Representation of Women in Published Articles at 3 Academic Pediatric Journals: 2001 to 2022.

OBJECTIVE: To evaluate the representation of women authors and editorial board members at 3 pediatric journals. METHODS: We conducted a retrospective review of original research articles published in Pediatrics, The Journal of Pediatrics, and JAMA Pediatrics from 2001 to 2022. We analyzed five 1-year intervals and inferred the binary gender of authors by first name. Cochran-Armitage tests evaluated trends in gender proportion of authorship and editorial board membership over time. Pearson's χ2 tests compared United States (US) authorship position and faculty rank as determined by Association of American Medical Colleges' data. RESULTS: From 2001 to 2022, 4426 original research articles were studied (exclusion rate <1%). There was a 23.7%, 15.9%, and 28.8% increase in proportion of women as first authors, senior authors, and editorial board members globally, with all trends significant over time (P < .01). In 2022, US women were 67.3% of first authors, only slightly lower than the 68.6% of women junior faculty (P = .01). US women were 48.0% of US senior authors, equivalent to the 47.5% of US women senior faculty (P = .18). US women represented 47.4% of US editorial board members, equivalent to their percentage as senior faculty (P = .98). CONCLUSIONS: The percentage of US and international women authorship and editorial board membership has steadily increased. The percentage of US women as junior faculty and first authors is almost equivalent. The percentage of US women as senior faculty, senior authors, and editorial board members is equivalent but significantly reduced from their junior faculty representation.

Diagnosis, treatment and disclosure: A qualitative exploration of participant challenges in a Monogenic Diabetes Registry.

PURPOSE: Maturity-onset diabetes of the young (MODY) represents a heterogenous group of monogenic diabetes. Despite its autosomal dominant inheritance, many MODY participants in the University of Chicago Monogenic Diabetes Registry have no family members enrolled. We aimed to gather data on the Registry participants' experiences in (1) receipt of an accurate diagnosis, (2) decisions regarding disclosure of their MODY genetic test results with biological relatives, and (3) recommendations toward our Registry's processes and outreach. METHODS: We conducted 20 one-on-one semistructured interviews with adult Registry participants. RESULTS: All participants found navigating the health care system challenging because of the providers' unfamiliarity with MODY and dismissal of its importance post diagnosis. All had shared their results with at least 1 relative, however many found their relatives resistant to engaging with their providers. Participants wanted to receive targeted information on their condition and connect with other participants who have faced similar diagnostic and treatment challenges. CONCLUSION: Our results demonstrate that our probands faced resistance to reclassification of their diabetes from both health care providers and relatives. In an effort to improve cascade testing, the Registry is designing a portal to facilitate participant-research team communication and provide additional supports for participants to involve family members in testing.

Investigator and participant expectations for returning non-genetic results: insights from the Rare and Atypical Diabetes Network (RADIANT) study.

Objectives/Goals: The Rare and Atypical DIAbetes NeTwork (RADIANT) aims to discover the underlying pathoetiology of atypical diabetes by conducting both genotyping and non-genetic deep phenotyping. While the return of genetic test results in research settings has been investigated, the return of non-genetic results (RoR-NG) has received less attention. We explore the RoR-NG with RADIANT investigators and participants. Methods/Study Population: We conducted one-on-one interviews with 10 adult RADIANT participants and 10 RADIANT investigators. Participants also completed two health literacy screening tools and a survey on perspectives regarding return of results (RoR). Investigators completed one survey on experience and confidence in explaining clinical tests utilized in the RADIANT study and another survey on perspectives regarding RoR. Results: Most participants were non-Hispanic White. All participants had high scores on health literacy screens. Both RADIANT participants and investigators expressed strong support for RoR-NG. RADIANT participants and investigators acknowledged the different roles and responsibilities between research and clinical care for interpreting and acting on non-genetic results. However, the lines between clinical care and research in returning and acting on results were often blurred by both participants and investigators. Discussion/Significance: Our study provides important insight into how both investigators and participants simultaneously distinguish and blur clinical and research roles and responsibilities when discussing non-genetic research results and the return of these results. Further study should engage individuals from diverse racial and ethnic backgrounds and with varying levels of health literacy to understand how best to support all participants when returning research results.