The ethics review of qualitative health research poses various challenges that are due to a mismatch between the current practice of ethics review and the nature of qualitative methodology. The process of obtaining ethics approval for a study by a research ethics committee before the start of a research study has been described as “procedural ethics” and the identification and handling of ethical issues by researchers during the research process as “ethics in practice.” While some authors dispute and other authors (...) defend the use of procedural ethics in relation to qualitative health research, there is general agreement that it needs to be supplemented with ethics in practice. This article aims to provide an illustration of research ethics in practice by reflecting on the ways in which we identified and addressed ethical and methodological issues that arose in the context of an interview study with mental health service users and relatives. We describe the challenges we faced and the solutions we found in relation to the potential vulnerability of research participants, the voluntariness of consent, the increase of participant access and the heterogeneity of the sample, the protection of privacy and internal confidentiality, and the consideration of personal and contextual factors. (shrink)

In a compelling article, Peterson, Karlawish and Largent argue that supported decision-making is preferable to substitute decision-making for people with dynamic impairments. We fully...

Clear and careful thinking is an indispensable aid in the pursuit of answers to the difficult ethical question faced by clinicians, patients, and families. In this issue of The Journal of Medicine and Philosophy devoted to issues in clinical ethics, the authors engage in this enterprise by reflecting on morally good medical decision making, conscientious objection, presumed consent in organ donation, the permissibility of surrogate decision making, and the failure of legislative limits on the scope of euthanasia in Belgium.

Background Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. Methods This paper is a conceptual analysis that explores what consent is and what it does or does (...) not do. It presents a framework that explores the basic elements of consent and breaks it down into its component parts. It analyses the consent act by first identifying its basic elements, namely: a) data subjects or legal representative that provides the authorisation of consent; b) a specific thing that is being consented to; and c) specific agent(s) to whom the consent is given. Results This paper presents a framework that explores the basic elements of consent and breaks it down into its component parts. It goes beyond only providing choices to potential research participants; it explains the rationale of those choices or consenting acts that are taking place when speaking or writing an authorisation to do something to somebody. Conclusions We argue that by clearly differentiating the goals, the procedures of implementation, and what is being done or undone when one consent, one can better face the challenges of contemporary data-intensive biomedical research, particularly regarding the retention and use of data. Conceptualising consent as a compositional act enhances more efficient communication and accountability and, therefore, could enable more trustworthy acts of consent in biomedical science. (shrink)

This issue of The Journal of Medicine and Philosophy is dedicated to topics in clinical ethics with essays addressing clinician participation in state sponsored execution, duties to decrease ecological footprints in medicine, the concept of caring and its relationship to conscientious refusal, the dilemmas involved in dual use research, a philosophical and practical critique of principlism, conundrums that arise when applying surrogate decision-making models to patients with moderate intellectual disabilities, the phenomenology of chronic disease, and ethical concerns surrounding the use (...) of artificial intelligence in medicine. Throughout the issue, the themes of conceptual and moral boundaries in bioethics, critiques of current clinical ethics paradigms, and the importance of transparency are prominent. (shrink)

The concept of competence to consent (or mental capacity) plays a key role in decisions about whether treatment choices of patients should be respected. In both law and bioethics, competence is wid...