Keywords
psychological risk
subjective risk
objective risk
FAP
How to Cite
Abstract
The aims of this study are to know if subjects at-risk were aware of their 50% risk for Familial Amyloidotic Polyneuropathy (FAP); to know the value of the subjective risk; to understand the association between sociodemographic characteristics and risk perception and between the risk status and the subjective perception of risk. 174 subjects 50% at-risk for FAP were tested. 52.9% subjects at-risk were aware of their 50% risk condition. The mean value of the subjective risk was higher and closer to 50% when the subjects were aware of their 50% risk condition. Education was associated to a higher awareness of being at 50% risk. It seems that information on previous knowledge before performing the genetic counselling increases the subjective risk.
Al-Rawad, M., & Al Khattab, A. (2015). Risk perception in a developing country: The case of Jordan. International Business Research, 8(1), 81-96. http://dx.doi.org/10.5539/ibr.v8n1p81
Brewer, N. T., Chapman, G. B., Gibbons, F. X., Gerrard, M., McCaul, K. D., & Weinstein, N. D. (2007). Meta-analysis of the relationship between risk perception and health behavior: The example of vaccination. Health Psychology, 26(2), 136-145. http://dx.doi.org/10.1037/0278-6133.26.2.136
Cantor, N., & Norem, J. K. (1989). Defensive pessimism and stress coping. Social Cognition, 7, 92-112. http://dx.doi.org/10.1521/soco.1989.7.2.92
Coelho, T., Maia, L. F., Martins da Silva, A., Waddington, M., Planté-Bordeneuve, V., Lozeron, P., … Grogan, D. R. (2012). Tafamidis for transthyretin familial amyloid polyneuropathy: A randomized, controlled trial. Neurology, 79, 785-792. http://dx.doi.org/10.1212/WNL.0b013e3182661eb1
Coutinho, P. (1976). Aspectos neurológicos da PAF. Boletim do Hospital, 1, 27-34.
Cox, S. M., & McKellin, W. (1999). ‘There’s this thing in our family’: Predictive testing and the construction of risk for Huntington Disease. Sociology of Health & Illness, 21(5), 622-646. http://dx.doi.org/10.1111/1467-9566.00176
Darker, C., & Phillips, A. (2016). Risk perception. In M. Gellman & R. Turner (Eds.), Encyclopedia of Behavioral Medicine (pp. 1-3). New York: Springer-Verlag. http://dx.doi.org/10.1007/978-1-4614-6439-6_866-2
Etchegary, H. (2011). 'I put it on the back burner most days': Living with chronic risk. Health, 15(6), 633-649. http://dx.doi.org/10.1177/1363459310364162
Evers-Kiebooms, G., & Decruyenaere, M. (1998). Predictive testing for Huntington's disease: A challenge for persons at risk and for professionals. Patient Education and Counseling, 35, 15-26. http://dx.doi.org/10.1016/S0738-3991(98)00086-X
Evers-Kiebooms, G., & Fryns, J. P. (1999). Conseil génétique dans les maladies neurodégénératives: Approche multidisciplinaire dans le diagnostic prédictif. In A. Brice & D. F. Schorderet (Eds.), Neurogénétique: Affections hérédo-dégénératives, Collection Traité de neurologie (pp. 13-22). Paris: Doin.
Evers-Kiebooms, G., Welkenhuysen, M., Claes, E., Decruyenaere, M., & Denayer, L. (2000). The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: implications for multidisciplinary counselling and for genetic education. Social Science & Medicine, 51(6), 831-841. http://dx.doi.org/10.1016/S0277-9536(00)00064-2
Folstein, S. E., Franz, M. L., Jensen, B. A., Chase, G. A., & Folstein, M. F. (1983). Conduct disorder and affective disorder among offspring of patients with Huntington's disease. Psychological Medicine, 13(1), 45-52. http://dx.doi.org/10.1017/S0033291700050054
Hoffmann, T. C., & Del Mar, C. (2015). Patients' expectations of the benefits and harms of treatments, screening, and tests: A systematic review. JAMA Internal Medicine, 175(2), 274-286. http://dx.doi.org/10.1001/jamainternmed.2014.6016
Inouye, J. (2014). Risk perception: Theories, strategies, and next steps. Wellington: Campbell Institute.
Jamieson, C. E. (2001). Genetic testing for late onset diseases: Current research practices and analysis of policy development. Ottawa: Health Canada Applied Research and Analysis Directorate.
