Visionary Science, Ethics, Law and Action in the Public Interest

Public Interest Science – October 1998

The Networker
I. Editor’s Note: Accountability and Public Interest Research Carolyn Raffensperger
II. One Scientist’s Story: Leukemia and the Nuclear Industry in France Jean-Francios Viel
III. Community-based Research in the United States Dick Sclove
IV. Publicly Funded Cancer Research By SEHN Staff
V. Letters to the Editor Clark Bullard
Ted Steck
  I. Editor’s Note: Accountability and Public Interest Research TOP
By Carolyn Raffensperger

I’ve been rummaging through dictionaries looking for a coherent, clear definition of “public interest research.” There isn’t one. Various groups have used slogans like “Feeding the World” or “National Security” to identify research projects that must be beneficial to the public. Its difficult to argue that a new technology that has been labeled as feeding the world is NOT in the public interest. At the same time, there are occasions when slogans seem to hide research goals which could harm a large segment of the public.Philosophers have argued that science always serves a master, usually the benefactor or the person who pays the research bill. The public still funds a large percentage of the research undertaken in the United States. When the public pays for science or when science is used to address a public matter, then the public has a right to decide what questions are asked and how that science is used.

Furthermore, it is time that the public was given the opportunity to hold scientists and public agencies, that claim to be undertaking research in the name of the public, accountable.

SEHN along with the Consortium for Sustainable Agriculture, Research and Education, has developed a working definition of public interest science. That definition is, “public interest research aims at developing knowledge or technologies that have broad public benefit and advance the common good; when the direct and immediate beneficiaries are society as a whole, or specific “publics” too large, diffuse or poor to organize or advocate for research on their own behalf; when the information or technologies resulting from public interest research are freely available (not proprietary or patented); when such information or technologies are developed with collaboration or advice from members of the public.”

In his essay “Staying Sane in a Technological Society”, Neil Postman offers some questions which can help us assess whether or not research is conducted in the public interest and whether the working definition has been met. They are:

  • What’s the problem?
  • Whose problem is it?
  • What new problems will be created by solving an old one?
  • What people and institutions will be most seriously harmed by a technological solution?
  • What new sources of economic and political power will emerge? (Lapis #7,1998: 53-57)

Two additional questions round out this list:

  • Who benefits from scientific uncertainty?
  • Is science used to delay or obfuscate action?

The world of science has provided some useful case studies to which we can apply these questions: 1) The “Terminator Technology” research done by USDA, 2) testing organophosphate pesticides on human subjects for EPA regulation, 3) EPA’s dioxin reassessment and 4) the story of scientist Deborah Swackhammer.

These provide examples of science done in the name of the public but that are violations of the principles of public interest research.

Terminator Technology
USDA and Delta Pine Land Co. received a patent on a technique that genetically alters seed so it will not germinate if re-planted the following season. The seed-sterilizing technology threatens the ability of farmers to save seed from their harvest for the following season. Delta and Pine Land, the largest cotton seed company in the world has exclusive licensing rights even though USDA co-holds the patent.

USDA has spent approximately $190,000 of public money to support research into what has been, not so affectionately, labeled the “terminator technology”. Melvin Oliver, the USDA biologist and primary inventor of the technology identifies the problem he was trying to solve with this research: “My main interest is in the protection of American technology. Our mission is to protect US agriculture and to make us competitive in the face of foreign competition.” If this technology becomes widely licensed, self-pollinating seeds like wheat, rice, cotton, soybeans, oats and sorghum will be controlled by a few seed companies. Until now, there was little commercial interest in these seeds since it was impossible to control reproduction. Rice and wheat are the staple crops for three-quarters of the world’s poor.

Measuring the Terminator Technology against the public interest questions indicates that the public is not served by this research. The problem it was trying to solve is protecting investments of private corporations. It reduces agro-biodiversity and increases the fragility of the food system. Farmers, and poor people are disenfranchised by Terminator while adding to the power base of a few transnational corporations.

Human Guinea Pigs
Dan Tarlock, law professor and wit, once said that one of the greatest contributions of the environmental movement was that we had discovered that rats could die for our sins. It looks like we will have to die for our own sins now. Pesticide makers are trying to reduce the time it will take to meet the stringent requirements in the Food Quality Protection Act which protect children, by testing pesticides directly on humans. Reports from the Wall Street Journal and Chemical and Engineering News describe new studies of organophosphates in which participants are solicited (and paid) to ingest the pesticide so that manufacturers can determine immediate harmful effects. According to the Wall Street Journal, manufacturers claim the “tests pose few risks to volunteers, meet international ethical guidelines and represent their only recourse to a law that could ban or severely restrict many widely used pesticides in what amounts to a $37 billion world-wide market.” (Wall Street Journal: Sept. 28, 1998)

There are several ethical problems with these testing protocols: 1) paying people, particularly students, compromises informed consent; 2) some of the participants were told these were “drug”, not “pesticide”, trials; 3) the research focus is on protecting investments rather than being precautionary and protecting human health.

