Adopting a purely scientific view of human genome editing risks ignoring ethical, societal, and equity considerations, writes Sarojini Nadimpally
Sarojini Nadimpally | the BMJ | May 3, 2023
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.” In my presentation on public engagement in somatic, germline, and heritable human genome editing, I questioned who the “public or publics” were that we hoped to “engage” with.
The category of “the public” is intersectional, not homogenous, with differences and overlapping identities including race, caste, class, religion, gender identity, disability status, ethnicity, refugee or migratory status, and more. These identities, which are often ignored in the process of developing genome editing, take centre stage when we consider the implications of these technologies. Marginalisation is relevant in the domain of technological advancement, as marginalised communities are largely at the fringes of “public” engagement with genome editing.
This was evident during the summit. A session on genome editing strategies for sickle cell disease (SCD) highlighted a success story of the experimental gene editing technique CRISPR for the treatment of SCD. One patient shared her positive experience of being treated for SCD with CRISPR in the US, where she volunteered to undergo clinical trials. She shared how this helped her cope with severe, debilitating pain as she struggled to care for her four children.12
In contrast, I shared the story of a 5 year old boy from a poor tribal family living in a rural district in India, who had to travel 250 km (155 miles) from his village to undergo haemoglobin electrophoresis to confirm or rule out SCD at an institute. I pointed out that people such as this boy must travel long distances to access diagnostic tests. Without adequate healthcare systems, access to medicine such as hydroxyurea, and regular blood transfusions, the treatment trajectory involves travelling long distances and catastrophic out-of-pocket costs, among other obstacles. CRISPR gene editing for SCD may offer solutions for the people who can afford it, but concerns remain around access and equity apart from ethical concerns, as genome editing may not be widely available or affordable for marginalised individuals.