Comments for:

Re: The Troubled Dream of Genetic Medicine

Submitter: Stephen Pemberton | stephen.pemberton@njit.edu

New Jersey Institute of Technology

Published October 10, 2006

Dr. Harry Ostrer’s review of The Troubled Dream of Genetic Medicine asserts that our book "unfairly brands” the “small, but important medical specialty” of genetic medicine. The review also claims that our “comments about racial politics are unsubstantiated and verge on being calumnious.” These unfounded accusations of slander and race baiting call for a response.
Dr. Ostrer states that we have labeled the Dor Yeshorim screening program in some Orthodox Jewish communities a “nightmare.” We do not. Actually, the person who characterized aspects of this successful innovation for the prevention of Tay-Sachs disease as “a moderate nightmare” was Dr. Francis Collins, Director of the National Human Genome Research Institute. He did so only to criticize the program's plan to expand its practice of ‘genetic matchmaking’ to cystic fibrosis and other diseases [1]. Our book’s purpose is to explore such controversies, to explain why troubles like this could arise over the proper direction of genetic medicine, and to explore how and why the story of genetic medicine played out differently in Tay-Sachs, cystic fibrosis, and sickle cell disease. Instead of attacking us for statements we did not make, Dr. Ostrer is welcome to communicate his outrage to Dr. Collins.
Dr. Ostrer has read our book superficially -- as some kind of malicious incitement. “Is genetic medicine a ‘troubled dream’?” he asks. He acknowledges that some areas have experienced troubles, noting that "documentation of the failure of gene therapy trials is the true strength of the book.” He concludes, however, that genetic medicine is not troubled at all but “an active medical specialty that provides care to millions across the globe." This tension is real, which explains why our book focuses on "the troubled dream" -- the promise of a new field, its evolution, scandals, and diversification, and the challenge of translating hype and promise to delivery of services, particularly when matters of race and ethnicity are involved.
This brings us to the question of race and calumny. Any thoughtful observer of medicine in America will know that race and ethnicity are important factors in our health priorities, and in how patients in different groups are cared for. While readers may disagree with our conclusions, Dr. Ostrer’s accusation of calumny (i.e., slander) on matters of race and ethnicity (without citing any specific example or evidence) is quite unworthy of publication in a serious professional journal. It is unfortunate that Dr. Ostrer's review is so careless – rejecting arguments we did not make, and avoiding critical questions that are at the core of modern genetics, race, ethnicity and American society.
Keith Wailoo and Stephen Pemberton
[1]. Gina Kolata, “Nightmare or the Dream of a New Era in Genetics?” The New York Times, December 7, 1993, p.1.