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Science and Advocacy - July 1999
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By Carolyn Raffensperger
I have a favorite question for my younger friends who graduate from high school and head off to college: What is the largest problem in the
world that you can imagine solving with your skills and interests? Few have an immediate answer but most come back a few weeks later with a
new vision for what college might provide -- an education that might help them be of service.
This issue of the Networker is about people who have used life situations -- medical education, academic affiliation, or experience with a child
born with a birth defect -- to make a difference in the world. Some might criticize these scientific efforts as "advocacy" or "bias."
At the Science and Environmental Health Network we believe that
scientists have an obligation to the public good. Advocating for public health and the environment should not be seen as bad science but
as pressing science into service on behalf of the public. Bias in favor of public health and the environment should be required for scientists
who serve on government committees, do peer review for journals, and advise the media. Bias, of course, is not the same as financial conflict
of interest.
The question is whether bias compromises scientific integrity. We know that financial conflicts of interest undermine the outcomes of
research. I would suggest that coming to research with a desire to protect public health and the environment enhances our ability to solve
problems and so creates better research.
The stories that follow in this issue of the Networker wrestle with questions of advocacy and who has a right to speak for public health. Enjoy!
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By Ted Schettler
A colleague who serves with me on the committee on occupational and environmental health of the state medical society suggested that
the committee review the health implications of medical and municipal waste incineration. Having studied the matter in detail, she thought this
was a timely topic for the medical society in a state that incinerates more than 50% of its trash.
The chairman agreed but suggested that it would also be appropriate to "bring in someone from the other side." He went on to say that
this might be necessary since she was an advocate--good-naturedly implying that she could not be unbiased in her assessment.
She recounted her history of interest in the topic. After breastfeeding two children for long periods, she learned that human milk
is contaminated with a variety of toxicants, including dioxin. Wondering about its origin, she followed the data upstream and discovered
that trash incinerators were among the leading sources of environmental dioxin releases and food chain contamination. It was an
analytical process that she applied daily in medical practice. Why, she asked, did this make her an advocate who could not be trusted to present
a fair analysis of the health implications of waste disposal practices? Why was being an advocate for public health any different from being an
advocate for a patient's health?
An advocate is one who pleads another's cause. To advocate is to plead in favor of some cause or position. Central to the
physician-patient relationship are explicit and implicit ethical and legal considerations. In addition to providing care and advice that meets
accepted standards, good physicians are also patient advocates. Physicians as advocates have a capacity for empathy that patients find
reassuring in times of uncertainty, vulnerability, and distress.
Most patients whom I see in clinic want me to be their advocate.
Advocacy is often essential when ill or injured patients must also deal with unsympathetic, skeptical employers who hold out unjustified
work absences as reason for dismissal. Advocacy may be preventive as, for example, when I advise a change in an unsafe work practice or a
pattern of behavior that is likely to result in illness or injury. In fact, many forms of advocacy are accepted as standards of care, and when I fail
in this role, I may be justly criticized.
As an advocate, I am still held to standards of truthfulness and intellectual honesty. My role as patient advocate is not seen to interfere
somehow with my ability and responsibility to meet those standards.
To become an advocate for the public's health is a very different
matter. The mission of public health practice is to assure conditions in which people can be healthy. It is accomplished through
diverse community efforts aimed at disease prevention and health promotion. Unlike traditional medical care, public health practice is not
the exclusive domain of licensed professionals and their staffs. All citizens, including engineers, farmers, politicians,
environmentalists, community groups, and many others, as well as health professionals, determine the success of the public health mission.
Many community, regional, national, and global activities impact public health either directly or indirectly through interactions with other
factors in complex social systems.
In the 19th century, Rudolf Virchow, considered by many the founder of modern pathology, described medicine as a social science. He
argued against biomedical reductionism and in favor of considering the influence of social structure on health and illness. Virchow
explicitly described politics as the practice of public health on a large scale. Competing interests and perspectives clash and interact in the
political arena, with profound implications for public health. In complex social systems it is often impossible to quantify the contribution of
one particular factor to public health or illness, leaving room for debate and disagreement. Individuals become advocates for particular
positions.
Scientists are often reluctant to enter a political fray for fear that their reputation for objectivity may be tarnished or that research funding
may dry up. But what is the role of the physician as scientist and public health advocate? When is advocacy appropriate and what are the
risks?
