treatment offered to one patient is always liable to be an opportunity cost (however justifiable) in terms of medical treatment needed by other patients. This generates both negative and positive duties. Ten duties—enjoining obligations ranging from participation in healthcare schemes to promoting one’s own earliest recovery from illness—are proposed. The characteristics of these duties, including their basis, moral force, extent and enforceability, are considered. They are tested against a range of objections—principled, societal, epistemological and practical—and found to survive. Finally, the paper suggests that these duties could be thought to reinforce a regrettably adversarial characteristic, shared with rights-based approaches, and that a preferable alternative might be sought through the (here unexplored) notion of a “virtuous patient” contributing to a problem-solving partnership with the clinician. However, in defining and giving content to that partnership, there is a clear role for most, if not all, of the proposed duties; their value thus extends beyond the adversarial context in which they might first be thought to arise.

Patients participating in the shared benefits of publicly funded health care enjoy the benefits of treatments tested on previous patients. Future patients similarly depend on treatments tested on present patients. Since properly designed research assumes that the treatments being studied are—so far as is known at the outset—equivalent in therapeutic value, no one is clinically disadvantaged merely by taking part in research, provided the research involves administering active treatments to all participants. This paper argues that, because no other practical or moral considerations count decisively against so doing, we could and should oblige patients to agree to receive indicated treatment within the terms of any concurrent research protocols. This ensures their treatment will benefit not only themselves but also future patients through contributing to new knowledge. By analogy with the paying of income tax, patients should not be allowed to “veto” their social responsibility to take part in clinical research.

This paper first distinguishes governance (collective, autonomous self-regulatory processes) from government (externally-imposed mandatory regulation); it proposes that the second of these is essentially incompatible with a conception of the medical humanities that involves imagination and vision on the part of medical practitioners. It next develops that conception of the medical humanities, as having three distinguishable aspects (all of them distinct from the separate phenomena popularly known as "arts-in-health"): first, an intellectual enquiry into the nature of clinical medicine; second, an important dimension of medical education; third, a resource for moral and aesthetic influences upon clinical practice, supporting "humane health care" as the moral inspirations behind organised medicine. Medical humanities sustains these three aspects through paying proper attention to the existential and subjective aspects of medicine. By encouraging authentic imagination among health care practitioners, medical humanities aligns well with both humane health care and governance in the sense of self-regulation. However, it can neither be achieved mechanistically nor well-measured through proxies such as patient satisfaction. Above all, it should not be allowed to supply, through inappropriate qualitative "targets," new forms of management tyranny.

Here are three writers not thinking particularly about medicine:Were there no given, wonder could never spring on us its unpredictable surprise, would never be able to sneak up and startle us into realizing that we do not know what lies right here in front of us. Jerome Miller [1] Wonder … always points to something beyond the accepted rules. Because of this, the feeling of being overwhelmed, or the experience of humbleness and even awe could accompany it. But wonder is also consistent with a certain uneasiness towards the given, an inkling that there is more to it than tradition admits, and this more can be investigated. Paul Martin Opdal [2] If this is the way the world is: extraordinary, surprising, beautiful, singular, mysterious and meaningful; then this is how I ought to act in that world: with respect and celebration, with care, and with full acceptance of the responsibilities that come with my role as a human being privileged to be a part of that community of living things. Wonder is the missing premise that can transform what-is into a moral conviction about how one ought to act in that world. Kathleen Dean Moore [3] These writers had in mind, variously, questions in philosophy of religion, in developmental and educational psychology, and ecology and environmental ethics; but I believe their common theme -wonder -is always latent within medicine and at times suffuses it. Indeed, there is a sense in which all medical treatment, whether or not it works, is wonder-ful in terms of its ambition and, for want of a better word, its metaphysical presumption.[4] For many, a major reason for entering the profession of medicine is the mystery of the body and its physiological interconnectedness. [Footnote 1 ] Yet for some reason wonder's role in clinical medicine is rarely spoken about.In this paper I want to propose the value, to doctors and others in routine clinical life, of an active, cultivated, openness to wonder and to the sense of wonder. Wonder is a notion that in recent decades has attracted periodic interest among philosophers and theologians, [5][6][7][8][9][10] historians of science [11][12][13] and educationalists [14] among others (including recently at least one significant funding body [footnote 2 ]) but so far as I know it has not been discussed in detail in relation to the practice of clinical medicine. An invitation to do so was issued in the form of an elegantly engaging short paper by sociologist Arthur W Frank, exhorting doctors and patients alike to 'recognize the wonder of the body rather than try to control it; ' [15] and for my own part I have previously suggested an active sense of a wonder as a personal resource to the professional clinician [16] and its cultivation as an educational good to be aimed at via the integration of humanities within the medical school curriculum. [17] However no-one has attempted any sustained analytic discussion of the clinical relevance of wonder, nor exploration of the ethical or aesthetic aspects of wonder in relation to medical 1 I owe this point to A...