1. Seven things to note in the new Afghan government
Relevant for GS Prelims & Mains Paper II; International Relations
The Taliban announced their cabinet Tuesday (September 7) evening, three days after the chief of Pakistan’s Inter-Services Intelligence (ISI) Lt General Faiz Hameed reached Kabul to decide on government formation.
In terms of structure, the new government in Kabul is similar in some ways to the one in Tehran. The top religious leader of the Taliban, Mullah Haibatullah Akhundzada, is Afghanistan’s supreme authority, even though he is not part of the government.
According to a statement released after the cabinet appointments, Akhundzada has instructed the new government to uphold Islamic rules and Sharia law in Afghanistan.
In the statement released in English, Akhundzada also urged those in charge to protect the country’s highest interests, and to ensure “lasting peace, prosperity and development”.
Here are seven key things to note about the new Afghan government.
First, it has Pakistani’s stamp all over it.
The imprint of Rawalpindi is visible in the dominance in the new cabinet of the leaders of the Haqqani Network terrorist outfit and the Kandahar-based Taliban group.
The Taliban group based in Doha, which had been negotiating with the international community and had established contacts with New Delhi, appears to have been sidelined.
The hand of Pakistan is evident in the choice of the new prime minister, Mullah Mohammad Hassan Akhund, and the induction of several Haqqanis in the interim Afghan government. The ISI chief reached Kabul three days ago to ensure that its proxies get plum posts.
For India, the Haqqanis getting Afghan government berths is bad news. The assessment in New Delhi is that at least 20 of the 33 men in the new cabinet are from the Kandahar-based Taliban group and the Haqqani Network.
Second, the biggest winner is Haqqani.
From New Delhi’s perspective, Sirajuddin Haqqani as Afghanistan’s interior minister is the most telling signal that the cabinet has been handpicked by the ISI.
Sirajuddin Haqqani, son of the former mujahideen fighter and CIA asset Jalaluddin Haqqani whose death was announced in September 2018, is head of the Haqqani Network, a sprawling Islamist terrorist mafia with close ties to al-Qaeda, based in Pakistan’s North Waziristan.
Haqqani was responsible for the terrorist attack on the Indian Embassy in Kabul in 2008 that killed 58 people, and the attacks against Indians and Indian interests in Afghanistan in 2009 and 2010.
As interior minister, Haqqani’s mandate will include not just law and order, but also appointments of provincial governors, under the garb of “local governance”.
This will mean that he will have leverage and the ability to pack the country’s provinces with his — and the ISI’s — handpicked men. The sense in South Block is that this will have deep strategic consequences for India, and for the region as a whole.
Sirajuddin Haqqani is also a designated global terrorist. The Rewards for Justice Program of the United States Department of State has offered a reward of up to $ 10 million for information leading directly to his arrest.
Sirajuddin is wanted for questioning in connection with the January 2008 attack on a hotel in Kabul that killed six people, including an American citizen. He is believed to have coordinated and participated in cross-border attacks against the US and coalition forces in Afghanistan.
He was also allegedly involved in planning the attempted assassination of then Afghanistan President Hamid Karzai in 2008, the FBI says on its website.
The other Haqqani in an important position is Khalil Haqqani, the new minister for refugees. He too is a specially designated global terrorist who has close ties to al-Qaeda, and has aided and “acted on behalf of” al-Qaeda’s military.
Khalil Haqqani, who has appeared in several photographs from Afghanistan over the past few weeks, is the brother of Jalaluddin Haqqani and the uncle of Sirajuddin. There is a State Department reward of up to $ 5 million for “information that brings to justice” Khalil Haqqani.
One of the trusted men of the Haqqanis is Mullah Taj Mir Jawad, who will be deputy intelligence chief of the new government. Jawad led the Kabul attack network, which organised the various Islamist jihadist groups, including al-Qaeda, in and around Kabul.
Third, the Taliban old guard remain in charge.
The cabinet announced on Tuesday is filled with Taliban from the previous regime (1996-2001) led by Mullah Mohammad Omar. Many are on the United Nations terror list. All are considered extremely close to the ISI.
The prime minister, Mullah Mohammad Hassan Akhund, is the hardline chief of the decision-making ‘Rehbari Shura’ council of leaders, often called the ‘Quetta Shura’ after the Pakistani city where many of the Taliban fled after the US-led invasion of Afghanistan following the terrorist attacks of September 11, 2001.