So what problem are the pesticide companies trying to solve? Avoidance of regulation for toxic chemicals. The constituents most likely to be harmed by NOT regulating organophosphates are children, our most vulnerable population. Corporations get the benefit of scientific uncertainty, rather than the children. Science is used to delay regulation rather than search for alternatives. Besides, Dr Chuck Benbrook, internationally recognized pesticide and IPM consultant has indicated that alternatives to the most toxic organophosphates already exist. Those alternatives would benefit the public, farmers and children, but they wouldn’t benefit pesticide manufacturers.

Angels Dancing on the Head of a Pin
The Dioxin Reassessment raises similar issues. In 1991 EPA began the second dioxin reassessment at the urging of the Chlorine Institute and the paper industry since they believed that new information would prove dioxin less harmful than originally determined. Thus began the 8 year wait for EPA to figure out how serious a problem dioxin might be. A draft of the report was issued in May 1995 but the final chapter that characterizes environmental and public health risks is still in the mill.

Why is that a public interest science problem? Charlotte Brody of the Center for Health, Environment and Justice answers it this way, “Every month that goes by without a final version of the reassessment is an additional gift to the dioxin polluters and an additional burden on the American people. EPA is writing new rules for major sources of dioxin pollution–pulp and paper manufacturing and medical waste incineration, for example–without hearing the alarms and sirens that the dioxin reassessment will sound.” (Everyone’s Backyard 1997:24-25)

This is certainly a premier example of science being used to obfuscate and delay precautionary action. Do we know that dioxin causes harm? The answer is “yes”. Do we know exactly how much harm? No. But the question is analogous to the old theological issue of how many angels can dance on the head of a pin. Trying to exactly characterize the dioxin risks before taking action is just as trivial as the angel question. We know enough to act now. It is not in the public interest to hold up the reassessment any longer.

The Hammer of Justice
Finally, in a troubling turn of events, Deborah Swackhammer, a researcher at the University of Minnesota, has been investigating the pesticide toxaphene and its impact on the Great Lakes–a question that fits squarely in the public interest. But some mystery person or organization is now investigating her. An anonymous client has hired a law firm to get the raw data and other material Swackhammer generated under an EPA research grant. EPA officials and Swackhammer point to the pulp and paper industry as the probable client seeking her records because it appears that the paper mills might be a source of toxaphene.

Swackhammer and EPA were doing research that benefits the public but threatens industry. Unfortunately, there are few laws or methods for protecting scientists who are serving the public interest.

The articles in this issue of the Networker illustrate the challenges and necessities of science in the public interest. The scientists who are committed to serving the public often face hardship and untold difficulties.

As a citizenry we need to make it easier for scientists to champion these causes. We can do this by defining our interests clearly and standing up to those who undermine public health and the environment. We can fund science in the public interest and make sure that scientists are rewarded through tenure, promotion and other perks.

Its time to prohibit and de-fund those projects which fail the public interest test. If we don’t, more anti-environmental projects will be done in our name. We are going to see scientists intimidated when they do research that threatens narrow, private interests. We are going to see more ethical codes violated and more reports delayed. Even more importantly, its time we the public created our own agenda and funded research that is in our interest.



  II. One Scientist’s Story: Leukemia and the Nuclear Industry in France TOP
By Jean-Francios Viel

I have been struggling for ten years to investigate leukemia among young people in the vicinity of the French nuclear waste reprocessing plant, at La Hague. I began trying to establish a cancer register, which was lacking at that time. My research was peaceful and confident up to November 1995, when I published a spatial analysis highlighting a peak of leukemia incidence in the electoral ward (named “Beaumont-La Hague” containing the nuclear plant. (Viel, J.F., Pobel D, Carre A. Incidence of Leukemia in Young People Around La Hague Nuclear Waste Reprocessing Plant: a sensitivity analysis. Statistics in Medicine 1995;14:2459-72.)Although I was cautious, avoiding any causal link between the plant and the disease peak, the attacks on me began. This turned into a harsh controversy in January 1997 with the results of a case-control study I had conducted in this area (Pobel D, Viel JF. Case-control Study of Leukemia Among Young People Near La Hague Nuclear Reprocessing Plant: the environmental hypothesis revisited. British Medical Journal 1997;314:101-6.)

