Research uses of human bodies maintained by mechanical ventilation after being declared dead by neurological criteria, were first published in the early 1980s with a renewed interest in research on the newly or nearly dead occurring in about last decade. While this type of research may take many different forms, recent technologic advances in genomic sequencing along with high hopes for genomic medicine, have inspired interest in genomic research with the newly dead. For example, the Genotype-Tissue Expression program through the (...) National Institutes of Health aims to collect large numbers of diverse human tissues with the eventual goal of elucidating the genetic bases of common diseases through a better understanding of the relationship between genetic variation and gene expression. (shrink)

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)

Over 115 000 people are waiting for life-saving organ transplants, of whom a small fraction will receive transplants and many others will die while waiting. Existing efforts to expand the number of available organs, including increasing the number of registered donors and procuring organs in uncontrolled environments, are crucial but unlikely to address the shortage in the near future and will not improve donor/recipient compatibility or organ quality. If successful, organ bioengineering can solve the shortage and improve functional outcomes. Studying (...) manufactured organs in animal models has produced valuable data, but is not sufficient to understand viability in humans. Before risking manufactured organ experimentation in living humans, study of bioengineered organs in recently deceased humans would facilitate evaluation of the function of engineered tissues and the complex interactions between the host and the transplanted tissue. Although such studies do not pose risk to human subjects, they pose unique ethical challenges concerning the previous wishes of the deceased, rights of surviving family members, effective operation and fair distribution of medical services, and public transparency. This article investigates the ethical, legal and social considerations in performing engineered organ research on the recently deceased. (shrink)

The U.S. National Institute of Allergies and Infectious Diseases and the National Institute of Mental Health have a new research priority: inclusion of terminally ill persons living with HIV in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life HIV cure research is relatively new, the scientific community has a timely opportunity to (...) examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders. EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable. (shrink)

ZusammenfassungIn der ethischen Debatte um die Forschung mit Biobanken wird selten zwischen verschiedenen Biomaterialien differenziert. Vor diesem Hintergrund widmet sich die vorliegende qualitative Interviewstudie erstmals den praktischen Herausforderungen, die sich bei der Sammlung von postmortal gewonnenem menschlichem Gehirngewebe zu Forschungszwecken aus Sicht von in diese Praxis involvierten Experten in Deutschland stellen. Im Zentrum der ethischen Analyse stehen Herausforderungen der Spenderrekrutierung, der Kommunikation über eine Gehirnspende sowie der informierten Zustimmung. Unsere Ergebnisse relativieren zum einen die Annahme eines sogenannten Spendermangels, insofern insbesondere (...) Kliniker eine Gatekeeper-Rolle bei der Spendergewinnung innehaben. Deren Einstellungen sollten daher als ein die Praxis unmittelbar beeinflussender Faktor stärker berücksichtigt werden; zudem sollten im Wissen um bestehende moralische Vorbehalte Ansätze zur Verbesserung der professionellen Kommunikation entwickelt werden. Bezüglich der Regelung der Einwilligung in postmortale Forschungsspenden wurde in unserem Sample das Bemühen deutlich, den ethischen Vorrang der Organspende nicht zu gefährden und die Postmortalspende vor Assoziationen mit der Organspende zu bewahren. Zur Sicherung des Vertrauens in die Forschung sowie der Autonomie von Spendern befürworteten die Experten nicht nur die Anwendung einer Zustimmungsregelung, sondern auch ein den Familienangehörigen explizit eingeräumtes Recht, einer Gehirnspende selbst dann zu widersprechen, wenn der Verstorbene seine Zustimmung erteilt hat. Die Erfahrung zeigt, dass eine offene Kommunikation über das Erfordernis eines familiären Konsenses zu einer hohen Akzeptanz des Spenderwillens in der Praxis führt. Daher könnte ein solcher, auf den Dialog von Spender und Angehörigen zu Lebzeiten bauender Ansatz auch instruktiv für die Realisierung von Spenden im Kontext der Organspende sein. (shrink)