Acclaimed science writer Jonathan Weiner visited Phoenix in October as the featured guest at the first of several discussions this school year about medicine and society for Flinn Scholars and guests of the Arizona Consortium for Medicine, Society and Values.
On Oct. 30, Weiner spoke at the Flinn Foundation with two dozen Scholars plus physicians and consortium partners about medical decisions as they play out in his latest book, His Brother’s Keeper. This is a true-life tale of mechanical engineer Jamie Heywood, who dives into gene therapy to try and save his younger brother Stephen, who is diagnosed with ALS, better known as Lou Gehrig’s Disease.
Weiner, a self-described “science-watcher,” said the growing trend in collaboration and interdisciplinary work in biology and biomedicine, exemplified by the new Arizona Consortium, makes observers like himself “feel like we are part of that coming together.”
“To what extent should we intervene in what we still want to call the Natural Order of Things?” Weiner asked the group. “What limits do we press up against?”
In his lecture, Weiner, who spent a great deal of time and shared difficult decision-making moments with the Heywood family over the course of a year, described how his latest book was intensely personal, informed not only by the epic bioethical and humanistic questions it explores and by his closeness with the family, but also by his mother’s own battle with a neurodegenerative disorder. Jamie’s and Stephen’s struggles were really Weiner’s own struggles at the same time.
The event included a roundtable discussion, during which participants addressed questions such as, “What is the right thing to do when faced with an incurable disease?” and “What science should we do, and who decides?” An hour-long question and answer session followed, raising issues that anticipated his public lecture in downtown Phoenix later that evening.
Students in the morning’s exchange asked about literary allusions in his book, including the use of Franz Kafka’s parable “The Messenger” to describe the progression of ALS in a patient’s body.
Such literary talk led Weiner to explain that he studied poetry as an undergraduate, and believes that he brings those poetic sensibilities and ear for the lyric phrase to his science writing. He noted how the aesthetic many scientists ascribed to biology in the past is changing with the pace of technology. In the last century, he remarked, “we enjoyed [biology], not because it made something happen, but because it was beautiful, in and of itself.” Now, Weiner said, “I don’t think it’s possible to name a single corner of a single protein that might not possibly change the nature of humankind.” As the potential uses for science loom larger, it is important to retain that love for science as curiosity, for its own sake in letting mankind wonder at nature. That is one of Weiner’s major goals with his writing, he told the audience—to share with readers the excitement and personal exploration that is so important in science.
The Arizona Consortium for Medicine, Society and Values explores the ethical, humanistic, legal, and policy facets of medicine within its larger social context. The Consortium’s partners hope this collaboration will prompt the interaction of medical professionals, scholars, and students as it enhances community awareness of the role each partner plays in the widening biosciences landscape of Arizona. The partners include the ASU’s Center for Biology and Society and the Barrett Honors College; the Flinn Foundation; Mayo Clinic Scottsdale; the Translational Genomics Research Institute; and the University of Arizona College of Medicine
The Consortium has several more events slated for 2005, including a regional undergraduate bioethics conference at ASU on Feb. 25-26, and the visit of National Book Award winner, physician-writer Sherwin Nuland, who will be in residence in March in conjunction with the Barrett Honors College’s Staging of Illness course, and will present a public lecture at Mayo Clinic Scottsdale on March 9.
For more information:
Arizona Consortium for Medicine, Society and Values
“Weiner visit launches medical issues consortium,” 11/15/2004