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Knowledge, Attitudes, Willingness to Pay, and Patient Preferences About Genetic Testing and Subsequent Risk Management for Cancer Prevention

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Abstract

Knowledge, attitudes, and patient preferences about genetic testing and subsequent risk management for cancer prevention among average risk populations are understudied, especially among Hispanics. This study was to assess these items by conducting an in-person survey in this understudied population. We conducted in-person surveys using a self-administered, structured questionnaire among young women in 2017. Survey questions were adapted from other validated surveys. This study had 677 participants in the final analyses. Data were collected in 2017 and analyzed in 2018 and 2019. Participants had little knowledge about genes or breast cancer risk, but most felt that genetic testing for cancer prevention is “a good idea” (87.0%), “a reassuring idea” (84.0%), and that “everyone should get the test” (87.7%). Most (64.0%) of these women would pay up to $25 for the test, 29.3% would pay $25–$500, and < 10% would pay more than $500 for the test. When asked about a hypothetical scenario of high breast cancer risk, 34.2% Hispanics and 24.5% non-Hispanics would choose chemoprevention. Women would be less likely to choose risk reduction procedures, such as mastectomy (19.6% among Hispanics and 15.1% among non-Hispanics) and salpingo-oophorectomy (11.8% among Hispanics and 10.7% among non-Hispanics). In this low-income, mostly Hispanic population, knowledge about genetic testing and cancer risk is poor, but most have positive opinions about genetic testing for cancer prevention. However, their strong preference for chemoprevention and lesser preference for prophylactic surgeries in a hypothetical scenario underscore the importance of genetic counseling and education.

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Availability of Data and Material

Data and material are available upon request to the corresponding author, Dr. Fangjian Guo (faguo@utmb.edu).

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Funding

Dr. Guo is currently supported by the National Cancer Institute of the National Institutes of Health under Award Number K07CA222343. Dr. Guo was and Dr. Fuchs is currently supported by a research career development award (K12HD052023: Building Interdisciplinary Research Careers in Women’s Health Program–BIRCWH; Berenson, PI) from the Office of Research on Women’s Health (ORWH) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH). Drs. Cofie and Brown were postdoctoral fellows supported by an institutional training grant (National Research Service Award T32HD055163, Berenson, PI) from the NICHD at the NIH. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

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Authors and Affiliations

  1. Department of Obstetrics & Gynecology, The University of Texas Medical Branch at Galveston, 301 University Blvd., Galveston, TX, 77555-0587, USA

    Fangjian Guo, Jacqueline M. Hirth, Erika L. Fuchs, Veronica Brown & Abbey B. Berenson

  2. Center for Interdisciplinary Research in Women’s Health, The University of Texas Medical Branch at Galveston, 301 University Blvd., Galveston, TX, 77555-0587, USA

    Fangjian Guo, Jacqueline M. Hirth, Erika L. Fuchs, Veronica Brown, Yong-Fang Kuo & Abbey B. Berenson

  3. Department of Health Education and Promotion, East Carolina University, Greenville, NC, USA

    Leslie E. Cofie

  4. Office of Biostatistics, Department of Preventive Medicine and Community Health, The University of Texas Medical Branch, Galveston, TX, USA

    Yong-Fang Kuo

  5. Institute for Translational Science, The University of Texas Medical Branch, Galveston, TX, USA

    Yong-Fang Kuo

  6. Center for Health Promotion and Prevention Research, School of Public Health, University of Texas Health Science Center at Houston, Houston, TX, USA

    Maria E. Fernandez

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  1. Fangjian Guo
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Contributions

FG: study concept, analysis and interpretation of data, preparation of manuscript. JH, EF, LE, VB, and AB: study concept and design, interpretation of data, critical revision of manuscript. YK and MF: analysis and interpretation of data, critical revision of manuscript.

Corresponding author

Correspondence to Fangjian Guo.

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Conflict of Interest

The authors declare that they have no conflicts of interest.

Ethics Approval (Include Appropriate Approvals or Waivers)

The Institutional Review Board at The University of Texas Medical Branch approved this study, including a waiver of written consent.

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Oral consent from the participants was obtained.

Code Availability (Software Application or Custom Code)

Code is available upon request to the corresponding author, Dr. Fangjian Guo (faguo@utmb.edu).

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The sponsors had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.

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Guo, F., Hirth, J.M., Fuchs, E.L. et al. Knowledge, Attitudes, Willingness to Pay, and Patient Preferences About Genetic Testing and Subsequent Risk Management for Cancer Prevention. J Canc Educ 37, 362–369 (2022). https://doi.org/10.1007/s13187-020-01823-0

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