Though it was not always the case, physicians now commonly take a stand against tobacco use. The evidence is overwhelming that the risk of
lung cancer is much greater for smokers than non-smokers. Advocacy is expected. But far fewer physicians speak out against
dioxin contamination of breast milk. Why? All available evidence tells us that the developing organism is most sensitive to the health effects
of dioxin, that the nursing infant is exposed to 10-20 times the adult dietary level, and that current human tissue levels of dioxin are at or near
levels associated with adverse effects in animal studies.
The problem is that effects are often delayed, non-specific, and difficult to identify. Long latent periods make it nearly impossible to attribute
health effects to dioxin exposure with certainty, particularly when the relevant exposure occurs in utero or in infancy. Moreover, health effects
of dioxin exposure may be caused by other factors as well. They do not carry a dioxin-specific fingerprint which unequivocally makes the link.
Consequently, there is room for competing points of view about the contribution of dioxin exposure to human illness.
Some physicians are concerned that publicly discussing the issue will discourage women from breastfeeding, despite strong evidence of
its value to the child and mother. The public health implications of dioxin exposure as well as how we decide to dispose of our trash become
the subject of political debate. Competing interests find advocates to support opposing views. The authority of those who advocate an end
to dioxin exposure is called into question. This is medicine as a social science, albeit grounded in sound biomedical research.
The good physician is expected to be a patient advocate. There is little room for criticism--it is to be on the side of the angels. But the physician
advocate for public health enters a messy public arena where competing political, economic, and social agendas vie for ascendancy. Motives
and authority are called into question. This is a difficult setting in which to discuss scientific uncertainties and limited data. Yet it is where
public policies are formed, with important implications for public health.
It is, therefore, a logical, justifiable, and, I would argue, necessary
setting for extending the physician-patient relationship. The physician as public health advocate need not sacrifice objective analysis to fill this
role any more than in the physician-patient relationship. But varying analyses of science in the context of complex systems, along with diverse
political and economic agendas, often lead to differing public health conclusions and recommendations. And individuals who become advocates
for particular positions may find themselves up against formidable opposition--with the angels on the sideline.
Ted Schettler
SEHN staff scientist
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By Jill Stein
Advocacy is central to a physician's role and flows naturally from the preventive dimension of treatment. But if prevention and advocacy
are inherent to the practice of medicine, why do physicians usually stop short of advocating on behalf of the collective patient - the public?
There are two sets of reasons:
1) We believe we don't have time to become mired in bureaucratic
procedures; and, more important, we don't know enough about topics outside our clinical domain to risk speaking out about them. Physicians,
like the rest of the public, can only be as concerned as they are aware.
2) We put undue trust in boards of public health and regulatory
agencies. Unfortunately, these agencies, as well as both public and
scientific discussions of environmental health, are influenced by the political and financial power of corporate interests.
The first hearing I ever attended was that of a school board in a Boston suburb, called to consider a local roofer's suggestion that a
nontoxic alternative to PVC be considered for a school building. The vinyl industry had flown in their expert toxicologist from Washington,
DC, and had also tried to get the roofer fired by writing to his corporate employer, accusing him of irrational and irresponsible public
behavior.
A Harvard professor in an unrelated field, a local resident, registered his opinion that PVC was benign. But local scientific experts supporting
the nontoxic alternative were not allowed to present full testimony. I was not allowed to speak at all. I was going to say something about
the ominous presence of dioxin in breast milk and dioxin's origin in the manufacturing and disposal of PVC. Given equal costs and efficacy of
the materials, I would have suggested the use of common sense and precaution in the face of uncertain risks.
The first hearing has proven to be the rule, not the exception, in my
experience as an advocate for public environmental health. Local
hearings, in which physicians might have expected to play a neighborly, good-Samaritan role, are not theaters of thoughtful debate among
locally vested parties. They are high-stakes, high-intensity skirmishes.
As a rule, public concerns raised by thoughtful, well-intentioned local residents are refuted by paid employees of industry, experts in
the highly financed field of science-for-a-price who are indifferent if not hostile to local concerns. The board hearing the concerns is
generally appointed by an official whose budget or electoral campaign is supported by corporate contributions. The public, on the other hand, is
generally lacking in expertise and organization and must rely on public agencies for environmental health protection.
Instead of advocating for the public, the agencies that were conceived in the public interest (boards of health, departments of
environmental protection, the EPA) are at best "neutral" arbitrators between public and corporate interests. The public is left to defend itself,
largely without the means to do so.
