Pub Date : 2024-01-01Epub Date: 2023-12-21DOI: 10.1159/000535667
Stephanie Best, Megan C Roberts, Natalie Taylor
{"title":"We Need to Stand Together on the Shoulders of Giants: Consolidating Effective Approaches for Translating Genomics into Practice with Implementation Science.","authors":"Stephanie Best, Megan C Roberts, Natalie Taylor","doi":"10.1159/000535667","DOIUrl":"10.1159/000535667","url":null,"abstract":"","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138832622","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-01-01Epub Date: 2023-12-21DOI: 10.1159/000535942
Brandy M Fox, Daphne Oluwaseun Martschenko
{"title":"Placing Publics in Public Health Genomics.","authors":"Brandy M Fox, Daphne Oluwaseun Martschenko","doi":"10.1159/000535942","DOIUrl":"10.1159/000535942","url":null,"abstract":"","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11007191/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138832621","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-01-01Epub Date: 2024-02-21DOI: 10.1159/000535724
Bowen Xiao, Joyce Yan, Robin Z Hayeems
Introduction: Noninvasive prenatal testing (NIPT) can be used to detect fetal chromosomal abnormalities early in pregnancy. As eligibility criteria broaden and screening targets expand, gauging public acceptability of NIPT becomes increasingly important. Leveraging social media as a rich source of public discourse, the purpose of this study was to understand public opinions and attitudes toward NIPT on the social media platform Reddit.
Methods: We applied content and natural language processing techniques (i.e., sentiment analysis) to textual data collected from 4 Reddit communities focusing on the NIPT content posted from September 2012 to September 2022 (367 posts and 7,822 comments in total).
Results: Content analysis findings indicated that social media users consider NIPT to be worthwhile. Reasons NIPT was perceived to be not worthwhile related to unwanted anxiety, and the fact that NIPT results would not change anything about their approach to pregnancy were also expressed. The sentiment analysis identified more positive than negative emotions; the mean sentiment scores ranged from 0.48 to 1.22, depending on the specific Lexicon used. Specific emotions (i.e., trust, fear) were also identified.
Conclusion: Our novel approach to understanding public perception and attitudes toward NIPT yielded results that are consistent with conventional patient-oriented research methods. These findings may not only contribute to ongoing improvements in prenatal patient care, research, and policy but also indicate that sentiment analysis applied to social media data can serve as a suitable means to assess public acceptability of NIPT, particularly as public dialogue on this topic increases over time.
{"title":"Public Opinions and Attitudes toward Noninvasive Prenatal Testing on Reddit: Content and Sentiment Analysis.","authors":"Bowen Xiao, Joyce Yan, Robin Z Hayeems","doi":"10.1159/000535724","DOIUrl":"10.1159/000535724","url":null,"abstract":"<p><strong>Introduction: </strong>Noninvasive prenatal testing (NIPT) can be used to detect fetal chromosomal abnormalities early in pregnancy. As eligibility criteria broaden and screening targets expand, gauging public acceptability of NIPT becomes increasingly important. Leveraging social media as a rich source of public discourse, the purpose of this study was to understand public opinions and attitudes toward NIPT on the social media platform Reddit.</p><p><strong>Methods: </strong>We applied content and natural language processing techniques (i.e., sentiment analysis) to textual data collected from 4 Reddit communities focusing on the NIPT content posted from September 2012 to September 2022 (367 posts and 7,822 comments in total).</p><p><strong>Results: </strong>Content analysis findings indicated that social media users consider NIPT to be worthwhile. Reasons NIPT was perceived to be not worthwhile related to unwanted anxiety, and the fact that NIPT results would not change anything about their approach to pregnancy were also expressed. The sentiment analysis identified more positive than negative emotions; the mean sentiment scores ranged from 0.48 to 1.22, depending on the specific Lexicon used. Specific emotions (i.e., trust, fear) were also identified.</p><p><strong>Conclusion: </strong>Our novel approach to understanding public perception and attitudes toward NIPT yielded results that are consistent with conventional patient-oriented research methods. These findings may not only contribute to ongoing improvements in prenatal patient care, research, and policy but also indicate that sentiment analysis applied to social media data can serve as a suitable means to assess public acceptability of NIPT, particularly as public dialogue on this topic increases over time.</p>","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139933850","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-01-01Epub Date: 2024-06-22DOI: 10.1159/000539987
Adam H Buchanan, Alanna Kulchak Rahm, Amy C Sturm
{"title":"A New Agenda for Implementing Population Genomic Screening.","authors":"Adam H Buchanan, Alanna Kulchak Rahm, Amy C Sturm","doi":"10.1159/000539987","DOIUrl":"10.1159/000539987","url":null,"abstract":"","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141460303","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-01-01Epub Date: 2024-08-05DOI: 10.1159/000540341
Young-Rock Hong, Ruixuan Wang, Guanming Chen, Mishal Khan, Susan Vadaparampil, Jiang Bian, Thomas J George, Dejana Braithwaite
Introduction: Genetic tests, including germline and tumor (somatic) testing, can optimize the clinical care and outcomes for cancer patients and their family members. However, evidence on cancer patients' use of genetic testing and discussions about it with healthcare providers is limited.
