Experts in health and science came together at a Centre for Bionetworking-organised event in India, to discuss for the first time the challenges of applying stem cell research to the needs of patients with terminal or incurable illnesses. Experts in health and science discussed the challenges of applying stem cell research to patient needs at an event in India, organised by the Centre for Bionetworking.
Scientists, clinicians and patient representatives from a diverse range of professional and health backgrounds gathered at St. John’s Research Institute in the city of Bangalore on Saturday, 5th October for the ‘Patient needs and stem cell research workshop’, organised by the Centre for Bionetworking.
The workshop, run in collaboration with SOCHARA – a Bangalore-based community health organisation, focused on how patient organisations can best address the unmet needs of patients, and the regulation of stem cell research and experimental therapy.
Speaking about this in the context of India, one expert in bioethics said: “Patients need to have better access to information about their conditions. Affordable treatment and quality healthcare should be the priorities. Stem cell therapy can be an option for those with no other recourse.”
Those participating in the workshop also agreed that the promise of stem cell research in finding a treatment for currently incurable conditions such as spinal cord injuries, muscular dystrophy and diabetes must be balanced with maintaining high ethical standards.
According to one diabetes patient: “We as patients need the technology fast …the question is now how fast can you go ethically.”
Discussion soon turned to how stem cell research and experimental therapy could be best regulated. Most agreed that, while there is currently significant innovative scientific research taking place in India, continuing to develop technical expertise is also an important goal for the future. There needs to be greater communications between different stakeholders in order to exchange experiences and skills.
Over the course of the day, participants also deliberated the importance of raising awareness among patients in India with respect to the need for early diagnosis, available healthcare options, and how to evaluate the current safety and efficacy of stem cell treatment.
‘Patient needs and stem cell research’ was the first of four events that the Centre for Bionetworking will be organising in the coming year. Other workshops will explore similar questions around patient needs and stem cell research in the context of Korea, China and Japan.
Professor Margaret Sleeboom-Faulkner, Director of the Centre for Bionetworking, said that the aim of these workshops was to gain a greater understanding of how patient needs vary according to different national contexts in Asia.
She said: “Often it is unclear what patients’ needs are and difficult to decide how to invest financial and human resources in the most effective way. Society may not be aware of patient needs and, even if they are known, it is not guaranteed that available therapies in a country reach the patient.”