Screening/Medical Monitoring

Day Two began with a session on Screening and Medical Monitoring. Robert Spengler, Sc.D., of the Agency for Toxic Substances and Disease Registry, and R. Michael Tuttle, M.D., reviewed existing recommendations and programs for screening and monitoring. They provided a handout that described the recommendations of various interested organizations and studies. Dr. Spengler also presented the proposed Hanford Medical Monitoring Program, which is not yet funded. He discussed recent revisions to the proposed program that address and reduce the potential harms of thyroid cancer screening expressed in the IOM report. In addition, he submitted documents on the proposal and revisions to NCI as handouts for the participants.

Keith Baverstock, Ph.D., of the World Health Organization, Helsinki, Finland, and Owen Hoffman, Ph.D., talked about assessing individual risk. Dr. Baverstock discussed the value of estimating individual risk, and the limitations of such estimates. He presented the NAS/IOM scheme for describing individuals' risk as falling into three non-numerical categories. Individuals born after the cessation of testing are not at risk; individuals over 18 at the time of testing are at very low risk. For other age categories, the NAS/IOM recommends that DHHS develop a method for calculating an individual "score"-for purposes of categorizing only, not as a numerical expression of risk-that takes into account location, milk consumption, milk source, and gender differences. The resulting scores would then be linked to recommendations for appropriate actions for individuals in each category.

Dr. Hoffman discussed the identification of high-risk sub-groups. He suggested the following criteria be used to determine high-risk status: those in childhood at the time of atmospheric testing, goat's milk drinkers, those with a family history of thyroid cancer or other thyroid abnormalities, and those with estimated doses above a given decision level. Dr. Hoffman emphasized that for the case of goat's milk drinkers who were children during the testing period, enough is known already to classify them as high-risk, without further dose refinement. He highlighted the inherent uncertainty of individual dose estimates and proposed that decisions be based on either the upper or lower bound of confidence on the dose estimates, and suggested a detailed framework for doing this.

Valerie Fiset, R.N., M.Sc.N., of the Sisters of Charity Ottawa Health Service, Ontario, Canada, presented a model for helping people make difficult health-related decisions. Decision aids walk patients with their health care provider through steps that help them look at options available, the potential outcomes of those options, and help the patient consider their values in relation to those options. Decision aids are used when the outcomes of the options are not very well known and the patient needs to judge the value of the benefits and risks. They are also useful when there is practice variation around a screening or treatment option. Her group has developed decision aids around chemotherapy for advanced lung cancer, hormone replacement therapy, and lumpectomy versus mastectomy for breast cancer treatment.

At this point, participant discussion began. Audience members were looking for clarification of the scope and goals of the campaign. Some expressed frustration with the government's past record on radiation issues and skepticism that things would change. Denise Cavanaugh, the workshop facilitator, asked the group for recommendations and to develop a "wish list" of outcomes for the campaign. They are listed below.

General Recommendations

• Move forward with a campaign. Do not wait until all of the science is in. Talk about what you know and offer that more information on dose and associated risks will be provided when feasible.
  
  
• Educate the "publics" about the basics of radiation fallout, exposure (from individual facilities, and globally), and health impacts, while giving a sense of the complexity of the information.
  
  
• Keep public representatives involved as partners.
  
  
• The participants agreed on a framework to discuss I-131 first and then additional radionuclides, as information becomes available. That framework was called: "Public Health Legacy of Nuclear Production, Research, and Testing."

"Wish List" of Activities

Near Future (3 months)

• A communications plan with financial support.
  
  
• A decision about access to federally sponsored screening for uninsured and underinsured populations.
  
  
• Inclusion of state health departments in campaign development and implementation.
  
  
• Partnership with Native American tribal governments in developing the campaign.
  
  
• Use of the listserv as an interactive communications tool for discussion and review of draft planning documents.
  
  
• Consideration of a resource center with a toll-free number, i.e., an entity responsible for delivery of information.
  
  
• Development of an archive (or expansion of existing archives around the country) of documents and resources pertaining to the Nevada test Site and resulting exposures, in keeping with the ACERER recommendation.
  
  
• Continuation of relationships built at the January 2000 Workshop.
  
  
• Government acknowledgment of the legacy of nuclear production, research, and testing and commitment to prevention in the future.
  
  
• A clear set of recommended actions for the public to take with regard to exposure.
  
  
• Study of the ongoing health effects of existing nuclear action

• Outreach to communities.
  