Akhund is also the man who ordered the destruction, in 2001, of the magnificent standing Buddha statues that were carved into the side of a cliff in the Bamiyan valley in the sixth century.
Akhund, who is on the UN terror list, belongs to Kandahar, the birthplace of the Taliban, and was among the founders of the Islamist movement. He worked for 20 years as head of the Rehbari Shura, and remained close to Mullah Haibatullah Akhundzada, the supreme leader of the Taliban.
Akhund had served as foreign minister and deputy prime minister during the Taliban’s first government in Afghanistan from 1996 to 2001. He was also the governor of Kandahar, and vice president of the council of ministers in 2001.
According to the UN, Akhund is one of “30 original Taliban”. The National Security Archive of George Washington University states: “Akhund holds prejudices against both westerners and the mujahadeen. Considered one of the most effective commanders. Studied at various madrassas in Pakistan.”
The acting minister of public works, Mullah Abdul Manan Omari, is the brother of the Taliban’s founder leader, Mullah Omar, and the uncle of Omar’s son, Mullah Yaqoob, who is the acting minister for defence in the new regime.
Mullah Yaqoob was a student of Mullah Haibatullah Akhundzada, who had earlier appointed him as head of the powerful Taliban military commission.
Fourth, Mullah Baradar has been edged out.
Mullah Abdul Ghani, one of the co-founders of the Taliban in 1994 who is known as ‘Baradar’ due to his closeness with the founder leader Mullah Omar, had been the head of the Taliban’s political office in the Qatari capital Doha, and was the main face of the Taliban’s negotiations with the world.
Having been the man who signed the Doha Agreement with the Americans, he was expected to head the Taliban regime. But although he remains number two in the government, he is the first deputy prime minister, having been edged out of the top post by Mullah Hassan Akhund.
Abdul Salam Hanafi, an Uzbek by ethnicity who too, was part of the Doha negotiating team, will be the second deputy prime minister.
Mullah Baradar was captured in February 2010 in Karachi after Pakistani intelligence discovered that he had opened a channel of communication with then President Hamid Karzai.
The Pakistanis released him in 2018 at the behest of the Trump Administration, and from 2019 onward, Baradar led the talks with Zalmay Khalilzad, the State Department’s Special Representative for Afghanistan Reconciliation.
In March 2020, Baradar became the first Taliban leader to communicate directly with an American president, when he spoke with Donald Trump by phone. It appears that his chances were scuttled by the ISI which does not trust him entirely.
Fifth, for all the promises made earlier, there is hardly any inclusivity in the Taliban cabinet.
As expected, no woman has found a place in the cabinet, and there are very few non-Pashtuns — only three out of 33. This has belied expectations in some quarters of the international community that the “new” Taliban would be “inclusive” and “representative”.
The non-Pashtuns — members of Afghanistan’s ethnic minorities — in the government are the second deputy head of government Abdul Salam Hanafi; chief of the army staff Qari Fasihuddin; and the minister of economy Qari Deen Hanif.
Hanafi is Uzbek, while Fasihuddin and Hanif are Tajiks. Fasihuddin was key to the Taliban’s advance in Badakhshan in north-east Afghanistan, and naming him army chief is said to be a reward.
There were women negotiators in the Intra-Afghan talks in Doha, but none of them have found a place in the cabinet.
Sixth, a potential Indian point of contact has been negated.
India had reached out to Sher Mohammad Abbas Stanekzai, who was being considered as one of the main contenders to be foreign minister. But he lost out in the race.
Stanekzai, who had engaged with many international interlocutors in Doha as the deputy head of the Taliban office, has been sidelined — deputy foreign minister is the same post that he had held in 1996 as well, before being moved as deputy health minister.
Stanekzai had met Deepak Mittal, India’s ambassador to Qatar, on August 31, the first official contact between India and the new rulers of Afghanistan that was made public.
Stanekzai’s boss is Amir Khan Muttaqi, who has been named foreign minister. Muttaqi had served as the minister of information and culture during the first Taliban regime. He too is on the UN terror list, but had served as a Taliban representative in the United Nations-led talks during the earlier Taliban regime.
Muttaqi was one of the members of the Doha group led by Baradar.
Seventh, there are some Guantanamo Bay prisoners in the cabinet.
Terrorists who had been incarcerated at the Guantanamo Bay facility by the US for many years are among the members of the Taliban cabinet.
