Can an Infectious Disease Genomics Project Predict and Prevent the Next Pandemic?

Infectious diseases need a globally coordinated genomic-based movement linking sequencing efforts to development of response tools to mitigate the impact of existing and emerging threats

Social Media, Public Health Research, and Vulnerability: Considerations to Advance Ethical Guidelines and Strengthen Future Research

The purpose of this article is to build upon prior work in social media research and ethics by highlighting an important and as yet underdeveloped research consideration: how should we consider vulnerability when conducting public health research in the social media environment? The use of social media in public health, both platforms and their data, has advanced the field dramatically over the past 2 decades. Applied public health research in the social media space has led to more robust surveillance tools and analytic strategies, more targeted recruitment activities, and more tailored health education. Ethical guidelines when using social media for public health research must also expand alongside these increasing capabilities and uses. Privacy, consent, and confidentiality have been hallmarks for ethical frameworks both in public health and social media research. To date, public health ethics scholarship has focused largely on practical guidelines and considerations for writing and reviewing social media research protocols. Such ethical guidelines have included collecting public data, reporting anonymized or aggregate results, and obtaining informed consent virtually. Our pursuit of the question related to vulnerability and public health research in the social media environment extends this foundational work in ethical guidelines and seeks to advance research in this field and to provide a solid ethical footing on which future research can thrive

Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology

INTRODUCTION: Receiving a diagnosis of autism in adulthood is increasingly common for a subset of individuals who were either misdiagnosed in childhood or missed out on a diagnosis altogether. This qualitative study, coproduced with autistic people, invites late-diagnosed autistic adults to share their life histories to (1) understand better the consequences of living without a diagnosis, (2) elucidate what precipitates an autism diagnosis in mid-to-late adulthood and (3) identify the perceived impact of receiving that diagnosis. METHODS AND ANALYSIS: Oral histories have been a successful way to uncover overlooked and marginalised voices. We therefore adopt qualitative, oral history methodology in this study to understand these adults' experiences, especially of living in an era when autism was not well known. We will recruit 24 participants who will (1) have been born before 1975, (2) have received a clinical, autism diagnosis after the age of 35, (3) be English-speaking and (4) have spent most of their childhood and adulthood living in Australia. Participants will take part in four sessions, including the main, qualitative, oral history interview, through a range of possible formats to facilitate inclusion. The interview data will be analysed using reflexive thematic analysis. ETHICS AND DISSEMINATION: The protocol has received institutional research ethics approval from Macquarie University's Human Research Ethics Committee (Ref.: 52019556310562). This study will yield understanding of the life experiences of autistic adults, especially middle-aged and older Australians, should inform more effective diagnostic practices and provide insight into the key factors that might promote resilience and enhance quality of life in autistic people. The findings will be disseminated to academic and clinical audiences through journal articles and conference presentations and to the autistic and autism communities through accessible reports. The interviews will also be prepared for digital archiving, which will enable ongoing access for future generations and communities