Communicating Genetic and Genomic Information: Health Literacy and Numeracy Considerations

Genomic research is transforming our understanding of the role of genes in health and disease. These advances, and their application to common diseases that affect large segments of the general population, suggest that researchers and practitioners in public health genomics will increasingly be called upon to translate genomic information to individuals with varying levels of health literacy and numeracy. This paper discusses the current state of research regarding public understanding of genetics and genomics, the influence of health literacy and numeracy on genetic communication, and behavioral responses to genetic and genomic information. The existing research suggests that members of the general public have some familiarity with genetic and genomic terms but have gaps in understanding of underlying concepts. Findings from the limited research base to date indicate that health literacy affects understanding of print and oral communications about genetic and genomic information. Numeracy is also likely to be an important predictor of being able to understand and apply this information, although little research has been conducted in this area to date. In addition, although some research has examined behavior change in response to the receipt of information about genetic risk for familial disorders and genomic susceptibility to common, complex diseases, the effects of health literacy and numeracy on these responses have not been examined. Potential areas in which additional research is needed are identified and practical suggestions for presenting numeric risk information are outlined. Public health genomics researchers and practitioners are uniquely positioned to engage in research that explores how different audiences react to and use genomic risk information.

[1]  Ellen Peters,et al.  Understanding the Role of Numeracy in Health: Proposed Theoretical Framework and Practical Insights , 2009, Health education & behavior : the official publication of the Society for Public Health Education.

[2]  S. Kardia,et al.  Exploring the Public Understanding of Basic Genetic Concepts , 2004, Journal of Genetic Counseling.

[3]  James E Andrews,et al.  Genomics—the perfect information–seeking research problem , 2005, Journal of health communication.

[4]  Amanda L Golbeck,et al.  A definition and operational framework for health numeracy. , 2005, American journal of preventive medicine.

[5]  T. Manolio,et al.  How to Interpret a Genome-wide Association Study Topic Collections , 2022 .

[6]  Elizabeth Greenberg,et al.  A First Look at the Literacy of America's Adults in the 21st Century. NCES 2006-470. , 2006 .

[7]  B. Meiser,et al.  Screening and preventive behaviors one year after predictive genetic testing for hereditary nonpolyposis colorectal carcinoma , 2005, Cancer.

[8]  S. Loader,et al.  Impact of genetic testing for breast-ovarian cancer susceptibility. , 2004, Genetic testing.

[9]  C. Isaacs,et al.  Bilateral prophylactic oophorectomy and ovarian cancer screening following BRCA1/BRCA2 mutation testing. , 2003, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[10]  Putting genetics in perspective , 2001, BMJ : British Medical Journal.

[11]  Jonathan Baron,et al.  The Effect of Numerical Statements of Risk on Trust and Comfort with Hypothetical Physician Risk Communication , 2004, Medical decision making : an international journal of the Society for Medical Decision Making.

[12]  Judith H Hibbard,et al.  Consumer Competencies and the Use of Comparative Quality Information , 2007, Medical care research and review : MCRR.

[13]  Carlos A Estrada,et al.  Literacy and Numeracy Skills and Anticoagulation Control , 2004, The American journal of the medical sciences.

[14]  N. Weinstein What does it mean to understand a risk? Evaluating risk comprehension. , 1999, Journal of the National Cancer Institute. Monographs.

[15]  Sarah E Lillie,et al.  Retention and Use of Breast Cancer Recurrence Risk Information from Genomic Tests: The Role of Health Literacy , 2007, Cancer Epidemiology Biomarkers & Prevention.

[16]  C. Watts,et al.  The role of genetics in the provision of essential public health services. , 2007, American journal of public health.

[17]  Muin J. Khoury,et al.  Letting the genome out of the bottle--will we get our wish? , 2008, The New England journal of medicine.

[18]  V. Reyna,et al.  Numeracy, Ratio Bias, and Denominator Neglect in Judgments of Risk and Probability. , 2008 .