This list includes Khairullah Khairkhwa, the minister for information and culture, and Abdul Haq Waseeq, the intelligence chief. Mullah Noorullah Noori, the minister of borders and tribal affairs too, is a former Gitmo inmate.
Source: The Indian Express
2. The perfect storm that has led to Sri Lanka’s national ‘food emergency’
Relevant for GS Prelims & Mains Paper III; Environment
Sri Lanka’s Parliament on Monday (September 6) approved a national emergency declared by President Gotabaya Rajapaksa on August 30.
The government said the emergency was required to check soaring prices of food and hoarding of essentials by a “food mafia”. But the Opposition said it was “in bad faith, with the ulterior motive of further restricting fundamental rights of the citizenry and moving further in the direction of authoritarianism”.
The emergency has added to the uncertainty of Sri Lanka’s food crisis, which has all the makings of a perfect storm.
Debt, forex crisis, inflation
Sri Lanka is bent by a huge foreign debt burden. It is unable to repay these loans because of critically low foreign exchange reserves.
With the tourism industry destroyed since the 2019 Easter attacks, Sri Lanka had lost one of its top foreign exchange pullers even before the pandemic struck.
The tea and garment industries have also been hit by the pandemic, affecting exports.
Remittances increased in 2020, but are not sufficient to pull Sri Lanka out of its crisis. At the end of July, the country’s foreign exchange reserves were $ 2.7 billion, while it needs to repay foreign debts of about $ 4 billion.
An expected $ 400 million currency swap with India has not yet materialised. In March, Sri Lanka obtained a $ 1.5 billion currency swap deal from China. Last month, Bangladesh gave a first tranche of $ 50 million of a $ 250 million loan swap agreement.
A currency swap is a loan agreement for repayment with interest in the local currency.
The low forex reserves also mean Sri Lanka has been unable to import as much as it used to in the past.
Earlier this year, it stopped imports of vehicles and several other items, including edible oils, turmeric, and even toothbrushes, in a bid to save precious foreign exchange. Sri Lanka imports many of its essential food items, including pulses, sugar, wheat flour, vegetables, and cooking oil.
This is the supply side problem of the crisis.
On the demand side, the printing of Rs 800 billion by the Central Bank of Sri Lanka over the last 18 months to ease the economic crisis has increased liquidity in the economy. But this infusion of money, and the consequent increase in demand without a corresponding increase in supply, has led to a sharp spike in inflation.
This in turn has devalued the currency, made imports costlier, added to the debt and put the forex reserves under more pressure.
The government’s decision, under the emergency, to fix prices of all essential items has further hit imports, as traders are reluctant to buy at high prices internationally without a promise of returns from sales in the markets at home.
In addition, there is a restrictive import licensing regime.
Another emergency, old fears
The emergency has been declared under the legal framework of the Public Security Ordinance (PSO).
Section 2 of the PSO empowers the President to declare a State of Emergency in two situations: when the President is of the opinion that it is expedient to do so a) in the interest of public security and the preservation of public order, or b) for the maintenance of supplies and services essential to the life of the community.
“With the declaration of a State of Emergency on 30th August 2021, the President is now able to promulgate Emergency Regulations dealing with any subject at any given time. Considering Sri Lanka’s history with emergency, other security related laws and legacy of repression, this raises serious concerns,” the Colombo-based think tank Centre for Policy Alternatives noted in a statement.
While the emergency has to be taken to Parliament for renewal every three months, the President is empowered to bring in regulations that do not need parliamentary oversight or approval.
“The importance of ensuring that the extraordinary powers arrogated to the executive through these emergency regulations have to be used purely for the specific purposes recognised by the regulations…must be recognised as a temporary conferral of extraordinary power for the government during times of acute crisis. It should not be considered as a substitute for the ‘normal legal regime’. As such the State of Emergency should be in force only for a limited period of time,” the Centre for Policy Alternatives note said.
It asked citizens to democratically challenge “any measure to stifle dissent, curtail civil liberties and threaten Sri Lanka’s constitutional democracy”.
Sri Lanka was under an emergency for over three decades during the war against the Liberation Tigers of Tamil Eelam (LTTE) until it was allowed to lapse in 2011; and then for brief periods during the anti-Muslim riots in 2018, and after the Easter bombings in 2019.
In Parliament, Opposition members argued that there was no need for an emergency, as other legislation were available to check hoarding and cap food prices.
