Precision Medicine, Biobanks, and Regulatory Challenges in India
- 26 Oct 2024
In News:
Precision medicine is bringing in a new era of personalised healthcare. The field began to take concrete shape when scientists were wrapping up the Human Genome Project.
Introduction to Precision Medicine:
- Precision Medicine is a novel approach to healthcare that tailors treatments and preventive strategies based on an individual’s genetics, environment, and lifestyle, instead of using a one-size-fits-all approach.
- It leverages technologies like genomics, gene editing (CRISPR), and mRNA therapeutics to address various diseases such as cancer, chronic diseases, and genetic disorders.
- Recent breakthroughs include gene therapy for restoring vision and stem cell transplants for reversing diabetes, demonstrating the transformative potential of precision medicine.
Role of Biobanks in Precision Medicine:
- Biobanks are repositories storing biological samples (blood, DNA, tissues) along with associated health data. These samples are crucial for research and development of personalized treatments.
- Large and diverse biobanks are essential for ensuring that precision medicine benefits a wide demographic, as data from homogenous groups could limit the applicability of findings.
- Recent studies using biobank data have led to breakthroughs, such as identifying rare genetic disorders and developing organoid models for high-throughput drug screening.
Precision Medicine and Biobanks in India:
- Market Growth: India’s precision medicine market is growing at a CAGR of 16%, expected to surpass USD 5 billion by 2030, contributing 36% to the national bioeconomy.
- Policy Framework: The government’s BioE3 policy aims to promote biomanufacturing, with a focus on precision therapeutics and related technologies like gene editing and cancer immunotherapy.
- Biobank Initiatives:
- Genome India Programme: Completed sequencing of 10,000 genomes from 99 ethnic groups, aimed at identifying treatments for rare genetic diseases.
- Phenome India Project: Focused on collecting 10,000 samples for improving prediction models for cardio-metabolic diseases.
- Paediatric Rare Genetic Disorders (PRaGeD) Mission: Aiming to identify genes that could help develop targeted therapies for genetic diseases in children.
Regulatory and Ethical Challenges in Biobanking:
- India’s biobanking regulations are inconsistent, hindering the full potential of precision medicine. Unlike countries like the U.K., U.S., and Japan, which have comprehensive laws addressing issues like informed consent, data protection, and privacy, India lacks a cohesive regulatory framework.
- Informed Consent Issues: In India, participants provide samples without full knowledge of how their data will be used, who will have access to it, and for how long it will be stored. This lack of transparency undermines public trust in biobank research.
- Ethical Concerns: Without a clear regulatory framework, there is a risk of misuse of biological samples, such as non-consensual data sharing and sample mishandling.
- International Implications: The absence of robust laws allows foreign pharmaceutical companies to access Indian biobank data and samples without ensuring that the Indian population benefits from the resulting research or profits.
Global Comparison of Biobank Regulations:
- International Standards: Countries like the U.K., U.S., and Japan have established comprehensive biobank regulations, addressing:
- Informed consent for sample collection and data usage.
- Privacy protection and secure storage of genetic information.
- Withdrawal rights for participants at any stage of research.
- India’s biobank regulations lack clear provisions for data protection and participant rights, limiting the effectiveness of research and undermining public confidence in biobanks.
Amazon Future Engineer Program (Phase 3)
- 23 Oct 2024
In News:
- The National Education Society for Tribal Students (NESTS) launched the third phase of the Amazon Future Engineer Program in 50 Eklavya Model Residential Schools (EMRS).
- Schools involved are spread across Andhra Pradesh, Gujarat, Karnataka, Madhya Pradesh, Odisha, Telangana, and Tripura.
Program Focus Areas:
- Emerging Technologies: The third phase introduces tribal students to key areas like:
- Blockchain technology
- Artificial Intelligence (AI)
- Coding and block programming
- The program is designed to equip students with skills in computer science fundamentals.
Teacher Training:
- A four-day in-person training workshop for teachers was conducted to empower them with the skills necessary to teach emerging technologies effectively.
- Teachers also participated in the EMRS Coders Expo, showcasing top student coding projects from the previous academic year.
Target Audience:
- Students: The program targets students from grades 6 to 9. Class 10 students will participate in project-based virtual sessions aligned with the CBSE AI Skills Curriculum.
- The goal is to enhance students' understanding of computer science and technology and prepare them for STEM (Science, Technology, Engineering, Mathematics) careers.
Program Expansion:
- Future Plans: The program will be rolled out in the next phase to cover a total of 410 EMRSs across India.
- Impact: Over 7,000 students in grades 6 to 8 have already benefited from the program’s introduction to computer science and block programming.
Key Goals of the Program:
- Empower Tribal Students: Provide tribal students with modern technological skills to prepare them for future STEM careers.
- Capacity Building: Equip both teachers and students with the knowledge and skills to engage with emerging technologies.
- Fostering Technological Literacy: The initiative aims to foster technological literacy and modernize education in tribal areas.
Recognition:
- During the event, Top 3 Student Coding Projects were felicitated for their creativity and innovation.
- The Top 3 IT Teachers were also recognized for their dedication in guiding students through the program.
Partnership with Amazon:
- The program is a collaboration between NESTS and Amazon, showcasing a joint effort to improve educational access and technological skill development among tribal students.