[19]  D. Wetter,et al.  Proactive, motivationally enhanced smoking cessation counseling among women with elevated cervical cancer risk. , 2005, Nicotine & tobacco research : official journal of the Society for Research on Nicotine and Tobacco.

[20]  Kimberly A Kaphingst,et al.  Anchoring-and-Adjustment Bias in Communication of Disease Risk , 2009, Medical decision making : an international journal of the Society for Medical Decision Making.

[21]  C. McBride,et al.  Patient responses to genetic information: studies of patients with hereditary cancer syndromes identify issues for use of genetic testing in nephrology practice. , 2010, Seminars in nephrology.

[22]  Lee Ellington,et al.  Assessing oral literacy demand in genetic counseling dialogue: preliminary test of a conceptual framework. , 2007, Social science & medicine.

[23]  S. Steinberg,et al.  Perceptions of cancer risks and predictors of colon and endometrial cancer screening in women undergoing genetic testing for Lynch syndrome. , 2008, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[24]  H. de Vries,et al.  General public's knowledge, interest and information needs related to genetic cancer: an exploratory study , 2005, European journal of cancer prevention : the official journal of the European Cancer Prevention Organisation.

[25]  D. Roter,et al.  The rapid estimate of adult literacy in genetics (REAL‐G): A means to assess literacy deficits in the context of genetics , 2008, American journal of medical genetics. Part A.

[26]  T. Marteau,et al.  Genetic risk and behavioural change , 2001, BMJ : British Medical Journal.

[27]  C. Strange,et al.  Does genetic testing result in behavioral health change? Changes in smoking behavior following testing for alpha-1 antitrypsin deficiency , 2007, Annals of behavioral medicine : a publication of the Society of Behavioral Medicine.

[28]  R. Rudd,et al.  Health and Literacy: A Review of Medical and Public Health Literature , 1999 .

[29]  J. Emery,et al.  Lay Understanding of Familial Risk of Common Chronic Diseases: A Systematic Review and Synthesis of Qualitative Research , 2004, The Annals of Family Medicine.

[30]  David A. Kindig,et al.  Health literacy : a prescription to end confusion , 2004 .

[31]  K. Matsuo,et al.  An intervention study of smoking cessation with feedback on genetic cancer susceptibility in Japan. , 2006, Preventive medicine.

[32]  Brenda Wilson,et al.  A systematic review of perceived risks, psychological and behavioral impacts of genetic testing , 2008, Genetics in Medicine.

[33]  E. Pergament,et al.  An Assessment of Ethnocultural Beliefs Regarding the Causes of Birth Defects and Genetic Disorders , 1998, Journal of Genetic Counseling.

[34]  D. Lafayette,et al.  Attitudes Toward Cystic Fibrosis Carrier and Prenatal Testing and Utilization of Carrier Testing Among Relatives of Individuals with Cystic Fibrosis , 1999, Journal of Genetic Counseling.

[35]  R. Parrott,et al.  Diversity in lay perceptions of the sources of human traits: genes, environments, and personal behaviors. , 2003, Social science & medicine.

[36]  D. Bowen,et al.  Research and Practice Opportunities at the Intersection of Health Education, Health Behavior, and Genomics , 2005, Health education & behavior : the official publication of the Society for Public Health Education.

[37]  J. McClure,et al.  Are Biomarkers a Useful Aid in Smoking Cessation? A Review and Analysis of the Literature , 2001, Behavioral medicine.

[38]  G. Bepler,et al.  Interpretation of genetic risk feedback among African American smokers with low socioeconomic status. , 2004, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[39]  C. Isaacs,et al.  Utilization of breast cancer screening in a clinically based sample of women after BRCA1/2 testing. , 2002, Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology.

[40]  D. Bowen,et al.  Anticipating dissemination of cancer genomics in public health: A theoretical approach to psychosocial and behavioral challenges , 2007, Annals of behavioral medicine : a publication of the Society of Behavioral Medicine.