The appointment of a serving major general as the Commissioner General of Essential Services has raised concerns that the civilian administration is being bypassed.
Memories of another food crisis
The last time the country experienced a food crisis was in the 1970s, during the Sirimavo Bandaranaike government’s experiment with socialism.
The long queues seen outside the government-owned Sathosa grocery shops have triggered memories of the “ship-to-mouth economy” of those days, Colombo’s The Sunday Times said in an editorial, recalling “the precious ration card which provided every family with limited subsidised quantities of rice, sugar, kerosene, flour, and dhal; the endless queues for bread and cloth; and the draconian foreign-exchange controls and exit permits. Senior citizens may well recall how they had to wait anxiously for the next ship to arrive with their food”.
The ban on chemical fertilisers in March, when President Rajapkasa announced that the country would grow only organic food henceforth, becoming the first country to do so, may aggravate the shortage, agricultural experts have said.
The move was aimed at saving foreign exchange in imports of these fertilisers, but it is feared that the sudden mid-crop change, without preparing the soil adequately, could adversely affect yields of vegetables and rice.
Source: The Indian Express
3. The PayPal-Paidy deal, and interest in the ‘buy now, pay later’ space
Relevant for GS Prelims & Mains Paper III; Economics
American payments giant PayPal has agreed to buy Japanese ‘buy now, pay later’ (BNPL) firm Paidy for $2.7 billion, in what is yet another major deal in the segment after Twitter CEO Jack Dorsey-run Square bought Australian Afterpay for $29 billion last month.
What is buy now, pay later (BNPL)?
The BNPL model has evolved over the years as a payment option to buy goods and services online through small sized credits. In this model, unsecured loans are extended to online shoppers on the lines of a credit card, but these are smaller in amount and have a shorter repayment schedule.
Over the last one year, BNPL companies across the world have seen a boom in their business, and experts suggest this is happening on account of the stimulus money being pumped into the system by the US government, particularly because of diminished spending capabilities caused by Covid-19 pandemic.
However, some economists are also looking at BNPL as a potential debt-trap for millennials.
Reportedly, iPhone maker Apple is said to be in talks with Goldman Sachs to launch its own BNPL service.
Why has PayPal bought Paidy?
In a statement, PayPal said: “The acquisition will expand PayPal’s capabilities, distribution and relevance in the domestic payments market in Japan, the third largest e-commerce market in the world, complementing the company’s existing cross-border ecommerce business in the country.”
The American company is already considered a key player in the BNPL market, holding stakes in companies such as Sezzle and Z1P.AX Co Ltd.
In an investor presentation, PayPal noted that shopping volume in Japan has more than tripled to around $200 billion in the last 10 years, but more than two-thirds of all purchases are still paid for in cash, thereby presenting a huge opportunity for BNPL to proliferate.
Is BNPL prevalent in India?
In India, there are several BNPL wallets that are prevalent in e-commerce, grocery, and food delivery platforms. These include PayU-run LazyPay, Simpl, Zest Money, Amazon Pay and Paytm Postpaid, in addition to several pay later services being offered by banks such as ICICI Bank.
Goldman Sachs has predicted that BNPL will rise to become the fastest growing online payment option, with its market share growing from 3 per cent now to 9 per cent in 2024.
Source: The Indian Express
4. Taliban’s government formation
Relevant for GS Prelims & Mains Paper II; International Relations
After capturing Kabul on August 15, Taliban leaders had repeatedly said they would establish an “inclusive government” representing all sections of Afghan society. There were also discussions on whether the Taliban 2.0 would be different from the last time they were in power. But with the formation of an interim government on Wednesday, four days prior to the 20th anniversary of the September 11 terrorist attacks in the U.S., the Taliban have made it clear that the old guard who ran Afghanistan from 1996 to 2001 still reigns supreme in the group and that they care little about what the world thinks about their conduct of governance.
Almost all the senior positions of the interim government have been allocated to top Taliban leaders who were associated with the old regime. Mullah Hassan Akhund, who was the Foreign Minister of the previous Islamic Emirate, will head the government. Mullah Akhund, who is on a U.N. blacklist, is one of the Taliban’s founders. Mullah Abdul Ghani Baradar, another co-founder who was heading the Taliban’s Doha-based negotiations with the U.S. and other countries, will be his deputy.
