Introduction of section: enabling informed decisions about cancer risk.

Abstract

Determining health risk is a science. Communicating risk information to a patient remains an art. This health care practice depends on complexities of human relationships, communication styles, intellectual abilities, and emotional receptivity. For the practice of risk communication to meet its goals, this art must also be informed by science. Evidence of how risk communication is most successful and when it translates into increased health should become the basis for the future practice of risk communication. Research on individual risk perception and health care decisions concerning cancer risks can currently inform the practice of risk communication. The focus of the next section in the monograph addresses risk perception and decision making under conditions of uncertainty, particularly where the information is complex, incomplete, and changing. While valuable data are reviewed and synthesized, many important areas for future research remain. My own profession of genetic counseling provides perhaps no better example of the need for health care providers to understand individual risk perception and the complexities of making health-related decisions. Genetic counselors appreciate the subjective nature of genetic risk. The loss inherent in a genetic risk is peculiar to the person concerned, as are the significance of the loss and the chance of its occurrence. Counselors often note the ways their clients polarize risk—its significance reduced to the dichotomization that either the genetic condition will or will not occur. Overall, it remains uncertain in genetic counseling how clients interpret and use genetic risk information in making their decisions about genetic testing and the value they place on the information. Studies of cancer risk communication have now been conducted in the context of genetic testing and will begin to shape future genetic counseling practices. The theoretical frameworks for understanding and communicating risk information and the efficacy of various decision-making models need to be studied not only in genetic counseling but also to a greater degree in cancer risk communication. The research on individual cancer risk communication related to risk perception and decision making reviewed in this monograph should inform future research and policy. The following background papers raise interesting areas of future inquiry. The first review article, by Alexander Rothman and Marc Kiviniemi, synthesizes the research evaluating approaches to communicating health risk information. They suggest that risk communication that includes not only a numerical risk estimate but also information about the causes and consequences of a health problem may prove most effective in successfully communicating risk information. Kevin McCaul and Heather Tulloch evaluate the evidence for why people decide to obtain or avoid cancer screening. They conclude that counseling should focus not only on removing barriers to screening but also on influencing beliefs about the value of screening. Robert Croyle and Caryn Lerman summarize results from recent studies of offering genetic testing for cancer predisposition to high-risk families. The evidence of efficacy and the policy implications of research findings on the use of decision aids for patients considering health care options are reviewed by Annette O’Connor and colleagues. They recommend that practitioners identify which health care decisions are sensitive to patients’ values and become familiar with available resources. Howard Leventhal and Barnett Kramer have authored commentaries on the articles.