Emory Report homepage  

December 5 , 2005
Panel sets research guidelines for ‘recently dead’

By Vincent Dollard

For the first time, a consensus set of ethical guidelines has been published to give individual medical institutions—and the medical community at large—a foundation on which to launch debate or consider studies with a growing research population: the recently dead.

Convened by Rebecca Pentz, professor of hematology and oncology in research ethics at the Winship Cancer Institute and lead author of the study, a multidisciplinary panel agreed unanimously on specific recommendations that balance potential research benefits with dignity and respect for the subjects. The term “recently dead” includes cadavers with no heartbeat as well as brain-dead cadavers still on ventilators or other technological supports.

The panel, known as the Consensus Panel on Research with the Recent Dead, is made up of 15 ethicists, clinicians, researchers, patient and religious advocates from around the United States. After developing the initial set of recommendations, the panel will review or raise new issues as appropriate.

According to Pentz, the guidelines published in the Nov. 5 issue of Nature Medicine are based on the principle of respect for persons, which the panel believes should extend to the dead. Therefore, the individual’s goals and wishes are to be honored by the research in which they participate.

The panel’s recommendations include specifics on:
• ensuring scientific and ethical review and oversight;
• involving the community of possible research subjects in review and oversight;
• coordinating research with organ donation and procurement organizations;
• ensuring that the recently dead are the best population for the proposed research;
• conducting procedures that are respectful of the dead and time-limited;
• obtaining the preferred authorization of first-person consent through surrogate consent or research directives;
• protecting confidentiality of the patient and family; and
• ensuring the research does not result in costs or payments to the family.

“We hoped to create dialogue among the institutions who currently review research with the recently dead, as well as answer and anticipate questions from individual researchers and institutional review boards at research institutions that are considering programs,” Pentz said. “We want the guidelines to give research centers a confidence to properly address and assure patients and families that they and/or their loved ones will be treated with respect and dignity, and that their participation in the research will be not only completely voluntary, but highly valued.”

Legal but often debated over the last 25 years, research on dead individuals has emerged in recent years. The University of Texas M. D. Anderson Cancer Center in Houston and the University of Pittsburgh have research programs under way for the recently dead, and have ethical guidelines for their individual programs in place. Representatives from both institutions participated in the consensus panel.

Research using the recently dead, currently a rare practice due in part to ethical considerations, is expected to increase as new technologies such as nanodevices and targeted therapies evolve and require sophisticated research methods. Researchers report that “fresh” tissue is critical in the study of human degenerative diseases such as cancer, Alzheimer’s disease and multiple sclerosis.

M. D. Anderson is working to develop the first molecular map of the human vasculature in part by gathering data from biopsies of organs administered with a library of peptides or phages that focus on specific areas of the body. Wadih Arap, professor of medicine and cancer biology at M. D. Anderson, and his colleagues are using the data to learn more about delivering targeted therapies to intended organs.

“This type of research may go against the human grain at first thought, but cancer patients generally cannot donate their organs after their death due to their disease, and there are many patients and families who see this research as an alternative to organ donation,” said Arap, who worked with Pentz on the guidelines established at M. D. Anderson in 2001. “It is yet another way, beyond clinical trials or donating their bodies to science after death, for patients and/or their families to give back to humankind.”

TOP