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Hot Topics of the Day are picked by experts to capture the latest information and publications on public health genomics and precision health for various diseases and health topics. Sources include published scientific literature, reviews, blogs and popular press articles.

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123 hot topic(s) found with the query "Communication"

Liminality between direct and family-mediated contact in the communication of genetic information to at-risk relatives.
(Posted: Apr 18, 2024 7AM)

From the article: "Ever since genetic test results have been able to be reported, questions have arisen regarding their implications for genetic relatives. Alongside the proband in whom the initial diagnosis is made, family members often also have an interest in the information. Being informed allows an at-risk relative to consider genetic counseling and testing, and to act in advance to prevent or mitigate future morbidity. Indeed, supporting patients to communicate risk information to their relatives is now considered as a key aspect for maximizing the benefits of genomic medicine. "

Challenges and opportunities for Lynch syndrome cascade testing in the United States.
Lauren E Passero et al. Fam Cancer 2024 3 (Posted: Apr 02, 2024 10AM)

From the abstract: " Lynch syndrome is an underdiagnosed genetic condition that increases lifetime colorectal, endometrial, and other cancer risk. Cascade testing in relatives is recommended to increase diagnoses and enable access to cancer prevention services, yet uptake is limited due to documented multi-level barriers. Individual barriers such as feelings of fear, guilt, and anxiety and limited knowledge about Lynch syndrome as well as interpersonal barriers including complex family dynamics and language barriers limit family communication about Lynch syndrome and prevent uptake of genetic screening for relatives. Organizational and environmental barriers including a shortage of genetics professionals, high costs, and fears of discrimination also reduce cascade testing. These multi-level barriers may disproportionately impact underserved populations in the United States,"

Understanding perceptions of tumor genomic profile testing in Black/African American cancer patients in a qualitative study: the role of medical mistrust, provider communication, and family support
CC Luck et al, J Comm Genetics, Feb 16, 2024 (Posted: Feb 16, 2024 4PM)

From the abstract: "Tumor genomic profiling (TGP) examines genes and somatic mutations specific to a patient’s tumor to identify targets for cancer treatments but can also uncover secondary hereditary (germline) mutations. Most patients are unprepared to make complex decisions related to this information. Black/African American (AA) cancer patients are especially at risk because of lower health literacy, higher levels of medical mistrust, and lower awareness and knowledge of genetic testing. But little is known about their TGP attitudes or preferences. "

Polygenic Risk Prediction in Diverse Populations and Contexts: Scientific and Ethical Considerations
ELSI Forum Webinar, January 12, 2024 (Posted: Dec 20, 2023 9AM)

From the website: "The differential performance of polygenic risk scores (PRS) by population genetic background is a well-known scientific concern and one of the most important barriers to their equitable translation for clinical use. Not only must the social repercussions of how people are grouped for test development be considered, but the communication of their context specificity and differential performance to patients and their clinicians must be carefully managed. Drawing on recent research experiences with the development, validation, and implementation of PRS for common complex disease risk, this webinar will explore the scientific and ethical considerations relevant to the widespread adoption of PRS for clinical care."

Early detection of autism using digital behavioral phenotyping
S Perochon et al, Nature Medicine, October 2, 2023 (Posted: Oct 02, 2023 11AM)

From the abstract: "Early detection of autism, a neurodevelopmental condition associated with challenges in social communication, ensures timely access to intervention. Autism screening questionnaires have been shown to have lower accuracy when used in real-world settings, such as primary care, as compared to research studies, particularly for children of color and girls. Here we report findings from a multiclinic, prospective study assessing the accuracy of an autism screening digital application (app) administered during a pediatric well-child visit to 475 (17–36 months old) children (269 boys and 206 girls). "

Future Forecasting for Research and Practice in Genetic Literacy
KA Kapingst, Public Health Genomics, September 13, 2023 (Posted: Sep 14, 2023 9AM)

From the abstract: "Available evidence highlights important gaps in genetic literacy throughout the population, limiting the potential use of these technologies to improve the health of individuals, their families, and their communities. Effective communication approaches are needed to meet the needs of individuals with varying levels of genetic literacy and from different communities. To achieve this goal, this piece highlights essential areas of research and practice in genetic literacy that are needed to inform public health translation of genomic discoveries. "

Recommendations for the use of pediatric data in artificial intelligence and machine learning ACCEPT-AI
V Muralidahan et al. NPJ Digital Medicine, September 6, 2023 (Posted: Sep 06, 2023 9AM)

From the abstract: "ACCEPT-AI is a framework of recommendations for the safe inclusion of pediatric data in artificial intelligence and machine learning (AI/ML) research. It has been built on fundamental ethical principles of pediatric and AI research and incorporates age, consent, assent, communication, equity, protection of data, and technological considerations. ACCEPT-AI has been designed to guide researchers, clinicians, regulators, and policymakers and can be utilized as an independent tool, or adjunctively to existing AI/ML guidelines."

Your Family Connects: A Theory-Based Intervention to Encourage Communication About Possible Inherited Cancer Risk among Ovarian Cancer Survivors and Close Relatives
J Zhao et al, Public Health Genomics, July 25, 2023 (Posted: Jul 26, 2023 9AM)

Encouraging family communication about possible genetic risk has become among the most important avenues for achieving the full potential of genomic discovery for primary and secondary prevention. Yet, effective family-wide risk communication (i.e., conveying genetic risk status and its meaning for other family members) remains a critical gap in the field. We aim to describe the iterative process of developing a scalable population-based communication outreach intervention, Your Family Connects.

