Journal of Genetic Counseling最新文献

{"title":"Research methods in genetic counseling: Statistical approaches and resources","authors":"Benjamin M. Helm,&nbsp;Leah Wetherill","doi":"10.1002/jgc4.70042","DOIUrl":"https://doi.org/10.1002/jgc4.70042","url":null,"abstract":"<p>The continuing evolution of the genetic counseling profession necessitates an ongoing reflection on the perceived validity and role of our research in the larger systems we operate in. Despite our need for an analytically inclined professional culture and decision-making process, many genetic counselors may not have the training or support needed to ensure such rigor. In this special issue of the <i>Journal of Genetic Counseling</i>, authors were tasked with providing methodological foundations for genetic counselors navigating various phases of research, to improve the quality of our research output and to incorporate our findings into decision-making in healthcare and non-healthcare settings. In this manuscript, we describe various statistical approaches in lay terms and provide resources for genetic counselors new and seasoned alike. We hope to ease some of the trepidation in applying statistical approaches to genetic counseling research and provide resources to increase the analytical confidence of our workforce. This can increase the validity of the analyses and findings disseminated within and beyond our profession. First, we review some history and foundations of statistical practices that inform study design, sampling, data collection, analysis, and interpretation. Next, we highlight how different study designs inform the choice of data analysis and provide resources for statistical strategy choice. Finally, we provide resources on how to interpret statistical test results, recommend best practices, and highlight common but avoidable misconceptions in statistical interpretation. We hope this review provides a framework for novices in quantitative methodology and provides the language needed to collaborate with analytical/statistical colleagues.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.70042","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143892948","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}

{"title":"Association between proband characteristics and CDH1 cascade genetic testing uptake in at-risk relatives","authors":"Grace-Ann Fasaye,&nbsp;Kathleen Calzone,&nbsp;Elise Travis,&nbsp;Amber F. Gallanis,&nbsp;Lauren Gamble,&nbsp;Jeremy L. Davis","doi":"10.1002/jgc4.70011","DOIUrl":"https://doi.org/10.1002/jgc4.70011","url":null,"abstract":"<p>Cascade genetic testing involves testing at-risk relatives for a gene variant identified in the family to tailor clinical management. The first person in a family identified with a pathogenic or likely pathogenic variant is the proband. We aimed to determine proband characteristics associated with cascade testing for the <i>CDH1</i> gastric and breast cancer susceptibility gene. Cascade genetic testing proportions in 100 <i>CDH1</i> families were analyzed. Overall, 57% (248/427) of proband's first-degree relatives (FDR) and 31% (135/436) of second-degree relatives (SDR) underwent testing. Proband characteristics associated with higher mean proportions of genetic testing in FDR included male sex (<i>p</i> = 0.03) and personal history of gastric cancer (<i>p</i> = 0.05). A difference was also detected in mean uptake proportions by proband's race/ethnicity. White probands had higher mean proportions of SDR tested (40%) compared to Asian (9%, <i>p</i> = 0.02) and Black (5%, <i>p</i> = 0.001) probands. Testing proportions in FDR and SDR increased with the length of time from proband's <i>CDH1</i> diagnosis (FDR <i>p</i> &lt; 0.001, SDR <i>p</i> = 0.002). Age when proband was tested, personal history of breast cancer, and variant in another cancer gene did not influence testing uptake in FDR and SDR. Proband characteristics associated with higher <i>CDH1</i> cascade genetic testing proportions include male sex, White race/ethnicity, and a personal history of gastric cancer. Probands who are female, Asian, Black, and those without a personal history of gastric cancer may require tailored support facilitating <i>CDH1</i> cascade testing in at-risk relatives. Additional studies are needed to gain a deeper understanding of how proband characteristics influence the uptake of cascade genetic testing for cancer risk.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143893030","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}