[41]  Marcus R Munafò,et al.  Genetics and smoking cessation improving outcomes in smokers at risk. , 2007, American journal of preventive medicine.

[42]  C. Condit How Culture and Science Make Race "Genetic": Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous , 2008, Literature and medicine.

[43]  B. Bates,et al.  What does “A gene for heart disease” mean? A focus group study of public understandings of genetic risk factors , 2003, American journal of medical genetics. Part A.

[44]  S. Humphries,et al.  Psychological impact of genetic testing for familial hypercholesterolemia within a previously aware population: A randomized controlled trial , 2004, American journal of medical genetics. Part A.

[45]  C. McBride,et al.  Putting science over supposition in the arena of personalized genomics , 2008, Nature Genetics.

[46]  Jessica S Ancker,et al.  Rethinking health numeracy: a multidisciplinary literature review. , 2007, Journal of the American Medical Informatics Association : JAMIA.

[47]  P. Goodson,et al.  Public Health Genomics knowledge and attitudes: A survey of public health educators in the United States , 2007, Genetics in Medicine.

[48]  J. Satagopan,et al.  Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers. , 2002, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[49]  Mark A. Kutner,et al.  The Health Literacy of America's Adults: Results from the 2003 National Assessment of Adult Literacy. NCES 2006-483. , 2006 .

[50]  E. Legius,et al.  Surveillance Behavior and Prophylactic Surgery After Predictive Testing for Hereditary Breast/Ovarian Cancer , 2005, Behavioral medicine.

[51]  P. Slovic,et al.  Numeracy skill and the communication, comprehension, and use of risk-benefit information. , 2007, Health affairs.

[52]  A. Samanek,et al.  Australian Study on Public Knowledge of Human Genetics and Health , 2008, Public Health Genomics.

[53]  R. Croyle,et al.  Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. , 2000, Preventive medicine.

[54]  E. J. Mayeaux,et al.  Rapid estimate of adult literacy in medicine: a shortened screening instrument. , 1993, Family medicine.

[55]  P. Ubel,et al.  Making numbers matter: present and future research in risk communication. , 2007, American journal of health behavior.

[56]  I. Kirsch,et al.  Colon cancer screening practices after genetic counseling and testing for hereditary nonpolyposis colorectal cancer. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[57]  B. Devellis,et al.  CF carrier testing: Experience of relatives , 1995, Journal of Genetic Counseling.

[58]  C. Condit,et al.  Determinism and mass-media portrayals of genetics. , 1998, American journal of human genetics.

[59]  Colleen M McBride,et al.  Incorporating genetic susceptibility feedback into a smoking cessation program for African-American smokers with low income. , 2002, Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology.

[60]  I. Lipkus Numeric, Verbal, and Visual Formats of Conveying Health Risks: Suggested Best Practices and Future Recommendations , 2007, Medical decision making : an international journal of the Society for Medical Decision Making.

[61]  N. Caporaso,et al.  Genetic susceptibility testing in smoking-cessation treatment: one-year outcomes of a randomized trial. , 1997, Addictive behaviors.

[62]  Mark A. Kutner,et al.  The Health Literacy of American Adults:Results from the 2003 National Assessment of Adult Literacy. , 2006 .

[63]  S. Dehaene,et al.  The Number Sense: How the Mind Creates Mathematics. , 1998 .

[64]  H. Valdimarsdottir,et al.  Enhancing the readability of materials describing genetic risk for breast cancer. , 2004, Cancer control : journal of the Moffitt Cancer Center.

[65]  R. Croyle,et al.  Genetic testing for a BRCA1 mutation: Prophylactic surgery and screening behavior in women 2 years post testing , 2003, American journal of medical genetics. Part A.

[66]  Chris M. R. Smerecnik,et al.  Educating the general public about multifactorial genetic disease: applying a theory-based framework to understand current public knowledge , 2008, Genetics in Medicine.