IDEAS home Printed from https://ideas.repec.org/a/sae/medema/v40y2020i5p655-668.html
   My bibliography  Save this article

A Modern Dilemma: How Experts Grapple with Ambiguous Genetic Test Results

Author

Listed:
  • Courtney L. Scherr

    (Department of Communication Studies, Northwestern University, Evanston, IL, USA)

  • Amy A. Ross Arguedas

    (Department of Communication Studies, Northwestern University, Evanston, IL, USA)

  • Hannah Getachew-Smith

    (Department of Communication Studies, Northwestern University, Evanston, IL, USA)

  • Charlotte Marshall-Fricker

    (Department of Communication Studies, Northwestern University, Evanston, IL, USA)

  • Neeha Shrestha

    (Department of Communication Studies, Northwestern University, Evanston, IL, USA)

  • Kayla Brooks

    (Department of Communication Studies, Northwestern University, Evanston, IL, USA)

  • Baruch Fischhoff

    (Department of Engineering and Public Policy, Carnegie Mellon University, Pittsburgh, PA, USA)

  • Susan T. Vadaparampil

    (Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA)

Abstract

Objective . Clinicians regularly use panel genetic testing to identify hereditary breast cancer risk, but this practice increases the rate of receiving an ambiguous test result, the variant of uncertain significance (VUS). VUS results are a growing and long-term challenge for providers and have caused negative patient outcomes. The objective of this study was to elicit expert opinions about patients’ decision making after receiving a VUS result to provide future guidance for VUS disclosure. Methods . Using an adapted mental models approach, experts ( N = 25) completed an online survey and in-depth interview eliciting qualitative judgments of the factors relevant to informed patient decision making after receiving a VUS result. Content analysis of interview transcripts clarified the basis for these judgments. Results . Participants identified 11 decisions facing patients after receiving VUS results grouped into ambiguity management or risk management. The experts also identified 24 factors relevant to each decision, which reflected 2 themes: objective factors (e.g., clinical information, guidelines) and psychosocial factors (e.g., understanding or risk perception). Conclusion . This study presents an adaptation of the mental models approach for communication under conditions of ambiguity. Findings suggest providers who present VUS results from genetic testing for hereditary breast cancer should discuss decisions related to ambiguity management that focus on hope for future reclassification, and be directive when discussing risk management decisions. Objective and psychosocial factors should influence both ambiguity and risk management decisions, but especially risk management decisions.

Suggested Citation

  • Courtney L. Scherr & Amy A. Ross Arguedas & Hannah Getachew-Smith & Charlotte Marshall-Fricker & Neeha Shrestha & Kayla Brooks & Baruch Fischhoff & Susan T. Vadaparampil, 2020. "A Modern Dilemma: How Experts Grapple with Ambiguous Genetic Test Results," Medical Decision Making, , vol. 40(5), pages 655-668, July.
    • Handle: RePEc:sae:medema:v:40:y:2020:i:5:p:655-668
    DOI: 10.1177/0272989X20935864
    as