{"title":"Breast cancer risk assessment evaluation of screening tools for genetics referral for women in Taiwan","authors":"Suying Fang,&nbsp;Yaolung Kuo,&nbsp;Pengchan Lin","doi":"10.1002/jgc4.70010","DOIUrl":"https://doi.org/10.1002/jgc4.70010","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Risk screening tools recommended by the United States Preventative Services Task Force (USPSTF) are used to screen potential BRCA1/2 pathogenic variant carriers. The purpose of this study was to identify an appropriate breast cancer risk-screening tool for genetic referral among women with a family history of breast cancer in Taiwan.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A cross-sectional design with convenience sampling was used in this study. Women with a family history of breast cancer but not diagnosed with breast cancer were recruited from surgical outpatient clinics. Sociodemographic and family cancer history were collected based on the screening tools. Both the Tyrer-Cuzick (IBIS) and BRCAPRO were used as a Gold standard to evaluate the accuracy of five screening tools. Sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), and the areas under the receiver-operating curve (AUC) were compared to identify the most accurate one to determine women with elevated risk as defined by IBIS and BRCAPRO calculations with lifetime risk over 15%.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>One hundred twenty-four women with a family history of breast cancer but not yet diagnosed as breast cancer were recruited in this study. When the Tyrer-Cuzick (IBIS) was used as the standard, the AUC for the tools ranged from 0.490 to 0.562. When the BRCAPRO was used as the standard, the <i>p</i> values of the Ontario Family History Assessment Tool (Ontario-FHAT) (<i>p</i> = 0.003) and Pedigree Assessment Tool (PAT) (<i>p</i> = 0.016) were significant, and the AUCs were 0.938 and 0.854 for Ontario-FHAT and PAT, respectively. Since the sensitivity of Ontario-FHAT was 100, which is higher than PAT, we considered that using Ontario-FHAT in Taiwanese women would be better than using PAT.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Ontario-FHAT would be an appropriate screening tool for identifying individuals in Taiwan who may need a genetic referral for further BRCA1/2 risk evaluation.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.70010","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143892947","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}

{"title":"Ethno-racial differences in the frequency of cancer reported from family pedigrees in the prenatal genetic counseling setting","authors":"Alex Palacios,&nbsp;Pamela Flodman,&nbsp;Kathryn Steinhaus French,&nbsp;Moyra Smith,&nbsp;Fabiola Quintero-Rivera","doi":"10.1002/jgc4.70038","DOIUrl":"https://doi.org/10.1002/jgc4.70038","url":null,"abstract":"<p>This study analyzed whether differences in cancer reporting exist between different ethno-racial groups in pedigrees from a prenatal <i>genetic counseling</i> setting. Data were collected from 446 charts at University of California, Irvine from January 1, 2015 to August 31, 2020. A total of 795 pedigrees meeting inclusion criteria were analyzed from four ethno-racial groups: White, Hispanic/Latinx, Asian, and African American/Black. The total number of first- and second-degree relatives affected with cancer was analyzed using contingency tables, nonparametric tests, and Poisson regression. Cancer reporting in first- and second-degree relatives was highest among the White group and lower in the Latinx, Asian, and Black groups. Ethno-racial group, presence or absence of the prospective father, and medical interpreter use were significant factors in predicting the number of relatives reported to have cancer in a Poisson regression model. Controlling for the total number of relatives in the pedigree, cancer reporting rates for the Latinx, Black, and Asian groups were 36.3%, 50.2%, and 65.5%, respectively, of that in the White pedigrees. Cancer reporting rates observed in Asian pedigrees (in comparison to White pedigrees) were similar to the rates reported by the Centers for Disease Control and Prevention, but reporting in the Latinx and Black pedigrees was less than would be expected based on population incidence. This suggests that cancer histories in some people of color (POC) may be truncated. Healthcare professionals should recognize that certain patient populations may have limited knowledge of their family cancer history, or that such information may not be disclosed due to nuances of cultural differences or possible provider bias. In order to provide appropriate <i>risk assessment</i>, <i>interventions</i> addressing structural barriers should be undertaken in prenatal clinics to reduce existing health <i>disparities</i> and improve health outcomes in POC, since this may be the only opportunity to obtain a comprehensive family health history.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.70038","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143892950","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}

{"title":"The impact of language discordance on genetic counselors' ability to establish a working alliance with patients","authors":"Anna Burton,&nbsp;Dana Schlegel,&nbsp;Charité Ricker,&nbsp;Beverly M. Yashar","doi":"10.1002/jgc4.70019","DOIUrl":"https://doi.org/10.1002/jgc4.70019","url":null,"abstract":"<p>We explored the impact of language discordance (LD) on quality of care by asking genetic counselors (GCs) about their perception of how their lack of proficiency in a patient's language affects their sessions. We hypothesized that contracting, which relies on ongoing, bidirectional communication between GC and patient, is particularly vulnerable to LD. Specifically, we evaluated the impact of dialogue engagement (whether GCs ranked dialogue as more one-sided/rigid or more interactive/conversational), time sufficiency (how adequate the GCs ranked the time allotted for the session), and interpreter-related factors (experience and relationship with interpreters; perceived ability and knowledge of how to work with interpreters) on GCs' perceived ability to contract in LD sessions. Forty-five GCs recruited from the NSGC listserv completed a 42-item survey exploring these topics through reflection on their most recent LD and language concordant (LC) sessions. The outcome measure of “perceived contracting success” was defined based on five practice-based competencies. Results were analyzed using Wilcoxon signed ranks tests and linear regressions and found that GCs' perceived (1) contracting success, (2) dialogue engagement, and (3) time sufficiency were significantly lower in LD sessions (<i>p</i> &lt; 0.001 for all 3). Perceived contracting success in LD sessions had a positive relationship with both perceived dialogue engagement and perceived time sufficiency (<i>r</i>² = 0.312, 0.103). Also, perceived dialogue engagement increased with higher perceived time sufficiency and trust in the interpreter (<i>r</i>² = 0.235, 0.27). Our study is the first to quantitatively explore factors impacting perceived contracting success in LD GC sessions and suggests that LD may hinder communication and session tailoring. This highlights the importance of GCs being more intentional about having interactive dialogue with patients in LD sessions, considering allotting more time for LD sessions, and meeting with the interpreter prior to LD sessions to establish a trusting relationship.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.70019","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143893009","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}

