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Words are powerful - Thoughts shape - Ideas have consequences

Jennifer Lahl

The Center for Bioethics and Culture
Posted May 24, 2004

What Does it Mean to be Your Brother's Keeper?
Doing Whatever it Takes?

Pulitzer Prize winning author, Jonathon Weiner's latest book, His Brother's Keeper: A Story from the Edge of Medicine (2004 Harper Collins), tells the story of the Heywood family. Specifically it tells the story of the battle of one brother, Jamie, trying to find a cure for his younger brother, Stephen, who has been diagnosed with ALS.
ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig's disease) is a fatal neuromuscular disease affecting 2 in 100,000 persons with 50% of the patients dying within 18 months of diagnosis. When Stephen Heywood, a healthy carpenter, is diagnosed with ALS at the age of 29, his older brother, Jamie moves into warp speed to find a cure. Jamie, armed with his Ph.D. in Engineering from MIT, sets out to build the "dream team" and find a cure for Stephen in Quixotic style. With an engineer's mind for systems, knowing how they work and how to fix them when they go wrong, Jamie gathers the best in the field of medicine and science to understand ALS and cure it before Stephen's life ends.

Weiner, a science writer, writes with such urgency that you are immediately drawn into Jamie's quest to cure this disease and begin to hope he succeeds. Jamie is charming, determined, and convincing, enabling him to quickly gain favor with the best and brightest talent needed to break the ALS code and stop this disease from progressing in Stephen's weakening body.

Mixed within this narrative is the author's own story of his mother's battle with a rare neurological disorder. Weiner wonders if each scientific discovery Jamie's team uncovers might contain a translatable benefit for his own mother. With enough people working to solve this mystery shouldn't a cure be attainable?

Though healing seems just within reach, Weiner points out his irritation with Jamie. Jamie is impatient with the scientific community and the medical profession, with FDA and RAC regulations that slow things down. He can't understand why it takes so long to move testing to human clinical trials. He gets frustrated that ALS doesn't receive enough attention because other more frequently occurring diseases get more research dollars and hours.

In the chapter titled, The Cowboy, Jamie connects with an MD and a neuroscientist that have left the U.S. to do gene therapy because they don't want to go through the chain of command for human clinical trials. Jamie is like so many in today's ethical debates. People are dying and cure seems just a clinical trial away. Let's do whatever it takes and get the job done, now. But what seems like something that should be easy to solve isn't. Weiner does a wonderful job of pulling the reader back to reality, reminding us of the complexity of the human body. Scientists must not be Cowboys. Regulations and Ethical Review Boards are a necessary part of the dream team because medicine and science must proceed boldly while exercising wisdom and caution. The price that Jamie ultimately pays for trying to save Stephen is devastating. It reminds each of us what it means to be our brother's keeper.

Jennifer Lahl R.N., B.S.N., M.A. is Founder of the Center for Bioethics and Culture and Executive Director of the Bay Area Center for Bioethics and Culture, and travels extensively speaking to groups on the issue of bioethics. The Center for Bioethics and Culture (CBC) is composed of Doctors, Nurses, Ethicists, Clergy, Educators, and other professionals coming together to educate and equip people of traditional Judeo-Christian faith in bioethics issues of the 21st Century, a century already christened "the Biotech Century," and holds periodic conferences bringing some of the best thinkers in the bioethics field together to educate and shape public policy. Contact:www.thecbc.org; Jennifer.Lahl@thecbc.org