Editorial 1 : Welcome direction.
Context: As with elections, SC should have given a deadline for restoration of statehood.
Introduction
- In its conclusion in the judgment that upheld the decision to abrogate the special status of Jammu and Kashmir under Article 370, the Constitution Bench of the Supreme Court expressly directed that the Election Commission of India (ECI) must conduct elections to the Legislative Assembly of J&K by September 30, 2024.
What is welcoming, and what is the issue?
- It is welcome that the Court has set a deadline to conduct the long-delayed elections in J&K, which has been under spells of Governor’s Rule and President’s Rule since June 20, 2018, and without a Legislative Assembly.
- But it is also incongruous that the judgment does not press the government to restore statehood to the bifurcated Union Territory, a promise that has been conveyed by the Solicitor General but has yet to gain fruition.
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Constitution bench
- Constitution bench is the name given to the benches of the Supreme Court of India which consist of at least five judges of the court which sit to decide any case “involving a substantial question of law as to the interpretation” of the Constitution of India or "for the purpose of hearing any reference" made by the President of India under Article 143.
- This provision has been mandated by Article 145 (3) of the Constitution of India.
- Also, matters related to the Amendment of an Act of the Indian Parliament are referred to the Constitution Bench by the Supreme Court under the same act.
- The Chief Justice of India has the power to constitute a Constitution Bench and refer cases to it.
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Direct election and statehood.
- The Bench remarks that direct elections cannot be put on hold until statehood is restored but it could have directed the Union government to restore statehood and conduct elections by a specified date, as there remains no reason for the continuance of J&K as a Union Territory.
- Restoration of statehood is an important measure as this guarantees a degree of federal autonomy to the province, that should allow the elected government to be able to better address the concerns of the electorate than depend on the representatives of the Union government.
Conflict prone region and voting behaviour.
- J&K remains among India’s most conflict-prone regions partially due to historical reasons related to integration of the erstwhile princely State into the Indian Union and later due to accumulated grievances over the conduct of democratic processes in the erstwhile State.
- Even when periodic and regular elections were conducted during the height of the militancy, participation was limited in many parts of the Valley, denoting the disenchantment with the political system.
- But things took a change for the better since the early-mid 2000s when electoral participation improved, and J&K’s citizens began to partake in the democratic process to get their concerns addressed before agitations and protests — including by separatists — over security policies and the later steps taken by the government led to the current state of affairs.
Local level elections
- In the last five and a half years, local government elections have been held with varying levels of participation indicating that the mood in the Valley has been against the measures that have been implemented since 2018.
- India’s unique selling proposition as a leader in the Global South remains its robust conduct of formal democratic process and which in itself is important for conflict resolution in places such as Kashmir.
Conclusion
- Without political processes, a contestation of ideas and a sense that elected representatives can address the grievances of citizens, there cannot be any normalcy.
Editorial 2 : Game-changer
Context: Gene therapy offers new hope for those with sickle cell disease.
Introduction
- Less than a month after the U.K. drug regulator approved Casgevy, the gene therapy to treat people above 12 with sickle cell disease and beta thalassemia, the U.S. FDA has approved two gene therapies — Casgevy and Lyfgenia — to treat sickle cell disease in patients over 12. Its decision on approving Casgevy gene therapy for treating beta thalassemia is expected by March 2024.
Gene therapy
- Gene therapy is a technique that uses a gene(s) to treat, prevent or cure a disease or medical disorder. Often, gene therapy works by adding new copies of a gene that is broken, or by replacing a defective or missing gene in a patient’s cells with a healthy version of that gene.
- Both inherited genetic diseases (e.g., hemophilia and sickle cell disease) and acquired disorders (e.g., leukemia) have been treated with gene therapy.
- It is a direct way to treat genetic conditions as well as other conditions. There are also other related approaches like gene editing. There are many different versions and approaches to gene therapy and gene editing.
- It all rests on understanding how genes work and how changes in genes can affect our health. Researchers all over the world are studying many different facets of gene therapy and gene editing.
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Sickle cell disease
- Sickle cell disease is an inherited blood disorder. It is marked by flawed haemoglobin. That’s the protein in red blood cells that carries oxygen to the tissues of the body. So, sickle cell disease interferes with the delivery of oxygen to the tissues.
- Red blood cells with normal haemoglobin are smooth, disk-shaped, and flexible, like doughnuts without holes. They can move through the blood vessels easily. Cells with sickle cell haemoglobin are stiff and sticky.
- When they lose their oxygen, they form into the shape of a sickle or crescent, like the letter C. These cells stick together and can’t easily move through the blood vessels. This can block small blood vessels and the movement of healthy, normal oxygen-carrying blood. The blockage can cause pain.
- Normal red blood cells can live up to 120 days. But sickle cells only live for about 10 to 20 days. Also, sickle cells may be destroyed by the spleen because of their shape and stiffness. The spleen helps filter the blood of infections.
- Sickled cells get stuck in this filter and die. With less healthy red blood cells circulating in the body, you can become chronically anaemic. The sickled cells also damage the spleen. This puts you are at greater at risk for infections.
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Beginning of gene therapy using the CRISPR-Cas9 tool
- These landmark decisions mark the beginning of gene therapy using the CRISPR-Cas9 tool to treat diseases that could otherwise be cured only through bone marrow transplantation.
- While Lyfgenia uses a disabled lentivirus as a vector to introduce into the blood stem cells a new gene for haemoglobin that mimics the healthy version, Casgevy uses the gene-editing tool of CRISPR-Cas9 to disable a particular gene (BCL11A) that turns off foetal haemoglobin production in blood stem cells.
- While about 10% of adults continue to produce foetal haemoglobin, in others, the BCL11A gene prevents the production of foetal haemoglobin. By disabling the BCL11A gene, foetal haemoglobin that is produced, which does not have the abnormalities of adult haemoglobin, helps treat patients with sickle-cell disease or beta thalassaemia.
- In clinical trials, 28 of 29 sickle-cell disease patients who received Casgevy gene therapy were relieved of the debilitating effects of the disease for a year; for beta thalassaemia, 39 of 42 patients did not require blood transfusion for one year, and in the remaining three the need for blood transfusion reduced by more than 70%.
- In the case of clinical trials involving Lyfgenia, 30 of 32 sickle cell disease patients did not suffer from severe blocked blood flow caused by sickle cells, while 28 of 32 patients did not experience any blocked blood flow events six to 18 months post-infusion.
Huge potential and huge expenditure
- Since both gene therapies use patients’ own blood cells for gene editing, the number of patients who can potentially be treated will be huge as these treatments do not rely on matching bone marrow donors.
- But in reality, these treatments would be exorbitantly expensive. Also, much like bone marrow transplantation, only certain hospitals will be equipped to extract a patient’s blood stem cells and use the genetic editing tool to the stem cells before reinjecting them, thus limiting the number of beneficiaries.
Way forward
- With clinical trials evaluating the therapies in a very small number of patients and for shorter duration, the compulsion to continuously monitor their safety and efficacy through real world data cannot be overemphasised: the possibility of unintended genetic modifications and their resultant side effects are real when the CRISPR–Cas9 tool is used.