{"title":"What are patient perspectives on privacy and trust in digital genomic tools? A qualitative study","authors":"Vedika Jha,&nbsp;Saumeh Saeedi,&nbsp;Marc Clausen,&nbsp;Daniel Assamad,&nbsp;Sonya Grewal,&nbsp;Daena Hirjikaka,&nbsp;Whiwon Lee,&nbsp;Stephanie Luca,&nbsp;Angela Shaw,&nbsp;Robin Hayeems,&nbsp;Yvonne Bombard,&nbsp;the Genetics Navigator Study Team","doi":"10.1002/jgc4.70025","DOIUrl":"https://doi.org/10.1002/jgc4.70025","url":null,"abstract":"<p>Digital tools have emerged as a promising solution to increase the efficiency and capacity of genomic services. However, accessing information through internet-based applications raises concerns about privacy and security risks. As patient-facing digital tools are developed for genomic medicine, it is vital to understand and incorporate patients' perspectives on digital privacy and security. A qualitative study was conducted using semi-structured interviews and interpretive description. Thirty participants who previously received genetic testing for themselves (<i>n</i> = 17) or their child (<i>n</i> = 13) were interviewed (<i>n</i> = 20 females, <i>n</i> = 15 above 50 years old). Participants were willing to store and access genomics personal health information (PHI) in a patient-facing digital platform. The main benefit identified by participants was the ability to access and control their own PHI. Participants expressed that the benefits of digital genomics services, such as patient empowerment and personalized care, outweighed the perceived risks, such as potential data leaks. In order to minimize risks, participants emphasized the importance of transparency about the security measures in place and who would have access to their PHI. These findings inform the design of digital genomic platforms to enhance patients' sense of security, which is critical for the uptake and usage of any platform.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.70025","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143892810","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}

{"title":"Genetic counselors providing care to inpatients experience moral distress","authors":"Kylie Vermeire,&nbsp;Erin Wadman,&nbsp;Hannah Steber,&nbsp;Kristen Fishler","doi":"10.1002/jgc4.70017","DOIUrl":"https://doi.org/10.1002/jgc4.70017","url":null,"abstract":"<p>Moral distress is defined as a negative emotional response that occurs when healthcare professionals cannot carry out what they believe are ethically appropriate actions because of constraints or barriers. The prevalence of moral distress is high among inpatient healthcare providers and has been previously studied in genetic counselors (GCs). It has never been studied, however, among GCs with inpatient roles. This mixed methods study comprised a survey to assess moral distress using the previously validated Measure of Moral Distress—Healthcare Professionals (MMD-HP), followed by semi-structured interviews to further explore the prevalence and experience of moral distress and coping mechanisms to heal from moral distress. Twenty-five GCs who provided inpatient care completed the survey, 10 completed interviews. The survey identified that most (60%; <i>n</i> = 15) GCs in this study were new to the inpatient role, with less than 3 years of experience. The most prevalent sources of moral distress on the MMD-HP included watching patient care suffer because of poor provider continuity and feeling pressured to order or carry out orders for unnecessary/inappropriate tests. Themes from the interviews included: witnessing poor and inconsistent care, lack of time to provide care, pressure to obtain consent, support is needed to manage moral distress, and years of experience in the inpatient role alters the experience of moral distress. Talking with colleagues was the most common mechanism for healing from moral distress. Solutions to reducing moral distress included more administrative support, development of guidelines to promote consistent care, and provider education on the inpatient GC role and appropriate consent. Raising awareness of sources of moral distress among inpatient GCs is vital as the field of inpatient genetic counseling expands, as anticipatory guidance may be able to be provided to new inpatient GCs. Reducing moral distress among inpatient GCs is vital to retaining GCs in these roles.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.70017","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143892919","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}