I found the more often children played on the beach or consumed local fish or shellfish, the more likely they were to develop leukemia. Relying on several arguments (dose-response effect, strength of the associations, lack of temporal ambiguity, consistency with Scottish results), I concluded that there was “convincing evidence” for a causal relationship.

Soon after, I was fiercely condemned for my findings. Local politicians held me personally responsible for alleged damage to the local economy, due (according to them) to flawed results brought to the attention of the public through an unknown medical journal (i.e. the British Medical Journal).

Late January, I was informed by newspapers and the National Medical Council that the president of the Council of the departement de la Manche” -the administrative area containing the nuclear plant- was threatening a lawsuit against me. From January to July 1997, I was the subject of attacks and libels. This did not seem to rouse other French epidemiologists to action. My support came from the British Medical Journal, some newspapers like Le Monde and the French ministry of the environment.

My worst attackers consisted of local representatives, the French medical research institute, one official institution named Office for Protection Against Ionizing Radiation, and Cogema – a state-owned company operating La Hague nuclear plant. In July, the integrity and relevance of my research work was recognized. However, I was pressured to reveal the identity of study participants, and provide personal data acquired in my survey to other groups.

I have refused both, since in the application file to the “French national committee of data processing and freedom”, and in the documents to the participants, I had committed not to do so. More precisely, I had received an official approval from this committee, provided (1) any link with any name would be destroyed after the usual data check (2) data access would be restricted to the medical staff of my team under my personal responsibility (3) any data transmission to anyone (individual or institution) would be strictly forbidden (4) only anonymous and aggregated data would be published (5) all these statements would be reported upon the informed consent signed by the parents. I have respected these rules. Scientifically speaking, it can appear shocking, but it was a matter of ethics and deontology for me. I was committed to respect these rules, so I held on, keeping my personal responsibility towards the parents.

In July 1997, I was under the threat of two lawsuits. One was due to the mayor of Beaumont – La Hague – the village where the plant is located – threatening to sue me to court, for the offence of “disinformation”. I received this information through an American journalist from the New York Times.

Things are getting slowly better. Threats never turned into genuine lawsuits but my scientific credibility is still called into question. In the meantime I have received modest support from my university, and from the French ministry of education, since I am allowed to get in touch with a lawyer, if I am sued.

I have published a book for lay people in France, entitled “Public Health Atomized” (ISBN 2-7071-2827-9). I describe the evidence coming from the British studies, the details of my case-control study, the pros and cons of any epidemiological study, the causal inference process in epidemiology, societal reactions (slanders, diabolism…), deficiencies of the surveillance system in France, tough French regulations on the use of nominal and census data, and the convergence of interests between industrialists, politicians, and some scientists.

I know better than most, how powerful the nuclear lobby is. I have experienced attacks and intimidations at the expense of my professional and family life. As a consequence, I am concerned about the role of environmental epidemiologists. On the razor’s edge between industry and community activists, they are operating in a rapidly evolving society. They should, in my opinion, demonstrate a humility about the scientific research process and an unrelenting commitment to playing a supportive role in larger efforts to improve public health. Citizenship and environmental equity are of primary concern. However they should not be left carrying this heavy burden alone. Public support is warranted by epidemiology’s vital role in shaping public health policy and practice. It is time to enter a new societal contract between citizens, politicians, and scientists, one which is based on principles of innovative science and social justice. 

Jean-Francios Viel
Professor of Biostatistics and Epidemiology
University of Besancon, France


  III. Community-based research in the United States TOP
By Dick Sclove

Recently, the Loka Institute released “Community-Based Research in the United States,” a study conducted over an 18-month period.Across America, local civic and grassroots groups, environmentalists, workers and others struggle daily with serious problems that they can’t address effectively without the help of new knowledge tailored to their concerns. Whether the issue is grappling with exposures to environmental toxins, protecting workers’ health, or developing plans for local economic revitalization, a huge number of communities and groups confront questions and problems they can’t easily answer, or else have concerns that won’t be taken seriously until they have solid facts backing them up. Where should they turn?

According to just-released National Science Foundation figures, the United States currently spends more than $200 billion annually on research & development (R&D), including both government and private funding sources. But the overwhelming bulk of this enormous research effort is conducted in response to commercial, military, and government needs or in pursuit of academic interests. Community groups can’t walk up to a conventional university, government, or industry lab, and say, “Hi, I was wondering if you folks would conduct a little research project for me.”

