impact breast cancer mortality, the committee is concerned that limited resources and outdated infrastructure will increasingly limit the pace of progress. Thus, to ensure that the promise of these advances is fulfilled, the committee believes that both research and the clinical infrastructure must be adapted in order to overcome existing barriers to research and the adoption of effective technologies.

C2. Professional societies should work together with women’s health organizations to identify barriers to participation in studies (especially those that require provision of biologic specimens) and ways in which those barriers might be overcome.

  • A public education campaign should be undertaken to inform the public, particularly underrepresented groups, of the merit of participation in research studies that require the involvement of healthy volunteers and the donation of biologic specimens for genetic analysis.

  • Advocacy groups and women’s health organizations should participate in design and execution of public education about clinical trials. This could be a collaborative effort, and might include the National Cancer Institute and the American Cancer Society.

  • The Department of Health and Human Services should join with private entities in monitoring the effect of the Health Insurance Portability and Accountability Act Privacy Rule on the pace of research progress.

Of particular concern are the barriers to public participation in clinical trials that have been raised as the unintended consequences of privacy concerns and other initiatives. Because the development of better and evidence-based methods for the early detection of breast cancer will require large-scale clinical trials and those trials depend on public participation, the committee recommends seeking ways to overcome barriers to public participation. The same barriers threaten to impede essential epidemiological research because the identification of markers depends on the availability of blood and other biologic specimens from healthy volunteers.

Another roadblock to improving the current situation is the tendency of many women to either over- or underestimate their own breast cancer risk, which can affect their decision about whether to participate in a screening program.

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