Biomedical subjects

Maya Sabatello

Publications and source records attributed to Maya Sabatello.

4 recordsLinked to original sources

PubMed2025

Negative descriptors in electronic health records of patients with diabetes.

BACKGROUND: Negative descriptors in electronic health records (EHR) contribute to worse health outcomes; studies show they are also more prevalent in EHRs of women and racial minorities and affect downstream research biases. Similar and unique patterns of negative descriptors may also exist in the records of blind patients, including those with diabetic retinopathy. Diabetic retinopathy is a preventable but leading cause of blindness in the US that is disproportionally high among women and racial and ethnic minorities. METHODS: Using EHR from a large medical center, we created "matched" cohorts of patients with a type 2 diabetes-only diagnosis and patients with a diagnosis of diabetic retinopathy. We identified previously used and new, disability and patient-related negative descriptors and assessed patterns of biased language in the EHR, comparing patients by retinopathy diagnosis (yes/no), and changes in patterns of language usage pre- and post- the retinopathy diagnosis. We also assessed differences between patients with type 2 diabetes at the intersection of blindness (ie, retinopathy diagnosis) and self-reported gender and race and ethnicity marginalization. RESULTS: The EHRs of patients with diabetic retinopathy were significantly more likely than those of patients with diabetes-only diagnoses to contain biased language, across queried negative descriptors. The biasing language was consistently more prevalent in EHRs of patients with diabetic retinopathy identifying as women, Black/African Americans and Hispanic compared to White men and more likely to occur following patients' retinopathy diagnosis. CONCLUSIONS: Our study indicates the presence of both disability- and intersectional biases in EHRs. We discuss findings' implications and suggest steps to address them.

Humans↗

PubMed2025

Covering medical care costs for participants in the eMERGE Network: Challenges for equity and implementation.

PURPOSE: To investigate the complexities of covering study-recommended medical care costs for individuals (in order to prevent lack of adherence due to financial reasons), which have received little attention. METHODS: We explored the deliberations, decisions, and challenges faced by the Electronic Medical Records and Genomics (eMERGE) Network during the implementation of a genomic research project recommending clinical care based on high-risk results defined largely by polygenic risk scores. Two surveys were disseminated to eMERGE sites: to identify preferences about payment for specific care recommendations (survey 1) and to understand the operational processes of covering medical care costs (survey 2). RESULTS: Paying for a subset of care recommendations for the funded study duration was identified as the most feasible approach for covering medical care costs for participants who received high-risk genomic results. Each eMERGE site, by necessity, used diverse approaches to pay for medical care costs. CONCLUSION: eMERGE researchers balanced competing concerns about bias, equity, study design, regulatory compliance, and cost in designing a unified approach to cover some of the recommended medical care costs in the study. Many implementation challenges were encountered. Findings can inform researchers and regulatory bodies about the implications and complications of covering medical care costs in translational research studies focused on prevention.

Humans↗

PubMed2025

Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability.

Informed, voluntary, ongoing consent is a central tenet of ethical research. However, consent processes are prone to exclusionary practices and inaccessibility. Consent materials are often too long and complex to foster understanding and ensure that people make truly informed decisions to participate in research. While this complexity is problematic for all people, these challenges are compounded for autistic people and people with intellectual disability. Consent materials and procedures rarely incorporate accommodations for processing and communication differences common in autism and intellectual disability. Failure to provide such accommodations ultimately threatens the conduct of ethical research. We describe lessons learned across multiple major U.S. research institutions that improved informed consent materials and procedures, with the goal of fostering responsible inclusion in research for autistic people and people with intellectual disability. We used these alternative materials and procedures in multiple research projects with samples of autistic people and people with intellectual disability. Each contributing team partnered with university human research participant protections personnel, accessibility experts, community members, and researchers to develop rigorous procedures for improving the readability and accessibility of informed consent materials. We present guidelines for designing consent materials and procedures and assert that participatory methods are vital to the success of ongoing accessibility initiatives. Adoption of understandable consent materials and accessible consent procedures can cultivate more equitable, respectful, and inclusive human research practices. Future work should expand on this work to design inclusive practices for populations with additional considerations.

autism↗

PubMed2025

Intersectionality in a sociogenomic world: How do race, disability, socioeconomic status, and polygenic prediction interact to affect perceptions of educational trajectories?

PURPOSE: Education is important for lifelong skills and economic growth; however, student placement decisions may be shaped by social biases. As genomic information captured via polygenic scores becomes more available, it may also inform student placement decisions. We assessed the intersectional effects of polygenic scores, race, disability, and socioeconomic status on US adults' views of educational trajectories using an online experimental survey design. METHODS: A total of 1367 US adults were randomized to one of 16 conditions and prompted to read a short vignette about a boy named Michael, also depicted in an image. Each condition varied Michael's race (Black/White), disability (wheelchair user/no), socioeconomic status (high/low), and polygenic score (high/low) for educational attainment (EA-PGS). After reading the vignette, the respondents were asked to answer multichoice questions about Michael's immediate and long-term educational trajectories. RESULTS: Variation in Michael's EA-PGS strongly influenced participants' expectations regarding (1) the most appropriate immediate educational program for Michael (ie, general, special, or gifted education), (2) whether he would graduate high school, and, if so, (3) the highest educational degree he would complete in his lifetime (associate, bachelor, master, or PhD). Across these responses, high EA-PGS was associated with more socially desirable outcomes, whereas the opposite was true for low EA-PGS. Depicting Michael in a wheelchair significantly influenced respondents' expectations that his most appropriate immediate educational trajectory would be special. There were significant interactions between Michael's race, disability, socioeconomic status, and the EA-PGS. CONCLUSION: Information about children's EA-PGS may affect their views about their immediate and long-term educational trajectories. The negative effects of low EA-PGS were comparable to those of high EA-PGS. The EA-PGS may be interpreted in ways that compound the existing stereotypes related to a child's race, disability, and socioeconomic status.

Humans↗