“There is no closure. There’s an opening. —”

Accompanying someone on the journey toward death is “an incredible luxury,” said Nancy H. Cobb, speaking at a lecture sponsored by the Program for Humanities in Medicine in January. “It’s an incredible gift — a kind of gestation period before someone dies. It’s a holy and spiritual time.” Cobb, an actress and writer, wrote In Lieu of Flowers: A Conversation for the Living after watching her mother die at The Connecticut Hospice in 1996. Cobb’s mother had initially asked her daughter to help her end her life but forgot that request as her Alzheimer’s progressed. Cobb is grateful: watching her mother die gradually “granted me an extraordinary and tender farewell, and my mother a final measure of grace.” Cobb said that enduring the death of a loved one is a maturing experience and that seeking closure is misguided. “There’s no closure. There’s an opening, and we’re cracked open.” She said “unexpressed grief” creates barriers between doctors and patients and urged members of the audience to share their “seminal stories” of witnessing death. “We’re all dying to talk,” she said.

Cathy Shufro

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Nailing down the language of stem cell biology

Two words that rarely pass the lips of Irving L. Weissman, M.D., in public are “embryo” and “clone.” He has reason for caution. In January, when Stanford University announced that Weissman would lead a privately funded stem cell research project, some press accounts gave the false impression that his research was directed toward reproductive cloning. As the first scientist to isolate hematopoietic stem cells, Weissman has a long history in the field and believes that both the public and many researchers misuse the terminology. “Those [are] two terms we ought to have an understanding about,” he said at a talk at the medical school in January. “Otherwise we can’t discuss this issue.”

Like most of the scientific community, Weissman is adamantly opposed to reproductive human cloning. He is concerned, however, that the government will ban what is commonly known as “therapeutic cloning,” or the use of nuclear transfer techniques to seek treatments for disease. “If you are in a position of authority to enact a ban on this kind of research, you are responsible for the potential lives that are lost,” he said.

John Curtis

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A tragedy of HIV exposure in rural China

Last August, Chinese authorities detained a mild-mannered, bespectacled physician named Wan Yan Hai and held him for almost a month. His crime? Helping to inform the world of an emerging HIV/AIDS crisis in the Chinese hinterlands. During a visit to Yale sponsored by the Yale-China Association in December, Wan told the tragic story, which was the subject of a series of articles in The New York Times last year. Impoverished farmers who had sold their blood were reinjected with pooled red blood cells after the plasma had been removed. The pooled blood product was derived from many donors and was not screened for pathogens. “Many, many experts believe there are at least 1 million infected with HIV in Henan province,” said Wan, one of China’s leading AIDS activists. “I believe it is 2 million, maybe even more. In most of the villages, people got infected by blood selling.” Wan received a 2002 Award for Action on HIV/AIDS and Human Rights from the Canadian HIV/AIDS Legal Network and Human Rights Watch and a separate award from the International League for Human Rights.

John Curtis

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A structure to accommodate therapeutic cloning

Following close behind biomedical advances are moral quandaries, said Francis Fukuyama, Ph.D., a political scientist at Johns Hopkins University, a member of the President’s Council on Bioethics and the author of Our Posthuman Future: Consequences of the Biotechnology Revolution. Speaking at the Bioethics and Public Policy Seminar Series in January, Fukuyama called for a new regulatory approach to issues such as human cloning. Although therapeutic cloning is desirable, he said, allowing it would make reproductive cloning harder to ban.

“There is a short-term need to establish some sort of regulatory structure to permit therapeutic cloning to go ahead,” he said. “In the longer term, the reason you need to think about the broader regulatory structure has to do with the prospect of nontherapeutic uses of biomedicine, some of which are here already and some of which will be coming down the pike in the next few years. — Is it legitimate to use these techniques to choose boys over girls or vice versa? If there’s a way of preventing a biological predilection for homosexuality, is that something that’s legitimate for parents to choose?

“I think there are areas where more regulation, rather than less, is called for.”

John Curtis

 
Spring 2003
Yale Medicine

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Originally published in Yale Medicine, Spring 2003.
Copyright © 2003 Yale University School of Medicine. All rights reserved.