Women Mourn the Death of Their Men

The Council for Jewish Elderly (CJE) provides social and health services to the elderly both in the community and in its long-term care facilities. A decade ago, a benefactor established the Leonard Schanfeld Research Institute, enabling the agency to participate in evaluative research, drug studies, and research projects brought to our institutional review board (IRB) by researchers wishing to include our client population in their research. Thereafter, a local teaching hospital asked CJE to consider participating in Alzheimer's brain research, which would include autopsies. Support of such research meant that CJE would endorse the research and actively seek subjects for brain autopsy. Autopsy is currently sanctioned by CJE only if required by law. The question brought to the ethics committee was, "Will CJE support research on a demented person if the protocol includes consent for autopsy?" The ethics committee was asked to provide guidelines for CJE's IRB.

Traditionally the Jewish religion disapproves of any postmortem cutting of the body. A basic principle of Jewish law relating to death is the "honor and respect due even to a lifeless human being." Rabbi Hayim Halevy Donin writes in To Be a Jew: A Guide to Jewish Observance in Contemporary Life, "Consensus of rabbinic rulings during the past several centuries has strongly prohibited post-mortem examinations as a desecration of the dead." He also says "allowances have been made if there was a reasonable prospect that it would contribute to saving the life of another patient at hand" [italics mine].

CJE, through the Research Institute, wants to actively participate in research on dementia, including Alzheimer's disease, which is a critical illness not only for clients, but also for their families and society. The financial and social implications of this illness are growing yearly as the elderly population increases. As a society we can probably agree that all scientific efforts possible, including autopsy, must be exerted to solve the mysteries of the dementias. Autopsy findings can increase our understanding of these illnesses, particularly in correlating cognitive, functional, and behavioral changes during life with postmortem examination of tissue. Further, autopsy is the only definitive way to diagnose Alzheimer's disease.

Autopsy for the purpose of research is not performed for any individual benefit, but to produce a universal social benefit. This does not appear to be what the rabbis had in mind when they weighed the value of saving a life that is in immediate danger (including organ transplants) against the value of not desecrating the dead. Instead, the rabbis' judgment invokes the value of tikkum olam (repairing or helping the world), which approves of participating in autopsy studies that further knowledge and improve practice.

Some people in the Jewish community say that the greater good should be served and, that if Jews expect to benefit from the research, they should also participate in it. Others argue that research autopsies compromise Jewish values, an act a Jewish organization should not sanction. Some would say that a person who donates a body part to save another's life, rather than committing mutilation, has performed a mitzvah (adhering to the halakhic law to save a life). On the other hand, if an organization participates in research that includes autopsy for obtaining knowledge, it stretches the Jewish values it stands for and risks condemnation by the community. It was not clear to the ethics committee how sanctioning autopsy through our agency would make a significant difference in the research effort on Alzheimer's disease. We had to ask ourselves whether traditional values were more important than science.

On the other hand, if an individual within the institution chooses to participate in research requiring autopsy, should that person not be able to do so? In our pluralistic society, there are many who value the right to choose tikkum olam (a principle of repairing the world) and welcome the opportunity to further understanding of devastating dementias. CJE does not want to stand in the way of individuals who make that choice.

CJE fins itself, like other Jewish organizations around the country, struggling with competing desires to expand our knowledge about dementing illnesses, to participate in medical research, and to uphold Jewish values.

Phyllis Mitzen is the director of resources and development at the Council for Jewish Elderly in Chicago.