Value of Genetic Incidental Findings Related to Cancer Causing Genes

Erin Rothwell^1, , Sapna Kaul², Kevin J. Boyle³ and Bob Wong⁴

¹Division of Medical Ethics and Humanities, College of Nursing, University of Utah

²Department of Preventive Medicine and Community Health, University of Texas Medical Branch

³Program in Real Estate, Virginia Tech

⁴College of Nursing, University of Utah

Cite this paper:
Erin Rothwell, Sapna Kaul, Kevin J. Boyle and Bob Wong. Value of Genetic Incidental Findings Related to Cancer Causing Genes. American Journal of Cancer Prevention. 2016; 4(3):44-50. doi: 10.12691/ajcp-4-3-3

Abstract

Purpose: Generation of incidental findings (IFs) from whole genome and exome sequencing raise several questions about the return of IFs to donors in the research setting. One important aspect that is highly understudied is whether individuals from the general public value the return of IFs and what individual characteristics are associated with these values. Methods: We used a willingness to pay (WTP) survey—an economic tool—to evaluate the values individuals place on the information provided by a genetic counseling consultation providing IFs for cancer causing genes. An online survey was administered through ResearchMatch, a national registry, in June 2015. Along with demographics, attitudinal and health-related questions, survey respondents were asked WTP questions to reveal the values for IFs information specifically for cancer causing genes. Results: The average WTP of 94 respondents was $161 (95% CI: $132-202) for a one-time IF consultation for cancer causing genes. Income was significantly associated with WTP. Respondents with annual household incomes ≥$80,000, on average, were WTP $75 more for a counseling consultation in comparison to those with incomes ≤$39,999 raising concerns for the ability to pay for IFs. The strongest predictor of WTP was respondents’ perceptions regarding the importance of genetic health information for preventing diseases. Conclusions: Understanding individuals’ value of information on IFs can help guide policy and normative recommendations. Future research should include individual preferences for return of IFs, explore if return of IFs may be harmful, and evaluate how it may impact subsequent treatment, health-related behaviors, non-health-related behaviors, and healthcare disparity. Implications for Cancer Survivors: This research provides insight into how individuals value identification of genetic related risk for cancer. This has important implications for those who may want to know if they are susceptible for re-occurrence risk and risk of family members.

Keywords:
incidental findings sequencing willingness to pay return of results genetics

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