Most people share genetic test results with relatives even if the findings are normal: family communication in a diverse population
JE Hunter et al, Genet Med, July 6, 2023 (Posted: Jul 07, 2023 9AM)

With increasing utilization of genetic testing, sharing genetic information can become part of general family health communication while providing biological relatives with important information about their own genetic risk. Importantly, little is known about motivations for and barriers to family communication of genetic information in historically underserved populations. Most participants overall (91%), including most with normal findings (89%), shared or planned to share their results with relatives. Common motivations for sharing results were to give relatives information about their genetic risk and because the participant thought the results were interesting.

What matters to parents? A scoping review of parents’ service experiences and needs regarding genetic testing for rare diseases
E Crellin et al, EJHG, June 12, 2023 (Posted: Jun 12, 2023 9AM)

To understand parents’ service experiences and needs regarding testing of their child for rare diseases, we conducted a scoping review. Five databases were searched (2000–2022), with 29 studies meeting the inclusion criteria. Parents especially valued and emphasised the importance of feeling ‘cared for’, continuous relationships with clinicians, empathic communication, being kept informed while awaiting genetic test results, linkage with informational and psychosocial resources following results disclosure, and follow-up.

Prosodic signatures of ASD severity and developmental delay in preschoolers.
Michel Godel et al. NPJ Digit Med 2023 5 (1) 99 (Posted: May 30, 2023 6AM)

Atypical prosody in speech production is a core feature of Autism Spectrum Disorder (ASD) that can impact everyday life communication. Because the ability to modulate prosody develops around the age of speech acquisition, it might be affected by ASD symptoms and developmental delays that emerge at the same period. Here, we investigated the existence of a prosodic signature of developmental level and ASD symptom severity in a sample of 74 autistic preschoolers.

Development and Evaluation of a Telephone Communication Protocol for the Delivery of Personalized Melanoma Genomic Risk to the General Population.
Georgina L Fenton et al. J Genet Couns 2017 12 (2) 370-380 (Posted: May 04, 2023 6AM)

This study aimed to develop an online educational program for using PRS for breast and ovarian cancer risk-assessments and evaluate the impact on genetic healthcare providers’ (GHP) attitudes, confidence, knowledge, and preparedness. The educational program comprised of an online module covering theoretical aspects of PRS, and a facilitated virtual workshop with pre-recorded roleplays and case discussions. Data were collected in pre-and post-education surveys.

Optimizing communication strategies and designing a comprehensive program to facilitate cascade testing for familial hypercholesterolemia.
Gemme Campbell-Salome et al. BMC health services research 2023 4 (1) 340 (Posted: Apr 07, 2023 8AM)

We aimed to optimize communication strategies to support family communication about familial hypercholesterolemia (FH) and improve cascade testing uptake among at-risk relatives. Individuals and families with FH provided feedback on multiple strategies including: a family letter, digital tools, and direct contact. Feedback from participants was collected via dyadic interviews (n = 11) and surveys (n = 98) on communication strategies and their proposed implementation to improve cascade testing uptake. We conducted a thematic analysis to identify how to optimize each strategy.

Human-centered design study to inform traceback cascade genetic testing programs at three integrated health systems
KM Romagnoli et al, Public Health Genomics, March 2023 (Posted: Mar 04, 2023 8AM)

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 can answer questions, followed by directed (sent directly to specific people) or passive (shared in a public area) communication. Repeated contact was acceptable for reminders.

The Alzheimer’s risk gene APOE modulates the gut–brain axis
AM Pena et al, Nature, February 6, 2023 (Posted: Feb 07, 2023 6AM)

Signals from gut microorganisms to the brain might be involved in neurodegeneration. It emerges that the gene APOE — variants of which each confer a different risk of Alzheimer’s disease — has a role in modulating this gut–brain communication.

Appropriateness of Cardiovascular Disease Prevention Recommendations Obtained From a Popular Online Chat-Based Artificial Intelligence Model.
Ashish Sarraju et al. JAMA 2023 2 (Posted: Feb 04, 2023 7AM)

This exploratory study found that a popular online AI model provided largely appropriate responses to simple CVD prevention questions as evaluated by preventive cardiology clinicians. Findings suggest the potential of interactive AI to assist clinical workflows by augmenting patient education and patient-clinician communication around common CVD prevention queries.

Assessment of Body Mass Index, Polygenic Risk Score, and Development of Colorectal Cancer.
Chen Xuechen et al. JAMA network open 2022 12 (12) e2248447 (Posted: Dec 23, 2022 6PM)

Do associations of excess weight with development of colorectal cancer differ by polygenic risk for colorectal cancer (CRC)? In this case-control study including 9169 participants (5053 CRC cases, 4116 controls), associations of excess weight with risk of CRC were independent of polygenic risk for CRC. The association of obesity with CRC risk was equivalent to that of having a 41-percentiles higher polygenic risk score. The findings of this study could contribute to enhanced quantification and communication of the association of excess weight with CRC.

Barriers and facilitators for the implementation of patient-centered care in cardiogenetics: a Delphi study among ERN GUARD-heart members
S van Pottelberghe et al, EJHG, December 21, 2022 (Posted: Dec 21, 2022 8AM)

The present study explores barriers and facilitators of implementing patient-centered care in cardiogenetics and contrasts various stakeholder viewpoints and perceived influence. The study revealed health system and organizational barriers and facilitators predominantly in implementing patient-centered care and only some patient-level factors. Some barriers and facilitators may be addressed easily (e.g., improving communication), while others may prove more complicated.

Addressing the challenges of polygenic scores in human genetic research
J Novembre et al, AJHG, December 1, 2022 (Posted: Dec 02, 2022 11AM)

Although the quantity and quality of data to compute PGSs are increasing, challenges remain in the technical aspects of developing PGSs and in the ethical and social issues that might arise from their use. This ASHG Guidance emphasizes three major themes for researchers working with or interested in the application of PGSs in their own research: (1) developing diverse research cohorts; (2) fostering robustness in the development, application, and interpretation of PGSs; and (3) improving the communication of PGS results and their implications to broad audiences.

