Skip to main content
SpringerLink
Log in

Bringing the Social into Genetics: The Psychosocial Genetics Risk Assessment and Management Framework (PG-RAM)

  • Published:
Current Psychology Aims and scope Submit manuscript

Abstract

As increasing numbers of people are identified at risk for multi-factorial diseases, questions of how to assess, communicate and manage genetic risk will be critical from health services and policy perspectives. However, there is currently no evidence-based genetic risk assessment and management framework to assist policy makers, clinicians and other stakeholders. A comprehensive psychosocial framework for risk assessment and management has been developed in the context of security hazards or threats. In an adaptation of that model, we present the Psychosocial Genetics Risk Assessment and Management framework (PG-RAM). It offers principles to enhance the integration of evidence-based best practices into genetics health services, as well as to identify issues, knowledge and gaps. The framework identifies the core elements of the situation, effects, population and interventions, all spanning several phases of genetic disorders. The framework provides an excellent starting point for knowledge syntheses in the context of genetic risk and could serve as the conceptual basis for practical tool development to guide healthcare professionals and decision makers in preparing for and responding to the psychosocial aspects of genetic risk.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  • Almqvist, E., Bloch, M., Brinkman, R., Craufurd, D., & Hayden, M. (1999). A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington’s disease. American Journal of Human Genetics, 64, 1293–1304.

    Article  PubMed  Google Scholar 

  • Baum, A., Friedman, A., & Zakowski, S. (1997). Stress and genetic testing for disease risk. Health Psychology, 16, 8–19.

    Article  PubMed  Google Scholar 

  • Binedell, J., & Soldan, J. (1997). Nonparticipation in Huntington’s disease predictive testing: reasons for caution in interpreting findings. Journal of Genetic Counseling, 6, 419–432.

    Article  Google Scholar 

  • Blaine, S., & Carroll, J. (2002). Genetic screening for hereditary breast/ovarian and colorectal cancers. The Foundation for Medical Practice Education, 10, 1–9.

    Google Scholar 

  • Bottorff, J., Ratner, P., Richardson, C., Balneaves, L., McCullum, M., Hack, T., et al. (2003). The influence of question wording on assessments of interest in genetic testing for breast cancer risk. Psycho-Oncology, 12, 720–728.

    Article  PubMed  Google Scholar 

  • Bottorff, J., Blaine, S., Carroll, J., Esplen, M., Evans, J., Nicolson Klimek, M., et al. (2005). The educational needs and professional roles of Canadian physicians and nurses regarding genetic testing and adult onset hereditary disease. Community Genetics, 8, 80–87.

    Article  PubMed  Google Scholar 

  • Braithwaite, D., Emery, J., Walter, F., Prevost, A., & Sutton, S. (2006). Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. Familial Cancer, 5, 61–75.

    Article  PubMed  Google Scholar 

  • Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: a systematic review. European Journal of Human Genetics, 2000(8), 731–38.

    Article  Google Scholar 

  • Cameron, L., & Diefenbach, M. (2001). Responses to information about psychosocial consequences of genetic testing for breast cancer susceptibility: influences of cancer worry and risk perceptions. Journal of Health Psychology, 6, 47–59.

    Article  Google Scholar 

  • Codori, A., Petersen, G., Miglioretti, D., Larkin, E., Bushey, M., Young, C., et al. (1999). Attitudes toward colon cancer gene testing: factors predicting test uptake. Cancer Epidemiology, Biomarkers & Prevention, 8, 345–351.

    Google Scholar 

  • Codori, A., Waldeck, T., Petersen, G., Miglioretti, D., Trimbath, J., & Tillery, M. (2005). Genetic counseling outcomes: perceived risk and distress after counseling for hereditary colorectal cancer. Journal of Genetic Counseling, 14, 119–132.

    Article  PubMed  Google Scholar 

  • Collins, F., & McKusick, V. (2001). Implications of the human genome project for medical science. Journal of the American Medical Association, 285, 540–544.

    Article  PubMed  Google Scholar 

  • Cormier, L., Valeri, A., Azzouzi, R., Fournier, G., Cussenot, O., Berthon, P., et al. (2002). Worry and attitude of men in at-risk families for prostate cancer about genetic susceptibility and genetic testing. The Prostate, 51, 276–285.

    Article  PubMed  Google Scholar 

  • Cox, S., & 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, 622–646.

    Article  Google Scholar 

  • Croyle, R., & Lerman, C. (1999). Risk communication in genetic testing for cancer susceptibility. Journal of the National Cancer Institute. Monographs, 25, 59–66.

