“Patient’s consent vital as gene-therapy in nascent stage”
NEW DELHI: Chief Justice of India D Y Chandrachud on Monday spoke passionately on the urgent need for universal access to gene therapy that helps correcting rare genetic disorders , a treatment which is exorbitantly costly and beyond the reach of most parents.
Mixing his over 40 years’ experience in legal profession, 24 of which as a HC and SC judge, with a decade long emotional attachment with his adopted girls afflicted with genetic disorder, the CJI virtually spoke for thousands of parents battling to provide their children a future better than what stars had foretold.
Delivering the inaugural address at “Gene Therapy & Precision Medicine Conference” at Bengaluru, Justice Chandrachud said, “The quest to treat rare diseases is futile if access to these treatments remains a challenge, especially outside major urban centres”.
He said 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 and asserted that access to essential treatments is part of the right to health guaranteed under right to life.
At the core of impeding universal access to gene therapy is its exorbitant cost. “Approved gene therapies in the West range from Rs 7 to 30 crores per treatment, making them unaffordable for most in India... Consequently, many families resort to crowdfunding to access this critical treatment,” he said.
While appreciating the govt efforts to provide insurance cover for such treatments up to Rs 50 lakhs, the CJI said effective addressing of the situation could only be through development of indigenous technologies tailored for our patient population.
Societal awareness of genetic disorders is essential for the socio-cultural support base for such patients, the CJI said. For developing cost-effective gene therapy, he said, “The industry must step up its support through Corporate Social Responsibility (CSR) initiatives or direct investment in startups. To encourage more industry participation, there should be proposals for tax incentives and benefits, especially since the market for rare disease treatments is relatively small.”
Lastly, he said for genetic therapy clinical trials, the fundamental right of a person to decide whether to undergo such treatment must not be ignored. “It is crucial that patients are fully informed about potential outcomes, risks, and alternatives. They must have the freedom to make decisions about their health without coercion, ensuring that their autonomy is always respected,” he said.
NEW DELHI: Chief Justice of India D Y Chandrachud on Monday spoke passionately on the urgent need for universal access to gene therapy that helps correcting rare genetic disorders , a treatment which is exorbitantly costly and beyond the reach of most parents.
Mixing his over 40 years’ experience in legal profession, 24 of which as a HC and SC judge, with a decade long emotional attachment with his adopted girls afflicted with genetic disorder, the CJI virtually spoke for thousands of parents battling to provide their children a future better than what stars had foretold.
Delivering the inaugural address at “Gene Therapy & Precision Medicine Conference” at Bengaluru, Justice Chandrachud said, “The quest to treat rare diseases is futile if access to these treatments remains a challenge, especially outside major urban centres”.
He said 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 and asserted that access to essential treatments is part of the right to health guaranteed under right to life.
At the core of impeding universal access to gene therapy is its exorbitant cost. “Approved gene therapies in the West range from Rs 7 to 30 crores per treatment, making them unaffordable for most in India... Consequently, many families resort to crowdfunding to access this critical treatment,” he said.
While appreciating the govt efforts to provide insurance cover for such treatments up to Rs 50 lakhs, the CJI said effective addressing of the situation could only be through development of indigenous technologies tailored for our patient population.
Societal awareness of genetic disorders is essential for the socio-cultural support base for such patients, the CJI said. For developing cost-effective gene therapy, he said, “The industry must step up its support through Corporate Social Responsibility (CSR) initiatives or direct investment in startups. To encourage more industry participation, there should be proposals for tax incentives and benefits, especially since the market for rare disease treatments is relatively small.”
Lastly, he said for genetic therapy clinical trials, the fundamental right of a person to decide whether to undergo such treatment must not be ignored. “It is crucial that patients are fully informed about potential outcomes, risks, and alternatives. They must have the freedom to make decisions about their health without coercion, ensuring that their autonomy is always respected,” he said.
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