_______________ GENE BLUES BY JEFFREY OBSER (04/06/98)

Please don't accept any more articles on scientific issues from Jeffrey Obser; his ignorance is stunning. In his rambling and incoherent "Gene Blues" article, he states, "A perfect illustration is 'the' breast cancer gene, BRCA-1. The first year after it was identified in 1994, women with a certain mutation to that gene were told they had an 85 percent chance of getting cancer. But within a year, new studies lowered that to 50 percent. Last May, a study came out in the New England Journal of Medicine with a 16 percent figure." A quick glance at the abstract of the NEJM article (thoughtfully linked by Obser) reveals that it doesn't say anything of the sort. Rather, the article reports that "BRCA1 mutations were identified in 16 percent of women with a family history of breast cancer." Obser's error is basic and pretty glaring: 16 percent of women with a family history of cancer does by no stretch of the imagination equal a 16 percent chance of getting cancer. So far as I am aware, nobody has actually ventured to predict the lifetime risk of cancer for women who do have the gene (which would be a pretty hard thing to know for a gene that was discovered only four years ago). What this article actually tells us is that there are many people without BRCA-1 who get cancer anyway; it gives us no information whatsoever about the risk to people who do have the gene. This sort of distinction, while elementary to the scientist, can be confusing to the lay reader -- which is all the more reason why scientifically literate writers are needed to report on such issues, so as to clarify such matters rather than adding to the confusion. Obser, clearly, does not fill the bill. --Terrell T. Gibbs, Ph.D. Assistant Professor Department of Pharmacology Boston University School of Medicine Jeffrey Obser responds: Professor Gibbs is correct that I made one error -- the study I cite did not address the lifetime risk of breast cancer for BRCA-1 mutation carriers, still estimated at 50 to 55 percent. But the gradual discrediting of the BRCA-1 test's predictive value is well documented, including in that particular study's conclusion: "Even in a referral clinic specializing in screening women from high-risk families, the majority of tests for BRCA-1 mutations will be negative and therefore uninformative." By acknowledging that no firm risk predictions are possible for a genetic mutation discovered only four years ago, Gibbs reinforces my overall point -- that it is rather soon for individuals or society to place too much faith in genetic testing for complex diseases. As a family affected by Huntington's disease, I would like to thank you for your most in depth, honest and thought-provoking article. My family and I related to so much of what you wrote, as for some years now we have discussed these issues only with each other, and now at last someone has put into words our thoughts and published them. Thank you. --Tan Hackerson and Family United Kingdom Jeffrey Obser is correct in his view that the information currently available from genetic testing is at best incomplete, and at worst, harmful, misleading and subject to abuse. But all that misses the point for a lot of people. I am participating in a study of Ashkenazi Jews regarding three mutations on the BRCA-1 and BRCA-2 genes and their connection to several inherited reproductive cancers. There is a significant amount of ovarian cancer in my family, but because of the way in which it is inherited, it is not clear whether I am at a heightened risk of developing it later in my life. I recently received my results, and realized just how inconclusive they are. During the 48 hours in between discovering that the results were available and finding out what they were, I realized that either way, I was being handed neither a death sentence nor a guarantee that I would never develop breast or ovarian cancer. Either way, I will have to make some decisions regarding further information collection and other actions I may take in order to ensure that I am doing as much as possible to avoid developing a stage-three case of ovarian cancer. Nonetheless, I am glad I am in the study and have some information about my genetic predisposition for these diseases. I would rather have this information, as inconclusive as it is, than not. The limits, as well as the possibility of abuse, of this information, are quite clear to me. I am hopeful that in my lifetime, both of these will decrease to a point where we will all welcome obtaining all possible genetic and medical information about ourselves. --A. Wolfson SALON | April 17, 1998

R E C E N T L Y+| WAS JESUS GAY? (04/06/98)

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