Journal of Genetic Counseling, Vol. 4, No. 3, 1995

Book Reviews

The Health Care Ethics Consultant. Edited by Francoise E. Baylis. Uni- versity of Tennessee, Knoxville, Tennessee, Humana Press, 999 River- view Drive, Suite 208, Totowa, New Jersey 07512, 1994, 209 pp., index, $39.50 (cloth), ISBN: 0-896-03278-7

This book consists of a collection of essays by various participants of meetings of the Strategic Research Network on Health Care Ethics Con- sultation. This effort, funded by a grant from the Social Sciences and Humanities Research Council (SSHRC) of Canada, began in April 1991 as a series of meetings of a national multi-institutional, multidisciplinary group of 15 health care ethicists and scholars. Participants came from fields of philosophy, ethics, theology, medicine, and law, and included those with academic as well as professional degrees, practical as well as theoretical expertise. The main questions addressed by the group were: Who should be considered health care ethics (HCE) consultants? What should be their primary responsibility and training? Should there be some kind of accredi- tation or certification? If so, what?

The discussion opens with historical information leading to present terminology and definitions. I learned, for example, that the person that I formerly knew as the bioethicist or medical ethicist is now known, at least in these circles, as the HCE consultant. The role of this person may be to provide case consultation, ethics committee consultation, policy formula- tion, and/or ethics education.

There was some discussion of the advantages and disadvantages of formal certification of HCE consultants. The advantages of HCE certifica- tion are seen as establishing professional identity and visibility, and allowing for a uniform means of establishing and maintaining minimal acceptable standards of competency and mastery of a specific body of relevant knowl- edge. This would allow employers, third party payers, and clients some basis in the future for choosing, reimbursing for, and evaluating consultation services. Participants saw the main disadvantages as the exclusionary and restrictive nature of the certification process that may increase homogeneity within the field by censoring perspectives which are out of favor with who- ever decides whom to certify. Some considered the specialty not yet sufficiently developed for certification but identified this as a future need.

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Other objections revolve around the practical aspects of setting up and maintaining certification/licensure mechanisms. I wondered how these is- sues might be different in the U.S. given the different health care system.

A survey of Canadians who serf-identify as HCE consultants reveals that this is a heterogeneous group of persons with primary training in medi- cine, nursing, philosophy, theology, law, or other lesser represented fields of health administration, education, science, and psychology. Often con- sultants held multiple degrees, indicating a high level of cross-training. Respondents considered their roles to include education, clarification of issues, widening of perspectives and appreciation of alternatives, and en- hancing awareness of ethical issues. Some work full-time and twice as many worked part-time in clinical ethics work. While some received reimburse- ment, many offered consultation on a voluntary basis. Respondents were evenly divided on whether or not they were in favor of formal certification.

One thought-provoking aspect of the book centers on the develop- ment of a profile of the HCE consultant. This profile, proposed as a substitute for certification, is conceptualized as an inventory of the requisite knowledge, abilities, and character traits necessary to function effectively as a HCE consultant. Naturally, it is at best an approximation and not meant by the authors to be legally applied. They suggest that the knowledge base should include relevant information about ethical theory, medicine, medical anthropology and sociology regarding concepts of health and ill- ness. The abilities of the HCE consultant should include capability to acquire relevant information, do systematic thinking, make and defend ethi- cal decisions, and communicate effectively with all parties. Much emphasis is placed on the ability of the HCE consultant to facilitate, mediate, ne- gotiate, and arbitrate disagreements among various parties within the health care system. Finally, the HCE consultant should have certain char- acter traits such as wisdom, sense of justice, compassion, humility, integrity, ability to engender honesty and trust, courage to take a firm stand which may go against the grain, moderation and self-control.

In summary, this working group has demonstrated that Canadian HCE consultants are a heterogeneous group with a broad range of formal training, expertise, time commitment to clinical ethics, and practice specif- ics. The range of viewpoints of clinical practitioners is broader than that seen in the published bioethics literature. There is little data on the con- sumer views regarding preference for a medical professional-ethicist vs. a full-time ethics expert from philosophy or theology, nor is there data on the efficacy of either of these models. Funding for ethics consultations in the private sector also remains largely untested.

This book should be used primarily as a reference for those interested in how HCE services are and will be organized. The purpose is not to

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learn ethics, but rather to consider the nature of the consultant who applies ethical principles in the clinical setting.

I believe that there is room for genetic counselors to become more involved in HCE. This could occur by requesting bioethics consultations more frequently, through serving on IRBs where one would have interac- tion with ethicists, by attending workshops and seminars in ethics, by joining the NSGC ethics committee, or engaging in projects with an clinical ethics aspect. Finally, there may be some counselors who wish to receive addi- tional formal training in this area to themselves become HCE consultants. The facilitation aspects of genetic counseling, and the model of the cross- trained medical professional should make this specialization a feasible option for motivated counselors.

