Evaluating alternative cancer therapies:
A provocative new book examines the issues

© by Peter Barry Chowka
June 1, 1999

David J. Hess, PhD is a cultural/medical anthropologist, professor of Science and Technology Studies at Rensselaer Polytechnic Institute in Rochester, NY, and a prolific author. In the 1990s he has published a number of books, including Science in the New Age : The Paranormal, Its Defenders and Debunkers, and American Culture (University of Wisconsin Press, 1993) and Science and Technology in a Multicultural World: The Cultural Politics of Facts and Artifacts (Columbia University Press, 1995).

In 1997, Hess' book Can Bacteria Cause Cancer? (New York University Press) explored bacterial vaccines, currently considered to be unconventional or alternative approaches, as a means of treating cancer. Hess writes with an unusually sophisticated understanding of the political and economic context that is driving cancer research and treatment and much of modern medicine.

Several years ago, Hess received a prestigious National Science Foundation grant to examine public understandings of science in the alternative cancer therapy and research community. In February 1999, Rutgers University Press published Hess' latest work: Evaluating Alternative Cancer Therapies: A Guide to the Science and Politics of an Emerging Medical Field (ISBN: 0813525942). It represents another major contribution to the expanding field of mainstream academic literature about alternative medicine.

The format of the book is interviews, as Hess' publisher writes, with "the major opinion leaders in the alternative cancer therapy field -- clinicians, researchers, patient advocacy leaders, and journalists -- who explain their philosophy of evaluation, their therapeutic preferences, and the political and economic hurdles to getting the necessary research done. Both a guide to the guides and a a survey of the field, [the] book provides a framework for evaluation problems that clinicians and patients face -- from patient needs and the quality of potential clinical care givers to research methods, proposed policy reforms, and the therapies themselves."

Since Hess devoted a chapter of Evaluating Alternative Cancer Therapies to this writer, I will not review the book in order to avoid the appearance of a conflict of interest -- other than to note that I can unequivocally recommend it to anyone who is seriously interested in the field.

Shortly after Evaluating Alternative Cancer Therapies was published, I had a chance to read it. Like any provocative work, it suggested a number of follow-up questions which Hess agreed to answer. Our Q & A follows.

PETER BARRY CHOWKA: Why did you write Evaluating Alternative Cancer Therapies and Can Bacteria Cause Cancer? Why are you so interested in the field of alternative/innovative cancer therapies?

DAVID J. HESS, PhD: I faced a possible cancer diagnosis about a decade ago, and fortunately the cancer diagnosis was ruled out. I went through the deep fear that cancer patients go through when they hear the "C" word. Eventually, I decided to go into the fear and learn everything I could about the topic. I had already been exposed to alternative medicine ideas during my fieldwork as an anthropologist among Spiritists in Brazil, but soon I discovered a new, more scientific type of alternative medicine that was founded in contemporary nutritional science and immunology.

CHOWKA: How does this subject of inquiry fit in to what your academic career has been about?

HESS: For my entire academic career I have been studying public-and-science issues: how the public understands science, how scientists understand the public, and various policy issues that emerge from the relationship between the public and science. I began with projects on religion and science (my earlier books), then studied cross-cultural and multicultural aspects of science, then moved on to the alternative cancer therapy field. In general, I am interested in how industrial interests create "selection pressures" in academic science and research that tend to favor research programs that benefit industry rather than the general public. I want to strengthen public institutions so that the funding is more closely in line with public interests.

CHOWKA: What did you learn or what were you suprised by when you got to the end of your research and interviewing for Evaluating Alternative Cancer Therapies?

HESS: I was surprised at how diverse the complementary and alternative medicine field is, even within the narrow range of complementary and alternative cancer therapy community. I learned about several significant personality clashes and organizational splits, and some of it I was able to document in the interviews. I think this kind of social and historical background is essential to the problem of interpreting various claims and making an evaluation of who is saying what for what reasons.

I was also impressed by how rapidly the field is changing. Almost every week a new product or nutritional compound is being analyzed for its potential as cancer therapy. This is a dynamic field that requires constant monitoring in order to stay up to date, and few people have the time and resources to do so. I was fortunate to be able to talk to many of them.

The level of intellectual suppression was also surprising to me, although not completely so. I had encountered intellectual suppression elsewhere in my studies of unorthodox scientific fields, but when one moves from unorthodox research to unorthodox clinical practice, the stakes are much higher and the level of suppression is also higher.

CHOWKA: How do you hope the book can be used to accelerate the process of fair evaluation for the alternative cancer therapies, assuming you do hope for that?

HESS: I am modest about my expectations. If conventional medicine is a kind of Berlin Wall, then this is just one more brick taken from the wall. There are many people who have gone before me, who are my teachers, including many of the other people interviewed in the book. My special contribution is to have the luxury of time to interview a selection of the opinion leaders in the field, let them review and revise their interviews, and in the process generate a deeper discussion of the evaluation issue by synthesizing their ideas. The policy position that complementary and alternative therapies should be evaluated is now becoming widely accepted, and there is increasing acceptance of methods other than the gold standard of randomized clinical trials. I am hoping to contribute to opening up the evaluation debate to include other types of evaluation: of clinics, clinicians, patients' needs, information-providing and referral organizations, as well as of the methods and policies themselves. At the same time, the book itself accomplishes an informal evaluation, because it asks leaders of the community what their experience is with specific therapies, and it reviews existing experimental literature. So, the book provides a lot of practical information for clinicians and patients who are concerned with the question of what works and what doesn't.

