Note4Students
From UPSC perspective, the following things are important :
Mains level: Significance of biobanks;
Why in the News?
Precision medicine is ushering in a new era of personalized healthcare, with its foundations taking shape during the completion of the Human Genome Project by scientists.
What is the current legal framework governing biobanks in India?
- Lack of Comprehensive Legislation: India lacks specific, comprehensive laws governing biobanks. The current framework consists of guidelines rather than enforceable laws, creating gaps in the regulation of biobanking practices.
- National Ethical Guidelines by ICMR: The Indian Council for Medical Research (ICMR) has issued guidelines on ethical practices in biomedical research involving human participants. However, these guidelines are not legally binding and do not address all aspects of biobanking, such as long-term storage and data sharing.
- Department of Biotechnology (DBT) Standards: The DBT has certain practices in place for data storage and analysis, but these also lack enforceability and do not fully cover issues such as informed consent and privacy.
- Absence of a Single Regulatory Authority: India currently does not have a dedicated regulatory authority to oversee biobanks, which leads to inconsistencies and limited oversight in biobanking activities.
How do privacy concerns impact biobank operations and precision medicine?
- Informed Consent Issues: Participants often give consent without detailed information about how their biological samples and associated data will be used, who will have access, and for how long. This lack of transparency raises privacy concerns.
- Genetic Data Privacy Risks: Genetic information can reveal intimate details about an individual’s health and predisposition to diseases, potentially affecting their family members. If data privacy is not robustly protected, it may lead to genetic discrimination in insurance or employment.
- Data Sharing Without Proper Regulation: In the absence of clear legal provisions, data or samples could be shared without proper consent, risking misuse by pharmaceutical companies or research organizations, including foreign entities.
- Impact on Public Trust: Weak data and privacy protections may reduce public willingness to participate in biobank projects, thus limiting the scale and diversity necessary for effective precision medicine research.
What are the ethical implications of biobanking practices in India?
- Ownership and Benefit Sharing: Without legal protections, there is ambiguity regarding the ownership of biological samples. Individuals contributing samples may not receive benefits from commercial applications resulting from their data, raising ethical concerns about fair compensation.
- Consent Transparency: Participants may not fully understand the scope of their consent, especially regarding future uses of their samples and data. This lack of clarity can be considered ethically problematic, as it may involve the exploitation of participants’ contributions.
- Risk of Misuse or Mismanagement: Inconsistent regulations and the absence of penalties for ethical violations create a risk of mishandling samples, unauthorized data access, and exploitation, which may compromise research integrity.
- Discrimination Risks: Genetic information obtained from biobanks could be used to discriminate against individuals based on their health risks or genetic traits, which raises concerns about ethical and legal safeguards.
Way forward:
- Establish Comprehensive Legislation: Develop and implement a comprehensive legal framework specifically governing biobanks, including clear guidelines on informed consent, data protection, ownership rights, and benefit sharing.
- Create a Regulatory Authority: Establish a dedicated regulatory authority to oversee biobank operations, ensuring compliance with ethical standards and legal requirements.
Get an IAS/IPS ranker as your 1: 1 personal mentor for UPSC 2024
Attend Now
Note4Students
From UPSC perspective, the following things are important :
Prelims level: Definition of Rare Diseases
Mains level: Issues related to rare disease;
Why in the News?
The Delhi High Court recently issued directives to enhance the availability of “orphan drugs” to combat rare diseases.
About the Delhi High Court Verdict:
- The Delhi High Court issued directions aimed at improving the availability of “orphan drugs,” which are used to treat rare diseases.
- This intervention seeks to address challenges related to the high cost of these treatments and the barriers to access for patients with rare diseases in India.
Rare Diseases in India and Their Classification:
- Definition: According to the World Health Organization (WHO), rare diseases are debilitating, lifelong conditions that affect 1 or fewer individuals in 1,000.
- Conditions Recognized as Rare Diseases in India: Approximately 55 conditions, including Gaucher’s disease, Lysosomal Storage Disorders (LSDs), and certain muscular dystrophies, are classified as rare diseases.