A multinational Delphi consensus to end the COVID-19 public health threat
JV Lazarus et al, Nature, November 4, 2022 (Posted: Nov 04, 2022 9AM)

We convened a diverse, multidisciplinary panel of 386 academic, health, non-governmental organization, government and other experts in COVID-19 response from 112 countries and territories to recommend specific actions. The panel developed a set of 41 consensus statements and 57 recommendations to governments, health systems, industry and other key stakeholders across six domains: communication; health systems; vaccination; prevention; treatment and care; and inequities. In the wake of nearly three years of fragmented global and national responses, it is instructive to note that three of the highest-ranked recommendations call for the adoption of whole-of-society and whole-of-government approaches.

Models of communication for polygenic scores and associated psychosocial and behavioral effects on recipients: A systematic review.
Wallingford Courtney K et al. Genetics in medicine : official journal of the American College of Medical Genetics 2022 11 (Posted: Nov 03, 2022 8AM)

In total, 28 articles, representing 17 studies in several disease settings were identified. There was limited consistency in PGS communication and evaluation/reporting of outcomes. Most studies (n = 14) presented risk in multiple ways (ie, numerically, verbally, and/or visually). Three studies provided personalized lifestyle advice and additional resources. Only 1 of 17 studies reported using behavior change theory to inform their PGS intervention. Our findings call for development of best communication practices and evidence-based interventions informed by behavior change theories.

Psychosocial Issues Related to Newborn Screening: A Systematic Review and Synthesis
A Tluzcek et al, IJNS, September 2022 (Posted: Oct 04, 2022 9AM)

Psychosocial consequences of receiving unexpected neonatal screening results and unsolicited genetic information remain significant risks to expansion of NBS. Findings suggest that risks may be mitigated by improved parent NBS education, effective communication, individualized genetic counseling, and anticipatory developmental guidance. Clinicians need to take extra measures to ensure equitable service delivery to marginalized subpopulations.

Can extended reality in the metaverse revolutionise health communication?
Plechatá Adéla et al. NPJ digital medicine 2022 9 (1) 132 (Posted: Sep 04, 2022 8AM)

In the metaverse, users will actively engage with 3D content using extended reality (XR). Such XR platforms can stimulate a revolution in health communication, moving from information-based to experience-based content. We outline three major application domains and describe how the XR affordances (presence, agency and embodiment) can improve healthy behavior by targeting the users’ threat and coping appraisal

An accessible, relational, inclusive, and actionable (ARIA) model of genetic counseling compared with usual care: Results of a randomized controlled trial
J Galen et al, Genetics in Medicine, September 1, 2022 (Posted: Sep 02, 2022 9AM)

This study provides evidence that a genetic counseling intervention that focuses on specific communication skills to enhance relationship-building, patient engagement, and comprehension can be effective with all patients and may be especially valuable for patients of lower health literacy and Spanish-speakers who use a medical interpreter.

Experiences of individuals with a variant of uncertain significance on genetic testing for hereditary cancer risks: a mixed method systematic review.
Gould Danielle et al. Journal of community genetics 2022 7 (Posted: Jul 15, 2022 5AM)

A total of 18 studies met the inclusion criteria. Studies included in this review identified a range of emotional reactions to a VUS result, a general lack of understanding of a VUS result and its implications, frustration with a lack of healthcare provider knowledge, and a need for clear communication with healthcare providers.

Variation among DNA banking consent forms: points for clinicians to bank on.
Huang Samuel J et al. Journal of community genetics 2022 7 (Posted: Jul 15, 2022 5AM)

The objectives of this study were to assess the level of consistency of current clinical DNA banking consent forms with the American Society of Human Genetics (ASHG) and the American College of Medical Genetics and Genomics (ACMG) guidance and to explore variation among the forms. The content analysis matrix included key points identified from the ASHG and ACMG documents (including benefits/risks, sample storage, access, disposition, and communication).

Distributed learning for heterogeneous clinical data with application to integrating COVID-19 data across 230 sites
J Tong et al, NPJ Digital Medicine, June 14, 2022 (Posted: Jun 14, 2022 1PM)

We develop a distributed algorithm to integrate heterogeneous RWD from multiple clinical sites without sharing patient-level data. The proposed distributed conditional logistic regression (dCLR) algorithm can effectively account for between-site heterogeneity and requires only one round of communication. Our simulation study and data application with the data of 14,215 COVID-19 patients from 230 clinical sites in the UnitedHealth Group Clinical Research Database demonstrate that the proposed distributed algorithm provides an estimator that is robust to heterogeneity in event rates when efficiently integrating data from multiple clinical sites. Our algorithm is therefore a practical alternative to both meta-analysis and existing distributed algorithms for modeling heterogeneous multi-site binary outcomes.

Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs
L Bush et al, IJNS, May 2022 (Posted: May 31, 2022 9AM)

We consider the lived experiences of 169 family caregivers caring for 77 children with NBS-related conditions to identify lessons learned that can inform policy and practice related to population-based newborn screening using genomic technologies. Based on caregiver narratives obtained through in-depth interviews, we identify themes characterizing these families’ diagnostic odyssey continuum, which fall within two domains: (1) medical management implications of a child diagnosed with an NBS-related condition and (2) psychological implications of a child diagnosed with an NBS-related condition. For Domain 1, family caregivers’ experiences point to the need for educational resources for both health care professionals that serve children with NBS-related conditions and their families; empowerment programs for family caregivers; training for providers in patient-centered communication; and access to multi-disciplinary specialists. For Domain 2, caregivers’ experiences suggest a need for access to continuous, long-term counseling resources; patient navigator resources; and peer support programs.