Methods: Study participants included cancer survivors aged 18 or older, drawn from the 2021 Health Information and National Trends Survey (HINTS)-Surveillance, Epidemiology, and End Results (SEER) linked database, which comprises three US cancer registries: Iowa, New Mexico, and the Greater Bay Area. Sociodemographic factors (e.g., age, sex, income, education) at the time of the survey and clinical characteristics (e.g., cancer site, stage) at the time of diagnosis were compared based on self-reported genetic testing status and provider discussions, using survey design-adjusted analysis.
Results: The weighted study sample comprised 415,978 cancer survivors with a mean age of 70.5 years at the time of the survey. Overall, 17.0% reported having germline testing, 8.5% having tumor testing, and 8.6% discussing tumor testing with their healthcare providers. Higher proportions of germline genetic testing were observed among survivors under age 65 at the time of the survey, females, holding college degrees, and with private insurance coverage compared to their respective counterparts - males, aged 65 or above when surveyed, with lower educational attainment, and with public insurance or uninsured. The proportion of those who reported tumor testing was greater for those diagnosed in recent years (2015-2017 vs. before 2002). Regarding clinical characteristics, survivors with ovarian and breast cancers had a 7.0-36.4% higher prevalence of both testing compared to those with other cancer types lacking germline indication. More cancer survivors diagnosed at distant stages (vs. regional) or between 2015 and 2017 (vs. 2003-2010) reported having provider discussions about tumor testing.
Conclusion: Findings showed that the highest reports of germline testing were among young female cancer survivors and those with higher education and private insurance. Survivors diagnosed in recent years or with advanced-stage disease were more likely to report discussing tumor testing with providers. Further research is warranted to better understand the barriers and educational needs of cancer patients, caregivers, and providers to optimize genetic testing strategies.
