Susan Schmerler

An explication of the National Society of Genetic Counselors (NSGC) code of ethics

This article reviews the work carried out by the NSGC ad hoc Committee on Ethical Codes and Principles between 1986 and 1991 and serves as a guide for interpreting the NSGC Code of Ethics. The NSGC Code of Ethics is written from the “ethic of care” perspective. It is based on the responsibilities that arise from the four primary relationships genetic counselors experience in their work: genetic counselors and themselves, their clients, their colleagues, and society. The values selected for each relationship and the resultant guidelines are explained. The Code of Ethics became effective January 1, 1992.

Defining Moments: Professional Integrity

The patient had been referred for genetic counseling because her first child had a multiple congenital malformation syndrome. She was pregnant again and was seeking information about the risks of recurrence and available prenatal diagnostic procedures. She came to the session alone. We started the session with the usual general questions, with the goal of defining the issues and setting a contract. As we talked I noticed that the patient could not sit still. She was fidgeting, and her eyes were all over the walls of the office. It was apparent that she had something on her mind that was interfering with her concentration, and that we would not get anywhere until her agitation was addressed. I asked her what she was thinking. The story she told me is as follows: Her first child had been born in a local hospital with serious malformations. The family had been referred to a major hospital in a large city for diagnosis and management, which included genetic counseling. For a period of almost 2 years, she had been traveling with the child from her home into the city by bus and then subway. The time, expense, and stress had begun to wear on her, especially now that she was pregnant. She had asked her doctor for a referral to a more local genetics service and had been given our phone number. At what was to be her last session in the city, she explained her situation to the genetic counselor, saying that she would be continuing her care closer to home. In response, the genetic counselor told her that if she did not continue with the service in the city, she would receive inadequate and substandard care. The patient’s agitation was an expression of her anxiety about her care. Since the experts were in the city, they must know how to evaluate other services. My memory of the remainder of the conversation is bathed in a wash of red. Please understand that this occurred in the early 1980s, when the genetic counseling community was small. Everyone, especially those within the same

Book Review: The Clone Age. By Lori B. Andrews. Henry Holt and Company, Inc., New York, NY,10011,1999, 260 pp.,

Assisted reproductive techniques (ART) became a topic of dinner conversation when Louise Brown was born in England in 1978. Twenty years later Dolly was cloned. Lori B. Andrews has been consulted as an advocate and an adviser and has been involved in both the legal and ethical issues that have evolved in the years between Louise and Dolly. She has worked in the United States and abroad for government and for private entities. She shares her experiences in The Clone Age, subtitledAdventures in the New World of Reproductive Technology. The Clone Ageis not a scholarly tome. You will not be able to go to primary sources; there is no documentation and no references. I read controversial statements that left me wondering about the other side of the story, with no references to pursue. The Clone Ageis not a textbook. There is even a basic factual error (hemophilia is discussed as an autosomal dominant disorder on page 82) that makes the reader uneasy about the accuracy of the other scientific information in the book.The Clone Age , however, was not meant to be either a scientific tome or a textbook. It is a memoir of one woman’s involvement in a very special area of medicine that interfaces the ethical and legal mores of our time. In the context of presenting her experiences, Andrews raises troublesome ethical and social questions. Whether we approach the subject material of The Clone Ageas geneticists, feminists, or consumers, Andrews discusses issues of which we should all be aware. She claims, for example, that women have been used as research subjects without their consent or knowledge of the risks, in the chapter on “Monitoring Medicine.” Commercial clinics offering in vitro fertilization (IVF) have not been regulated. Statistics have been creatively presented to a public desperate to have children, to entice participation in untested, possibly unreliable technologies. “Souls on Ice” is a chapter on the use of frozen embryos in IVF. Harvested eggs and embryos that have not been used by the patient have found their way into research laboratories or have been sold for IVF to other couples, without permission or oversight. It is alarming to think that in their great need to have children, people are being used for economic profit, sometimes by scientists and practitioners whom we may consider colleagues or mentors. In Andrews’s experience, ART has been a lucrative and unregulated business. The history of artificial insemination by donor that is presented in “Whose Baby

25.00 (hardback)

As part of a program to improve maternal and infant health in New Jersey, the Robert Wood Johnson Foundation has funded seven regional consortia throughout the State. One of the goals of the Northern New Jersey Regional Consortium is to provide a comprehensive educational program for ambulatory care staff. An outreach education team was established that includes a perinatal nurse educator, a neonatal nurse educator, a nutritional counselor and a genetic counselor. Many issues in genetics can be initially addressed by the ambulatory care provider. A good understanding and awareness of the impact of genetic issues in patient care is needed to enhance the ability to recognize patients needing special services. Early assessment of possible risk for developmental disabilities can lead to appropriate comprehensive care and improved pregnancy outcome. Regular in-service programs, addressing the way heredity contributes to developmental disorders, the latest techniques used in genetics and the available management programs, can be provided. The present study is an evaluation of the effectiveness of the program.