Making BRCA1 genetic test reports easier to understand through user-centered design: A randomized trial.
Recchia Gabriel et al. Genetics in medicine : official journal of the American College of Medical Genetics 2022 5 (Posted: May 08, 2022 1PM)

Our objective was to apply a user-centered design process to identify phrases, graphics, and ways of communicating numerical risks that could be used to help patients understand their cancer risk and next steps on receiving BRCA1 genetic test results (positive, negative, and variants of uncertain significance). Subjective comprehension, communication efficacy, and actionability were all higher for the user-centered reports, with no difference in perceived risk. Comprehension of participants viewing user-centered reports was significantly better on 2 items, directionally (but not significantly) better on 6 items, and directionally (but not significantly) worse on 2 items.

Effect of Patient-Directed Messaging on Colorectal Cancer Screening A Randomized Clinical Trial
A Oyalowo et al, JAMA Network Open, March 31, 2022 (Posted: Apr 01, 2022 1PM)

Are individuals more likely to complete colorectal cancer screening if they receive communication that is tailored to their attitudes and beliefs? In this randomized clinical trial including 600 participants, a tailored message intervention and a generic message intervention were significantly more effective at increasing colonoscopy scheduling and colonoscopy completion rates compared with usual care. The tailored message intervention was not shown to be superior to the generic message intervention.

Impact of polygenic risk communication: an observational mobile application-based coronary artery disease study
ED Muse et al, NPJ Digital Medicine, March 11, 2022 (Posted: Mar 12, 2022 8AM)

We developed a smartphone application, MyGeneRank, to conduct a prospective observational cohort study involving the automated generation, communication, and electronic capture of response to a polygenic risk score (PRS) for coronary artery disease (CAD). We evaluated self-reported actions taken in response to personal CAD PRS information, with special interest in the initiation of lipid-lowering therapy. 19% (721/3,800) of participants provided complete responses for baseline and follow-up use of lipid-lowering therapy. 20% (n?=?19/95) of high CAD PRS vs 7.9% (n?=?8/101) of low CAD PRS participants initiated lipid-lowering therapy at follow-up (p-value?=?0.002).

Receiving results of uncertain clinical relevance from population genetic screening: systematic review & meta-synthesis of qualitative research
F Johnson et al, EJHG, March 8, 2022 (Posted: Mar 08, 2022 8AM)

Our findings suggest that results of uncertain clinical relevance are often experienced in the same way as a ‘full-blown’ diagnosis. This has significant emotional and behavioral impact, for example adoption of lifestyle-altering disease-focused behaviors. Analysis suggests this may be due to the results not fitting a common medical model, leading recipients to interpret the significance of the result maladaptively. Findings suggest scope for professionals to negotiate and reframe uncertain screening results. Clearer initial communication is needed to reassure recipients there is no immediate severe health risk from these types of results.

Bias In Algorithms Of AI Systems Developed For COVID-19: A Scoping Review
J Delgado et al, Research Square, February 10, 2022 (Posted: Feb 11, 2022 7AM)

From 1054 identified articles, 20 studies were finally included. We propose a typology of biases identified in the literature based on bias, limitations and other ethical issues in both areas of analysis. Results on health disparities and SDOH were classified into five categories: racial disparities, biased data, socio-economic disparities, unequal accessibility and workforce, and information communication.

Enhancing serious illness communication using artificial intelligence
IS Chua et al, NPJ Digital Medicine, January 27, 2022 (Posted: Jan 28, 2022 4PM)

Delivery of serious illness communication (SIC) is necessary to ensure that all seriously ill patients receive goal-concordant care. However, the current SIC delivery process contains barriers that prevent the delivery of timely and effective SIC. In this paper, we describe the current bottlenecks of the traditional SIC workflow and explore how a hybrid artificial intelligence-human workflow may improve the efficiency and effectiveness of SIC delivery in busy practice settings.

Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps
Polygenic Risk Score Task Force of the International Common Disease Alliance, Nature Medicine, November 15, 2021 (Posted: Nov 16, 2021 8AM)

The potential benefits of PRSs include cost-effective enhancement of primary disease prevention, more refined diagnoses and improved precision when prescribing medicines. However, these must be weighed against the potential risks, such as uncertainties and biases in PRS performance, as well as potential misunderstanding and misuse of these within medical practice and in wider society. By addressing key issues including gaps in best practices, risk communication and regulatory frameworks, PRSs can be used responsibly to improve human health.

Transdisciplinary Conference for Future Leaders in Precision Public Health
Speakers Slide Presentations, November 2021 (Posted: Nov 12, 2021 7AM)

This virtual event held in October 2021 connected future research leaders around the world interested in the role of genetics and precision health in the promotion of public health. The speakers provided opportunities for early career investigators to discuss new developments in precision public health with leading experts in the field. Attendees heard from expert epidemiologists, behavioral scientists, statisticians, and global public health leaders about topics such as health equity in genetic epidemiology, genetic risk communication in cancer care, and biostatistics and modeling.

Patient-focused pathogen genetic counselling-has the time come?
Ferdinand Angeline S et al. Genome medicine 2021 11 (1) 178 (Posted: Nov 11, 2021 0PM)

Ensuring accordance with principles of healthcare ethics requires improved communication of pathogen genomic data. This could include educating healthcare professionals in communicating pathogen genomic information to individuals, developing ethical frameworks for reporting pathogen genomic results to individuals, responsible media reporting guidelines, and counselling for individuals (‘pathogen genetic counselling’).

Contact Tracer’s Interview Tool: Notifying People About an Exposure to COVID-19
CDC, October 19, 2021 Brand (Posted: Oct 20, 2021 4AM)

This document provides suggested communication approaches for COVID-19 contact tracing. Scripts may need to be modified to address locality-specific needs, including but not limited to highlighting available resources, cultural nuances, exposure sites, and the capture of epidemiological data. Public health workers should use what is helpful and the best fit for the interaction; all questions or statements may not be required, and additional probing questions may be necessary. Programs are encouraged to share best practices in framing and phrases as they are identified.