Corporate influence is pervasive--in the media, research, and politics. Nevertheless, many physicians are deeply troubled by
escalating environmental decline and by the many red flags waving on the horizons of environmental health. I was one for whom continued
silence became untenable. With better tools emerging to bring physicians up to speed on environmental health issues--such as the American
Academy of Pediatrics Handbook of Environmental Health, the Mass. Medical Society's curriculum for Environmental Health--the information
gap will be less of a barrier to physician advocacy. But the hostile, industry-dominated climate in which discussions take place will deter many
would-be advocates.
A climate of reasoned and thoughtful discussion must be restored if the public health is to be salvaged from relentless, insidious degradation.
This will occur only if the playing field of regulatory deliberation is leveled. It will require:
Public empowerment.
Through education and information, the public will be better able to participate in the regulatory process.
Corporate containment.
Restraint of corporate political and financial influence peddling will allow meaningful regulatory deliberations.
Restoring public agencies to their intended role in protecting public
health and the environment. This requires the above two conditions as well as the removal of conflict of interest from decision-making bodies.
It is not an easy agenda. But physician advocacy can play a major role in restoring balance. Speaking from my own experience, mentoring
is critical when one is taking the first tentative steps into the world of advocacy, and networking is critical to staying there. Without
the support of physician colleagues, advocacy would be impossible for a noncombatant like myself.
It may be worth our efforts to establish a more formal and accessible system to support networking and resource sharing among
physicians, nurses, and other paramedical professionals who consider rising to the challenge of local environmental health advocacy. What is
at stake is nothing less than our democratic right to control our own health.
Jill Stein
Practicing Internist
Instructor in Adolescent Medicine at Harvard Medical School
Environmental Health Advocate
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By Nancy Myers
"Community-based research" is a controversial concept among scientists. Community-based research suggests to some a dangerous linking
of science to advocacy. It suggests the gathering of data with less than scientific rigor to arrive at solutions with less than scientific
impartiality. It suggests a kind of do-it-yourself people's science that questions the hard-earned authority of the highly trained, experienced,
disciplined researcher.
But the best examples of community-based research show instead that a partnership between scientists and "civilians" is increasingly
necessary for good science. The story of Betty Mekdeci and the Association for Birth Defect Children (ABDC) shows how the skills of
scientists and civilians complement each other in the search for scientific knowledge. In the process, both scientists and civilians learn to
respect each other's contributions and take on some of each other's methods and attitudes. Civilians become more scientific, and science
becomes more civil.
Betty Mekdeci was an advertising copywriter when her son David was born in 1976 with an obvious birth defect, an undeveloped right hand,
and other less visible physical problems. David's problems were chillingly reminiscent of the thalidomide babies of the fifties and sixties.
But thalidomide was long off the market. In fact, Betty took whatever drugs the doctor ordered during her pregnancy because she thought that
after the thalidomide disaster, all drugs given to pregnant women had surely been thoroughly tested.
Well, yes and no. Mekdeci's inquiries led her to focus on one drug she had taken for nausea, Bendectin, which was a new combination of
several previously approved drugs. Because its components had already been approved, the testing and approval process for Bendectin took just
28 days. The possible interaction of the ingredients was not considered, and no specific tests were done to determine the drug's possible
effect on unborn children.
Mekdeci began to try to learn everything she could about "teratogenic" birth defects - those caused at least partially by external
agents - and about Bendectin. At first, Mekdeci was intimidated by the task of uncovering scientific information and even more by the
credentialed guardians of that information. "As far as I was concerned, a Ph.D. or an M.D. was like a holy aura," she recalls.
But then a physician told her, "These issues are too important to be left to the experts." She took courage and began dashing off letters. A
sympathetic official in the office of the commissioner of the Food and Drug Administration gave Mekdeci a valuable tutorial on how to
extract the information she needed - whom to contact, what journals to consult, how to use the Freedom of Information Act.
Mekdeci learned that doing the detective work was far more challenging than interpreting the information she began to find. The first batch
of evidence she obtained from the FDA included 86 physician reports of congenital defects after Bendectin exposure - as opposed to one case
for each of two other drugs about which she had also inquired. Of the 86 cases, half were limb reduction defects, like her son's.
Eventually, after piling up formidable evidence from around the world, the Mekdecis sued Merrell, the drug company that produced Bendectin.
In a drama of industry pressure, fat cat lawyers, tainted juries, and eccentric judges worthy of a John Grisham tale, the Mekdecis won
a minimal settlement but lost on appeal. During this time, Merrell was purchased by Dow Chemical, which, according to Mekdeci, brought
its formidable power down not only on the family but on everyone concerned, including the media. At one time, she reports, 60 Minutes,
Redbook, Ladies Home Journal, and other mainstream media had producers or reporters on the story. "All the media stories were stopped,"
Mekdeci says, "except for the tabloids."