- National Registry: The Indian Council of Medical Research (ICMR) manages the National Registry for Rare and Other Inherited Disorders (NRROID), which has documented 14,472 patients with rare diseases.
Classification of Rare Diseases in India:
- Group 1: Diseases that can be treated with a one-time curative procedure (e.g., certain enzyme replacement therapies).
- Group 2: Conditions requiring long-term or lifelong treatment, which are relatively less expensive and have documented benefits. Regular medical check-ups are necessary for patients.
- Group 3: Diseases for which effective treatments are available, but they are highly costly and require ongoing, lifelong therapy. Selecting beneficiaries for these treatments presents a challenge due to the high costs.
Current Funding Policy in India:
- National Policy for Rare Diseases (NPRD) 2021: Launched to provide financial support for the treatment of rare diseases. Patients receiving treatment at designated Centres of Excellence (CoE) can get financial assistance up to Rs 50 lakh.
- Centres of Excellence: The CoEs include institutions such as AIIMS in Delhi, PGIMER in Chandigarh, and the Institute of Postgraduate Medical Education and Research at Kolkata’s SSKM Hospital.
- Crowdfunding and Voluntary Donations Portal (2022): The Health Ministry launched a digital platform that allows donors to contribute toward the treatment of rare disease patients at CoEs. The portal provides details about patients, their conditions, estimated treatment costs, and bank account information of the CoEs.
Did you know?
- Murine Typhus (a rare disease) is a flea-borne bacterial disease caused by Rickettsia typhi, transmitted through infected flea bites, primarily from rodents and not contagious between humans.
- A 75-year-old man from Kerala’s capital Thiruvananthapuram was recently diagnosed with Murine Typhus after travelling to Vietnam and Cambodia.
|
Challenges Associated with Orphan Drugs:
- Limited Treatment Options: Therapies are available for fewer than 5% of rare diseases, resulting in less than 10% of patients receiving disease-specific treatment.
- High Treatment Costs: Many existing therapies for rare diseases are prohibitively expensive, putting a significant financial burden on patients and their families.
- Regulatory Delays: Approval processes, such as those from the Drug Controller General of India (DCGI), can be slow. For instance, delays in approving US-based Sarepta Therapeutics’ medicines in India have affected the timely availability of treatments.
- Bureaucratic Hurdles: Decision-making delays and administrative red tape further complicate access to necessary drugs, impacting patient care.
- Challenges in Beneficiary Selection: Due to high treatment costs, identifying and prioritizing beneficiaries for financial assistance is difficult, potentially leaving some patients without support.
Way forward:
- Streamline Regulatory Approvals: Expedite the approval process for orphan drugs by reducing bureaucratic hurdles and establishing a fast-track mechanism for essential treatments, ensuring timely access to life-saving medications.
- Increase Financial Support and Expand Coverage: Enhance the funding cap under the National Policy for Rare Diseases and extend financial assistance to more patients, while encouraging public-private partnerships and innovative funding mechanisms like insurance coverage for rare disease treatments.
Get an IAS/IPS ranker as your 1: 1 personal mentor for UPSC 2024
Attend Now
Note4Students
From UPSC perspective, the following things are important :
Prelims level: Features of the RTI
Mains level: Issues related to RTI;
Why in the News?
Governments are undermining the RTI Act by delaying the appointment of information commissioners, causing commissions to struggle with increasing backlogs, according to a 2023-24 report of Satark Nagrik Sangathan.
About Satark Nagrik Sangathan (SNS):
- Satark Nagrik Sangathan (SNS) is not a government-based organization; rather, it is a citizens’ organization focused on promoting transparency, accountability, and good governance in India.
- A citizen organization is a non-governmental group formed by individuals who come together to advocate for specific causes, promote social change, or address community issues..
Current Challenges Facing the Implementation of the RTI Act:
- Vacant Posts in Information Commissions: Many information commissions have unfilled vacancies, which severely affects their functioning. For instance, the Central Information Commission has eight out of 11 positions vacant. Some state commissions, like those in Jharkhand, Tripura, and Telangana, have been defunct for years.
- Mounting Backlogs: The lack of sufficient information commissioners has led to over 4 lakh pending appeals and complaints. In some states, such as Chhattisgarh and Bihar, a fresh appeal may not be disposed of until 2029.