Cultural adaptation: a framework for addressing an often-overlooked dimension of digital health accessibility
JS Marwaha et al, NPJ Digital Medicine, October 1, 2021 (Posted: Oct 01, 2021 6AM)

Relatively little is known about how to make digital health tools accessible to different populations from a cultural standpoint. Alignment with cultural values and communication styles may affect these tools’ ability to diagnose and treat various conditions. In this Editorial, we highlight the findings of recent work to make digital tools for mental health more culturally accessible, and propose ways to advance this area of study.

Scoping review: the empowerment of Alzheimer’s Disease caregivers with mHealth applications
E Kim et al, NPJ Digital Medicine, September 7, 2021 (Posted: Sep 07, 2021 6AM)

We searched published literature in five electronic databases between January 2014 and January 2021. Twelve articles were included in the final review. Six themes emerged based on the functionalities provided by the reviewed applications for caregivers. They are tracking, task management, monitoring, caregiver mental support, education, and caregiver communication platform. The review revealed that mHealth applications for AD patients’ caregivers are inadequate.

Health Literacy in the Digital Age: Applications to Genomics
Slide presentation, CDC webinar, June 2021 Brand (Posted: Sep 04, 2021 8AM)

With the recent COVID-19 pandemic, patients are turning more to online information sources and telehealth services to address their healthcare needs. Digital health literacy plays an increasingly important role in understanding information and in patient-provider communication. This has implications across disease prevention and the healthcare continuum including the field of genetics.

Has COVID taught us anything about pandemic preparedness? Researchers warn that plans to prevent the next global outbreak don’t consider the failures that have fuelled our current predicament.
A Maxmen, Nature, August 13, 2021 (Posted: Aug 15, 2021 3PM)

Epidemiologists and researchers who specialize in biosecurity and public health have been outlining preparedness plans for at least 20 years. The core components consist broadly of surveillance to detect pathogens; data collection and modelling to see how they spread; improvements to public-health guidance and communication; and the development of therapies and vaccines.

Digital health: how to govern during a never-ending data tsunami
DS Muntz, NPJ Digital Medicine, August 10, 2021 (Posted: Aug 10, 2021 3PM)

Good data governance requires principles1 to help guide people who produce and consume data. The three primary activities of a good data governance process are communication, coordination, and most importantly, collaboration. These 3Cs are force multipliers. Harnessing the power of a tsunami requires strong principles-based governance.

Gene-drive suppression of mosquito populations in large cages as a bridge between lab and field
A Hammond et al, Nature Communication, July 28, 2021 (Posted: Jul 28, 2021 10AM)

CRISPR-based gene-drives targeting the gene doublesex in the malaria vector Anopheles gambiae effectively suppressed the reproductive capability of mosquito populations reared in small laboratory cages. To bridge the gap between laboratory and the field, this gene-drive technology must be challenged with vector ecology. Here we report the suppressive activity of the gene-drive in age-structured An. gambiae populations in indoor cages that permit feeding and reproductive behaviors.

A qualitative study of prevalent laboratory information systems and data communication patterns for genetic test reporting
A Khalifa et al, Genetics in Medicine, July 6, 2021 (Posted: Jul 06, 2021 8AM)

The availability of genetic test data within the electronic health record is a pillar of the US vision for an interoperable health IT infrastructure and a learning health system. Although EHRs have been highly investigated, evaluation of the information systems used by the genetic labs has received less attention—but is necessary for achieving optimal interoperability. This study aimed to characterize how US genetic testing labs handle their information processing tasks.

Acceptability, Appropriateness, and Feasibility of Automated Screening Approaches and Family Communication Methods for Identification of Familial Hypercholesterolemia: Stakeholder Engagement Results from the IMPACT-FH study
LK Jones et al, JPM June 21, 2021 (Posted: Jun 22, 2021 8AM)

Guided by the Conceptual Model of Implementation Research, we explored the acceptability, appropriateness, and feasibility of: (1) automated screening approaches utilizing existing health data to identify those who require subsequent diagnostic evaluation for familial hypercholesterolemia (FH) and (2) family communication methods including chatbots and direct contact to communicate information about inherited risk for FH. Focus groups were conducted with 22 individuals with FH (2 groups) and 20 clinicians (3 groups)

Genetic counseling and testing for Asian Americans: a systematic review
JL Young et al, Genetics in Medicine, May 10, 2021 (Posted: May 11, 2021 8AM)

Synthesis of results revealed that (1) Asian Americans are under-referred but have high uptake for genetic services, (2) linguistic/communication challenges were common and Asian Americans expected more directive genetic counseling, and (3) Asian Americans’ family members were involved in testing decisions, but communication of results and risk information to family members was lower than other racial groups.

Symptom study app provides real-world data on COVID-19 vaccines
RE Drury et al, Lancet Infectious Diseases, April 27, 2021 (Posted: Apr 28, 2021 0PM)

A new study provides valuable information to health-care professionals and the general public on vaccine reactogenicity and effectiveness in the community setting. In this era of rapid dissemination of information, good science communication has a crucial role to play in strengthening public confidence in vaccines and thus maximizing vaccine uptake.

Digital health interventions in palliative care: a systematic meta-review
AM Finucane, et al, NPJ Digital Medicine, April 2021 (Posted: Apr 07, 2021 6AM)

This meta-review revealed 21 relevant systematic reviews, encompassing 332 publications. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described in studies within reviews. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making (13%), information provision or management (13%) and communication (9%).

A framework for microbiome science in public health
JE Wilkinson et al, Nature Medicine, April 5, 2021 (Posted: Apr 05, 2021 1PM)

Human microbiome science has advanced rapidly and reached a scale at which basic biology, clinical translation and population health are increasingly integrated. It is thus now possible for public health researchers, practitioners and policymakers to take specific action leveraging current and future microbiome-based opportunities and best practices. Here we provide an outline of considerations for research, education, and scientific communication.