Nevertheless, Dow took Bendectin off the market.
Mekdeci still would like Dow to admit what happened. But she doesn't regret the loss in court - not much, anyhow. "If we had settled or
had been awarded big bucks, I wouldn't be doing what I am today," she says.
Today, the former ad writer is one of the leading lay experts on congenital defects related not only to Bendectin but also to Agent Orange and
the Gulf War Syndrome. But she is proudest of coming up with the "concept" - using a term from the advertising world - of a birth defect
registry. In developing the registry, Betty Mekdeci learned how to work with scientists, what she could do that most scientists could not, and
vise versa.
The ABDC's registry collects detailed data from families with birth-defect children and from groups that have been exposed to teratogenic
substances. The idea is to develop an ever-growing pool of information that will promote understanding of birth defects that are linked to
exposures and environmental factors.
"What we knew about teratogenic birth defects was that they were not initially identified by studies. Rather, they were identified by
alert practitioners who observed a pattern of birth defects and looked for some causal link," Mekdeci says. Most state and federal birth
defect research depends on records of observations at birth. "You don't have to deal with parental consent" to get that information, she says.
But many congenital abnormalities do not show up or fully reveal themselves for six months to five years. Only parents can report this and,
more crucially, exposures and factors in their own lives that might be related to the defect.
To extract this information, the ABDC designed a 16-page questionnaire for birth defect families and families exposed to certain
suspect substances such as Agent Orange. The association consulted scientists to make the questionnaire as specific and unbiased as
possible. So far, 4,000 families have provided the information and are part of the registry.
The registry violates a norm of scientific information-gathering in that it is "self-selected and self-reported," Mekdeci says. "But the
importance of that diminishes as the numbers increase. These people can't all be making it up. We also confirm the information we get
with medical records - although why would a mother report her child is missing a hand if he or she really isn't?"
When enough cases have been registered, data are analyzed to search for patterns. As the Agent Orange families began reporting, for
example, it did not take Mekdeci and cooperating scientists long to suspect a pattern of congenital disorders not easily detected at birth:
allergies, immune disorders, learning disabilities, attention deficit disorders, chronic skin problems.
Once a pattern is identified, the data are compared to other forms of
controlled research - animal and cell culture studies and other epidemiological studies. The Agent Orange pattern was consistent
with findings that suggested exposure to a substance affecting the immune system.
Mekdeci points out that the registry was not meant to provide the basis for scientific studies - only to suggest areas for science to investigate
further. "The big thing is to be able to work with scientists, to keep them on target. These are human issues."
But as the registry grows, its data may also serve as a resource for
scientific studies. ABDC and a researcher from the University of Texas Southwestern are working on a full-fledged study based on registry
data about Gulf War Syndrome families who have children with a rare cranial-facial birth defect known as Goldenhar Syndrome. The goal of
the study will be to determine if there are predisposing factors for this and other birth defects.
People like Betty Mekdeci and her organization are important bridges between science and the public. Scientists and doctors don't
always agree on what information to give to parents, and how to do it, she says. "Families need access to all they want to know." Figuring out
how much that is is a delicate process.
Mekdeci respects but is no longer intimidated by science and scientists. "The creative person has a different way of thinking from a scientist.
I take in many things and put them together. Science must be methodical and linear. It takes one idea and proves or disproves it. We
creative people see the big picture, and we can do the global thinking that may lead to new perspectives. Often we reach the same conclusions,
through different processes. We may get there more quickly, but we need to collaborate with scientists from different disciplines to prove
our hypotheses. Scientists get there methodically through a long, tedious process. Both are necessary."
Nancy Myers
SEHN's consulting editor
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By Nancy Myers
Eastern North Carolina has a high concentration of large-scale hog
operations that dispose their waste in smelly "lagoons." People who live near these operations have complained for years that the stench not
only disgusted them; it was literally making them sick. The state of North Carolina recently funded a modest study to find out whether that
might be true.
Steve Wing, an epidemiologist at the University of North Carolina
School of Public Health, led a team of researchers who conducted a health study of 155 residents of three rural communities--one near a hog
operation, one near a large cattle operation, and one that wasn't near any lagoon. The researchers found that people who lived near the
hogs had significantly higher incidence of respiratory and gastrointestinal symptoms--coughing, runny noses, diarrhea, burning eyes,
sore throats--than residents of the other communities.