- Bias in Appointments: A majority of appointed commissioners are retired government officials or individuals with political affiliations, leading to reluctance to take action against transparency violations.
- Failure to Impose Penalties: Commissions rarely penalize officials for violations, with penalties imposed in only 5% of cases where applicable. This promotes a culture of impunity and discourages proper adherence to the RTI Act.
- Regressive Amendments: Amendments to the RTI Act in 2019 reduced the autonomy of information commissions by giving the central government control over tenure, salaries, and entitlements of commissioners. The 2023 Digital Personal Data Protection (DPDP) Act further restricted the disclosure of personal information under the RTI Act.
- Threats and Attacks on RTI Activists: There have been nearly 100 killings and thousands of cases of assault, intimidation, and legal harassment against individuals using the RTI Act.
|
How the Erosion of RTI Undermines Democratic Principles:
- Weakening of Accountability and Transparency: The RTI Act empowers citizens to seek information and hold the government accountable. Erosion of this right leads to reduced government transparency, weakening the democratic process of checks and balances.
- Increased Impunity and Abuse of Power: The failure to impose penalties and enforce accountability fosters a culture where officials can evade scrutiny without facing consequences, allowing for corruption and abuse of power to thrive.
- Diminished Public Participation in Governance: The RTI Act plays a crucial role in empowering citizens to participate in governance by providing access to information. Restrictions on this access limit citizens’ ability to make informed decisions and engage with government policies effectively.
- Chilling Effect on Whistleblowers and Activists: Threats and violence against RTI users deter citizens from using the law to expose wrongdoing, leading to a decrease in transparency and whistleblowing.
Measures to Strengthen the RTI Framework in India: (Way forward)
- Fill Vacancies and Increase Capacity: Appoint information commissioners promptly to reduce backlogs and ensure commissions function efficiently. Strengthen the infrastructure and manpower of commissions to handle increasing workloads.
- Restore Autonomy and Accountability: Reverse regressive amendments and ensure that information commissions operate independently. Implement stricter measures for imposing penalties on officials who violate RTI norms.
- Strengthen Legal Protections for RTI Users: Operationalize the Whistleblowers Protection Act, 2014, to protect those who face retaliation for using the RTI Act. Provide security and legal assistance to activists and whistleblowers.
- Promote Digital Solutions: Enhance the use of digital platforms to file RTI applications and appeals, and improve the efficiency of the information disclosure process. This can help reduce delays and improve transparency.
- Public Awareness and Training Programs: Conduct regular public awareness campaigns to educate citizens about their rights under the RTI Act. Provide training to information officers to improve their understanding of the law and ensure timely and accurate responses.
Mains PYQ:
Q Recent amendments to the Right to Information Act will have a profound impact on the autonomy and independence of the Information Commission”. Discuss. (UPSC IAS/2020)
Get an IAS/IPS ranker as your 1: 1 personal mentor for UPSC 2024
Attend Now
Note4Students
From UPSC perspective, the following things are important :
Prelims level: UNIFIL, UN Peacekeeping Mission
Why in the News?
- India has expressed concerns about the safety of UN peacekeepers stationed in south Lebanon, after they came under fire from Israeli forces.
- Among the peacekeepers are 600 Indian soldiers, who are part of the UN peacekeeping mission and are stationed along the 120-km Blue Line on the Israel-Lebanon border.
What is UNIFIL (United Nations Interim Force in Lebanon)?
|
Details |
| Established |
March 1978, following Israel’s invasion of Lebanon |
| UN Resolutions |
Established under UNSC Resolutions 425 and 426 |
| Primary Objectives |
- Confirm Israeli withdrawal from Lebanon
- Restore international peace and security
- Assist the Government of Lebanon in regaining control over southern Lebanon
|
| Area of Operation |
Southern Lebanon, near the border with Israel (Blue Line) |
| Personnel |
Over 10,000 peacekeepers from 50 countries (both civilian and military personnel) |
| Mission |
- Prevent hostilities and maintain peace along the 121-km Blue Line
- Ensure that no weapons or fighters are present in the region
- Report violations to the UN Security Council
|
| Rules of Engagement |
Peacekeepers are armed but are only allowed to use force when their safety or civilian safety is at risk |
| Headquarters |
Naqoura, southern Lebanon |
| Peacekeeper Status |
Not soldiers but impartial peacekeepers, present with the consent of the host country, Lebanon |
Significance of UNIFIL
- Conflict Prevention: UNIFIL monitors the Blue Line and prevents escalations between Israel and Lebanon.