{"title":"Sociodemographic and Clinical Characteristics Associated with Genetic Testing among Cancer Survivors: Evidence from Three Cancer Registries.","authors":"Young-Rock Hong, Ruixuan Wang, Guanming Chen, Mishal Khan, Susan Vadaparampil, Jiang Bian, Thomas J George, Dejana Braithwaite","doi":"10.1159/000540341","DOIUrl":"10.1159/000540341","url":null,"abstract":"<p><strong>Introduction: </strong>Genetic tests, including germline and tumor (somatic) testing, can optimize the clinical care and outcomes for cancer patients and their family members. However, evidence on cancer patients' use of genetic testing and discussions about it with healthcare providers is limited.</p><p><strong>Methods: </strong>Study participants included cancer survivors aged 18 or older, drawn from the 2021 Health Information and National Trends Survey (HINTS)-Surveillance, Epidemiology, and End Results (SEER) linked database, which comprises three US cancer registries: Iowa, New Mexico, and the Greater Bay Area. Sociodemographic factors (e.g., age, sex, income, education) at the time of the survey and clinical characteristics (e.g., cancer site, stage) at the time of diagnosis were compared based on self-reported genetic testing status and provider discussions, using survey design-adjusted analysis.</p><p><strong>Results: </strong>The weighted study sample comprised 415,978 cancer survivors with a mean age of 70.5 years at the time of the survey. Overall, 17.0% reported having germline testing, 8.5% having tumor testing, and 8.6% discussing tumor testing with their healthcare providers. Higher proportions of germline genetic testing were observed among survivors under age 65 at the time of the survey, females, holding college degrees, and with private insurance coverage compared to their respective counterparts - males, aged 65 or above when surveyed, with lower educational attainment, and with public insurance or uninsured. The proportion of those who reported tumor testing was greater for those diagnosed in recent years (2015-2017 vs. before 2002). Regarding clinical characteristics, survivors with ovarian and breast cancers had a 7.0-36.4% higher prevalence of both testing compared to those with other cancer types lacking germline indication. More cancer survivors diagnosed at distant stages (vs. regional) or between 2015 and 2017 (vs. 2003-2010) reported having provider discussions about tumor testing.</p><p><strong>Conclusion: </strong>Findings showed that the highest reports of germline testing were among young female cancer survivors and those with higher education and private insurance. Survivors diagnosed in recent years or with advanced-stage disease were more likely to report discussing tumor testing with providers. Further research is warranted to better understand the barriers and educational needs of cancer patients, caregivers, and providers to optimize genetic testing strategies.</p>","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141894759","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
F. Causio, F. Beccia, I. Hoxhaj, Hui-Yao Huang, Lily Wang, Wenya Wang, S. Farina, T. Osti, C. Savoia, C. Cadeddu, Walter Ricciardi, S. Boccia
Introduction Over the last decade, the emergence and spread of Personalised Medicine (PM) has defined a substantial revolution in healthcare. In principle, healthcare system sustainability is challenged by the investments required for research and development, as well as the adoption of PM techniques in routine clinical care. The “Integrating China in the International Consortium for Personalised Medicine” (IC2PerMed) EU-funded project aims to integrate China into the “International Consortium for Personalised Medicine” (ICPerMed). IC2PerMed aims to align the EU and China’s research agendas in this field to enable a swift development of approaches in the EU and China with strong leverage upon EU-Chinese collaborations. Methods Within this project, we firstly mapped relevant policies on PM in both the EU and China, then we involved European and Chinese experts in PM in workshops and Delphi Surveys in order to identify relevant priorities for the implementation of PM in sustainable healthcare. Results As a result of this process, we identified nine overarching priorities, each addressing specific aspects of the sustainability of healthcare systems and PM implementation, with the main goal of supporting policymakers in integrating PM approaches in the EU and China. Discussion/conclusion The implementation of PM in health systems is appealing in terms of improved accuracy in diagnostics, treatment and prevention of disease, as well as reduction of the side effects resulting from inefficient use of drugs. Research, development, and implementation of needed techniques require time and resources, that can slow the adoption of PM in healthcare systems. The nine priorities we identified address some of the most critical points, trying to lay the foundations for a comprehensive approach.