  
• Outreach to Federal agencies.
  
  
• Physician education implementation.
  
  
• Evaluation of campaign implementation.
  
  
• Benchmarks for physician education, etc.
  
  
• Development of cultural- and language-appropriate messages/materials for special populations.
  
  
• Addressing additional radionuclides.
  
  
• American public understanding fallout and health legacy.

Developing Model Outreach

Peter Sandman, Ph.D., a risk communications consultant, explained the difference between hazard (how dangerous something is) and outrage (how much it upsets people) and the fact that they are often poorly correlated. He suggested a two-pronged campaign. One audience is people who are significantly endangered by NTS fallout and deserve a warning. The second audience is the larger public whose hazard is low. He offered five options for messages to them, ranging from doing what you can to keep them from becoming outraged to getting them outraged to organize them politically. He suggested that the diverse interests in the room could work together on a campaign to reach those who are high risk, but would probably need to work separately to communicate to the larger public, since their goals would likely vary.

Regardless of how hazardous the fallout is to the public's health, Dr. Sandman noted that public outrage over nuclear fallout should be expected and is justified based on a list of twelve factors, including the involuntary nature of the exposure and the government's unresponsiveness to public concern. He said that in order to be credible, the government must acknowledge the outrage and admit that it is justified. He ended by saying that the government should apologize a lot; overestimate, rather than underestimate the risk; show concern, feeling and humanity; and acknowledge the moral relevance of the situation.

Neil Weinstein, Ph.D., of Rutgers University, discussed the challenges involved in communicating about risk, based on his experience with radon and other programs. He talked about the public's difficulty in understanding numbers and probabilities and the likelihood that people will be apathetic to the message that a health risk has occurred. He also warned against providing too much information in an effort to enable people to make their own informed decisions. He advocated giving recommendations for action with sufficient background information, without flooding people with all the details on dosing, probabilities, and the science of I-131 exposure.

Ed Maibach, Ph.D., of Porter Novelli, presented the results of six focus groups held with consumers and physicians to begin getting a sense of their knowledge and attitudes about radiation fallout and health risks, to understand their perceived risk, their degree of concern, and to understand their needs for information on these issues. The participants were drawn from two cities with a high exposure to I-131 and one with a lower exposure. The preliminary report was provided at the meeting.

• The consumers in both areas showed little concern about radiation fallout, had little interest in something that occurred in the past, and were more concerned by health issues they face today. But there was great passion for securing assurances that the tests never happen again. People wanted to know the big picture about the consequences of NTS testing rather than just about I-131.



• The physicians knew very little about nuclear testing and its health impacts. They called for a permanent ban on nuclear testing. They asked that a public education campaign not be mounted because it would create a mess without helping the public. They said a physician campaign might be a good idea, though they weren't convinced it would change their clinical practice at all.

Dr. Maibach ended by reminding the workshop participants that this was just the beginning of the audience research needed to develop a campaign. During the question and answer period following the presentation, workshop participants noted the likelihood that focus group responses were tied to the source and format of the information stimulus they received. It was pointed out that this should be taken into account in locating appropriate "messengers" for delivering exposure information to the public. Later in the workshop, the participants spent time discussing additional audience research needs.

Campaign Goals

Following the audience research presentation, workshop participants developed four goals for the communication campaign, which received wide support:

1. Acknowledge/explain what happened as a result of nuclear weapons production, research, and testing and what is happening now. Engage or encourage the public in a policy discussion on this issue.



2. Educate the public on the potential health consequences of I-131 and other radiation exposures so they can make good decisions. Provide mechanisms for follow-up (e.g. toll-free number) for people without a health care provider.



3. Educate health care providers about the health consequences of I-131 fallout and other radiation exposures as well as the pros and cons of thyroid evaluation so they can help their patients make good decisions.
   
4. Facilitate diagnosis, screening, and if necessary, treatment, for those with cancer and non-cancer radiation-related illnesses.

A number of organization representatives committed to working on specific campaign goals:

• Physicians for Social Responsibility, Alliance for Nuclear Accountability, and the National Indian Council on Aging expressed interest in working on goal #1 and bringing the topic to their organizations' meetings in May (PSR and ANA), and August (National Indian Council on Aging).


• Physicians for Social Responsibility, Alliance for Nuclear Accountability, National Association for the Advancement of Colored People (NAACP), and the National Association of Radiation Survivors offered to work with the federal government on goal #2.

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