In this paper we propose a theoretical framework for analysing the history and function of ethics as a form of regulation. Ethics in the form of codes, rules and declarations, constitutes regulatory policies, and we wish to suggest analysing such policies from an organizational perspective. In many instances ethics policies are reactions to particular events involving harm of patients or research participants. As such they seem to come forward as solutions to specific problems. However, not all such events that instigate (...) the making of new policies, and policies often have other effects and are used for other purposes than what we might expect from the events preceding them: when ethics takes on the form of policy making, the relationship between problems and solutions is more complex. We suggest that an organizational perspective on ethics codes, rules and declarations can deliver a relevant framework for future studies of the implications of wanting to address ethical problems through policy making. (shrink)

In 1948 Ludwik Fleck published a paper in Polish discussing the use of humans in medical experiments, thereby addressing his peers. Though the paper has so far not been translated or studied, it has been taken to indicate Fleck’s deep commitment to ethical questions, notably the question of informed consent. In being written by a former victim of the Nazi policy and a survivor of the Holocaust also acting as an expert witness in the trial of the IG Farben in (...) Nuremberg, the paper is of interest. A scrutiny of Fleck’s text and related sources discloses, however, not only the complexity of the issue at the centre of the Nuremberg trial, but also Fleck’s unexpected stance in seemingly adducing his arguments from both the German defendants and the prosecution, heavily informed by US scientists. Further, the contentious discussion of the past in Fleck’s paper reveals its links to modern bioethical discussion. Though sometimes oblivious of that past, it still faces the same questions. (shrink)

During the Nazi era, physicians provided expertise and a veneer of legitimacy enabling crimes against humanity. In a creative educational initiative to address current ethical dilemmas in clinical medicine, we conduct ethics learning missions bringing senior physicians to relevant Nazi era sites in either Germany or Poland. The tours share a core curriculum contextualising history and medical ethics, with variations in emphasis. Tours to Germany provide an understanding of the theoretical origins of the ethical violations and crimes of Nazi physicians. (...) Tours to Poland address the magnitude of the Nazi physician’s atrocities as well as displays of heroism by Jewish and righteous among the nations' physicians. Exemplary as well as shameful physician behaviour is analysed from an ethical perspective. A combination of unique educational methodologies maximises learning and personal growth, enabling participants to examine ethically complex clinical situations with extrapolation to modern-day medical practice. Learning is designed with relevance to contemporary medical ethics dilemmas such as beginning and end-of-life issues, providing tenets from which participants can develop as more ethical and informed physicians. Participant feedback confirms efficacy and worth of these growth-promoting ethics learning tours which should be expanded to other international groups and settings. (shrink)

Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and further stakeholders. However, there is scarcity of literature which connects the normative debate about justifications for different consent models with findings gained in empirical research. In this paper we discuss findings of a limited review of socio-empirical research (...) on patients’ and healthy research participants’ experiences and views regarding consent to biobank research in light of ethical principles for appropriate information and consent. (shrink)