{"title":"Integrating China in the International Consortium for Personalised Medicine. A position Paper on Personalised Medicine in Sustainable Healthcare","authors":"F. Causio, F. Beccia, I. Hoxhaj, Hui-Yao Huang, Lily Wang, Wenya Wang, S. Farina, T. Osti, C. Savoia, C. Cadeddu, Walter Ricciardi, S. Boccia","doi":"10.1159/000534010","DOIUrl":"https://doi.org/10.1159/000534010","url":null,"abstract":"Introduction\u0000Over the last decade, the emergence and spread of Personalised Medicine (PM) has defined a substantial revolution in healthcare. In principle, healthcare system sustainability is challenged by the investments required for research and development, as well as the adoption of PM techniques in routine clinical care. The “Integrating China in the International Consortium for Personalised Medicine” (IC2PerMed) EU-funded project aims to integrate China into the “International Consortium for Personalised Medicine” (ICPerMed). IC2PerMed aims to align the EU and China’s research agendas in this field to enable a swift development of approaches in the EU and China with strong leverage upon EU-Chinese collaborations. \u0000Methods\u0000Within this project, we firstly mapped relevant policies on PM in both the EU and China, then we involved European and Chinese experts in PM in workshops and Delphi Surveys in order to identify relevant priorities for the implementation of PM in sustainable healthcare.\u0000Results\u0000As a result of this process, we identified nine overarching priorities, each addressing specific aspects of the sustainability of healthcare systems and PM implementation, with the main goal of supporting policymakers in integrating PM approaches in the EU and China.\u0000Discussion/conclusion\u0000The implementation of PM in health systems is appealing in terms of improved accuracy in diagnostics, treatment and prevention of disease, as well as reduction of the side effects resulting from inefficient use of drugs. Research, development, and implementation of needed techniques require time and resources, that can slow the adoption of PM in healthcare systems. The nine priorities we identified address some of the most critical points, trying to lay the foundations for a comprehensive approach.","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-12-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138594278","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01Epub Date: 2023-09-12DOI: 10.1159/000533968
Kimberly A Kaphingst
{"title":"Future Forecasting for Research and Practice in Genetic Literacy.","authors":"Kimberly A Kaphingst","doi":"10.1159/000533968","DOIUrl":"10.1159/000533968","url":null,"abstract":"","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10614492/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10277624","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01Epub Date: 2023-09-29DOI: 10.1159/000534365
Aurora M Washington, Kimberly Foss, Joan H Krause, Arlene M Davis, Kristine J Kuczynski, Laura V Milko, Jonathan S Berg, Megan C Roberts
{"title":"Consideration of the Beneficiary Inducement Statute on Access to Health Care Systems' Population Genetic Screening Programs.","authors":"Aurora M Washington, Kimberly Foss, Joan H Krause, Arlene M Davis, Kristine J Kuczynski, Laura V Milko, Jonathan S Berg, Megan C Roberts","doi":"10.1159/000534365","DOIUrl":"10.1159/000534365","url":null,"abstract":"","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10619584/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41122587","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01Epub Date: 2023-03-03DOI: 10.1159/000529852
Katrina M Romagnoli, Alanna Kulchak Rahm, Mary Cabell Jonas, Rachel Schwiter, Tracey Klinger, Ilene Ladd, Zachary Salvati, Anna DiNucci, Paula Rae Blasi, Leigh Sheridan, Aaron Scrol, Nora B Henrikson
Introduction: A traceback genetic testing program for ovarian cancer has the potential to identify individuals with hereditary breast and ovarian cancer and their relatives. Successful implementation depends on understanding and addressing the experiences, barriers, and preferences of the people served.
Methods: We conducted a remote, human-centered design research study of people with ovarian, fallopian tube, or peritoneal cancer (probands) and people with a family history of ovarian cancer (relatives) at three integrated health systems between May and September 2021. Participants completed activities to elicit their preferences about ovarian cancer genetic testing messaging and to design their ideal experience receiving an invitation to participate in genetic testing. Interview data were analyzed using a rapid thematic analysis approach.
Results: We interviewed 70 participants and identified five preferred experiences for a traceback program. Participants strongly prefer discussing genetic testing with their doctor but are comfortable discussing with other clinicians. The most highly preferred experience for both probands and relatives was to discuss with a knowledgeable clinician who could answer questions, followed by directed (sent directly to specific people) or passive (shared in a public area) communication. Repeated contact was acceptable for reminders.
Conclusion: Participants were open to receiving information about traceback genetic testing and recognized its value. Participants preferred discussing genetic testing with a trusted clinician. Directed communication was preferable to passive communication. Other valued information included how genetic tests help their family and the cost of genetic testing. These findings are informing traceback cascade genetic testing programs at all three sites.