Health Literacy in the Digital Age: Applications to Genomics
CDC Webinar, June 10, 2021 Brand (Posted: Mar 20, 2021 11AM)

With the recent COVID-19 pandemic, patients are turning more to online information sources and telehealth services to address their healthcare needs. Digital health literacy plays an increasingly important role in understanding information and in patient-provider communication. This has implications across disease prevention and the healthcare continuum including the field of genetics. Register today to attend our June 10, 2021 webinar.

Connecticut Uses Social Media to Engage Long-term Care Residents- States continue to find COVID-19-safe ways to maintain communication with citizens
CDC, March 2021 Brand (Posted: Mar 20, 2021 9AM)

Leveraging risk communication science across US federal agencies
WMP Klein et al, Nature Human Behavior, March 18, 2021 (Posted: Mar 20, 2021 8AM)

Many US federal agencies apply principles from risk communication science across a wide variety of hazards. In so doing, they identify key research and practice gaps that, if addressed, could help better serve the nation’s communities and greatly enhance practice, research, and policy development.

Interventions Facilitating Family Communication of Genetic Testing Results and Cascade Screening in Hereditary Breast/Ovarian Cancer or Lynch Syndrome: A Systematic Review and Meta-Analysis.
Baroutsou Vasiliki et al. Cancers 2021 13(4) (Posted: Mar 09, 2021 9AM)

The study identified interventions designed to facilitate family communication of genetic testing results and/or cancer predisposition cascade genetic testing for HBOC and LS. We conducted a systematic review and meta-analysis of randomized trials that assessed intervention efficacy for these two outcomes. Additional outcomes were also recorded and synthesized when possible. 14 articles met the inclusion criteria and were included in the narrative synthesis.

A multiplex PCR amplicon sequencing assay to screen genetic hearing loss variants in newborns.
Yang Haiyan et al. BMC medical genomics 2021 3 (1) 61 (Posted: Mar 01, 2021 8AM)

Congenital hearing loss is one of the most common birth defects. Early identification plays a crucial role in improving patients’ communication and language acquisition. Previous studies demonstrated that genetic screening complements newborn hearing screening in clinical settings. We developed a multiplex PCR amplicon sequencing assay to sequence the coding region of the GJB2 gene, the most pathogenic variants of the SLC26A4 gene, and hotspot variants in the MT-RNR1 gene.

Development and implementation of an electronic medical record module to track genetic testing results.
Scott Anthony et al. Genetics in medicine : official journal of the American College of Medical Genetics 2021 Jan (Posted: Jan 28, 2021 8AM)

This Pediatric Genetic Tracking episodes system serves as a “one-stop shop” living document for updated patient genetic information and can be easily expanded to include variant content for broader population level sharing or analysis. These episodes-based modules facilitate communication to support timely and accurate return of genetic test results and follow-up.

Challenges and Opportunities for Communication about the Role of Genomics in Public Health.
Allen Caitlin G et al. Public health genomics 2021 Jan 1-7 (Posted: Jan 15, 2021 8AM)

We describe 5 common communication challenges about the role of genomics in public health: (1) communicating that using genomics to assess rare diseases can have an impact on public health; (2) providing evidence that genetic factors can add important information to environmental, behavioral, and social determinants of health; (3) communicating that although genetic factors are nonmodifiable, they can increase the impact of public health programs and communication strategies; (4) addressing the concern that genomics is not ready for clinical practice; and (5) communicating that genomics is valuable beyond the domain of health care and can be integrated as part of public health programs.

Second opinion needed: communicating uncertainty in medical machine learning
B Kompa et al, NPJ Digital Medicine, January 5, 2021 (Posted: Jan 07, 2021 11AM)

Effective quantification and communication of uncertainty could help to engender trust with healthcare workers, while providing safeguards against known failure modes of current machine learning approaches. As machine learning becomes further integrated into healthcare environments, the ability to say “I’m not sure” or “I don’t know” when uncertain is a necessary capability to enable safe clinical deployment.

Emergency Preparedness and Risk Communication Among African American Churches: Leveraging a Community-Based Participatory Research Partnership COVID-19 Initiative.
Brewer LaPrincess C et al. Preventing chronic disease 2020 Dec E158 (Posted: Dec 11, 2020 9AM)

We used the Centers for Disease Control and Prevention Crisis and Emergency Risk Communication framework to conduct a needs assessment, distribute emergency preparedness manuals, and deliver COVID-19-related messaging among African American churches via electronic communication platforms. A needs assessment showed that the top 3 church emergency resource needs were financial support, food and utilities, and COVID-19 health information.

Reimagining Public Health in the Aftermath of a Pandemic.
Brownson Ross C et al. American journal of public health 2020 11 (11) 1605-1610 (Posted: Oct 22, 2020 8AM)

A reinvented public health system will depend highly on leadership and political will, rethinking how we categorize and address population-level risk, employing 21st-century data sciences, and applying new communication skills.

Barriers and facilitators for cascade testing in genetic conditions: a systematic review
S Srinivasan et al, EJHG, September 18, 2020 (Posted: Sep 21, 2020 9AM)

Barriers and facilitators at the individual-level were organized into the following categories: (1) demographics, (2) knowledge, (3) attitudes and emotional responses. At the interpersonal-level, were categorized as (1) family communication- support- and dynamics. At the environmental-level they related to accessibility of genetic services.

The COVID-19 Pandemic Vulnerability Index (PVI) Dashboard: Monitoring county-level vulnerability using visualization, statistical modeling, and machine learning
SW Marvel et al, MEDRXIV, September 13, 2020 (Posted: Sep 14, 2020 7AM)

The COVID-19 PVI Dashboard monitors multiple data streams to communicate county-level trends and vulnerabilities and facilitates decision-making and communication among government officials, scientists, community leaders, and the public to enable effective and coordinated action to combat the pandemic.