Sirajuddin Haqqani, who is heading the dreaded Haqqani Network, is the Interior Minister. Sirajuddin’s father Jalaluddin Haqqani was a Minister in the previous Taliban regime and then a commander of the militants. Mohammad Yaqoob, the oldest son of the Taliban’s founder Mullah Omar, is the Defence Minister.
Khalil Haqqani, another senior member from the Haqqani Network, has been named the Minister of Refugee Affairs. Taliban spokesperson Zabihullah Mujahid has said the list is not complete. But the first list indicates that the key portfolios have been divided between the Taliban’s religious leadership and the Haqqanis, who provide military muscle to the group.
Sirajuddin is a globally designated terrorist wanted by Washington. The FBI has offered a reward of $5 million for information about him. He will now be in charge of internal security, police forces and intelligence. His Haqqani Network has close ties with Pakistan’s military establishment and had helped al-Qaeda in the past.
The appointment could make it difficult for other countries, especially for India and those in the West, in normalising relations with the Taliban regime. (The Haqqanis are blamed for the 2008 bombing of the Indian embassy in Kabul in which 58 people were killed). But the Taliban leadership, like their peers in the 1990s, doesn’t seem to care.
Four of the top five commanders who were detained in the Guantánamo prison and released by the Obama administration in 2014 in exchange for Sgt. Bowe Bergdahl were also given senior posts in the regime — Mullah Khairullah Khairkhah, Minister for Information and Culture; Mullah Noorullah Noori, Minister of Borders and Tribal Affairs; Mohammad Fazl, Chief of Army Staff; and Abdul Haq Wasiq, Director of Intelligence.
No woman, no Shia
Most of the Ministers are Pashtun, which is the largest ethnic group in Afghanistan (the Taliban are predominantly Pashtun). Unsurprisingly, there is no woman in the government. Afghanistan’s Shia minority, who make up roughly 10% of the population, has also found no representative in the interim government.
In the 1990s, the Shia Hazara minority, who are largely concentrated in Mazar-i Sharif in northwest Afghanistan, faced systemic persecution under the Taliban regime. Iran, a Shia theocracy that had established contacts with the Sunni extremist Taliban years ago, had reportedly put pressure on Afghanistan’s new rulers to include Hazara Shias in the government. But the Taliban did not relent.
Two days before the government announcement, the Taliban’s Education Ministry had issued an extensive document, issuing instructions to educational institutions and the women who were going to colleges and universities. All female students, teachers and staff must wear an abaya robe and niqab covering the hair, body and most of the face as well as gloves to ensure hands are covered, stated the document, signalling how the regime would treat women. It also ordered classes to be segregated by gender or divided by a curtain.
Protests broke out in parts of Afghanistan, including in Kabul, where women staged rallies demanding freedoms. On Tuesday, the crowds were dispersed by the Taliban using force, which was followed by Zabihullah Mujahid’s night-time press conference in which he announced the government formation.
In September 1996, after capturing Kabul, Mullah Omar said the Taliban would establish “a pure Islamic system” in Afghanistan. On September 7, 2021, after the interim government was announced, Hibatullah Akhundzada, Taliban’s Emir who will be the supreme leader of the new Afghanistan, issued a statement saying: “Our previous 20 years of struggle and Jihad had had two major goals. Firstly to end foreign occupation and aggression and to liberate the country, and secondly to establish a complete, independent, stable and central Islamic system in the country.” He added: “Based on this principle, in the future, all matters of governance and life in Afghanistan will be regulated by the laws of the Holy Shariah.”
Source: The Hindu
5. Odisha government proposal of 15% reservation for government school students
Relevant for GS Prelims & Mains Paper I; Social Issues
Reservation as a tool of social engineering seems to be flavour of the season in India. To add to the competitive populism of caste-based reservations, a few months ago, the Odisha government proposed a 15% reservation for government school students in medical and engineering colleges to reduce “inequity arising” from lack of “physical and economic access to coaching institutions”. The state machinery hailed it a historic decision. But is it?
A number of reports highlight the poor condition of government schools in many parts of the country. Odisha is no exception. Whether the State government has any serious plan of action to improve the functioning of government schools is not clear. But this decision certainly reflects a lack of political will in improving the state of education in schools. This intervention gives the impression that little can be expected of government schools. The current obsession with developing model schools reinforces this impression.
