People living with sickle cell and thalassaemia, and their families, will face having to make possible ethical decisions about engagement with innovative therapies and/or genomic cures. In the United Kingdom and other high income countries, screening services in antenatal care, genetic testing, treatments such as hydroxyurea for sickle cell, blood transfusions for both sickle cell and thalassaemia, specialized clinical care and public advocacy have entailed that the conditions can now be viewed as chronic and long-term. In many other places in the world, without access to adequate healthcare, sickle cell and some thalassamias can still be acute and disabling. There are furthermore inequalities between the Global North and Global South in who gains access to not only care but also cure. In the Global North, innovative genomic developments have entailed a shift of research attention so it is focused on improvements in access to therapies, as well as promissory cures. Yet, these curative possibilities are not without risks, can represent functional cures and also need psychosocial support, and care for individuals and families across the life-course, to ensure a better quality of life. We have thus argued for the development of a bioethics of cure.
Berghs, M. (2021). Who gets cured? COVID-19 and developing a critical medical sociology and anthropology of cure. Front. Sociol.5, 613548.
Berghs, M. (2022). Let’s Get Back to Normal? COVID-19 and the Logic of Cure. Frontiers in Sociology, 7, 782582.
Frontiers | Let’s Get Back to Normal? COVID-19 and the Logic of Cure