    PubMed  Google Scholar 

  • Donovan, K., & Tucker, D. (2000). Knowledge about genetic risk for breast cancer and perception of genetic testing in a sociodemographically diverse sample. Journal of Behavioral Medicine, 23, 15–36.

    Article  PubMed  Google Scholar 

  • Emery, J., Watson, E., Rose, P., & Andermann, A. (1999). A systematic review of the literature exploring the role of primary care in genetic services. Family Practice, 16, 426–445.

    Article  PubMed  Google Scholar 

  • Etchegary, H. (2004). Psychological aspects of predictive genetic test decisions: what do we know so far? Analyses of Social Issues and Public Policy, 4, 13–31.

    Article  Google Scholar 

  • Etchegary, H., Cappelli, M., Potter, B., Vloet, M., Graham, I., Walker, M., et al. (2010). Attitude and knowledge about genetics and genetic testing. Public Health Genomics, 13(2), 80–88.

    Article  PubMed  Google Scholar 

  • Gaskell, G., Allum, N., Bauer, M., Durant, J., Allansdottir, A., Bonfadelli, H., et al. (2000). Biotechnology and the European public. Nature Biotechnology, 18, 935–938.

    Article  PubMed  Google Scholar 

  • Haddow, J., & Palomaki, G. (2004). ACCE: A model process for evaluating data on emerging genetic tests. In M. Khoury, J. Little, & W. Burke (Eds.), Human genome epidemiology (pp. 122–145). Oxford: Oxford University Press.

    Google Scholar 

  • Hadley, D., Jenkins, J., Dimond, E., de Carvalho, M., Kirsch, I., & Palmer, C. (2004). Colon cancer screening practices after genetic counseling and testing for hereditary nonpolyposis colorectal cancer. Journal of Clinical Oncology, 22, 39–44.

    Article  PubMed  Google Scholar 

  • Hallowell, N. (1999). Doing the right thing: genetic risk and responsibility. Sociology of Health & Illness, 21, 597–621.

    Article  Google Scholar 

  • Henderson, B., & Maguire, B. (1998). Lay representations of genetic disease and predictive testing. Journal of Health Psychology, 3, 233–241.

    Article  Google Scholar 

  • Heshka, J., Palleschi, C., Howley, H., Wilson, B., & Wells, P. (2008). A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genetics in Medicine, 10, 19–32.

    Article  PubMed  Google Scholar 

  • Jones, I., Scourfield, J., McCandless, F., & Craddock, N. (2002). Attitudes towards future testing for bipolar disorder susceptibility genes: a preliminary investigation. Journal of Affective Disorders, 71, 189–193.

    Article  PubMed  Google Scholar 

  • Kenen, R., Ardern-Jones, R., & Eeles, R. (2003). Living with chronic risk: healthy women with a family history of breast/ovarian cancer. Health, Risk and Society, 5, 315–331.

    Article  Google Scholar 

  • Khoury, M. (2003). Genetics and genomics in practice: the continuum from genetic disease to genetic information in health and disease. Genetics in Medicine, 5, 261–268.

    Article  PubMed  Google Scholar 

  • Lee, R., Kmet, L., Cook, L., Lorenzetti, D., Godlovitch, G., & Einsiedal, E. (2005). Risk assessment for inherited susceptibility to cancer: a review of the psychosocial and ethical dimensions. Genetic Testing, 9, 66–79.

    Article  PubMed  Google Scholar 

  • Lemyre, L., Clement, L., Corneil, W., Craig, L., Boutette, P., Tyshenko, M., et al. (2008). A psychosocial risk assessment and management framework to enhance response to CBRN terrorism threats and attacks. Biosecurity and Bioterrorism: Biodefense Strategy, Practice, and Science, 3, 316–330.

    Article  Google Scholar 

  • Lerman, C., Hughes, C., Croyle, R., Main, D., Durham, C., Snyder, L., et al. (2000). Prophylactic surgery decisions and surveillance practices one year following BRCA 1/2 testing. Preventive Medicine, 31, 75–80.

    Article  PubMed  Google Scholar 

  • Lerman, C., Croyle, R., Tercyak, K., & Hamann, H. (2002). Genetic testing: psychological aspects and implications. Journal of Consulting and Clinical Psychology, 70, 784–797.

    Article  PubMed  Google Scholar 

  • Lim, J., Macluran, M., Price, M., Bennett, B., & Butow, P. (2004). Short- and long-term impact of receiving genetic mutation results in women at increased risk for hereditary breast cancer. Journal of Genetic Counseling, 13, 115–133.

