Early last year, the GenEthics Consortium (GEC) of the Washington Metropolitan Area convened at George Washington University to consider a complex case about genetic testing for Alzheimer disease (AD). The GEC consists of scientists, bioethicists, lawyers, genetic counselors, and consumers from a variety of institutions and affiliations. Four of the 8 co-authors of this paper delivered presentations on the case. Supplemented by additional ethical and legal observations, these presentations form the basis for the following discussion.

In responding to our paper “Germ-Line Therapy to Cure Mitochondrial Disease: Protocol and Ethics of In Vitro Ovum Nuclear Transplantation” (CQ Vol 4., No. 3), Matthew D. Bacchetta and Gerd Richter include several misinterpretations and misrepresentations of our IVONT protocol and structure for ethical debate. We actively invited scrutiny of our IVONT protocol; however, for us to seriously respond to criticisms of our publication, we suggest respectfully that those who critique the article critique the protocol that we proposed. First and foremost, we certainly do not have a “misunderstanding of cellular biology” regarding mitochondrial genetics.

On 5 July 1996 a sheep named Dolly was born in Scotland, the result of the transfer of the nucleus of an adult mammary tissue cell to the enucleated egg cell of an unrelated sheep, and gestation in a third, surrogate mother sheep. Although for the past ten years scientists have routinely cloned sheep and cows from embryo cells, this was the first cloning experiment that apparently succeeded using the nucleus of an adult cell.

In a recent article Thomas May has argued that the use of advance directives (ADs) to respect a no longer competent patient's autonomy is a failed strategy. Respect for patient autonomy is clearly one of the guiding moral principles of modern medicine, and its importance is reflected in medical emphasis on informed consent. Prima facie, at least, ADs seem likewise to respect patient autonomy by allowing patients to make decisions about treatment in advance of situations in which the patient may no longer be able to specify the form of treatment desired. So a claim that ADs do not extend patient autonomy to these situations of diminished competence represents a serious criticism of our understanding not only of advance directives, but of autonomy as well.

We appreciated the important commentary provided by Michelle Oberman on our paper, “Discontinuing Life Support in an Infant of a Drug-Addicted Mother: Whose Decision Is It?” (CQ Vol. 6, No. 1). For the most part we agree with Oberman's analysis of the issues, but there are seven points of variance, either of conception, emphasis, or accuracy. We wish to clarify these and welcome the chance her commentary provided to offer aspects of the social situation surrounding the case we presented.

The following points aim to shed light on the cloning debate by giving information on the scientific aspects of cloning and the ethical problems relating to them.

Clinical bioethics is big business. There are now hundreds of people who “do” bioethics in community and university hospitals, nursing homes, rehabilitation and home care settings, and some (though quite a few less) 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, “certification” 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?

The increasing role played by medical ethicists in the clinical setting both as teachers and consultants has brought with it a demand for new methodologies that speak more precisely to the multiple problems encountered in actual attempts at case resolution. Some of these moves have to do with a revival of the truly classic case study approach to ethics, casuistry. This approach is anchored in the revelatory text of Jonsen and Toulmin, The Abuse of Casuistry. A fine example of this methodology is an article in The Journal of Clinical Ethics, “Gathering Information and Casuistic Analysis.” Conjoined to this approach is a renewed interest in virtue ethics. The groundwork for this was laid by MacIntyre's masterful history of its demise in After Virtue. A clear and concise application of this ancient but always new approach is given in Pellegrino and Thomasma's book The Virtues in Medical Practice. This way of doing ethics is particularly congenial to the practice of healthcare ethics in that it understands that virtue is just a rather fancy name for a good habit or skill. Since the practice of clinical medicine is quintessentially the learning and application of a range of often highly complex patterns of professional abilities and skills, a virtue ethics approach will allow for the concomitant development of a whole set of ethical skills. But both casuistry and virtue ethics may well be seen to be operative in a larger context now known as narrative ethics.

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 “nondirectiveness” 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 to teaching the philosophy of genetic counseling, one that integrates philosophical, theoretical, and ethical training throughout the curriculum in genetic counseling.

In Lewis Carroll's Alice Through the Looking-Glass, Humpty Dumpty said: “When I use a word, it means just what I choose it to mean—neither more nor less.” One may not agree with this approach, but it may well be preferable to using a word: (a) with only a vague idea of its meaning, or (b) with many possible meanings.

“Breaking Bioethics” is the newest section of Cambridge Quarterly. Twice each year these pages will feature a colloquium on a breaking issue in bioethics.

On August 1, 1996, due to the expiration of the five-year preservation limit provided by British law for unclaimed and legally unusable frozen embryos, 3,300 embryos were thawed and discarded. In Italy the news of this impending event triggered many reactions among scholars as well as the general population. In Massa, a little town in Tuscany, a most unusual response arose. Two hundred women banded together and asked to carry out a prenatal adoption. Their purpose in making this request was to avoid what they believed to be mass infanticide. Many of the women were married and already had children. They belonged to a local Catholic association. Nonetheless, their reaction was their own response to numerous appeals to respect life by the Catholic Church worldwide and by Italian Catholic thinkers especially.

The Opinion addresses the genetic modification of animals brought about by DNA technology, including transfer of genes (transgenesis) and the deletion of genes (“knock-out”).

When one examines the emerging debate about genetic patenting, it becomes clear that those who oppose so-called “gene patents” misunderstand genetics or apply inappropriate moral and jurisprudential theory. In this brief essay I examine some arguments against gene patents of the “methods for detection” 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.

Each of these hospice officials makes several criticisms of my paper, “Goldilocks and Mrs. Ilych: A Critical Look at the ‘Philosophy of Hospice’.” I will treat these criticisms in turn.

Glenn McGee argues that the time is now for debating the morality of patenting human genes. In one sense he is surely right. While thousands of patents have been issued or are pending on many gene sequences, public policy with respect to ownership of the human genome is still far from settled. So a debate about the ethics of patenting genes is, if nothing else, timely. In another sense however, Professor McGee is wrong.

At an international workshop on Transgenic Animals and Food Production in Stockholm in May 1997 Peter Sandoe, a Danish philosopher, characterized the difference between Europe and the United States in attitudes toward biotechnology as a difference between “why?” and “why not?” To do so, of course, sins against the eleventh commandment, “Thou shalt not generalize,” but the distinction he draws is a concise way to highlight the differences in policymaking in matters of biotechnology.

Bioethicists recognize the conflicts of interest that can arise for clinicians and scientists. However, few scholars exploring the moral dimensions of medicine and the sciences publicly address potential conflicts of interest concerning their own research. Increasingly, however, bioethicists will be confronted with difficult choices in which opportunities to obtain funding will sometimes conflict with the pursuit of critical, rigorous scholarship conducted without regard for corporate interests.

Interdisciplinary hospital ethics committees have been the most common response to the mandates for ethical review procedures set forth by the Joint Commission for the Accreditation of Health Care Organizations (JCAHO, 1995 Standards), the American Hospital Association, and within institutions themselves. A 1989 national survey reported that 60% of hospitals had ethics committees. However, little is still known about the current state of these committees in hospitals, their composition, what functions are performed, or what issues are discussed.