Data sharing in research is fraught with controversy. Academic success is premised on competitive advantage, with research teams protecting their research findings until publication. Research funders, by contrast, often require data sharing. Beyond traditional research and funding requirements, surveillance data have become contentious. Public health emergencies involving pathogens require intense genomic surveillance efforts and call for the rapid sharing of data on the basis of public interest. Under these circumstances, timely sharing of data becomes a matter of scientific integrity. During the COVID-19 pandemic, the transformative potential of genomic pathogen data sharing became obvious and advanced the debate on data sharing. However, when the genomic sequencing data of the omicron (B.1.1.529) variant was shared and announced by scientists in southern Africa, various challenges arose, including travel bans. The scientific, economic, and moral impact was catastrophic. Yet, travel restrictions failed to mitigate the spread of the variant already present in countries outside Africa. Public perceptions of the negative effect of data sharing are detrimental to the willingness of research participants to consent to sharing data in postpandemic research and future pandemics. Global health governance organisations have an important role in developing guidance on responsible sharing of genomic pathogen data in public health emergencies.
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http://dx.doi.org/10.1016/S2214-109X(22)00417-X | DOI Listing |
JMIR Res Protoc
January 2025
Hunter Alliance for Research and Translation, Hunter College of the City University of New York (CUNY), New York, NY, United States.
Background: Transgender and nonbinary individuals have received increasing attention within HIV research, with studies documenting the pervasive role stigma plays in creating and sustaining health inequities. However, the proliferation of HIV stigma research with this population has also raised concerns about research practices that may unintentionally stigmatize or retraumatize the very communities they are designed to benefit. Conducting stigma research is critical for generating accurate information about HIV epidemiology, risk and protective factors, and intervention strategies for transgender and nonbinary individuals.
View Article and Find Full Text PDFPurpose: In response to the need to support health care professionals during the COVID-19 pandemic, an innovative, peer-led discussion group program for medical school faculty, called CIRCLE (Colleague Involved in Reaching Colleagues through Listening and Empathy), was developed at Rutgers Health. This article describes results of a qualitative analysis of the participants' experiences, explores virtual communication platform use during this peer support program, and identifies the program's beneficial elements.
Method: CIRCLE was inaugurated in October 2020 at Rutgers New Jersey Medical School and Rutgers Robert Wood Johnson Medical School using evidence-informed topics.
PLoS Genet
January 2025
Program in Genetics and Genome Biology, SickKids Research Institute, Toronto, Ontario, Canada.
Innovative and easy-to-implement strategies are needed to improve the pathogenicity assessment of rare germline missense variants. Somatic cancer driver mutations identified through large-scale tumor sequencing studies often impact genes that are also associated with rare Mendelian disorders. The use of cancer mutation data to aid in the interpretation of germline missense variants, regardless of whether the gene is associated with a hereditary cancer predisposition syndrome or a non-cancer-related developmental disorder, has not been systematically assessed.
View Article and Find Full Text PDFPLoS One
January 2025
Amsterdam University Medical Centers, Department of Infectious Diseases, Amsterdam Infection and Immunity Institute, University of Amsterdam, Amsterdam, The Netherlands.
Introduction: Oral pre-exposure prophylaxis (PrEP) prevents Human Immunodeficiency Virus (HIV) acquisition. In the Netherlands, PrEP is accessible through the national PrEP program (NPP) or general practitioners (GP). Still, some men who have sex with men (MSM) entering HIV care indicated having PrEP experience prior to diagnosis.
View Article and Find Full Text PDFPLoS One
January 2025
Neuroscience Discovery, Janssen Research & Development, Janssen Pharmaceutica, Beerse, Belgium.
The MAPT gene encodes Tau protein, a member of the large family of microtubule-associated proteins. Tau forms large insoluble aggregates that are toxic to neurons in several neurological disorders, and neurofibrillary Tau tangles represent a key pathological hallmark of Alzheimer's disease (AD) and other tauopathies. Lowering Tau expression levels constitutes a potential treatment for AD but the mechanisms that regulate Tau expression at the transcriptional or translational level are not well understood.
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