To protect or to publish: confidentiality and the fate of the mentally ill victims of Nazi euthanasia
Journal of Medical Ethics 2009 June; 35(6): 361-364
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.
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Confidentiality; Death; Euthanasia; Family Members; Genes; Holocaust; Mental Illness; Patients; Publishing; Researchers; History of Health Ethics / Bioethics; Confidentiality; Eugenics; Torture and Genocide; Journalism / Mass Media Ethics; Scientific Research Ethics; Health Care for Particular Diseases or Groups;
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