J Prev Alzheimers Dis
February 2025
Background: Alzheimer's disease and related dementias (ADRD) are chronically underdiagnosed in the U.S., particularly among minoritized racial and ethnic groups.
View Article and Find Full Text PDFIntroduction: Dementia is underdiagnosed in the United States. Understanding of older adults' experiences with screening is needed to optimize diagnosis.
Methods: US adults ages 65 to 80 ( = 1298) were surveyed on experiences with cognitive screening and blood biomarker (BBM) testing.
Introduction: The (IDEAL) Study is a randomized clinical trial investigating the psychosocial, behavioral, and cognitive impacts of apolipoprotein E () genotype disclosure for late-onset Alzheimer's disease (AD) among Latinos.
Methods: We used address-based sampling to recruit English- and Spanish-speaking Latinos aged 40-64 living in northern Manhattan for a community-based Baseline Survey about their knowledge and opinions about AD. Participants eligible for the clinical trial were invited to complete an Introductory Session, including AD and genetics education and informed consent, before undergoing genotyping for .
The availability of direct-to-consumer, at-home medical tests has grown over the last decade, but it is unknown how frequently older adults purchase at-home tests, how they perceive such tests, and how interested they are in using at-home tests in the future. We conducted a cross-sectional, nationally representative survey of non-institutionalized US adults aged 50 to 80 about their previous use of, perceptions of, and future intentions to use at-home medical tests. We found that nearly half of older adults (48.
View Article and Find Full Text PDFWorkplace wellness programs are an emerging avenue for health-related genetic testing, with some large employers now offering such testing to employees. Employees' knowledge and concerns regarding genetic discrimination may impact their decision-making about and uptake of workplace genetic testing (wGT). This study describes employed adults' objective knowledge of the Genetic Information Nondiscrimination Act (GINA) and evaluates how this knowledge correlates with attitudes and beliefs regarding wGT.
View Article and Find Full Text PDFPurpose: This study explored employee health behavior changes and health care utilization after workplace genetic testing (wGT). Wellness-program-associated wGT seeks to improve employee health, but the related health implications are unknown.
Methods: Employees of a large US health care system offering wGT (cancer, heart disease, and pharmacogenomics [PGx]) were sent electronic surveys.
Importance: Genetic researchers must have access to databases populated with data from diverse ancestral groups to ensure research is generalizable or targeted for historically excluded communities.
Objective: To determine genetic researchers' interest in doing research with diverse ancestral populations, which database stewards offer adequate samples, and additional facilitators for use of diverse ancestral data.
Design, Setting, And Participants: This survey study was conducted from June to December 2022 and was part of an exploratory sequential mixed-methods project in which previous qualitative results informed survey design.
Glomerular Dis
August 2023
Introduction: There is an increasing need to return genetic testing results to patients with kidney disease who were first genotyped on a research basis. Operationalizing this process in nephrology clinics is challenged by a limited number of genetic providers with whom to partner and a general lack of support services for all clinicians.
Methods: We administered a survey in March 2022 to assess the current ability and ongoing needs of nephrology divisions to return clinically significant research genetic results to patients and to implement clinical genetic testing.
Background: Purposeful social interactions are important for healthy aging. We conducted a pilot trial of SPEAK! (Seniors Promoting English Acquisition and Knowledge), an intervention providing older volunteers with a safe, accessible opportunity to converse via webcam with English-language learners.
Methods: A neurologically mixed sample of older adults was randomized to 8 weekly, webcam conversations with English-language learners or a waitlist control.
Background: Workplace genetic and/or genomic testing (wGT) is one of many options that employers can offer within the scope of voluntary workplace wellness programs, though we know little about how many employers are offering this benefit, or what kinds of testing are included.
Methods: Our landscaping review sought to discover the prevalence and distribution of wGT within voluntary wellness programs among U.S.
Background: The COVID-19 pandemic's impact on our personal and professional lives required a rapid adaptation to the evolving health crisis and accumulating social stresses. Established measures to reduce the spread of infection and potential death had a direct effect on ongoing research that involved older adults and underrepresented racial/ethnic groups. Although important to preserve public health, these measures risk further isolation of vulnerable research participant populations and threatened established community partnerships.
