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Multistage Sampling for Disease Family Registries

Multistage Sampling for Disease Family Registries Introduction of Section: Enabling Informed Decisions About Cancer Risk Barbara Bowles Biesecker risk information and the efficacy of various decision-making Determining health risk is a science. Communicating risk models need to be studied not only in genetic counseling but also information to a patient remains an art. This health care practice to a greater degree in cancer risk communication. depends on complexities of human relationships, communica- The research on individual cancer risk communication related tion styles, intellectual abilities, and emotional receptivity. For to risk perception and decision making reviewed in this mono- the practice of risk communication to meet its goals, this art graph should inform future research and policy. The following must also be informed by science. Evidence of how risk com- background papers raise interesting areas of future inquiry. The munication is most successful and when it translates into in- first review article, by Alexander Rothman and Marc Kiviniemi, creased health should become the basis for the future practice of synthesizes the research evaluating approaches to communicat- risk communication. ing health risk information. They suggest that risk communica- Research on individual risk perception and health care deci- tion that includes not only a numerical risk estimate but also sions concerning cancer risks can currently inform the practice information about the causes and consequences of a health prob- of risk communication. The focus of the next section in the lem may prove most effective in successfully communicating monograph addresses risk perception and decision making under risk information. Kevin McCaul and Heather Tulloch evaluate conditions of uncertainty, particularly where the information is the evidence for why people decide to obtain or avoid cancer complex, incomplete, and changing. While valuable data are screening. They conclude that counseling should focus not only reviewed and synthesized, many important areas for future re- on removing barriers to screening but also on influencing beliefs search remain. about the value of screening. Robert Croyle and Caryn Lerman My own profession of genetic counseling provides perhaps summarize results from recent studies of offering genetic testing no better example of the need for health care providers to un- for cancer predisposition to high-risk families. The evidence of derstand individual risk perception and the complexities of mak- efficacy and the policy implications of research findings on the ing health-related decisions. Genetic counselors appreciate the use of decision aids for patients considering health care options subjective nature of genetic risk. The loss inherent in a genetic are reviewed by Annette O’Connor and colleagues. They rec- risk is peculiar to the person concerned, as are the significance ommend that practitioners identify which health care decisions of the loss and the chance of its occurrence. Counselors often are sensitive to patients’ values and become familiar with avail- note the ways their clients polarize risk—its significance re- able resources. Howard Leventhal and Barnett Kramer have au- duced to the dichotomization that either the genetic condition thored commentaries on the articles. 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 Affiliation of author: Medical Genetics Branch, National Human Genome they place on the information. Studies of cancer risk communi- Research Institute, Bethesda, MD. cation have now been conducted in the context of genetic testing Correspondence to: Barbara B. Biesecker, M.S., National Institutes of Health, and will begin to shape future genetic counseling practices. The Bldg. 10, Rm. 10C101, Bethesda, MD 20892-1852 (e-mail: barbarab@nhgri. theoretical frameworks for understanding and communicating nih.gov). Journal of the National Cancer Institute Monographs No. 25, 1999 43 Downloaded from https://academic.oup.com/jncimono/article-abstract/1999/26/43/908219 by Ed 'DeepDyve' Gillespie user on 10 February 2018 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JNCI Monographs Oxford University Press

Multistage Sampling for Disease Family Registries

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Publisher
Oxford University Press
Copyright
Oxford University Press
ISSN
1052-6773
eISSN
1745-6614
DOI
10.1093/oxfordjournals.jncimonographs.a024225
Publisher site
See Article on Publisher Site

Abstract

Introduction of Section: Enabling Informed Decisions About Cancer Risk Barbara Bowles Biesecker risk information and the efficacy of various decision-making Determining health risk is a science. Communicating risk models need to be studied not only in genetic counseling but also information to a patient remains an art. This health care practice to a greater degree in cancer risk communication. depends on complexities of human relationships, communica- The research on individual cancer risk communication related tion styles, intellectual abilities, and emotional receptivity. For to risk perception and decision making reviewed in this mono- the practice of risk communication to meet its goals, this art graph should inform future research and policy. The following must also be informed by science. Evidence of how risk com- background papers raise interesting areas of future inquiry. The munication is most successful and when it translates into in- first review article, by Alexander Rothman and Marc Kiviniemi, creased health should become the basis for the future practice of synthesizes the research evaluating approaches to communicat- risk communication. ing health risk information. They suggest that risk communica- Research on individual risk perception and health care deci- tion that includes not only a numerical risk estimate but also sions concerning cancer risks can currently inform the practice information about the causes and consequences of a health prob- of risk communication. The focus of the next section in the lem may prove most effective in successfully communicating monograph addresses risk perception and decision making under risk information. Kevin McCaul and Heather Tulloch evaluate conditions of uncertainty, particularly where the information is the evidence for why people decide to obtain or avoid cancer complex, incomplete, and changing. While valuable data are screening. They conclude that counseling should focus not only reviewed and synthesized, many important areas for future re- on removing barriers to screening but also on influencing beliefs search remain. about the value of screening. Robert Croyle and Caryn Lerman My own profession of genetic counseling provides perhaps summarize results from recent studies of offering genetic testing no better example of the need for health care providers to un- for cancer predisposition to high-risk families. The evidence of derstand individual risk perception and the complexities of mak- efficacy and the policy implications of research findings on the ing health-related decisions. Genetic counselors appreciate the use of decision aids for patients considering health care options subjective nature of genetic risk. The loss inherent in a genetic are reviewed by Annette O’Connor and colleagues. They rec- risk is peculiar to the person concerned, as are the significance ommend that practitioners identify which health care decisions of the loss and the chance of its occurrence. Counselors often are sensitive to patients’ values and become familiar with avail- note the ways their clients polarize risk—its significance re- able resources. Howard Leventhal and Barnett Kramer have au- duced to the dichotomization that either the genetic condition thored commentaries on the articles. 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 Affiliation of author: Medical Genetics Branch, National Human Genome they place on the information. Studies of cancer risk communi- Research Institute, Bethesda, MD. cation have now been conducted in the context of genetic testing Correspondence to: Barbara B. Biesecker, M.S., National Institutes of Health, and will begin to shape future genetic counseling practices. The Bldg. 10, Rm. 10C101, Bethesda, MD 20892-1852 (e-mail: barbarab@nhgri. theoretical frameworks for understanding and communicating nih.gov). Journal of the National Cancer Institute Monographs No. 25, 1999 43 Downloaded from https://academic.oup.com/jncimono/article-abstract/1999/26/43/908219 by Ed 'DeepDyve' Gillespie user on 10 February 2018

Journal

JNCI MonographsOxford University Press

Published: Dec 1, 1999

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