Category: Reproductive and Disability Justice & Sickle Cell Disease

Suraj, five, was sent to the district hospital in Nuapada, western Odisha, after being ill with a persistent fever. He and his family had to run from one hospital to another, some even 250 kilometres from their hamlet. Finally, when his haemoglobin electrophoresis tests revealed SCD, he was admitted as a patient and referred for blood transfusions. Suraj’s tale demonstrates the difficulty that people like Suraj, who come from disadvantaged tribal communities, experience in accessing basic healthcare and diagnostics. Continue reading

Challenges exist around heritable gene editing, its potential medical applications, ethical implications, and the need for regulatory mechanisms in the field. In March this year I spoke at the Third International Summit on Human Genome Editing, held in London, about “The Role of Civil Society and Culture in Fostering Public Engagement on the Ethics of Human Genome Editing.” Continue reading