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Genetics Research

The ethical questions emerging from the field of genetics are creating a sense of urgency due to the enormous scale of research associated with the Human Genome Project (HGP), sometimes referred to as the Human Genome Initiative (HGI). Started  in 1988, HGP is a “big science” project, international in scope, involving numerous laboratories and associations of scientists strewn across the landscape. It has a current annual U.S. budget of $200 million with a fifteen-year timeline and a $3 billion total price tag.Reporting on the Working Group on Ethical, Legal, and Social Issues (ELSI) jointly sponsored by the National Institutes of Health (NIH) and the Department of Energy (DOE), Elinor J. Langfelder and Eric...The scientific goal is to map and sequence the human DNA which will tell us the order of the four base pairs—the A,T,G and C nucleotides—that compose the DNA molecule. The mapping phase was completed in 2001, and the focus then shifted to understanding the functions of the 40,000 or so genes in each of our body’s cells. The study's motive is to identify the 4,000 or so genes that are suspected to be responsible for inherited diseases and to prepare the way for treatment through genetic therapy. For the human beings whose cells contain the DNA being studied this new knowledge will require new thinking about the ethical, legal, and social dimensions of life.

It is significant to note that in the case of HGP, we have scientists who are already aware that their research will have an impact on surrounding society and are willing to share responsibility for it. When James D. Watson counseled the U.S. Department of Health and Human Services to appropriate the funds for what would become HGP, he recommended that 3% of the budget be allotted to study the ethical, legal, and social implications of genome research. “We must work to ensure that society learns to use the information only in beneficial ways,” says Watson, “and, if necessary, pass laws at both the federal and state levels to prevent invasions of privacy...to prevent discrimination on genetic grounds.”Invoking the principle of confidentiality in order to avoid job discrimination is seriously considered by the Joint NIH-DOE Working Group on Ethical, Legal, and Social Issues (ELSI) of human genome research....Watson, who along with Francis Crick, is famed for his discovery of the double helix structure of DNA, was the first to head the Office of Human Genome Research at the National Institutes of Health (NIH). He recently resigned amidst a dispute with former NIH director Bernadine Healey over the morality of patenting of DNA sequences. Moral controversy has already broken out on this and numerous other issues. Hence, we can expect genetics and ethics to court one another for the next few years, leading perhaps to a marriage, to genethics."Biotechnology: Its Challenges to the Churches and the World," August 1989, World Council of Churches, P.O. Box 2100, 1211 Geneva 2, Switzerland, p.2 (hereinafter: WCC).  A handful of theologians and ethicists have begun a serious dialogue with research scientists to sort through the issues.

Email link | Printer-friendly | Feedback | Contributed by: Dr. Ted Peters

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