June Peters Medical Genetics Branch, NCHGR, NIH Bldg 10, Room 10C 100 10 Center Drive, MSC 1852 Bethesda, Maryland 20892-1852 member, NSGC Ethics Committee

Physician to the Gene Pool: Genetic Lessons and Other Stories. By James V. Neel, MD, PhD, John Wiley and Sons, Inc. New York, NY, 1994, 457 pp. $24.95

I'll admit to sometimes reading the last few pages of a book first; and with this one I was tempted. Not to discover "who dunnit" or if he gets the girl, but to glimpse at the results of the wisdom Dr. Neel garnered from his experience. However, Physician to the Gene Pool is a book that builds. It is only :in the reading of the early years, the Hiroshima, Nagasaki, and Yanomama adventures and basic genetic information, and by under- standing Neel's population approach to genetics, that one fully appreciates the last few chapters.

The book is divided into several main sections, which are clearly iden- tified in the first few paragraphs of each chapter before the first subhead. This organization imparts readability and a clean sense of direction. The first few chapters deal with Dr. Neel's training, including his medical stu- dent work in thalassemia. This is followed by his experiences in Japan as he developed and conducted scientific assessments of the effects of radia- tion; his populat ion studies with the Amerindians, especially the Yanomama peoples; his explanation of genetic concepts; and his reflections in the final chapters. As "physician to the gene pool," Neel expresses con- cerns about both short and long term impacts of current technology and

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the approach to discovering and "correcting" genetic problems. His bias as a population geneticist is clear when he deals with issues of long term sur- vival. His blending of the global ramifications of genetic research and the daily genetic service clinical activities is interesting.

The first sections of the book review his training and timely research opportunities. Dr. Neel's career encompasses an era of dramatic scientific changes, from the days prior to genetic laboratory testing for any disease to his current role in responding to policy decisions related to the Human Genome Project. His narration of the atomic bomb studies included both political and personnel challenges. Dr. Neel's anecdotes help the reader picture events vividly, and his humor in recalling adjustments to new cul- tures demonstrates why he was successful in sometimes frustrating environments.

The decision to continue research with "gene pool genetics" helped direct Dr. Neel's next efforts with the Amerindians. Again, taking advan- tage of an exciting crossroads in time, never before or since available, he was able to shape a new body of knowledge. Technology, both logistic and scientific, was just becoming available to study a people who were still un- disturbed. From that fieldwork came population data which helped shape our understanding of the human evolutionary process.

The final section of the book is a reflection of current genetic prob- lems as viewed by a population geneticist. Dr. Neet is serious about the social contract that binds the scientist to the interests of his society, espe- cially those regarding unchecked population growth. Incorporating a global perspective, summarized in a subhead as "too many people, too few re- sources," Dr. Neel identifies problems as well as the as the current policy responses (or lack thereof) and urges readers to initiate major steps to address the consequences of human action which have perturbed the evo- lutionary system. He suggests consideration of six objectives which balance social objectives against the individual's choices to attain the healthiest child possible. He acknowledges that his genetic program is both "hope- lessly idealistic and incredibly naive." However, it is a cogent argument developed from one man's vision.

His treatment of genetic counseling from the bias of a population geneticist is fascinating. In 1948, he helped develop the Hereditary Clinic in Ann Arbor, one of the first in the country. At that time, the primary counseling involved providing the most accurate information currently available in a nondirective manner, yet he recalls his struggle with the still infamous question "What would you do if you were me?" Counseling in 1948 had two main facets, increasing patient understanding and providing reassurance, since many of the families who presented believed their risks to be higher than they were. He reflects about the value of providing risk

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information with limited options and contrasts that era with the current ease by which professionals are so seduced by technology that they don't often step back and realize the global ramifications.

Unlike many of today's politicians, his support for abortion is clear, and he presents compelling arguments when outlining genetic counseling scenarios in a unique manner, incorporating his population perspective. He uses quote marks to illustrate the moral dilemmas and demonstrate his awareness of the issues. Although he approaches many of the scenarios in a manner different from that expected of genetic counselors, it is interesting to come to understand his distinct position.

I have always enjoyed biographies and autobiographies, whether or not I particularly admire the person or agree with his or her philosophy. This book was a genuine pleasure to read. It was enjoyable to gain knowl- edge about an aspect of genetics that I would never seek during the literature searches necessary to provide routine clinical care. Dr. Neel dem- onstrates in this book that spectacular science can be accomplished without the spectacular technologies available to scientists today. Physician to the Gene Pool provides a base to appreciate the reflections which are framed by his particular achievements and apply to the global society in which we all must live.

Vickie L. Venne Huntsman Cancer Institute University of Utah Salt Lake City, Utah 84132