CHOWKA: Are you more or less concerned now that there may be dangerous "quackery" out there.

HESS: I am, but I'm equally confident that the public is able to sort out the quacks from the good doctors. The public is not stupid. The reverse side of the quackery problem is the suppression of well-credentialed clinicians and researchers who do work that is outside the mainstream. In the past, professional, nonprofit, and government organizations had a policy of suppression that was based on a very paternalistic model of the public. In other words, the leaders of the medical research community decided what was acceptable and passed their wisdom on to the public.

The new model places more decision-making power in the hands of the public in the guise of the patient/consumer: I focus on the question of a patient's right to choose different therapies under circumstances of good clinical guidance and the clinician's right to offer different therapies under circumstances of informed consent. Under this model, there is more willingness to make available therapies of fairly well known safety but not so well known efficacy rather than restricting availability to therapies of known efficacy (usually poor) and often low safety (such as the high side effects of chemotherapy). There are real trade-offs here, but I support the change to a more open system that transfers the power of medical decision-making from national regulatory and professional bodies to the patient and clinician.

At the same time, power is also shifting because of the increasing prominence of patients' rights organizations. As patients become organized as disease constituences, they make legitimate demands on public funding agendas for research and evaluation. In the process, medical researchers have to surrender some of their autonomy to the new world of more actively involved publics, such that medical research agendas have to be negotiated with disease constituencies. This is a very complicated process, because there is a counter-tendency for industry interests (such as the pharmaceutical industry) to capture nonprofit organizations and train patient advocates to lobby Congress in ways that are beneficial to them. So while the whole issue of public involvement in research and funding agendas is not a part of the political landscape, it is a very complex issue.

CHOWKA: What was it like to get the book published? Did you encounter problems or difficulties along the way?

HESS: Believe it or not, there is a feeling now that the market is glutted, so I had to make a case that the book is different. It is the only book that assembles in one place the opinions of many of the leaders of the complementary and alternative cancer therapy movement, then brings together the commonalities and differences in their views. If I were a cancer patient, I would want to see something of the diversity of viewpoints before deciding on a specific course of action.

Another problem was that several of the interviewees went into some detail on the scientific issues involving nutrition, immunology, and clinical research methods. I found their ideas fascinating and was loathe to cut any of them, and in this sense the academic press imprint gave me the freedom not to dumb down the science. The information could also save someone's life or help a clinician from prescribing, for example, botanicals that may be contraindicated in some cases. However, by refusing to dumb down the book, I knew I was not likely to reach as many patients. To make the book as accessible as possible, I included a good introduction plus a glossary.

CHOWKA: Who is the book's intended audience?.

HESS: The book is written for clincians, students in medical courses, and especially for patients. I have to admit that some of the technical discussions will be difficult reading for patients who have not had a basic biology course. Not every cancer patient will be able to understand the book, but of the one-and-a-half million people diagnosed with cancer each year, there has to be a sizeable number of people who are looking for this kind of information, and I think most college-educated people will be able to read it cover-to-cover with occasional help from the glossary. Surveys show that cancer patients who use complementary and alternative therapies tend to be among the most well-educated, so I hope the book will fall into their hands. I have heard from patients that the book provided them with invaluable information. As a guide to the guides, it is intended as a map of the field.

CHOWKA: Have you had much feedback to the book yet? What kind of response from academia-policy makers do you anticipate?

HESS: I have been contacted by U.S. Representative Burton's committee, so I have sent a copy to them, and I will be speaking at several conferences, including the Comprehensive Cancer Care II conference on June 9-13 (organized by the Center for Mind-Body Medicine of Washington, D.C.) However, the book has just come out, so it is too early to have reviews yet. I am hopeful that the book will join the chorus of voices that is helping to prod Congress to provide more funding for the evaluation of complementary and alternative therapies.

Peter, I love your expression that the budget for complementary and alternative medicine is "homeopathic" in comparison with the rest of the NIH budget. Even with the advances made this year, and they are significant, there is a great deal of work that needs to be done, and Congress needs to get continual feedback from the public.

CHOWKA: Anything else you'd like to comment on?

HESS: The research project was supported by the Ethics and Values Program of the National Science Foundation, which supported the sociological work I was doing on the public understanding of science issues. Other than that and my position as a college professor, the project has no financial linkages with any organization. I have no financial interests in any cancer therapy or treatment, nor do I have any personal ties with any cancer therapy. It is important for patients to ask any information-provider about their possible connections through family history or financial relations to a specific therapy. I tried to find opinion leaders who were not advocates of a specific therapy, but instead had a broad view of the field either based on their research or on their clinical experience.

For more information,

Read the chapter on Peter Barry Chowka from Evaluating Alternative Cancer Therapies

Books by David J. Hess, PhD

Evaluating Alternative Cancer Therapies: Publisher's description and table of contents

Rutgers University Press, publishers of Evaluating Alternative Cancer Therapies

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