For the past three decades, the politics of preconception and prenatal diagnostic techniques have been an issue that we, as feminists have addressed quite centrally. Over the years, Sama’s work has involved highlighting and examining the intersections between sex selection technologies, prenatal screening, and testing in the context of in vitro fertilization (IVF) and embryo transfers (ET), from the lens of reproductive and disability justice.
One of our current areas of focus is bio and genetic technology, as well as the issue of pre-marital and prenatal screening for genetic ‘disorders’/diseases in the context of Sickle Cell Disease (SCD), specifically screening, public health interventions, and reproductive governance. Based on our research and work in the communities on these issues, we are organising a series of consultations and webinars on the theme of Interrogating SCD as a public health, reproductive justice, and disability justice issue.
Our first webinar focused on Conceptual Constitution of Disability: A Public Health Understanding of Sickle Cell ‘Disease’ & Multiple Sclerosis, and the physical, emotional, and social challenges faced by those afflicted with these conditions. It also discussed the nature of support and legal and policy systems that can significantly enhance their quality of life.
The second webinar in this series is on Screen to Treat or Stigmatise?: Ethical Dilemmas, Reproductive Governance, and Genetic Blood ‘Disorders’ on August 30, 2024. In this webinar, we will be discussing ethical issues related to the issue of population screening, the concept of “elimination,” with particular reference to the prenatal testing ecosystem and eugenics.
Facilitator: Dr. Amar Jesani
Independent consultant, researcher, and teacher of bioethics and public health
Discussant: Laxmi Murthy
Journalist and researcher based in Bangalore
Speakers:
Prof. Sangeeta Chattoo
Senior Research Fellow/Associate Professor, Department of Sociology, University of York
Topic: The social and ethical reverberations of community-based screening for SCD as a ‘tribal disease’
Dr. Yogesh Jain
Pediatrician and public health physician, Co-founder of Jan Swasthya Sahyog and Sangwari, Chhattisgarh
Topic: Policy and ethical issues in Sickle cell screening in India
Keertana KT and Sarojini N
Sama Resource Group for Women & Health
Topic: Premarital and prenatal screening or preventing births?: Reproductive governance and sickle cell care in India