Joffe, H. (2003). Risk: From perception to social representation. British Journal of Social Psychology, 42(1), 55-73. http://dx.doi.org/10.1348/014466603763276126
Lippman-Hand, A., & Fraser, F. C. (1979). Genetic counselling – The postcounselling period: I. Parents' perceptions of uncertainty. American Journal Medicine Genetics, 4(1), 51-71. http://dx.doi.org/10.1002/ajmg.1320040108
Patenaude, A. F., Guttmacher, A. E., & Collins, F. S. (2002). Genetic testing and psychology: New rules, new responsabilities. American Psychologist, 57(4), 271-282. http://dx.doi.org/10.1037/0003-066X.57.4.271
Pelletier, S., & Dorval, M. (2004). Predictive genetic testing raises new professional challenges for psychologists. Canadian Psychology, 45(1), 16-30. http://dx.doi.org/10.1037/h0086968
Petersen, A. (2001). Biofantasies: Genetics and medicine in the print media. Social Science and Medicine, 52(8), 1255-1268. http://dx.doi.org/10.1016/S0277-9536(00)00229-X
Quaid, K. A., Sims, S. L., Swenson, M. M., Harrison, J. M., Moskowitz, C., Stepanov, N., … Westphal, B. J. (2008). Living at risk: Concealing risk and preserving hope in Huntington disease. Journal Genetic Counseling, 17(1), 117-128. http://dx.doi.org/10.1007/s10897-007-9133-0
Sequeiros, J. (1996). Aconselhamento genético e teste preditivo na doença de Machado-Joseph. In J. Sequeiros (Ed.), O Teste Preditivo da doença de Machado-Joseph (pp. 33-48). Porto: UnIGENe, IBMC.
Siaki, L. A., Loescher, L. J., & Trego, L. L. (2013). Synthesis strategy: Building a culturally sensitive mid-range theory of risk perception using literary, quantitative, and qualitative methods. Journal of Advanced Nursing, 69(3), 726-737. http://dx.doi.org/10.1111/j.1365-2648.2012.06096
Sjöberg, L. (2004). Principles of risk perception applied to gene technology. To overcome the resistance to applications of biotechnology, research on risk perception must take a closer look at the public's reasons for rejecting this technology. EMBO Reports, 5(S1), S47-S51. http://dx.doi.org/10.1038/sj.embor.7400258
Sjöberg, L. (2012). Risk perception and societal response. In Handbook of risk theory (pp. 661-675). Netherlands: Springer.
Sjöberg, L., Moen, B. -E., & Rundmo, T. (2004). Explaining risk perception. An evaluation of the psychometric paradigm in risk perception research. Trondheim: Rotunde Publikasjoner.
Slovic, P. (1987). Perception of risk. Science, 236(4799), 280-285. http://dx.doi.org/10.2307/1698637
Slovic, P., & Elke, W. (2002, April). Perception of risk posed by extreme events. Paper presented at the Conference Risk Management Strategies in an Uncertain World, New York. Retrieved from https://www.ldeo.columbia.edu/chrr/documents/meetings/roundtable/pdf/roundtable_exec_final.pdf
Slovic, P., & Peters, E. (2006). Risk perception and affect. Current Directions in Psychological Science, 15, 6322-325. http://dx.doi.org/10.1111/j.1467-8721.2006.00461
Taylor, S. D. (2003). Predictive testing for an individual at 25% risk for Huntington’s disease: Present conundrums, future challenges. Journal of Futures Studies, 7(4), 27-36.
Ulleberg, P., & Rundmo, T. (1996, September). Risk perception, affectivity and health. Presented at the 10th Conference of European Health Psychology, Dublin, Ireland.
Weber, E. U. (2006). Evidence-based and description-based perceptions of long term risk: Why global warming does not scare us (yet). Climatic Change, 77(1-2), 103-120. http://dx.doi.org/10.1007/s10584-006-9060-3
Wexler, N. S. (1979). Genetic “russian roulette”: The experience of being "at risk" for Huntington's disease. In S. Kessler (Ed.), Genetic counselling: Psychological dimensions (pp. 199-220). London: Academic Press.
This journal is registered under a Creative Commons Attribution 4.0 International Public License. Thus, this work may be reproduced, distributed, and publicly shared in digital format, as long as the names of the authors and Pontificia Universidad Javeriana are acknowledged. Others are allowed to quote, adapt, transform, auto-archive, republish, and create based on this material, for any purpose (even commercial ones), provided the authorship is duly acknowledged, a link to the original work is provided, and it is specified if changes have been made. Pontificia Universidad Javeriana does not hold the rights of published works and the authors are solely responsible for the contents of their works; they keep the moral, intellectual, privacy, and publicity rights. Approving the intervention of the work (review, copy-editing, translation, layout) and the following outreach, are granted through an use license and not through an assignment of rights. This means the journal and Pontificia Universidad Javeriana cannot be held responsible for any ethical malpractice by the authors. As a consequence of the protection granted by the use license, the journal is not required to publish recantations or modify information already published, unless the errata stems from the editorial management process. Publishing contents in this journal does not generate royalties for contributors.