- Civilian Protection: It safeguards civilians and supports humanitarian aid efforts in conflict zones.
- Support for Lebanon: UNIFIL helps the Lebanese government extend control in the south alongside the Lebanese Armed Forces.
PYQ:
[2015] Discuss the impediments India is facing in its pursuit of a permanent seat in UN Security Council. |
Get an IAS/IPS ranker as your 1: 1 personal mentor for UPSC 2024
Attend Now
Note4Students
From UPSC perspective, the following things are important :
Prelims level: Wular Lake
Why in the News?
The harvest of water chestnuts, locally known as goer has begun around “Wular Lake” in Kashmir.
About Wular Lake:
|
Details |
| Location |
Bandipore district, Jammu and Kashmir |
| Size |
Largest freshwater lake in India, second-largest in Asia |
| Area |
Covers 200 sq. km, with a length of 24 km and breadth of 10 km |
| Source |
Fed by the Jhelum River; Streams Madhumati and Arin. |
| Formation |
Formed due to tectonic activity; possibly a remnant of the ancient Satisar Lake |
| Island formation |
Features a small island called Zaina Lank, constructed by King Zainul-Abidin |
| Ecological Significance |
Ramsar Wetland Site (since 1990), supports wintering, staging, and breeding of many bird species |
| Wildlife |
Important for bird species like black-eared kite, Himalayan monal, Himalayan golden eagle |
| Fish Habitat |
Accounts for 60% of the fish production in Jammu and Kashmir |
| Wetland status |
Designated as a Wetland of International Importance in 1990 under the Ramsar Convention |
| Tulbul Project |
Located at the mouth of Wular Lake, aims to regulate the flow of water from the lake into the Jhelum River to enhance navigation and ensure year-round water availability.
Controversial due to objections raised by Pakistan under the Indus Waters Treaty. Currently, the project remains stalled. |
PYQ:
[2018] Which one of the following is an artificial lake?
(a) Kodaikanal (Tamil Nadu)
(b) Kolleru (Andhra Pradesh)
(c) Nainital (Uttarakhand)
(d) Renuka (Himachal Pradesh) |
Get an IAS/IPS ranker as your 1: 1 personal mentor for UPSC 2024
Attend Now
Note4Students
From UPSC perspective, the following things are important :
Prelims level: Doppler, X-Band Radar, NISAR
Why in the News?
After the floods and landslides in Wayanad in July 2024, the Union Ministry of Earth Sciences approved the installation of an “X-band radar” in the district.
What is an X-Band Radar?
- An X-band radar is a type of radar that operates in the 8-12 GHz frequency range of the electromagnetic spectrum, with wavelengths of 2-4 cm.
- This radar is particularly useful for detecting smaller particles like raindrops, fog, and other fine materials due to its shorter wavelengths, which allow for higher resolution images.
Key Features of X-Band Radar:
- High Resolution: The shorter wavelength provides more detailed images, making it ideal for tracking weather phenomena, including precipitation and particle movements.
- Limited Range: They have a relatively shorter range compared to other types like S-band radars because higher frequency signals get attenuated (weakened) faster as they travel through the atmosphere.
Applications: In weather forecasting, X-band radars are used for short-range weather monitoring, such as predicting rainfall intensity and landslides. They are also used in air traffic control and military applications. |
What is a Doppler Radar?
- A Doppler radar is a type of radar used primarily in meteorology to measure the velocity and movement of weather formations, such as clouds and storms.
- It works on the principle of the Doppler effect, which refers to the change in frequency of waves as their source moves relative to the observer.
It’s applications:
- Velocity Measurement: By measuring these changes in frequency, Doppler radar can determine how fast the object (e.g., rain cloud) is moving and in which direction.