Yet, quietly, almost unnoticed, a small movement has arisen to create a research system exhibiting exactly that sort of community responsiveness. Our study evaluates this new kind of research — research that is initiated by communities and that is conducted for — and often directly with or by communities (e.g., with civic, grassroots, or worker groups throughout civil society). (We use the term “community” to encompass both local communities and communities-of-interest, such as “workers” or “Asian-American women,” which are not territorially-based.) Community-based research gives everyday people influence over the direction of research and helps communities make headway against otherwise intractable social and environmental problems.

One example from our study: Chicago’s nonprofit Center for Neighborhood Technology established a collaboration between local environmentalists and small metalworking firms in Chicago to study and develop strategies for complying with new environmental regulations. Their study contributed to environmental protection and at the same time helped preserve thousands of jobs vital to Chicago’s low income neighborhoods.

Community-based research can involve collaborative partnerships between nonprofit organizations and community groups — as in the story I just told or between universities and community groups. Already there are a number of community research centers that serve as clearinghouses for proposals that bubble up from concerns expressed by communities.

Can the U.S. afford to expand its fledgling community research capabilities into a more comprehensive and accessible system? Our study estimates that annual expenditure on community-based research in the U.S. is currently in the vicinity of $10 million dollars that’s less than 5/1000th of one percent of total U.S. R&D expenditure. Or how about this:

In 1994 Pepsi Co announced, following two years of market research conducted among 5,000 people, that it would spend a further $50 million to reinvent its Doritos -brand tortilla chip. Pepsico’s principal concern: to ensure that Doritos maintain market dominance in the face of growing competition from the new larger “restaurant style” corn chips. (News coverage of this story neglected to mention that the leading “restaurant style” chip, Tostitos -brand, also happens to be a Pepsico product.) The expenditure of more than $50 million to ensure that Pepsico’s Doritos remain America’s top-selling snack food, ahead of Pepsico’s own competing Tostitos, represents approximately five times our estimate of the current total annual U.S. investment in community-based research.

I believe that a society that can afford $50 million to reinvent the Doritos chip, can do better than $10 million for community-based research. That, my friends, is the new Pepsi Challenge.

We undertook this new study because remarkably little is known about the overall state of community-based research in the U.S. To-date the Loka Institute has identified about 75 centers or programs in the U.S. that routinely conduct community-based research — many more than have previously been identified.

Our report’s analysis is organized in terms of 18 findings, among them: o There is growing demand for community-based research, and much of it is not being met. Our study found that community research centers are forced to deny many requests for research assistance, either because they don’t fall within a center’s mission area or due to resource constraints. For instance, the U.S. Environmental Protection Agency supports some community-based research under its Environmental Justice Community-University Grants program, but during the 2-year period 1995-1996, funding limitations permitted that EPA program to support only 16 of 156 proposals submitted. In most cases a community group that a center turns down has no recourse; the needed research is not performed. o Our study estimates crudely that the total number of community research projects conducted annually in the United States is somewhere between 400 and 1,200. Some other nations conduct much more community-based research.

On the other hand, the United States not only needs more community-based research, but can also easily afford it. Traditional research projects in academia, industry, and government often cost from $50,000 up to $1 million, and occasionally much more. In contrast, a typical community-based research project costs on the order of $10,000. (The low cost results partly from the fact that the research team often includes community volunteers or college students.)

While the number of U.S. community research centers is growing, their survival remains in doubt. More than half the centers in our study worry that lack of funding could force them to shut down.

While there are community research centers in the United States, they are few and far between, and relatively inaccessible to the groups that could most benefit from them. In contrast, the Dutch, for example, have developed a comprehensive community research system that can address questions on virtually any topic for any group or organization throughout Dutch civil society located anywhere in the nation.

Our study estimates that creating a U.S. community research system that would provide service as comprehensively and accessibly as does the Dutch system would cost on the order of $450 million annually. That is about 45 times current U.S. investment in community-based research; even so, it would still represent less than 1/4 of one percent of total U.S. R&D expenditure (from all sources, public and private). 450 million for a robust, nationwide Community Research Network would also represent only about 2 percent of annual federal expenditure at all U.S. Government laboratories. Now, I assume — in the aftermath of the Cold War — that the rationale for maintaining a national lab system is to conduct research that is in the social interest but that other research institutions won’t fund or are ill-prepared to conduct. On that basis, I sometimes envision the Community Research Network evolving into the decentralized, democratic core of an authentic post-Cold War national laboratory system.

The bottom line? It’s kind of a no-brainer: Our analysis of community based research reveals a striking mismatch between the United States’ generously endowed, mainstream R&D agenda and the urgent needs of countless communities across the country. Community-based research is low cost, and provides a wide variety of important social benefits. The U.S. needs more community-based research, and can easily afford it.

