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Grant Details

Grant Number: 5R01CA181241-03 Interpret this number
Primary Investigator: Hay, Jennifer
Organization: Sloan-Kettering Inst Can Research
Project Title: Personalized Genomic Testing for Melanoma: Maximizing Personal Utility and Reach
Fiscal Year: 2016


DESCRIPTION (provided by applicant): Currently little translational genomic research exists to guide the availability, comprehension, and appropriate uptake of personalized genomics in diverse, general population subgroups that stand to benefit from it in the coming years. The Multiplex Study led by the National Human Genome Research Institute (NHGRI) developed an Internet offer of genomic testing and risk feedback for common diseases, including the melanocortin receptor gene (MC1R) for melanoma risk, that was highly comprehensible, accurately interpreted, and did not increase distress in a primary care population. Melanoma skin cancers are preventable, curable, common in the general population, and disproportionately increasing in Hispanics. Higher risk variants in MC1R are present in about 50% of the population, interact with sun exposure, and confer 2-3 fold melanoma risk in the general population - even darker skin populations - thus feedback regarding MC1R risk status is a potential vehicle to raise risk awareness and protective behavior in the general population. We propose a randomized controlled trial examining Internet presentation of the risks and benefits of personalized genomic testing for melanoma (PGT-M) via MC1R testing (N=885, randomized 6:1 PGT-M versus waiting list control offered testing after outcome assessments, balanced across Hispanic versus Non-Hispanic ethnicity, n=750 in PGT-M arm; n=135 in control arm) comparing personal utility and reach in a general population cohort in Albuquerque New Mexico, where there is year-round sun exposure. Aim I will examine the personal utility of PGT-M in terms of short-term (three month) sun protection, skin screening (i.e., behaviors), communication, melanoma threat and control beliefs (i.e., putative mediators of behavior change). We hypothesize that behaviors and putative mediators will be higher in those who test compared to those who decline testing. Aim 1a will examine potential unintended consequences of testing among those who receive average risk PGT-M findings, examining predictors of sun protection at three months as the outcome. These findings will be used to develop messages for groups that receive average risk feedback. Aim II will compare rates of reach of PGT-M in Hispanic versus Non-Hispanics in terms of consideration of the pros and cons of testing and registration of PGT-M decision. We hypothesize that Hispanics will show reduced reach, but that levels of health literacy, health system distrust, and sociocultural factors (cancer fatalism, family health orientation, skin cancer misconceptions) will explain differences in reach between Hispanics and Non- Hispanics, and provide guidance for future PGT-M modifications for Hispanics. Aim III will examine PGT-M feedback comprehension, recall, satisfaction, and cancer-related distress in those who undergo testing, and whether these outcomes differ by ethnicity (Hispanic versus Non-Hispanic) or sociocultural or demographic factors. The current study will be the first to use the established Multiplex invitation for skin cancer genetic risk testing to examine behavioral outcomes, and the first to use Multiplex to engage a Hispanic population - neither was addressed in the original Multiplex Study. The study will have important implications for personalized genomics in the melanoma context, and will be broadly applicable as a model for delivery of personalized genomic feedback for other conditions, as well. PHS 398/2590 (Rev. 06/09) Page Continuation Format Page