{"title":"Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems.","authors":"Katrina M Romagnoli, Alanna Kulchak Rahm, Mary Cabell Jonas, Rachel Schwiter, Tracey Klinger, Ilene Ladd, Zachary Salvati, Anna DiNucci, Paula Rae Blasi, Leigh Sheridan, Aaron Scrol, Nora B Henrikson","doi":"10.1159/000529852","DOIUrl":"10.1159/000529852","url":null,"abstract":"<p><strong>Introduction: </strong>A traceback genetic testing program for ovarian cancer has the potential to identify individuals with hereditary breast and ovarian cancer and their relatives. Successful implementation depends on understanding and addressing the experiences, barriers, and preferences of the people served.</p><p><strong>Methods: </strong>We conducted a remote, human-centered design research study of people with ovarian, fallopian tube, or peritoneal cancer (probands) and people with a family history of ovarian cancer (relatives) at three integrated health systems between May and September 2021. Participants completed activities to elicit their preferences about ovarian cancer genetic testing messaging and to design their ideal experience receiving an invitation to participate in genetic testing. Interview data were analyzed using a rapid thematic analysis approach.</p><p><strong>Results: </strong>We interviewed 70 participants and identified five preferred experiences for a traceback program. Participants strongly prefer discussing genetic testing with their doctor but are comfortable discussing with other clinicians. The most highly preferred experience for both probands and relatives was to discuss with a knowledgeable clinician who could answer questions, followed by directed (sent directly to specific people) or passive (shared in a public area) communication. Repeated contact was acceptable for reminders.</p><p><strong>Conclusion: </strong>Participants were open to receiving information about traceback genetic testing and recognized its value. Participants preferred discussing genetic testing with a trusted clinician. Directed communication was preferable to passive communication. Other valued information included how genetic tests help their family and the cost of genetic testing. These findings are informing traceback cascade genetic testing programs at all three sites.</p>","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10475143/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10144622","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Introduction: Though it is well established that genetic information does not produce behavior changes, there are limited data regarding whether genetic counseling can facilitate changes in lifestyle and health behaviors that can result in improved health outcomes.
Methods: To explore this issue, we conducted semi-structured interviews with 8 patients who had lived experience of psychiatric illness and who had received psychiatric genetic counseling (PGC). Using interpretive description, we used a constant comparative approach to data analysis.
Results: Participants talked about how, prior to PGC, they held misconceptions and/or uncertainties about the causes of and protective behaviors associated with mental illness, which caused feelings of guilt, shame, fear, and hopelessness. Participants reported that PGC reframed things in a way that provided them a sense of agency over illness management, allowed a greater acceptance of illness, and provided release from some of the negative emotions associated with their initial framing of their illness, which seemed to be related to the self-reported increase in engagement in illness management behaviors and consequently improved mental health outcomes.
Conclusion: This exploratory study provides evidence to support the idea that through addressing emotions associated with perceived cause of illness and facilitating understanding of etiology and risk-reducing strategies, PGC may lead to an increase in behaviors, which protect mental health.
{"title":"Behavioral Changes after Psychiatric Genetic Counseling: An Exploratory Study.","authors":"Stephanie Huynh, Emily Morris, Angela Inglis, Jehannine Austin","doi":"10.1159/000530366","DOIUrl":"10.1159/000530366","url":null,"abstract":"<p><strong>Introduction: </strong>Though it is well established that genetic information does not produce behavior changes, there are limited data regarding whether genetic counseling can facilitate changes in lifestyle and health behaviors that can result in improved health outcomes.</p><p><strong>Methods: </strong>To explore this issue, we conducted semi-structured interviews with 8 patients who had lived experience of psychiatric illness and who had received psychiatric genetic counseling (PGC). Using interpretive description, we used a constant comparative approach to data analysis.</p><p><strong>Results: </strong>Participants talked about how, prior to PGC, they held misconceptions and/or uncertainties about the causes of and protective behaviors associated with mental illness, which caused feelings of guilt, shame, fear, and hopelessness. Participants reported that PGC reframed things in a way that provided them a sense of agency over illness management, allowed a greater acceptance of illness, and provided release from some of the negative emotions associated with their initial framing of their illness, which seemed to be related to the self-reported increase in engagement in illness management behaviors and consequently improved mental health outcomes.</p><p><strong>Conclusion: </strong>This exploratory study provides evidence to support the idea that through addressing emotions associated with perceived cause of illness and facilitating understanding of etiology and risk-reducing strategies, PGC may lead to an increase in behaviors, which protect mental health.</p>","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9307224","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}