    Download full text from publisher

    File URL: https://journals.sagepub.com/doi/10.1177/0272989X20935864
    Download Restriction: no
    File URL: https://libkey.io/10.1177/0272989X20935864?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Cynthia J. Atman & Ann Bostrom & Baruch Fischhoff & M. Granger Morgan, 1994. "Designing Risk Communications: Completing and Correcting Mental Models of Hazardous Processes, Part I," Risk Analysis, John Wiley & Sons, vol. 14(5), pages 779-788, October.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Branden B. Johnson, 1999. "Ethical Issues in Risk Communication: Continuing the Discussion," Risk Analysis, John Wiley & Sons, vol. 19(3), pages 335-348, June.
    2. Matthew D. Wood & Ann Bostrom & Todd Bridges & Igor Linkov, 2012. "Cognitive Mapping Tools: Review and Risk Management Needs," Risk Analysis, John Wiley & Sons, vol. 32(8), pages 1333-1348, August.
    3. Peter Taylor‐Gooby & Jens O. Zinn, 2006. "Current Directions in Risk Research: New Developments in Psychology and Sociology," Risk Analysis, John Wiley & Sons, vol. 26(2), pages 397-411, April.
    4. Sarah E. Hampson & Judy A. Andrews & Michael E. Lee & Lyn S. Foster & Russell E. Glasgow & Edward Liechtenstein, 1998. "Lay Understanding of Synergistic Risk: The Case of Radon and Cigarette Smoking," Risk Analysis, John Wiley & Sons, vol. 18(3), pages 343-350, June.
    5. A. Skarlatidou & T. Cheng & M. Haklay, 2012. "What Do Lay People Want to Know About the Disposal of Nuclear Waste? A Mental Model Approach to the Design and Development of an Online Risk Communication," Risk Analysis, John Wiley & Sons, vol. 32(9), pages 1496-1511, September.
    6. Branden B. Johnson, 2004. "Varying Risk Comparison Elements: Effects on Public Reactions," Risk Analysis, John Wiley & Sons, vol. 24(1), pages 103-114, February.
    7. Perri, 2001. "Review Essay: Can there be a unified science of fear?," Journal of Risk Research, Taylor & Francis Journals, vol. 4(4), pages 431-445, October.
    8. Carless, Travis S. & Redus, Kenneth & Dryden, Rachel, 2021. "Estimating nuclear proliferation and security risks in emerging markets using Bayesian Belief Networks," Energy Policy, Elsevier, vol. 159(C).
    9. Branden B. Johnson, 2003. "Communicating Air Quality Information: Experimental Evaluation of Alternative Formats," Risk Analysis, John Wiley & Sons, vol. 23(1), pages 91-103, February.
    10. Teun Terpstra & Michael K. Lindell & Jan M. Gutteling, 2009. "Does Communicating (Flood) Risk Affect (Flood) Risk Perceptions? Results of a Quasi‐Experimental Study," Risk Analysis, John Wiley & Sons, vol. 29(8), pages 1141-1155, August.
    11. Nick Boase & Mathew White & William Gaze & Clare Redshaw, 2017. "Evaluating the Mental Models Approach to Developing a Risk Communication: A Scoping Review of the Evidence," Risk Analysis, John Wiley & Sons, vol. 37(11), pages 2132-2149, November.
    12. Yan Cao & William L. McGill, 2013. "LinkIT: A Ludic Elicitation Game for Eliciting Risk Perceptions," Risk Analysis, John Wiley & Sons, vol. 33(6), pages 1066-1082, June.
    13. Tzu Yang Loh & Mario P. Brito & Neil Bose & Jingjing Xu & Kiril Tenekedjiev, 2020. "Fuzzy System Dynamics Risk Analysis (FuSDRA) of Autonomous Underwater Vehicle Operations in the Antarctic," Risk Analysis, John Wiley & Sons, vol. 40(4), pages 818-841, April.
    14. Parnali Dhar‐Chowdhury & C. Emdad Haque & S. Michelle Driedger, 2016. "Dengue Disease Risk Mental Models in the City of Dhaka, Bangladesh: Juxtapositions and Gaps Between the Public and Experts," Risk Analysis, John Wiley & Sons, vol. 36(5), pages 874-891, May.
    15. Angela Bearth & Marie‐Eve Cousin & Michael Siegrist, 2016. "“The Dose Makes the Poison”: Informing Consumers About the Scientific Risk Assessment of Food Additives," Risk Analysis, John Wiley & Sons, vol. 36(1), pages 130-144, January.
    16. Ann Bostrom & Cynthia J. Atman & Baruch Fischhoff & M. Granger Morgan, 1994. "Evaluating Risk Communications: Completing and Correcting Mental Models of Hazardous Processes, Part II," Risk Analysis, John Wiley & Sons, vol. 14(5), pages 789-798, October.
    17. Melissa L. Finucane & Joan L. Holup, 2006. "Risk as Value: Combining Affect and Analysis in Risk Judgments," Journal of Risk Research, Taylor & Francis Journals, vol. 9(2), pages 141-164, March.
    18. Jérôme Boutang & Michel de Lara, 2016. "Risk Marketing," Working Papers hal-01353821, HAL.
    19. Karlijn L. van den Broek & Sina A. Klein & Joseph Luomba & Helen Fischer, 2021. "Introducing M‐Tool: A standardised and inclusive mental model mapping tool," System Dynamics Review, System Dynamics Society, vol. 37(4), pages 353-362, October.
    20. Jörg Niewöhner & Patrick Cox & Simon Gerrard & Nick Pidgeon, 2004. "Evaluating the Efficacy of a Mental Models Approach for Improving Occupational Chemical Risk Protection," Risk Analysis, John Wiley & Sons, vol. 24(2), pages 349-361, April.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:sae:medema:v:40:y:2020:i:5:p:655-668. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: SAGE Publications (email available below). General contact details of provider: .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.