Exploring the role of cancer fatalism and engagement with skin cancer genetic information in diverse primary care patients.
Authors: Hay J.L. , Wu Y. , Schofield E. , Kaphingst K. , Sussman A.L. , Guest D.D. , Hunley K. , Li Y. , Buller D. , Berwick M. .
Source: Psycho-oncology, 2024 Apr; 33(4), p. e6331.
PMID: 38546209
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Effect of Superstitious Beliefs and Risk Intuitions on Genetic Test Decisions.
Authors: Riley K.E. , Sussman A.L. , Schofield E. , Guest D.D. , Dailey Y.T. , Schwartz M.R. , Buller D.B. , Hunley K. , Kaphingst K.A. , Berwick M. , et al. .
Source: Medical decision making : an international journal of the Society for Medical Decision Making, 2022 Apr; 42(3), p. 398-403.
EPub date: 2021-08-28.
PMID: 34455851
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Comprehension of skin cancer genetic risk feedback in primary care patients.
Authors: Khan E. , Kaphingst K.A. , Meyer White K. , Sussman A. , Guest D. , Schofield E. , Dailey Y.T. , Robers E. , Schwartz M.R. , Li Y. , et al. .
Source: Journal of community genetics, 2022 Feb; 13(1), p. 113-119.
EPub date: 2021-11-19.
PMID: 34797550
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Behavioral and Psychological Outcomes Associated with Skin Cancer Genetic Testing in Albuquerque Primary Care.
Authors: Hay J.L. , Kaphingst K.A. , Buller D. , Schofield E. , Meyer White K. , Sussman A. , Guest D. , Dailey Y.T. , Robers E. , Schwartz M.R. , et al. .
Source: Cancers, 2021-08-12; 13(16), .
EPub date: 2021-08-12.
PMID: 34439206
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"Let's Talk about Skin Cancer": Examining Association between Family Communication about Skin Cancer, Perceived Risk, and Sun Protection Behaviors.
Authors: Banerjee S.C. , Sussman A. , Schofield E. , Guest D.D. , Dailey Y.S. , Schwartz M.R. , Buller D.B. , Hunley K. , Kaphingst K.A. , Berwick M. , et al. .
Source: Journal of health communication, 2021-08-03; 26(8), p. 576-585.
EPub date: 2021-10-06.
PMID: 34612176
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Effects of health literacy skills, educational attainment, and level of melanoma risk on responses to personalized genomic testing.
Authors: Kaphingst K.A. , Khan E. , White K.M. , Sussman A. , Guest D. , Schofield E. , Dailey Y.T. , Robers E. , Schwartz M.R. , Li Y. , et al. .
Source: Patient education and counseling, 2021 Jan; 104(1), p. 12-19.
EPub date: 2020-08-01.
PMID: 32773237
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MC1R Variation in a New Mexico Population.
Authors: White K.A.M. , Dailey Y.T. , Guest D.D. , Zielaskowski K. , Robers E. , Sussman A. , Hunley K. , Hughes C.R. , Schwartz M.R. , Kaphingst K.A. , et al. .
Source: Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 2019 Nov; 28(11), p. 1853-1856.
EPub date: 2019-09-05.
PMID: 31488411
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Psychosocial and Cultural Determinants of Interest and Uptake of Skin Cancer Genetic Testing in Diverse Primary Care.
Authors: Hay J.L. , Meyer White K. , Sussman A. , Kaphingst K. , Guest D. , Schofield E. , Dailey Y.T. , Robers E. , Schwartz M.R. , Zielaskowski K. , et al. .
Source: Public health genomics, 2019; 22(1-2), p. 58-68.
EPub date: 2019-08-22.
PMID: 31437847
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Interest and Uptake of MC1R Testing for Melanoma Risk in a Diverse Primary Care Population: A Randomized Clinical Trial.
Authors: Hay J.L. , Zielaskowski K. , Meyer White K. , Kaphingst K. , Robers E. , Guest D. , Sussman A. , Talamantes Y. , Schwartz M. , Rodríguez V.M. , et al. .
Source: JAMA dermatology, 2018-06-01; 154(6), p. 684-693.
PMID: 29801061
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Marshaling the Translational Potential of MC1R for Precision Risk Assessment of Melanoma.
Authors: Kanetsky P.A. , Hay J.L. .
Source: Cancer prevention research (Philadelphia, Pa.), 2018 Mar; 11(3), p. 121-124.
EPub date: 2017-12-15.
PMID: 29246956
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Tanning and Teens: Is Indoor Exposure the Tip of the Iceberg?
Authors: Hay J.L. , Riley K.E. , Geller A.C. .
Source: Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 2017 Aug; 26(8), p. 1170-1174.
PMID: 28765337
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Implementing an Internet-Delivered Skin Cancer Genetic Testing Intervention to Improve Sun Protection Behavior in a Diverse Population: Protocol for a Randomized Controlled Trial.
Authors: Hay J.L. , Berwick M. , Zielaskowski K. , White K.A. , Rodríguez V.M. , Robers E. , Guest D.D. , Sussman A. , Talamantes Y. , Schwartz M.R. , et al. .
Source: JMIR research protocols, 2017-04-25; 6(4), p. e52.
EPub date: 2017-04-25.
PMID: 28442450
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Invited Commentary: Indoor Tanning-A Melanoma Accelerator?
Authors: Berwick M. , Doré J.F. .
Source: American journal of epidemiology, 2017-02-01; 185(3), p. 157-159.
PMID: 28077360
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Translation and adaptation of skin cancer genomic risk education materials for implementation in primary care.
Authors: Rodríguez V.M. , Robers E. , Zielaskowski K. , Javier González C. , Hunley K. , Kaphingst K.A. , Guest D.D. , Sussman A. , Meyer White K.A. , Schwartz M.R. , et al. .
Source: Journal of community genetics, 2017 Jan; 8(1), p. 53-63.
EPub date: 2016-12-06.
PMID: 27924449
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Reply to S. Lehrer et al and J.C. Dowdy and R.M. Sayre.
Authors: Berwick M. .
Source: Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 2016-02-20; 34(6), p. 638-9.
EPub date: 2016-01-04.
PMID: 26729438
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