View Article and Find Full Text PDFTrials
February 2023
Background: Although most cancers are sporadic, germline genetic variants are implicated in 5-10% of cancer cases. Clinical genetic testing identifies pathogenic germline genetic variants for hereditary cancers. The Michigan Genetic Hereditary Testing (MiGHT) study is a three-arm randomized clinical trial that aims to test the efficacy of two patient-level behavioral interventions on uptake of cancer genetic testing.
View Article and Find Full Text PDFPurpose: Genetic researchers' selection of a database can have scientific, regulatory, and ethical implications. It is important to understand what is driving database selection such that database stewards can be responsive to user needs while balancing the interests of communities in equitably benefiting from advances.
Methods: We conducted 23 semistructured interviews with US academic genetic researchers working with private, government, and collaboratory data stewards to explore factors that they consider when selecting a genetic database.
Social interactions have cognitive and emotional benefits for older adults with mild cognitive impairment (MCI). The prevalence of loneliness and isolation in this population has been repeatedly noted, but interventions remain limited. We designed a program to connect older adults with MCI with an engaging volunteering opportunity, through videoconferencing conversations with another adult practicing English (English language learner).
View Article and Find Full Text PDFEffective, scalable mental health programs are greatly needed for older adults. In this study, Mood Lifters-a peer-led, community-based program promoting mental well-being-was adapted to more specifically address the needs of older adults. Two groups completed the 14-week program via Zoom.
View Article and Find Full Text PDFPediatr Blood Cancer
September 2022
Next-generation sequencing offers opportunities for targeted cancer therapies and may identify pathogenic germline variants. Adolescents' perception of testing is not well understood. We surveyed 16 adolescents and 59 parents regarding motivations, attitudes, and knowledge related to paired tumor/germline sequencing.
View Article and Find Full Text PDFIn this article we address how the recent, and anticipated upcoming, FDA approvals of novel anti-amyloid medications to treat individuals with mild Alzheimer's disease (AD) dementia could impact disclosure of biomarker results among asymptomatic research participants. Currently, research is typically the context where an asymptomatic individual may have the option to learn their amyloid biomarker status. Asymptomatic research participants who learn their amyloid status may have questions regarding the meaning of this result and the implications for accessing a potential intervention.
View Article and Find Full Text PDFConsumer interest in genetic and genomic testing is growing rapidly, with more than 26 million Americans having purchased direct-to-consumer genetic testing services. Capitalizing on the increasing comfort of consumers with genetic testing outside the clinical environment, commercial vendors are expanding their customer base by marketing genetic and genomic testing services, including testing for pharmacogenomic and pathogenic variants, to employers for inclusion in workplace wellness programs. We describe the appeal of voluntary workplace genomic testing (wGT) to employers and employees, how the ethical, legal, and social implications literature has approached the issue of genetic testing in the workplace in the past, and outline the relevant legal landscape.
View Article and Find Full Text PDFPurpose: Large-panel genomic tumor testing (GTT) is an emerging technology with great promise but uncertain clinical value. Previous research has documented variability in academic oncologists' perceptions and use of GTT, but little is known about community oncologists' perceptions of GTT and how perceptions relate to clinicians' intentions to use GTT.
Methods: Community oncology physicians (N = 58) participating in a statewide initiative aimed at improving access to large-panel GTT completed surveys assessing their confidence in using GTT, attitudes regarding the value of GTT, perceptions of barriers to GTT implementation, and future intentions to use GTTs.
Introduction: This study describes practices for disclosing individual research results to participants in Alzheimer's disease research.
Methods: An online survey of clinical core leaders at National Institutes of Health-funded Alzheimer's Disease Research Centers in the United States (response rate: 30/31, 97%) examined return of results practices across nine different types of research results.
Results: Most centers had returned consensus research diagnoses (83%) and neuropsychological test results (73%), with fewer having shared amyloid positron emission tomography (43%), tau imaging (10%), or apolipoprotein E () genotype (7%) results.
Unlabelled: Large-panel genomic tumor testing (GTT) is an emerging technology that promises to make cancer treatment more precise. Because GTT is novel and complex, patients may have unrealistic expectations and limited knowledge of its benefits. These problems may limit the clinical value of GTT, but their prevalence and associated factors have not been explored.
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