Ethicists, rabbis address genetic research on the Web

There are many times that the Internet is criticized for being a world wide waste of time. And far too often, those criticisms are completely valid. But used properly, the Internet can be a critical tool for joining communities and perhaps even saving lives. This is particularly true for people searching for medical information in the burgeoning field of genetic research. In a future column, I will present the best places to find Jewish genetic resources on the Internet. But first, the ethical and halachic challenges of genetic research.

I must emphasize very strongly that although you can find a wealth of information out there, the Internet must not be considered a substitute for trusted medical or rabbinic experts who are familiar with your particular circumstances. Also, pay close attention to the credentials of the authors of anything you read on the Web. Not everyone is a reliable or accurate source of information.

"Why Is This Gene Different From all Other Genes?" That's the name of a recent conference that examined scientific, ethical and religious genetic issues facing the Jewish community. Robert Pollack, a professor of biological sciences, says that advances in decoding the human genome have allowed us to develop new screening tests for genetic diseases found among Ashkenazi Jews. But those advances also open a Pandora's Box of ethical dilemmas. (Should a couple considering marriage opt for genetic testing? What should they do if they receive heartbreaking results? Does an embryo sitting in a laboratory have the same status as a fetus in utero?) The conference was organized by the Association of Orthodox Jewish Scientists, whose Web site at www.jewishgenes.org has many thought-provoking articles geared to both scientific and general audiences.

The controversy surrounding genetic screening and its ethical and halachic implications is dealt with at length in several areas on the Internet. In his essay on genetic screening — www.cc.ndsu.nodak.edu/ instruct/mcclean/plsc431/ students/mike.htm — North Dakota State University student Mike Wetzstein gives an overview of this issue and explains some of Judaism's concerns with genetic screening. "The obligation with regard to procreation is not suspended simply because of the statistical probability that some children of the union may be deformed or abnormal," he writes.

One of the greatest fears about genetic testing is the stigma that could occur if someone is known to be a carrier of a disease. I recommend a fascinating article in the Jewish Homemaker magazine that looks at a Brooklyn-based organization called Dor Yeshorim, at http:// ok.org/homemaker/chanukah99/

health.html Dor Yeshorim tests young men and women before they begin to date. Their results are kept anonymously and are only available to rabbis, who compare the charts when couples seriously contemplate marriage. If both are carriers for a certain disorder, they are told their prospective union is "not advisable." No one is told if he or she is a carrier, only that both people must look for another match.

The Dor Yeshorim method has apparently gained wide acceptance through Brooklyn's Orthodox community but has also been criticized by Rabbi Moshe Tendler, a professor of Jewish medical ethics at New York's Yeshiva University. In an article in the Yeshiva University newspaper — www.yucommentator.com/ archives/v62iA/news/doryesharim.html — Tendler expresses concerns with mass screening programs since finding a genetic defect "can lead to discrimination by insurance companies, employers, and others looking to be married." He also did not approve of withholding the results from those being tested.

Dr. Fred Rosner, a professor of medicine at Mount Sinai School of Medicine in New York City, concludes that genetic screening and genetic therapy "are permissible in Judaism when used for the treatment, cure, or prevention of disease. Such genetic manipulation is not considered to be a violation of God's natural law but a legitimate implementation of the biblical mandate to heal." The article is at www.us-israel.org/jsource/Judaism/

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