Chief Justice of India emphasises intersection of law, ethics and medical innovation in gene therapy for rare disease treatment

The industry should support through CSR initiatives or investments in start-ups to further innovation in gene therapy and rare diseases, he says

Emphasising the need for the intersection of law, ethics and medical innovation in gene therapy, Chief Justice of India (CJI) D.Y. Chandrachud on Saturday said it was essential to explore proposals for tax incentives and benefits to encourage industry participation in research and development for rare disease treatments.

Speaking after inaugurating a conference on ‘Gene Therapy and Precision Medicine’ organised by Narayana Nethralaya Foundation, Mr. Justice Chandrachud said such incentives would make it easier for companies to invest in research while ensuring that patients and society as a whole benefit from these efforts. “While society must be aware and empathetic, the industry should support through CSR initiatives or investments in start-ups to further innovation in gene therapy and rare diseases,” he said.

“While I am conscious of the fact that I speak to you and have been invited in my capacity as the Chief Justice of India, I also speak to you together with Kalpana [his wife] as parents of two wonderful children whom we have adopted, who have a genetic condition since their birth. They have been born with myopathy and Kalpana and I, over the last 10 years since they came into our lives, have been a constant part of their journey. So just as I speak to you as a person of the law, I will also speak to you in our capacity as parents,” he said.

Equitable access

Pointing out that there is a need to address the challenge of ensuring equitable access to advanced medical therapies such as gene therapy in India, the CJI said, “Ensuring equitable access to advanced medical therapies for all, including marginalised communities who face barriers in healthcare access, is essential... As gene therapies costing between ₹7 crore and ₹30 crore per treatment remain out of reach for most, we must prioritise the development of indigenous technologies and build partnerships to innovate affordable therapies.”

Quoting studies from the Union Tribal Affairs Ministry that have shown a high prevalence of sickle cell disease, a genetic blood disorder, among the Scheduled Tribes, the CJI said, “People from marginalised communities face persistent barriers in accessing healthcare. Social determinants of health factors outside the healthcare system, such as class, caste, gender, and regional location, often play a significant role in determining an individual’s health status.”

Custom duties and charges

“Recently, in a batch of petitions filed by parents of children with rare diseases, the Delhi High Court on March 4, 2024, clarified that Customs duties and charges should not be levied on medicines, drugs, and therapies for rare diseases, urging Customs authorities to ensure that these items are cleared expeditiously without unnecessary delays. These initiatives signify progress in our efforts to improve access to essential treatments. However, to effectively address these challenges, we must prioritise the development of indigenous, technologies specifically tailored to our patient population,” he CJI said.

State Health Minister Dinesh Gundu Rao said the government would explore possibilities of supporting research in gene therapy.

Published - September 21, 2024 10:54 pm IST