Depending on how you look at it, Masha Gessen’s “Blood Matters” (Harcourt) is either an unusually philosophical memoir of a cancer diagnosis or an unusually personal account of the complex ethical questions surrounding the issue of genetic testing. Gessen writes about the restrictions, official and unofficial, that have been placed on people’s access to information that some believe could destroy them.
‘It’s important to be calm, not to get excited. It’s not good for the heart,” centenarian Fred Feuerberg said. “And I never ate much. I never overate.”
When Carly White was an infant, her parents, Jim and Dolores, noticed that she had trouble controlling the movement of her eyes. Three years later, a ballet teacher observed that Carly did not have much control over her legs. Trips to the pediatrician yielded no answers, but a visit to a neurologist ended in a diagnosis of low muscle tone, a condition that often results in delayed motor skills and trouble with coordination.
News articles in recent years have brought a steady stream of revelations about genetic studies of Jewish ancestry. The new data indicate that Kohanim (the “priests” among the Jews) are largely descended from a single ancient ancestor; that Jews from far-flung corners of the Diaspora are more closely related to one another than to any other people; that a group of non-Jewish, Bantu-speaking Africans called the Lemba share rare genetic markers with Jewish Kohanim, and that nearly half of the Ashkenazic Jews are descended from four women who probably originated in the Levant.
Last March, after placing a successful bid on the Web site caddyforacure.com, golf lover Jon Huzarsky, a senior vice president of a Manhattan investment bank, was able to spend a day caddying for professional golfer Steve Stricker at the World Golf Championships. The caddying opportunity, which Huzarsky heard about from a friend, was “by far, the greatest golf experience of my life.”
Tay-Sachs disease has been significantly curbed in the Ashkenazic Jewish community, thanks to increased awareness and a comprehensive screening process — which is especially popular in Hasidic communities.
The Senate this July voted unanimously to name September National Tay-Sach’s Awareness Month. The resolution was introduced by Senator Sherrod Brown of Ohio and co-sponsored by Senator Evan Bayh of Indiana. At this point, Tay-Sachs, a hereditary degenerative neurological disease, has no cure. The National Tay-Sachs & Allied Diseases Association, Inc., the oldest genetic disease organization in America, has endorsed Brown’s resolution.
One of the largest collaborative research teams ever assembled has concluded a decade-long study that may unlock the secrets behind Crohn’s disease.
In an article she wrote this past spring for the Journal of Law, Medicine & Ethics, bioethicist Laurie Zoloth approached from a Jewish perspective the moral choices posed by advances in genetic and medical research. While acknowledging the public sense of “moral panic” at the thought of genetic enhancement, she argues that the commandment to heal, the priority of saving a life and the belief that the natural world is as yet unfinished have provided a justified context for experimental therapy, including genetic research, in Judaism. While we must be concerned about “ethical boundaries” for genetic enhancements, “[h]umans are mandated to actively use and control the natural world, to act as partners in God’s creation, and to do tikkun olam (repairing the world),” she writes.
A broad screening program in Israel for Type 1 Gaucher disease, the most common of the Jewish genetic diseases, is proving controversial, Israeli researchers noted in a September 2007 study in the Journal of the American Medical Association.