Need for informed consent in organ donation

By Arthur Dobrin

December 3, 2008

There has been no more famous a genius than Albert Einstein. So when the scientist died, in 1955, many were eager to understand what made him so smart. Within hours of his death, his brain was removed and since has been subject to much research.

After all these years, scientists still disagree about what, in fact, his preserved brain tells us either about Einstein the man or intelligence in general. But there is no controversy about whether it is legitimate to carry out such research. Medical science advances on what can be learned by examining the tissues and organs of the dead. Hope for cures for neurological illnesses rest upon close examination of brain tissue samples.

However, there is a debate that surrounds Einstein's brain, and that is the manner in which it wound up in the pathologist's laboratory. Thomas Harvey, who conducted the autopsy, it seems, never received clear permission from anyone in Einstein's family to remove their dead relative's brain.

A half-century later Mozelle Purifoy, a Long Island woman, has taken Mt. Sinai Medical Center, in Manhattan, and Suffolk County to court, claiming that her deceased husband's brain was removed without her consent. It turns out that the Suffolk medical examiner's office has an arrangement with Mt. Sinai to send human brains for research.

However, according to a Newsday story, Purifoy says she knew nothing about this agreement until she received a phone call telling her that Mt. Sinai was sending her a consent form. This, she says, was a week after the burial. Suffolk County's attorney states that Purifoy had given verbal permission for the brain donation and that is sufficient from a legal point of view.

The court will sort out the facts of the case as to whether Purifoy had given consent or not. The underlying moral consideration is what constitutes informed consent. If people don't know what they are agreeing to, then the agreement itself is suspect, whether written or verbal.

I once served on the Institutional Review Board at a Long Island hospital. Such boards are required to review and approve federally funded research conducted on human subjects. Each month the committee reviews proposals put forward by physicians, psychologists and social workers. The task of my subcommittee was to examine the consent form to ensure that the language was plain enough to be understood by the average layperson. Hardly a proposal came our way that didn't need some revision. What was clear to the experimenter was not at all clear to those of us who were lay people. The consent form was frequently full of technical language and so poorly worded that the consent was ambiguous.

Informed consent is even more problematic when permission is requested immediately after traumatic circumstances, such after the death of a loved one. Emotionally charged situations make communication difficult. The bereaved can't think clearly and they often don't hear what someone is really saying. People don't know what they say, can't remember saying what others have heard and don't know what was said to them. Under these circumstances, a person may consent to a request for an organ transplant or a donation for research, but it is easy to see that the consent acquired isn't really informed.

Another factor that makes informed consent difficult is that people are prone to accept the word of authority figures. They defer their own judgment to that of the expert's. They may not know quite what the researcher is asking, but since the person making the request is a professional, they assume the request must be legitimate. Only later do they realize that they may have agreed to something to which they object on moral grounds.

Whatever the outcome of the current lawsuit, a better method is needed for requesting permission for organ donations to be used in research after a patient has died. A balance needs to be found between waiting until the family can think clearly and the pressing need to gather the organs before they deteriorate. Bioethicist Arthur Caplan suggests that there be a separation between those making the request and those who are doing the research. "You can't have people think this is related to pathology or diagnosing a problem," Caplan was quoted as saying in Newsday. "You have to make it clear it's entirely separate and just for research. You can't talk vaguely about parts of brains and brain tissues."

This is a step in the right direction. Another piece needs to be education on the part of hospitals and research institutions so that when a request is made, families will be familiar with what is being asked. It's important to keep the ambiguity to a minimum in a situation that is hard enough to cope with under any circumstance.

Arthur Dobrin teaches ethics at Hofstra University, where he also hosts a podcast called "The Ethics Project."

Copyright © 2008 Newsday.com

This article posted January 17, 2009.