Future-proofing biobanks’ governance
F Gille et al, Eur J Hum Genetics, May 18, 2020 (Posted: May 19, 2020 7AM)

We reviewed information available on the websites of 69 biobanks, and directly contacted them for additional information. Our study identified six types of commonly adopted governance strategies: communication, compliance, expert advice, external review, internal procedures, and partnerships.

Systematic development of a training program for healthcare professionals to improve communication about breast cancer genetic counseling with low health literate patients.
van der Giessen Jeanine A M et al. Familial cancer 2020 Apr (Posted: Apr 29, 2020 7AM)

Mobile messaging with patients
L Martinengo et al, BMJ, March 2020 (Posted: Apr 05, 2020 8AM)

Mobile messaging has the potential to support clinical practice and should be offered as an optional service. Before engaging in mobile messaging with your patients, develop a policy that includes the scope of communication, roles, and expected response time. Offer other communication channels to patients who choose to opt out of mobile messaging.

Genetic counselor implicit bias and its effects on cognitive and affective exchanges in racially discordant simulations.
Lowe Chenery L et al. Journal of genetic counseling 2020 Mar (Posted: Mar 11, 2020 8AM)

Previous studies have linked clinicians' implicit racial bias with less patient-centered communication between healthcare providers and patients in a variety of healthcare contexts. The current study explored influence of implicit racial bias in genetic counselors' facilitation of simulated clients' cognitive and emotional processing during genetic counseling sessions

Communication, collaboration and cooperation can stop the 2019 coronavirus.
et al. Nature medicine 2020 Feb (Posted: Feb 06, 2020 2PM)

Communication, collaboration and cooperation can stop the 2019 coronavirus
Nature Medicine, February 3, 2020 (Posted: Feb 04, 2020 9AM)

As the outbreak of a deadly new coronavirus in China and its rapid spread is rattling countries, only the collective international experience and advances derived from past outbreaks can accelerate its control.

Communication and Information Sharing about Genomics and Precision Health: Opportunities for Improvement
C Allen et al, CDC Blog, January 2, 2020 Brand (Posted: Jan 04, 2020 2PM)

We describe our current approach to information sharing based on a recent review of our communication and engagement strategies. In order to improve our approaches to communication, we are asking you, our readers, for feedback—please share your thoughts here.

Short communication: Multistate outbreak of Listeria monocytogenes infections retrospectively linked to unpasteurized milk using whole-genome sequencing.
Nichols Megin et al. Journal of dairy science 2019 Nov (Posted: Dec 04, 2019 10AM)

This is the first multistate listeriosis outbreak linked to unpasteurized milk in the United States detected using whole-genome multilocus sequence analysis.

Communication and Decision Making for Individuals with Inherited Cancer Syndromes
NCI, November 2019 Brand (Posted: Nov 22, 2019 8AM)

NCI support for projects that will be conducted to develop, test, and evaluate interventions and implementation approaches, or adapt existing approaches, to improve cancer risk communication between patients with an inherited susceptibility to cancer (and their families) and providers so that affected individuals can make informed clinical risk management decisions.

Find Training
CDC, 2019 Brand (Posted: Oct 29, 2019 11AM)

Training in health literacy, plain language, and culture and communication is essential for anyone working in health information and services. Whether you are new to these topics, need a refresher, or want to train your entire staff, the following courses are a good place to start.

Enhancing Observational Data Collection to Inform Precision Cancer Research and Care
DCCPS, NCI, October 2019 Brand (Posted: Oct 22, 2019 11AM)

DCCPS supports research in surveillance, epidemiology, health care delivery, behavioral science, and cancer survivorship. It is a source of expertise and evidence on issues such as the quality of cancer care, the economic burden of cancer, geographic information systems, statistical methods, communication, behavioral research and health care delivery.

Technology approaches to digital health literacy.
Dunn Patrick et al. International journal of cardiology 2019 Oct 294-296 (Posted: Oct 15, 2019 8AM)

Digital health literacy is an extension of health literacy and uses the same operational definition. Technology solutions have the potential to promote health literacy. Technology solutions should go beyond building literacy and numeracy skills to functional and critical skills, such as navigating the healthcare system, communication and shared decision making.

Patient assessment of chatbots for the scalable delivery of genetic counseling.
Schmidlen Tara et al. Journal of genetic counseling 2019 Sep (Posted: Sep 26, 2019 8AM)

A barrier to incorporating genomics more broadly is limited access to providers with genomics expertise. Chatbots are a technology-based simulated conversation used in scaling communications. the study developed chatbots to facilitate communication with participants receiving clinically actionable genetic variants from a community health initiative.

Cognitive and Affective Responses to Mass-media Based Genetic Risk Information in a Socio-demographically Diverse Sample of Smokers.
Waters Erika A et al. Journal of health communication 2019 Sep 1-11 (Posted: Sep 18, 2019 9AM)

Creating genetic reports that are understood by nonspecialists: a case study.
Recchia Gabriel et al. Genetics in medicine : official journal of the American College of Medical Genetics 2019 Sep (Posted: Sep 12, 2019 7AM)

The study investigated the feasibility of creating reports for cystic fibrosis carrier testing through a rapid user-centered design process that built on a previously developed generic template. The authors evaluated the new reports’ communication efficacy and effects on comprehension against comparable reports used in current clinical practice.

"Our Job is that Whole Gray Zone in Between There": Investigating Genetic Counselors' Strategies for Managing and Communicating Uncertainty.
Zhong Lingzi et al. Health communication 2019 Aug 1-10 (Posted: Aug 21, 2019 8AM)

Why digital medicine depends on interoperability
M Lehne et al, NPJ Digital Medicine, August 20, 2019 (Posted: Aug 21, 2019 8AM)

Interoperability is key to the success of digital medicine. This review that explores 4 crucial areas: artificial intelligence, medical communication, research and international cooperation.