Since 1995 the Loka Institute’s broader Community Research Network project has sought to establish similar capabilities in the United States by organizing conferences, creating Internet discussion forums, designing an Internet compilation of community research centers worldwide, and other related activities. We will be expanding and improving this Internet database during the next several years, but anyone can already view and search it via the Loka Web page to learn about more than 50 U.S. community research centers, plus more worldwide. Loka’s work has also directly inspired efforts to establish new community research centers in Israel and South Korea, plus a new network of community research centers across Canada.

We all understand that a modern society must provide universal access to certain basic necessities, such as clean water and electricity. I believe that in an information society, the benefits of community-based research should also become universally accessible.

The entire report can be downloaded at no charge from the Loka.

Dick Sclove
Loka Institute
Amherst, MA


  IV. Publicly Funded Cancer Research TOP
By SEHN Staff 

The Journal “Chemistry and Industry” reports that a group of public health experts and scientists has called on the US government to freeze the federal cancer research budget and set up an inquiry into the ‘enormous’ profits made by cancer drug manufacturers. The Cancer Prevention Coalition claimed that publicly funded cancer research has done little except enrich the drug industry. Research efforts should be redirected at reducing exposure to industrial carcinogens in air, water, consumer products and the workplace, the group said.According to Coalition chairman Samuel Epstein, a professor of environmental medicine at the University of Illinois, $25bn of research into cancer drugs has failed to significantly improve treatment and survival rates for most cancers. Two-thirds of all cancer drugs on the market were developed using public funds, the coalition said, ‘The reason for losing the war on cancer is not a shortage of funds but their gross misallocation,’ Epstein said. ‘The National Cancer Institute and American Cancer Society remain myopically fixated on damage control -diagnosis and treatment – and basic genetic research, with not always benign indifference to cancer prevention.’ The National Cancer Institute allocated only 3% of its budget to prevention, he added.

Last year the US pharmaceutical industry was forced to defend its record on cancer therapy following the release of a study claiming that it had achieved little in the past 25 years. Trade group Pharmaceutical Research and Manufacturers of America said it was confident that drugs could help win the war against cancer. (Chemistry & Industry 5 Oct 1998).


  V. Letters to the Editor TOP
By Clark Bullard

As a former public official who has funded research, and as a current Director of an industry-funded University research center, I would like to offer a perspective on the issue of biased and bought science.In the words of Swedish Nobel Laureate Gunnar Myrdal, “Questions must be asked before answers can be given. The questions are expressions of our interest in the world; they are at bottom valuations.”

The institution sponsoring the research gets to ask the questions. The researcher can take it or leave it, or can renegotiate the question before accepting the research funds.

We all have our biases, and have been taught to “discipline” our research in a professional manner. The purpose of course, is to prevent the researcher’s personal biases from influencing the results. But no person is perfect and no process is perfect, so we design peer review processes to keep us honest.

Myrdal’s advice is on target. Encourage everyone to identify explicitly the biases underlying the questions posed by the research sponsor. And make it clear in your publications that other questions, perhaps more important to those who lack funds to sponsor research, are not addressed here.

Clark Bullard, Director
Air Conditioning & Refrigeration Center
Department of Mechanical & Industrial Engineering
University of Illinois

By Ted Steck
I found the “LIVING DOWNSTREAM” piece engaging. (June 1998 Networker Vol. 3 #2) We need citizen vigilance. But as a physician/scientist/environmentalist, I was disturbed by the tone of the piece. It reminded me of ol’ Joe McCarthy’s guilt-by-association and “insinuendo” (to use one of his malapropisms). I have consulted for different groups; that does not put me on their payroll or mean that I profit from their policies or actions. Indeed, my work for them hopefully made them better and not me worse. And even though the NEJM has erred in some ways, that does not allow the assignment of guilt the authors dish out so liberally.

It is also dangerous for your writers to assume and allege that the world’s leading cancer epidemiologists are incompetent and/or corrupt because the link between cancer and environmental pollutants appears different to the informed layman than to these experts. Putting environmental angst at odds with the expertise and power of this scientific establishment may sooner discredit the movement than cure cancer. Serious environmentalists should not become identified with ever-present cancer-phobia, conspiracy theory and loose thinking. They should ask good questions and not impugn their potential allies.

If it is good science that we are after, so that the truth be known and appropriate action taken, then we must control our passions and our tongues. The environmental cause is too vulnerable to do otherwise.

Ted Steck
University of Chicago