Recent discussions of genetic information have highlighted the need for ethical disclosure guidelines. For instance, the (Canadian) Royal Commission on New Reproductive Technologies points out the range of third-party interests in genetic information and the lack of clear ethical and professional guidelines governing its dissemination. Among the more worrying interests are those of insurance companies and prospective employers. However, also worrisome is the problem of negotiating the first-party interest in privacy (from which the professional obligation of confidentiality arises) and strong third-party claims from family members. The survey by Knoppers and Laberge of consent forms currently used in DNA testing in Canada shows that fewer than half mention access by family members, and only three out of 20 alert subjects to the possibility of finding nonpaternity. Both the Royal Commission and the Knoppers research group recommend integrated, national consent standards, with the Knoppers group explicitly approving a “reasonable person” standard of disclosure. While endorsing the call for integrated consent guidelines, in this paper I intend to raise some doubts about the adequacy of the reasonable person standard in light of gender differences in reproductive burden and risk perception.

The patient in this case does not have enough small bowel to be compatible with life. Given this prognosis the decisions to establish a DNR status and discontinue TPN are both appropriate. However, by not attempting an earlier extubation or withdrawing the hydration as well as the TPN, the attending physician set the stage for the ensuing disaster.

The case of a dying baby with “dead gut syndrome” is one of the most difficult in pediatric ethics. I have been involved in several such cases and they are extremely challenging for all parties, especially the parents. With the luxury of being an “armchair quarterback,” I will comment on this case from the perspective of when it first began and at the end point described in the narrative.

As our knowledge of the genetic constitution of human beings expands, testing to determine an individual's disposition toward a given disease will also increase. Since genes are a family affair, to know that an individual is genetically disposed toward a specific disease is an indicator that members of this individual's family may also be so disposed.

This section is meant to be a mutual effort. If you find an article you think should be abstracted in this section, do not be bashful—submit it for consideration to Kenneth V. Iserson care of CQ. If you do not like the editorial comments, this will give you an opportunity to respond in the letters section. Your input is desired and anticipated.

In this case, one should expect that providing hydration sufficient to maintain fluid balance would tend to prolong the dying process. In a well-known case at Johns Hopkins University, fluids (and feedings) were withheld from a newborn with anomalies, and the infant died after 15 days, compared to three weeks in the present case, in which fluids were given. In the famous Baby Doe case, fluids and nutrition were withheld and the infant lived only six days. In the case at hand, prolonging the dying process risks causing suffering for the infant from various complications that can arise, and it adds to the emotional burden on the family. We learned from the Johns Hopkins case that prolonged dying is also emotionally difficult for the nurses and other health professionals caring for the infant.

The ethics consultant attended two of the weekly nursing conferences on this unit to process the feelings that the nurses expressed about the case, to explain the kind of ethical reasoning that has evolved regarding the forgoing of life-sustaining treatment, and to acknowledge some things he could have done better. In particular, this consultant came to believe that he had made a mistake in inferring that his job was only to provide the information to the attending physician that was requested. This physician had suggested that he would prefer to deal directly with the family and only needed information from the consultant. Although the physician continually held open the possibility that at some time in the near future he might ask the consultant to meet with the family, that request never came despite repeated offers of assistance.

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, The Worth of a Child. 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 The Worth of a Child, 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. The Worth of a Child 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.

Birth regulation is a tired and worn-out conversation, so I will not approach the matter in that way. I think it much more exciting, and it raises all the same problems, to approach the issues of reproductive services through reproductive technologies that are now available. Since this is based on my recent experience with the American Fertility Society, now the American Society of Reproductive Medicine, I will take this tack. This presentation is a vehicle for getting some questions on the table; hopefully, there will be enlightenment in the discussion and debates that follow.

No single principle is more critical to our ethical stance than the one asserting the sanctity of human life. In debates ranging from the care of anencephalic infants to the maintenance of fragile seniors, the question is, Where are the boundaries of sanctified human life? The generally accepted assumption is that a once firm set of principles and definitions is now eroding in the face of “new realities”—a generation's stunning scientific advance in medicine and medical technology. “There is no doubt,” Joam Graf Haber writes, for example, in a recent issue of Cambridge Quarterly, “that the miracles of medical technology have brought up ethical issues not contemplated by us until the very recent past.”

“Health Care Without Harm” is a new campaign devoted to reducing the environmental harms—namely, pollutants and unnecessary waste—generated by the healthcare industry. One of the leading local proponents of this effort is Michael Lerner, founder of Commonweal, a Bolinas, California–based research and educational institute best known for its innovative programs for cancer patients and clinicians. Lerner is author of Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer, published by the Massachusetts Institute of Technology Press in 1994, and the recipient of a MacArthur Prize Fellowship (the well-known “genius grant”).

Oregon is the only state in the United States where a physician may legally prescribe a lethal dose of barbiturate for a patient intending suicide. The Oregon Death with Dignity Act was passed by voters in 1994 and came into effect after much legal wrangling in October of 1997. At the same time, a cabinetmaker named Pat Matheny was struggling with progressive weakness from amyotrophic lateral sclerosis, or ALS. I met with Pat and his family for a lengthy interview in October 1998 in Coos Bay, Oregon, for a television news report on his decision to get a lethal prescription. Below is an extract from that interview. On the day this introduction was written, 10 March 1999, Pat took the prescribed lethal overdose of barbiturates and died at home. His illness was taking his voice, he could not move his hands or legs, and breathing was becoming very difficult. His mother told me he knew that was “the right time” for him.