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13 St. Thomas L. Rev. 815 (2000-2001)
The Human Genome Project: The Central Ethical Challenge

handle is hein.journals/stlr13 and id is 831 raw text is: KEYNOTE ADDRESS: THE HUMAN GENOME PROJECT: THE CENTRAL ETHICAL CHALLENGE EDMUND D. PELLEGRINO, M.D. INTRODUCTION Ever since the announcement of the project to map the Human Genome, a host of questions has been debated about its ethical implications, some reasonable and some fanciful. Until very recently, most of the debate has been speculative and opinions have covered the spectrum between genetic utopianism and genophobia. Now that responsible overviews of what has been, and what remains to be, discovered are available, it is becoming possible to ground the ethical discussions in verifiable data.' Most of the specific ethical questions raised earlier remain valid: Who owns the new information? How shall it be used? Who decides? How will the physician patient relationship be affected? Should genes be patented? Should we do everything that is possible, or should there be some restraint on experimentation? What diseases should be treated first? How do we distribute the benefits justly? Should our knowledge be used to enhance our capacities, perfect cloning of humans, design disease resistant agricultural products, and domestic animals, etc.? Even though the expected practical applications of the Human Genome Project (HGP) are mostly promissory notes, these questions cannot be postponed or ethics will again be a post facto phenomenon when it should be ahead, or at least keep pace with technological progress. If ethics lags exigency, commercial interest and utility will decide critical * Edmund D. Pellegrino, M.D., John Carroll Professor of Medicine and Medical Ethics Center for Clinical Bioethics, 4000 Reservoir Road, NW Washington, DC 20007. This paper was previously presented, in part and in modified form at the annual meeting of Catholic Bishops of North and South America sponsored by the Knights of Columbus and the National Catholic Bioethics Center in Dallas, Texas, on February 6, 2001. 1. See generally Francis S. Collins & Victor A. MeKusick, Implications of the Human Genome Project for Medical Science, 285 JAMA 540 (2001) (addressing opportunities for medical research emanating from the Human Genome Project); 77e Human Genome, 291 SCl. 1153 (2001); The Human Genome, 409 NATURE 745 (2001).

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