Patterns of Communicating About Family Health History: Exploring Differences in Family Types, Age, and Sex.
Campbell-Salome Gemme et al. Health education & behavior : the official publication of the Society for Public Health Education 2019 Jun 1090198119853002 (Posted: Jun 26, 2019 9AM)

This study of more than 200 participants examined the direct and indirect effects of family communicative environments on whether individuals actively collected FHH information, as well as how age and sex differences complicate this relationship. Results show there was a direct effect between open family communicative environments and active collection, and found FHH communication openness was a positive partial mediator

Development of FamilyTalk: an Intervention to Support Communication and Educate Families About Colorectal Cancer Risk.
Bowen Deborah J et al. Journal of cancer education : the official journal of the American Association for Cancer Education 2019 Feb (Posted: Feb 12, 2019 10AM)

Physician Communication of Genomic Results in a Diagnostic Odyssey Case Series.
Rubanovich Caryn Kseniya et al. Pediatrics 2019 Jan 143(Suppl 1) S44-S53 (Posted: Jan 09, 2019 11AM)

Exploring the Emotional and Behavioural Reactions to Receiving Personalised Melanoma Genomic Risk Information: A Qualitative Study.
Fenton G L et al. The British journal of dermatology 2018 Dec (Posted: Jan 02, 2019 4PM)

Cancer communication research in the era of genomics and precision medicine: a scoping review
KA Kaphingst et al, Genetics in Medicine, December 21, 2018 (Posted: Dec 21, 2018 10AM)

Learning one’s genetic risk changes physiology independent of actual genetic risk
BP Turnwald et al, Nature Human Behavior, December 2018 (Posted: Dec 11, 2018 10AM)

Communication About Hereditary Cancers on Social Media: A Content Analysis of Tweets About Hereditary Breast and Ovarian Cancer and Lynch Syndrome.
Allen Caitlin G et al. Journal of cancer education : the official journal of the American Association for Cancer Education 2018 Dec (Posted: Dec 09, 2018 4PM)

Exome sequencing disclosures in pediatric cancer care: Patterns of communication among oncologists, genetic counselors, and parents.
Scollon Sarah et al. Patient education and counseling 2018 Nov (Posted: Dec 04, 2018 10AM)

Genetic information about disease risks - does knowledge empower?
PHG Foundation, December 3, 2018 (Posted: Dec 04, 2018 9AM)

Communication and Decision Making for Individuals with Inherited Cancer Syndromes
NCI Cancer Moonshot Funding Announcement, September 2018 (Posted: Sep 12, 2018 1PM)

Genetic testing and autism: Tutorial for communication sciences and disorders.
DeThorne Laura S et al. Journal of communication disorders 2018 May 7461-73 (Posted: Jun 11, 2018 11AM)

How Can We Reach At-Risk Relatives? Efforts to Enhance Communication and Cascade Testing Uptake: a Mini-Review
R Schwiter et al. Curr Genet Med Rep, Apr 2018 (Posted: Apr 24, 2018 9AM)

Maternal perceptions of BRCA genetic counseling communication processes about disclosing cancer risk information to children and adult relatives.
Hamilton Jada G et al. Psycho-oncology 2018 Apr (Posted: Apr 18, 2018 10AM)

Alerting relatives about heritable risks: the limits of confidentiality
A Loukassen et al, BMJ, 2018 (Posted: Apr 09, 2018 3PM)

Familial communication and cascade testing among relatives of BRCA population screening participants
S Lieberman et al, Genet in Medicine, Mar 29, 2018 (Posted: Mar 29, 2018 3PM)

Research matters: How a brother with Down syndrome inspired a PhD in tuberculosis and an ardor for science communication
M Wright, PLOS Pathogens, Feb 8, 2018 (Posted: Feb 08, 2018 6PM)

Communicating with Daughters About Familial Risk of Breast Cancer: Individual, Family, and Provider Influences on Women's Knowledge of Cancer Risk.
Peipins Lucy A et al. Journal of women's health (2002) 2018 Jan (Posted: Feb 08, 2018 8AM)

Genetic test reporting of CDKN2A provides informational and motivational benefits for managing melanoma risk.
Aspinwall Lisa G et al. Translational behavioral medicine 2018 Jan (1) 29-43 (Posted: Feb 06, 2018 1PM)

Patient communication of cancer genetic test results in a diverse population.
Ricker Charité N et al. Translational behavioral medicine 2018 Jan (1) 85-94 (Posted: Feb 06, 2018 1PM)

Communication of cancer-related genetic and genomic information: A landscape analysis of reviews.
Peterson Emily B et al. Translational behavioral medicine 2018 Jan (1) 59-70 (Posted: Feb 02, 2018 1PM)

Communication in genetic medicine
E Amsen, TGMI Blog Post, Dec 8, 2017 (Posted: Dec 11, 2017 9AM)

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Disclaimer: Articles listed in Hot Topics of the Day are selected by Public Health Genomics Branch to provide current awareness of the scientific literature and news. Inclusion in the update does not necessarily represent the views of the Centers for Disease Control and Prevention nor does it imply endorsement of the article's methods or findings. CDC and DHHS assume no responsibility for the factual accuracy of the items presented. The selection, omission, or content of items does not imply any endorsement or other position taken by CDC or DHHS. Opinion, findings and conclusions expressed by the original authors of items included in the Clips, or persons quoted therein, are strictly their own and are in no way meant to represent the opinion or views of CDC or DHHS. References to publications, news sources, and non-CDC Websites are provided solely for informational purposes and do not imply endorsement by CDC or DHHS.
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