Edited by: Angeline Ferdinand and Evie Kendal
Advances in genetic and epigenetic testing carry with them a plethora of ethical and legal challenges. One of the major clinical applications for this field is in the area of personalised or precision medicine, including targeted cancer treatments. However, both testing and the translation of results into meaningful therapeutic options are currently unequally distributed, with marginalised communities disproportionately experiencing harm from genetic studies, while also experiencing fewer benefits from research due to barriers in accessing personalised medicine and lack of representation in reference databases. There are also broader resource allocation concerns when comparing outcomes for citizens in countries with privately or publicly funded high technology care, versus low resource settings where even basic health needs remain unmet. Where emerging genetic and epigenetic technologies should fit within this paradigm remains an open question.
The COVID-19 crisis has highlighted many disparities in healthcare resourcing across the globe and ongoing justice concerns regarding access to vaccines and treatments. However, it has also demonstrated the need to continue genetics research, despite the high costs involved. This symposium considers fundamental issues of health justice as they pertain to genetic and epigenetic research, testing and treatment, with a particular focus on pursuing equitable distribution of the burdens and benefits of this research across diverse populations.
This call for papers is for a topical collection in International Journal for Equity in Health, edited by Angeline Ferdinand (University of Melbourne) and Evie Kendal (Swinburne University of Technology). Full paper submissions are due 31st March, 2023 and authors are encouraged to contact the editors with proposals in advance of this date at a.ferdinand@unimelb.edu.au and ekendal@swin.edu.au.
Submissions are invited for both short comment pieces and longer research papers. Topics of interest include, but are not limited to:
• Issues in informed consent, data privacy and clinical research ethics for emerging genetic and epigenetic technologies
• Reproductive bioethics and the ethics of emerging genetic technologies
• The impact of technology on community and belonging
• Biobanking, repatriation of biospecimens, cryopolitics and data ownership
• Cultural awareness in epigenetics research, clinical genetics and policy, especially on marginalised communities
• Public engagement and education on epigenetics and direct-to-consumer genetic testing
Submissions should be made in .DOC, .DOCX or RTF format, double-spaced and styled according to IJEqH’s guidelines, available here: https://0-equityhealthj-biomedcentral-com.brum.beds.ac.uk/submission-guidelines/preparing-your-manuscript