{"title":"Exploring job search experiences of genetic counselors who matriculated as international students in the United States: A cross-sectional study","authors":"Monisha Sebastin,&nbsp;Tanaya Shroff,&nbsp;Natalie Boychuk,&nbsp;Niamh Mulrooney,&nbsp;Priyanka Ahimaz","doi":"10.1002/jgc4.70012","DOIUrl":"https://doi.org/10.1002/jgc4.70012","url":null,"abstract":"<p>The number of international students being admitted into genetic counseling programs (GCPs) in the US has been consistent for the past decade. While GCPs have made efforts to recruit and support international students during the application process, there is limited understanding of the additional support required by these students to secure employment in the US. This study aimed to explore the experiences and unique challenges of international genetic counselors (IGCs) during their first post-graduation job search in the US. IGCs who graduated from a US-based GCP and were not US citizens at the time of their graduation were surveyed about resources utilized for job search before and after graduating, challenges encountered during different stages of the job search, and sources of support and information used. The survey also assessed the availability of STEM optional practical training program extension (SOE) among GCPs, which enables international students to temporarily work post-graduation in the US while on their student visa. In total, 93 participants completed the survey, most identified as female (93.5%), and aged 25–34 years (61.2%). Participants' citizenships spanned 13 countries at the time of their graduation with largest groups from Canada (53.7%) and India (21.5%). About 65% reported that their GCP accepted international students but did not participate in the SOE program. Furthermore, 45% reported not receiving sufficient informational resources from GCPs and, 62% felt that faculty were unequipped to guide them through job search challenges related to international status. There is a need to extend stakeholders' existing diversity and inclusion efforts beyond admissions to assist the retention of IGCs in the workforce. This exploratory study highlights practical considerations for prospective applicants, GCPs, IGCs and professional societies to adopt that could assist with international graduates' search for employment.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.70012","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143892808","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}

{"title":"Laboratory and clinical genetic Counselor's perspectives on the reporting of personal health risks on carrier screening reports","authors":"Sydney Hubbard,&nbsp;Kristen Fishler,&nbsp;Alexandra Hankewycz","doi":"10.1002/jgc4.70009","DOIUrl":"https://doi.org/10.1002/jgc4.70009","url":null,"abstract":"<p>Carrier screening estimates the risk for an individual to be a carrier of an autosomal recessive or X-linked genetic condition. Incidentally, carrier screening may reveal personal health risks (PHR). Carrier results with PHR are “heterozygous variants which carry health risks similar to or unrelated to the disease caused by variants in a compound heterozygous, homozygous, or hemizygous configuration” (Sagaser et al., 2023, <i>Journal of Genetic Counseling</i>, 32, 540). Despite previous research identifying the carrier screening laboratory report as the most frequently utilized resource when providing post-test counseling for PHR, genetic counselors' preferences and expectations regarding PHR reporting have not been investigated. We developed a 20-item survey using five-point Likert scales and free-response questions related to the format and content of a laboratory report when PHR is identified. Participants were recruited through the NSGC Student Research Survey Listserv and included 48 clinical and eight laboratory genetic counselors. Most participants had neutral (39%) or low satisfaction (48%) with the current reporting of PHR. Participant-free responses highlighted a lack of consistency in how PHR is reported. Most participants (79%) agreed that reports should include clear management recommendations regarding PHR follow-up for providers, such as suggestions for specialty referrals or professional guidelines relevant to risks associated with the specific gene. There was a wide variation in responses regarding whether patients should be able to opt-out of PHR information on carrier screening panels. Free responses collected suggest the need for further investigation and clarification regarding an opt-out policy concerning logistics and consent. PHR for carriers is a nuanced topic, and reporting these risks requires careful consideration. The results of this study provide guidance as to how genetic counselors desire to see PHR reported on carrier reports.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.70009","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143892922","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}

{"title":"Collaborative coding in inductive content analysis: Why, when, and how to do it","authors":"Free Coulston,&nbsp;Fiona Lynch,&nbsp;Danya F. Vears","doi":"10.1002/jgc4.70030","DOIUrl":"https://doi.org/10.1002/jgc4.70030","url":null,"abstract":"<p>Inductive content analysis (ICA) is a useful method for analyzing qualitative data in genetic counseling research. It is particularly relevant when the goal is to examine and improve practices or develop recommendations. Although ICA can be undertaken by a single analyst, ideally there is involvement of multiple analysts (or co-coders). Co-coding can bring many benefits to qualitative analysis that sits within a constructivist paradigm, including developing a representation of the data that is not only understandable to more than one individual but also richer and more nuanced. It also provides an opportunity for mentoring more junior researchers and can be an efficient way to analyze large datasets. However, co-coding requires important planning and consideration, and there is currently a paucity of clear guidance. In this paper, we provide an outline of the small body of existing literature on this topic and propose six flexible step-by-step components of our approach to co-coding in ICA, based on our own work. We have utilized it to analyze reporting practices and perspectives for diagnostic genomic sequencing, informed consent for genetic testing, data sharing and storage, and genomic newborn screening, among other topics. To illustrate these components, we present some example vignettes to show how these procedures can be applied in different scenarios and with different analysts.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 3","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.70030","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143893007","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}