The state health department said that the results, released in early
May, indicated that there was indeed a problem, which called for more definitive study. Meanwhile, the state health director advised residents to
avoid exposure to hog fumes as much as possible.
The state had done its duty in funding the study, issuing warnings, and promising further action. The media applauded. And Wing might
have patted himself on the back for doing a nice bit of scientific public service and gone on to the next project. Instead, Wing finds himself
in the middle of a controversy that has as complex a stench as hog manure itself. Public interest science is seldom simple, and it was not in this
case, either.
According to the Wilmington Star-News (May 9, 1999), the executive
director of the North Carolina Pork Council criticized the study because community groups had been involved in choosing potential sites.
"Someone ran interference and selected people who were going to be interviewed," the director said. Other industry spokespersons denounced
the study as "pseudoscience" and accused Wing of bias.
Contrary to industry accusations, households in the designated areas were selected randomly and approached in a predetermined order,
Wing says. Study participants were not told that the study had to do with hog odor, and Wing says there were indications that participants
remained oblivious.
"We had some open-ended questions at the end, asking whether there was anything in their immediate environment that affected their health.
There were cases when people told the researcher, 'no, everything is fine,' but then went on to describe how odors from the intensive
hog operation precipitated health symptoms and affected their everyday life."
Within a few hours of the release of the health study, the industry's
attorneys went into action, notifying the researchers that the North
Carolina Pork Council was studying whether the swine industry had been defamed. Citing the North Carolina public records statute, they
demanded copies of all records having to do with the study, including correspondence, survey responses, and maps of the study communities.
Wing recognized this as a blatant attempt at intimidation but
nevertheless turned over all the documents needed to reanalyze the data--electronic copies of the analysis file, dataset documentation, all
computer programs that produced the findings, sample data collection and coding forms, and other administrative materials requested.
Identifying information was removed from all materials. Information identifying the community or individual participants was withheld for
reasons of confidentiality.
Local media stayed on the researchers' side, chuckling with glee at the hog industry's heavy-handed tactics. "Researchers Steve Wing and
Susanne Wolf should consider it a badge of honor that they have attracted such disproportionate response, which tends to confirm the finding
that the industry emits bad odors--on the farm and in public discourse," proclaimed editors of the Chapel Hill News.
But Wing says the researchers are not the ones who are most vulnerable to such intimidation. Community members have far more to lose, and
he believes they are likely to do so if the hog industry has its way.
In mid-June, industry attorneys notified UNC attorneys that Wing's team had not been "fully responsive" to the earlier request for
information because they had not provided maps or other records that would identify the communities that participated in the survey. Revealing
the names of these small rural communities would also identify the individual participants.
"This is intimidation of the most serious kind," Wing says. He adds that the industry has a reputation for strong-arm tactics.
Wing says that before his team did the study they were told, in one
community highly polarized by the influx of numerous intensive livestock operations, "If we came here to do the survey, we had better finish
it on the same day. People wouldn't talk if we came back."
Michelle Nowlin, of the Southern Environmental Law Center in Chapel Hill, North Carolina, said researchers, local citizens, and
sympathetic legislators have been harassed by the pork industry in North Carolina and other areas.
The industry's best-known target was JoAnn Burkholder, the North
Carolina State researcher who discovered the microorganism Pfiesteria piscidica in the state's rivers and linked the
fish-killing dinoflagellate to hog effluent. Burkholder, the subject of a 1997 best-seller, was "vilified, pilloried, and professionally
discredited" after her findings were published, according to Nowlin.
Nowlin said other researchers have been harassed in similar ways, but she agrees with Wing that community members are even more
vulnerable.
Nowlin said that when a woman in her nineties who lived close to one of the North Carolina hog operations complained repeatedly about
blatant violations, such as effluent being sprayed on her house, the producer's lawyer threatened in a letter to "take her to jail." Another
woman who complained was threatened with the loss of her job. And in Kentucky, an industry employee is on trial for shooting an opponent in
the back.
Wing believes that his first responsibility is to "protect the
communities and residents who willingly and trustfully participated in the studies." He hopes the university will back his effort to
protect confidentiality.
Wing is not talking to the press these days or making public statements, because of the threatened legal action and because of the
responsibility he feels toward the study participants. But he believes advocacy and science can't be separated.
"All science has some element of advocacy," he said; if not for the
public, or for industry, then "for the scientist's own career."
Nancy Myers
SEHN's consulting editor |
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