In Nazi Germany, approximately 200 000 mentally ill people were murdered under the guise of euthanasia. Relatively little is known regarding the fate of the Jewish mentally ill patients targeted in this process, long before the Holocaust officially began. For the Nazis, Jewish mentally ill patients were doubly cursed since they embodied both “precarious genes” and “racial toxin”. To preserve the memory of the victims, Yad Vashem, the leading institution dedicated to documentation of the Holocaust, actively collects information and documents (...) the fate of victims in an open online database. Recently, a list of approximately 1200 names of Jewish mentally ill euthanasia victims has been compiled from hospital archives. Their fate remains unknown to surviving family members. Given the duty to preserve medical confidentiality, can this list be publicised for public interest and for notifying families—publicising names and death circumstances, including where “killed” would immediately indicate that the person had had a mental illness? Does the right to medical confidentiality lapse upon death? Is time elapsed since death a factor? Can opposing obligations of preserving victims’ memory over-ride medical confidentiality? What if a family member objects to a grandparent’s name being exposed on the list of mentally ill patients? This article considers these issues as well as the “rational” and “non-rational” factors in ethical decisional making surrounding this unique dilemma. Several possible solutions are proposed including preserving the list in a locked database for access by families and researchers, publicising in the media that such a list exists, publishing the information online without any identifiers and submitting the information to historians, allowing them to process the data as they see fit. (shrink)

I. Three Basic rights. This book is about the moral minimum--about the lower limits on tolerable human conduct, individual and institutional.

The core of Australia’s response to asylum seekers who arrive in an unauthorised manner has been to detain them in immigration detention centres until they are judged to engage Australia’s protection obligations or, if they do not, until they are returned to their country of origin. For a number of asylum seekers this has resulted in very prolonged detention. This policy has aroused a storm of controversy with very polarised positions being taken by participants in the debate. In particular, the (...) claim has frequently been made (including by this author) that the circumstances and duration of immigration detention cause substantial harm to the mental health of a significant number of detained asylum seekers. A rational debate on the effects of detention has been hampered by the fact that the Australian government has not allowed researchers access to the detention centres in spite of persistent requests for access by professional bodies. This paper is written in response to the following questions posed by the Journal: Is there a case to be made for individuals agreeing to participate in research studies and for the wider population of current and future detainees to be involved in research without informing either the detention provider or the host nation? Is it legitimate for a researcher to engage in potentially deceptive actions in order to obtain access to such detention facilities to undertake research? What ethical framework should underpin such research? Although there is very little guidance in the literature on the ethical conduct of research in settings such as immigration detention centres, a consideration of the ethical implications of carrying out research in the manner raised by these questions leads this author to conclude that such research cannot be ethically justified. Governments must be persuaded to allow, and to provide substantial support for, ethically conducted research on all aspects of detention. There is also a need for the development of an explicit ethical framework for the conduct of research in settings characterised by a very problematic human rights context. (shrink)