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Ethics and equity in rare disease research and healthcare

Rapid advances in next-generation sequencing technology, particularly whole exome sequencing and whole genome sequencing, have greatly affected our understanding of genetic variation underlying rare genetic diseases. Herein, we describe ethical principles of guiding consent and sharing of genomics research data. We also discuss ethical dilemmas in rare diseases research and patient recruitment policies and address bioethical and societal aspects influencing the ethical framework for genetic testing.

Safety of live attenuated herpes zoster vaccine in Australian adults 70-79 years of age: An observational study using active surveillance

To assess the safety of live attenuated herpes zoster vaccine live (ZVL) through cumulative analysis of near real-time, participant-based active surveillance from Australia's AusVaxSafety system. ZVL was funded in Australia for adults aged 70 years from November 2016, with a time-limited catch up programme for those up to 79 years. This cohort study monitored safety in the first two programme years through active surveillance at 246 sentinel surveillance immunisation sites.

Navigating complexity to support justice-involved youth with FASD and other neurodevelopmental disabilities: needs and challenges of a regional workforce

Young people with Fetal Alcohol Spectrum Disorder (FASD) can face significant challenges in their lives, including overrepresentation in the justice system from a young age. Police questioning and court proceedings can be difficult for these young people to navigate. Practice and policy responses are necessary to identify these individuals, provide appropriate support/rehabilitation, and upskill the justice workforce. The aim of this research was to determine the unmet workforce development needs of a regional workforce providing care and support to youth involved with the justice system.

The Deep Genome Project.

The Deep Genome Project—to deliver the functional biological annotation of all human orthologous genomic elements in mice

AMEND study protocol: A case-control study to assess the long-term impact of invasive meningococcal disease in Australian adolescents and young adults

This study aims to address this evidence gap by assessing the clinical, physical, neurocognitive, economic and societal impact of invasive meningococcal disease

Meta-analysis of epigenome-wide association studies in neonates reveals widespread differential DNA methylation associated with birthweight

We find that DNA methylation in neonatal blood is associated with birthweight, with a difference in birthweight ranging from -183 to 178 grams per 10% increase in methylation

Benefits of caseload midwifery to prevent fetal alcohol spectrum disorder: A discussion paper

Drawing on previous research, caseload midwifery has potential to support the prevention of fetal alcohol spectrum disorder through continuity of care

Is immunisation education in midwifery degrees adequate?

Midwifery university education is an important arena for developing future vaccine advocates

Applications of Immunopharmacogenomics: Predicting, Preventing, and Understanding Immune-Mediated Adverse Drug Reactions

In this review, we present the latest evidence for human leukocyte antigen associations with Immune-mediated adverse drug reactions

Relevance of Aboriginal Peer-Led Parent Support: Strengthening the Child Environment in Remote Areas

This research highlights the critical emerging role of peer support workers in home visiting family support in a remote area of Australia