Glenn McGee

Most parents want to improve the lot of their children. Providing a safe environment, a healthful diet, a good education, exposure to diverse experiences are some of the more conventional means of enhancing the health and opportunities of children. Increasingly, parents or would‐be parents are being offered genetic means for enhancing their children's lives. To whichever means parents turn, the road to enhancement is paved with some deadly and not‐so‐deadly sins that all parents and social stewards ought to learn to avoid. They are calculativeness, overbearingness, shortsightedness, hasty judgment, and pessimism.

A lot of people owe kind words to Tom Murray. Not because they hurt his feelings, or because he is easily the nicest guy in bioethics. The debt stems from the palpable silence that accompanied the release of Murray's trenchant and beautiful book, TheWorthofaChild. Somehow, in the shuffle to write and rewrite books about cloning and octuplets and $50,000 eggs, Murray's astonishingly comprehensive treatment of the meaning of the parent–child relationship passed undetected across the radar screens of virtually everyone who writes about reproduction and genetics. In the year since I read TheWorthofaChild, I have paused dozens of times while reading or listening to scholars lament the dearth of careful work on the changing nature of baby-making. Each time this happens I grow more surprised that Murray's Child, which is handsomely bound, well-indexed, and published in the best style by University of California Press, isn't mentioned. This review is one scholar's attempt to right the balance. TheWorthofaChild by Thomas Murray is the most rigorous, most even-handed, and most comprehensive book ever written about the ethical issues associated with making a baby. It is also a very good read, a sensitive and moving portrayal of the struggle to be good at making and raising a child

Conceived as a solution to clinical dilemmas, and now required by organizations for hospital accreditation, ethics committees have been subject only to small-scale studies. The wide use of ethics committees and the diverse roles they play compel study. In 1999 the University of Pennsylvania Ethics Committee Research Group (ECRG) completed the first national survey of the presence, composition, and activities of U.S. healthcare ethics committees (HECs). Ethics committees are relatively young, on average seven years in operation. Eighty-six percent of ethics committees report that they play a role in ongoing clinical decision making through clinical ethics consultation. All are engaged in developing institutional clinical policy. Although 4.5% of HECs write policy on managed care, 50% of HEC chairs feel inadequately prepared to address managed care. The power and activity of ethics committees parallels the composition of those committees and the relationship of members to their institutions. The role of ethics committees across the nation in making policies about clinical care is greater than was known, and ethics committees will likely continue to play an important role in the debate and resolution of clinical cases and clinical policies

When one examines the emerging debate about genetic patenting, it becomes clear that those who oppose so-called misunderstand genetics or apply inappropriate moral and jurisprudential theory. In this brief essay I examine some arguments against gene patents of the variety, and conclude that patents on methods for detecting the presence of a genetic correlation with disease-related (and other) phenotypes can be appropriate, and that with several precautions the U.S. Patent and Trademark Office should continue granting patent protection to investigators who generate genetic disease diagnostic innovations

The role of the healer is expanding. Attempts by physicians to enhance human capacity are but one among many new medical projects. The twentieth century ushered in significant changes in therapeutic modalities, and the past two decades have seen the role of the physician reshaped by economic, political, and dramatic new social mores. People ask new and different things of their clinicians. Under managed care, the primary care clinician is expected to have much more skill than was traditionally expected of a general internist, and new incentives force physicians to much more explicitly ration the care they provide to patients and to patient populations. But perhaps no change in the contemporary world of health portends more long-term effects than the introduction of enhancement technologies

Clinical bioethics is big business. There are now hundreds of people who bioethics in community and university hospitals, nursing homes, rehabilitation and home care settings, and some who play the role of clinical ethics consultant to transplant teams, managed care companies, and genetic testing firms. Still, there is as much speculation about what clinically active bioethicists actually do as there was ten years ago. Various commentators have pondered the need for training standards, credentials, exams, and malpractice insurance for ethicists engaged in clinical consultation. Much of the discussion seems to accept an implicit presumption that all clinical ethics consultation practices look pretty much alike. But is this accurate? What do clinical ethicists do, how and where do they do it, and what kind of clinical ethics is useful in the hospital and in other settings?

In 1992, the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) passed a mandate that all its approved hospitals put in place a means for addressing ethical concerns.Although the particular process the hospital uses to address such concernsmay vary, the hospital or healthcare ethics committee (HEC) is used most often. In a companion study to that reported here, we found that in 1998 over 90% of U.S. hospitals had ethics committees, compared to just 1% in 1983, and that many have some and a few have sweeping clinical powers in hospitals

Genetic counselors are on the front lines of the genetic revolution, presented with tests of varying predictive values and reliability, unfair testing distribution mechanisms, tests for conditions where no treatment exists, and companies that oversell the usefulness of their tests to physicians and nurses. Many scholars, both genetic testing task forces as well as the newly formed National Bioethics Advisory Commission, have all noted that genetic counseling programs and services are critical for adequate genetic testing. At the same time, in our own work at the University of Pennsylvania we have encountered many requests for new materials for training genetic counselors in ethics and providing ethics resources for genetic counseling. One of us has noted elsewhere that it is crucial that resources from the Human Genome Project, the Centers for Disease Control, and other public agencies be devoted to providing better resources for genetic counselors facing difficult ethical issues. Although the American Board of Genetic Counseling requires that training programs include some formal coursework in ethics, many wonder whether enough is being done to prepare genetic counselors for an ever-tougher job, and in particular there has been much concern expressed about whether is an outmoded ideal that hampers this profession as it attempts to grow and identify the value of its practice. On the basis of many comments to us by genetic counselors and on the basis of our review of the current literature, we hypothesized that accredited genetic counseling training programs are poised at the turn of the century to begin planning a new approach toteaching the philosophy of genetic counseling, one that integrates philosophical, theoretical, and ethical training throughout thecurriculum in genetic counseling