- Weather Monitoring: Doppler radar helps in tracking rainfall intensity, detecting wind patterns, and predicting the formation of storms or tornadoes.
India’s Radar Network
- The India Meteorological Department (IMD) began using radars in weather applications in the 1950s.
- The first indigenously designed X-band storm detection radar was installed in 1970 in New Delhi.
- In 1996, the IMD replaced 10 outdated X-band radars with digital X-band radars.
- India’s radar network includes both wind-finding and storm-detecting X-band radars. The country also uses S-band radars (2-4 GHz) for long-range detection. The first S-band cyclone detection radar was installed in Visakhapatnam in 1970.
Recent Developments:
- In September 2024, the Ministry of Earth Sciences announced that India would install 56 additional Doppler radars over the next few years.
- On September 11, 2024, the Union Cabinet approved the ₹2,000-crore ‘Mission Mausam’, which aims to upgrade meteorological infrastructure, including the installation of up to 60 radars by 2026.
- The Wayanad radar initiative also includes the installation of a C-band radar (4-8 GHz) in Mangaluru, with an observational range of 250 km.
About the NISAR
- NISAR, short for NASA-ISRO Synthetic Aperture Radar, is a joint satellite mission being developed by NASA and ISRO.
- NISAR will use radar imaging to create a high-resolution map of the earth’s landmasses, tracking changes in natural processes.
- Its payload consists of an L-band radar (1.25 GHz, 24 cm) built by NASA and an S-band radar (3.2 GHz, 9.3 cm) built by ISRO.
- NISAR is expected to launch in 2025 aboard an ISRO GSLV Mk II rocket, with a total cost of $1.5 billion, primarily funded by NASA.
|
PYQ:
[2016] Discuss India’s achievements in the field of Space Science and Technology. How the application of this technology has helped India in its socio-economic development? |
Get an IAS/IPS ranker as your 1: 1 personal mentor for UPSC 2024
Attend Now
Note4Students
From UPSC perspective, the following things are important :
Prelims level: Anaconda Strategy
Why in the News?
Taiwanese authorities recently stated that the People’s Liberation Army (PLA) is using an ‘anaconda strategy’ to put pressure on Taiwan.
China’s Military Maneuvers around Taiwan
- China has been steadily increasing its military activities around Taiwan, both by air and sea:
- Air incursions into the Taiwan Strait have increased significantly, from 36 incursions in January to 193 in September.
- Chinese ships operating around Taiwan has also risen, from 142 in early 2024 to 282 by August.
- These maneuvers seem designed to wear down Taiwan’s navy and air force, creating constant pressure.
|
What is the Anaconda Strategy?
- The ‘anaconda strategy’ involves a combination of military tactics, psychological pressure, and cyber warfare.
- The goal is to weaken Taiwan’s defenses and force the island into submission without the need for a full-scale invasion.
- China’s approach is one of relentless pressure.
- It is trying to tire out Taiwan and force it into making mistakes, which could then be used as a pretext to launch a blockade.
- Its ultimate goal appears to be to make Taiwan vulnerable without resorting to direct military conflict, keeping Taiwan’s forces on the defensive.
Other Unconventional Strategies used by China:
- Wolf Warrior Diplomacy: A confrontational and assertive style of diplomacy used by Chinese officials, characterized by aggressive rhetoric and nationalistic stances, often aimed at defending China’s interests and countering foreign criticism.
- Gray-Zone Tactics: A set of covert strategies that fall between war and peace, including actions like cyberattacks, propaganda, and incremental territorial gains, aimed at advancing a nation’s goals without triggering a full-scale military conflict.
- Salami Slicing: A strategy where small, incremental actions are taken over time to achieve a larger goal without triggering a strong reaction. It is often used to gain control or advantage bit by bit, avoiding immediate confrontation.
|
PYQ:
[2021] The US is facing an existential threat in the form of a China that is much more challenging than the erstwhile Soviet Union. Explain.
[2017] “China is using its economic relations and positive trade surplus as tools to develop potential military power status in Asia”. In the light of this statement, discuss its impact on India as her neighbour. |
Get an IAS/IPS ranker as your 1: 1 personal mentor for UPSC 2024
Attend Now