Factors Impacting Intent to Share Multigenic Cancer Testing Results in a Community Hospital Setting
Multi-gene, multi-cancer, hereditary cancer risk screenings may be useful in cancer prevention and treatment, not only for cancer patients but also for patients' family members. If genetic cancer screening is to have the widest possible benefit, it must be extended into diverse cancer care sett...
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Published in: | Journal of personalized medicine Vol. 14; no. 9; p. 987 |
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Abstract | Multi-gene, multi-cancer, hereditary cancer risk screenings may be useful in cancer prevention and treatment, not only for cancer patients but also for patients' family members. If genetic cancer screening is to have the widest possible benefit, it must be extended into diverse cancer care settings that serve diverse patient communities, providing cancer patients and their relatives with individualized cancer risk evaluations. Little research, to date, has examined the impact of extending multigenic cancer screening into diverse settings. Without empirical data characterizing the support needs of cancer patients and their family members, we may not adequately satisfy the needs of all patients and risk exacerbating existing disparities in cancer care and outcomes.
We examined patient perspectives on the sharing of genetic results with at-risk family members by surveying a racially diverse sample of cancer patients receiving a multi-gene, multi-cancer risk screen in a community hospital setting.
In a survey of 230 cancer patients, we found that intent to share results with family members was high but varied across family member types. More respondents planned to disclose results to at least one sister (82.5%) compared to at least one brother (73.1%). Over one-fourth of participants (27.4%) were either uncertain about sharing or intended to withhold their genomic screening results from at least one at-risk family member eligible for cascade testing. Participants were more likely to withhold their results from a sibling than from a child. Furthermore, intent to share across all family member types was lower if probands failed to identify at least one benefit to sharing.
Understanding factors associated with decisions to share results with at-risk relatives in diverse patient populations can help clinicians support cascade genetic cancer screenings in diverse communities and settings. |
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AbstractList | Background/Objectives: Multi-gene, multi-cancer, hereditary cancer risk screenings may be useful in cancer prevention and treatment, not only for cancer patients but also for patients’ family members. If genetic cancer screening is to have the widest possible benefit, it must be extended into diverse cancer care settings that serve diverse patient communities, providing cancer patients and their relatives with individualized cancer risk evaluations. Little research, to date, has examined the impact of extending multigenic cancer screening into diverse settings. Without empirical data characterizing the support needs of cancer patients and their family members, we may not adequately satisfy the needs of all patients and risk exacerbating existing disparities in cancer care and outcomes. Methods: We examined patient perspectives on the sharing of genetic results with at-risk family members by surveying a racially diverse sample of cancer patients receiving a multi-gene, multi-cancer risk screen in a community hospital setting. Results: In a survey of 230 cancer patients, we found that intent to share results with family members was high but varied across family member types. More respondents planned to disclose results to at least one sister (82.5%) compared to at least one brother (73.1%). Over one-fourth of participants (27.4%) were either uncertain about sharing or intended to withhold their genomic screening results from at least one at-risk family member eligible for cascade testing. Participants were more likely to withhold their results from a sibling than from a child. Furthermore, intent to share across all family member types was lower if probands failed to identify at least one benefit to sharing. Conclusions: Understanding factors associated with decisions to share results with at-risk relatives in diverse patient populations can help clinicians support cascade genetic cancer screenings in diverse communities and settings. Multi-gene, multi-cancer, hereditary cancer risk screenings may be useful in cancer prevention and treatment, not only for cancer patients but also for patients' family members. If genetic cancer screening is to have the widest possible benefit, it must be extended into diverse cancer care settings that serve diverse patient communities, providing cancer patients and their relatives with individualized cancer risk evaluations. Little research, to date, has examined the impact of extending multigenic cancer screening into diverse settings. Without empirical data characterizing the support needs of cancer patients and their family members, we may not adequately satisfy the needs of all patients and risk exacerbating existing disparities in cancer care and outcomes. We examined patient perspectives on the sharing of genetic results with at-risk family members by surveying a racially diverse sample of cancer patients receiving a multi-gene, multi-cancer risk screen in a community hospital setting. In a survey of 230 cancer patients, we found that intent to share results with family members was high but varied across family member types. More respondents planned to disclose results to at least one sister (82.5%) compared to at least one brother (73.1%). Over one-fourth of participants (27.4%) were either uncertain about sharing or intended to withhold their genomic screening results from at least one at-risk family member eligible for cascade testing. Participants were more likely to withhold their results from a sibling than from a child. Furthermore, intent to share across all family member types was lower if probands failed to identify at least one benefit to sharing. Understanding factors associated with decisions to share results with at-risk relatives in diverse patient populations can help clinicians support cascade genetic cancer screenings in diverse communities and settings. Multi-gene, multi-cancer, hereditary cancer risk screenings may be useful in cancer prevention and treatment, not only for cancer patients but also for patients' family members. If genetic cancer screening is to have the widest possible benefit, it must be extended into diverse cancer care settings that serve diverse patient communities, providing cancer patients and their relatives with individualized cancer risk evaluations. Little research, to date, has examined the impact of extending multigenic cancer screening