    Article  PubMed  Google Scholar 

  • Marteau, T., & Croyle, R. (1998). Psychological responses to genetic testing. British Medical Journal, 316, 693–696.

    PubMed  Google Scholar 

  • McCabe, L., & McCabe, E. (2008). Expanded newborn screening: implications for genomic medicine. Annual Review of Medicine, 59, 163–175.

    Article  PubMed  Google Scholar 

  • McGuire, A., Cho, M., & Caulfield, T. (2007). The future of personalized genomics. Science, 317, 1687.

    Article  PubMed  Google Scholar 

  • McIntosh, A., Shaw, C., & Evans, G. (2004). Clinical guidelines and evidence review for the classification and care of women at risk of familial breast cancer. London: National Collaborating Centre for Primary Care: University of Sheffield.

    Google Scholar 

  • Meiser, B. (2005). Psychological impact of genetic testing for cancer suceptibility: an update of the literature. Psycho-oncology, 14, 1060–74.

    Article  PubMed  Google Scholar 

  • Meiser, B., & Dunn, S. (2000). Psychological impact of genetic testing for Huntington’s disease: an update of the literature. Journal of Neurology, Neurosurgery and Psychiatry, 69, 574–578.

    Article  Google Scholar 

  • Morren, M., Rijken, M., Baanders, A., & Bensing, J. (2007). Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease. Patient Education and Counseling, 65, 197–204.

    Article  PubMed  Google Scholar 

  • Paling, J. (2003). Strategies to help patients understand risks. British Medical Journal, 327, 745–748.

    Article  PubMed  Google Scholar 

  • Qureshi, N., Wilson, B., Santaguida, P., Little, J., Carroll, J., Allanson, J., et al. (2009). Family history and improving health. Agency for Healthcare Research and Quality. Accessed October 7, 2009: http://www.ahrq.gov/downloads/pub/evidence/pdf/famhistory/famhimp.pdf.

  • Rolland, J. (1994). Families, illness, and disability: An integrative treatment model. New York: Basic Books.

    Google Scholar 

  • Rolland, J. (1999). Commentary: families and genetic fate: a millennial challenge. Families, Systems & Health, 17, 123–132.

    Article  Google Scholar 

  • Rolland, J., & Williams, J. (2005). Toward a biopsychosocial model for 21rst century genetics. Family Process, 44, 3–24.

    Article  PubMed  Google Scholar 

  • Sanderson, S., Wardle, J., & Michie, S. (2005). The effects of a genetic information leaflet on public attitudes towards genetic testing. Public Understanding of Science, 14, 213–224.

    Article  PubMed  Google Scholar 

  • Sheehy, H., Legault, M., & Ireland, D. (1998). Consumers and biotechnology: a synopsis of survey and focus group research. Journal of Consumer Policy, 21, 359–386.

    Article  Google Scholar 

  • Singer, E., Corning, A., & Lamias, M. (1998). Trends: genetic testing, engineering, and therapy: awareness and attitudes. Public Opinion Quarterly, 62, 633–664.

    Article  Google Scholar 

  • Street, E., & Soldan, J. (1998). A conceptual framework for the psychosocial issues faced by families with genetic conditions. Families, Systems, & Health, 16, 217–232.

    Article  Google Scholar 

  • Struewing, J., Lerman, C., Kase, R., Giambarresi, T., & Tucker, M. (1995). Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families. Cancer Epidemiology, Biomarkers & Prevention, 4, 169–173.

    Google Scholar 

  • Trepanier, A., Ahrens, M., McKinnon, W., Peters, J., Stopfer, J., Grumet, S., et al. (2006). Genetic cancer risk assessment and counseling: recommendations of the national society of genetic counselors. Journal of Genetic Counseling, 13, 83–114.

    Article  Google Scholar 

  • Wilson, B. (2006). The challenge of developing evidence-based genetics health care in practice. Familial Cancer, 5, 55–59.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Division of Medicine, Memorial University, Room H1407, Level 1, Health Sciences Centre, 300 Prince Phillip Drive, St. John’s, NL, A1B 3V6, Canada

    Holly Etchegary, Louise Lemyre & Brenda Wilson

Authors
  1. Holly Etchegary
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Louise Lemyre
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Brenda Wilson
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Holly Etchegary.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Etchegary, H., Lemyre, L. & Wilson, B. Bringing the Social into Genetics: The Psychosocial Genetics Risk Assessment and Management Framework (PG-RAM). Curr Psychol 29, 171–187 (2010). https://doi.org/10.1007/s12144-010-9085-7

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12144-010-9085-7

Keywords

Search

Navigation