CJI Chandrachud advocated gene therapy, said there is a need to create awareness about rare diseases

New Delhi: Chief Justice of India DY Chandrachud on Monday called gene therapy that helps cure genetic disorders a necessity. The CJI said that we need to create awareness about rare diseases in society. We cannot remain silent about genetic disorders. The Chief Justice spoke of almost thousands of parents who are struggling to provide a better future to their children. The CJI has more than 40 years of experience in the legal profession, 24 of which were as a judge of the High Court and Supreme Court. During this, DY Chandrachud, with a decade-long emotional attachment with his/her adopted girls suffering from genetic disorders, put his/her point in front of the people. Delivering the inaugural address at the ‘Gene Therapy and Precision Medicine Conference’ in Bengaluru, Chief Justice Chandrachud said that the quest to cure rare diseases is futile if access to these treatments remains a challenge, especially outside major urban centers. he/she said that factors outside the health system such as class, caste, gender and regional location often play an important role in determining a person’s health status. he/she stressed that access to necessary treatments is part of the right to health guaranteed under the right to life.”

‘Gene therapy treatment is not affordable for everyone in India’
CJI Chandrachud further said that the fundamental reason hindering universal access to gene therapy is its exorbitant cost. Gene therapy in the West costs between Rs 7 and 30 crore per treatment, which is unaffordable for most people in India. As a result, many families resort to crowdfunding to access this crucial treatment. Appreciating the government’s efforts to provide insurance cover of up to Rs 50 lakh for such treatments, the Chief Justice said that the situation can only be effectively addressed through the development of indigenous technologies tailored for our patient population.

Why industry participation is important
The Chief Justice said social awareness about genetic disorders is essential for a socio-cultural support base for such patients. To develop cost-effective gene therapies, he/she said the industry should extend its support through Corporate Social Responsibility (CSR) initiatives or direct investment in startups. To encourage greater industry participation, there should be offers of tax incentives and benefits, especially since the market for rare disease treatments is relatively small.

Finally, he/she said that for genetic medicine clinical trials, an individual’s fundamental right to decide whether to undergo such treatment should not be ignored. It is important that patients are fully informed about the potential outcomes, risks and alternatives. They should have the freedom to make decisions about their health without coercion, ensuring that their autonomy is always respected.