into diverse settings. Without empirical data characterizing the support needs of cancer patients and their family members, we may not adequately satisfy the needs of all patients and risk exacerbating existing disparities in cancer care and outcomes.BACKGROUND/OBJECTIVESMulti-gene, multi-cancer, hereditary cancer risk screenings may be useful in cancer prevention and treatment, not only for cancer patients but also for patients' family members. If genetic cancer screening is to have the widest possible benefit, it must be extended into diverse cancer care settings that serve diverse patient communities, providing cancer patients and their relatives with individualized cancer risk evaluations. Little research, to date, has examined the impact of extending multigenic cancer screening into diverse settings. Without empirical data characterizing the support needs of cancer patients and their family members, we may not adequately satisfy the needs of all patients and risk exacerbating existing disparities in cancer care and outcomes.We examined patient perspectives on the sharing of genetic results with at-risk family members by surveying a racially diverse sample of cancer patients receiving a multi-gene, multi-cancer risk screen in a community hospital setting.METHODSWe examined patient perspectives on the sharing of genetic results with at-risk family members by surveying a racially diverse sample of cancer patients receiving a multi-gene, multi-cancer risk screen in a community hospital setting.In a survey of 230 cancer patients, we found that intent to share results with family members was high but varied across family member types. More respondents planned to disclose results to at least one sister (82.5%) compared to at least one brother (73.1%). Over one-fourth of participants (27.4%) were either uncertain about sharing or intended to withhold their genomic screening results from at least one at-risk family member eligible for cascade testing. Participants were more likely to withhold their results from a sibling than from a child. Furthermore, intent to share across all family member types was lower if probands failed to identify at least one benefit to sharing.RESULTSIn a survey of 230 cancer patients, we found that intent to share results with family members was high but varied across family member types. More respondents planned to disclose results to at least one sister (82.5%) compared to at least one brother (73.1%). Over one-fourth of participants (27.4%) were either uncertain about sharing or intended to withhold their genomic screening results from at least one at-risk family member eligible for cascade testing. Participants were more likely to withhold their results from a sibling than from a child. Furthermore, intent to share across all family member types was lower if probands failed to identify at least one benefit to sharing.Understanding factors associated with decisions to share results with at-risk relatives in diverse patient populations can help clinicians support cascade genetic cancer screenings in diverse communities and settings.CONCLUSIONSUnderstanding factors associated with decisions to share results with at-risk relatives in diverse patient populations can help clinicians support cascade genetic cancer screenings in diverse communities and settings. |
Audience | Academic |
Author | Siddiqui, Wamia Samadder, N Jewel Sharp, Richard R Jones, Jeremy C Pacyna, Joel E Phelan, Sean M |
AuthorAffiliation | 4 Division of Gastroenterology and Hepatology, Department of Medicine, Mayo Clinic, Phoenix, AZ 85054, USA 1 Biomedical Ethics Research Program, Mayo Clinic, Rochester, MN 55905, USA 2 Division of Healthcare Delivery Research, Mayo Clinic, Rochester, MN 55905, USA 7 Department of Quantitative Health Sciences, Mayo Clinic, Rochester, MN 55905, USA 3 Division of Hematology and Oncology, Mayo Clinic, Jacksonville, FL 32224, USA 5 Department of Clinical Genomics, Mayo Clinic, Phoenix, AZ 85054, USA 6 Center for Individualized Medicine, Mayo Clinic, Phoenix, AZ 85054, USA |
AuthorAffiliation_xml | – name: 3 Division of Hematology and Oncology, Mayo Clinic, Jacksonville, FL 32224, USA – name: 7 Department of Quantitative Health Sciences, Mayo Clinic, Rochester, MN 55905, USA – name: 4 Division of Gastroenterology and Hepatology, Department of Medicine, Mayo Clinic, Phoenix, AZ 85054, USA – name: 1 Biomedical Ethics Research Program, Mayo Clinic, Rochester, MN 55905, USA – name: 5 Department of Clinical Genomics, Mayo Clinic, Phoenix, AZ 85054, USA – name: 6 Center for Individualized Medicine, Mayo Clinic, Phoenix, AZ 85054, USA – name: 2 Division of Healthcare Delivery Research, Mayo Clinic, Rochester, MN 55905, USA |
Author_xml | – sequence: 1 givenname: Wamia orcidid: 0000-0001-7186-2642 surname: Siddiqui fullname: Siddiqui, Wamia organization: Biomedical Ethics Research Program, Mayo Clinic, Rochester, MN 55905, USA – sequence: 2 givenname: Joel E orcidid: 0000-0002-3103-7805 surname: Pacyna fullname: Pacyna, Joel E organization: Biomedical Ethics Research Program, Mayo Clinic, Rochester, MN 55905, USA – sequence: 3 givenname: Sean M surname: Phelan fullname: Phelan, Sean M organization: Division of Healthcare Delivery Research, Mayo Clinic, Rochester, MN 55905, USA – sequence: 4 givenname: Jeremy C orcidid: 0000-0001-7793-9540 surname: Jones fullname: Jones, Jeremy C organization: Division of Hematology and Oncology, Mayo Clinic, Jacksonville, FL 32224, USA – sequence: 5 givenname: N Jewel surname: Samadder fullname: Samadder, N Jewel organization: Center for Individualized Medicine, Mayo Clinic, Phoenix, AZ 85054, USA – sequence: 6 givenname: Richard R orcidid: 0000-0001-5441-2084 surname: Sharp fullname: Sharp, Richard R organization: Department of Quantitative Health Sciences, Mayo Clinic, Rochester, MN 55905, USA |
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Keywords | genetic counseling cascade screening multigenic panel testing health disparities family communication |
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Snippet | Multi-gene, multi-cancer, hereditary cancer risk screenings may be useful in cancer prevention and treatment, not only for cancer patients but also for... Background/Objectives: Multi-gene, multi-cancer, hereditary cancer risk screenings may be useful in cancer prevention and treatment, not only for cancer... |
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SubjectTerms | Cancer Cancer screening Data collection Diagnosis Family medical history Genetic aspects Genetic counseling Genetic diversity Genetic testing Health care policy Health insurance Hospitals Mammography Medical diagnosis Medical screening Medical tests Oncology, Experimental Patients Polls & surveys Population genetics Prevention Web portals |
Title | Factors Impacting Intent to Share Multigenic Cancer Testing Results in a Community Hospital Setting |
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