Failing in its duty
About 62% of students attend government and government-aided schools in India. The other 38% go to private institutions, some of which belong to the elite category and the rest of which are of questionable quality. A much higher percentage of students in Odisha go to government schools. Reserving seats in higher technical institutions for government school students rather than focusing on improving these publicly funded institutions defies all logic. By announcing this policy of reservation, the government seems to be admitting that it has failed in its duty to provide the majority of students with good education and equip them with requisite competence to get admission in technical institutions on the basis of their own merit.
Decades ago, students from Odisha had a high success rate in national-level competitive examinations. This was attributed to the strong educational foundation laid in government-run schools. During those days, teachers were known for their unquestionable sincerity and integrity. They were dedicated to their calling and commanded respect from the society. Over time, this seems to have changed.
There is no dearth of ideas or practices that can improve the quality of education in government schools. What is lacking is the government’s resolve to work on these ideas including capacity building of teachers to implement new pedagogic practices, emphasis on language teaching, filling up vacant teaching posts, and a change in the mindset among people and policymakers that government schools are typically backward and inferior to private schools. Instead of addressing relevant issues, government is trying to find a solution which could worsen the problem. The policy of automatically promoting the students to higher classes without passing examinations needs to be scrapped.
Building an institution is tough. Rebuilding it is even more so. The state can’t simply shirk this responsibility of improving education in government schools where an overwhelming majority of the children study. Focusing on them will go a long way in building the morale of teachers and students who are likely to grow up with an inferiority complex if flawed policies like the one mentioned above are pursued.
Benefits to few
Some may argue that the quota would help some sections of the society which have long been deprived of good education and decent jobs. But this justification can nevertheless be questioned on several grounds. One of them is that the benefits of quota, if any, would be cornered by the creamy layer of students with better access to coaching and additional technology-enabled resources. There might also be an urban bias in the benefit-sharing.
Source: The Hindu
6. Detecting Fragile X Syndrome
Relevant for GS Prelims & Mains Paper III; Science & Technology
In 2017, a man in Delhi, affected by autism, underwent his first DNA blood test at the age of 40. He tested positive for Fragile X Syndrome (FXS). This is caused by changes in a gene called FMR1 which make an important protein (FMRP). This protein is required for brain development.
Largely undetected in India
It was in 1991, 14 years after that man was born, that the mutation was discovered and named FRAXA by three American geneticists — Ben Oostra, David Nelson and Stephen Warren. They found that it was the leading inherited cause of autism worldwide.
Three decades ago, there was no primary knowledge of this among healthcare professionals. However, even after the discovery of FMR1, the lack of awareness and appropriate training to diagnose FXS in time prevails everywhere. In India, the lack of adequate screening and diagnostic facilities, the stigma attached to mental health, the absence of surveys in community settings, and bare minimum hospital data based on clinical experience have all kept FXS largely undetected.
According to a 2019 review paper of the Advanced Centre for Evidence-Based Child Health, established by PGIMER, Chandigarh, under the aegis of the Indian Council of Medical Research, “there is an under-recognition of the genetic disorder due to delay in diagnosis at young age and the lack of uniform application of validated, accessible and affordable diagnostic tools.” It is estimated there are 4,00,000 individuals who have been identified with mutated FMRI in India and 40 lakh undiagnosed carriers of the gene.
According to Centers for Disease Control and Prevention (CDC), one in 7,000 males and one in 11,000 females are affected with FXS. FXS is the leading inherited cause of autism in 4% of the population worldwide. The CDC estimates that one in 259 women and one in 800 men carry Fragile X. A mother who is a carrier has a 50% chance of passing the mutated gene to her children, who will either be carriers or have FXS. Men who are carriers do not pass the pre-mutation to their sons, but only daughters, who become carriers. This knowledge is crucial and the numbers are critical and demand attention, according to Professor Sumantra Chattarji, senior neurobiologist at the National Centre for Biological Sciences in Bengaluru. His research is focused on correcting the powerful emotional symptoms of FXS. It helps empower parents with information about babies in whom the FMR1 shuts down the production of FMRP.
Shalini Kedia, who founded the Fragile X Society of India in 2003 as a support system for families impacted with FXS, says that it is every woman’s right to make an informed choice of becoming a special mother. Studies suggest a high effect of consanguineous parenting on FXS prevalence.
The simplest tool for timely detection is a DNA test. In the U.S., FXS testing is mandatory for every child diagnosed with autism. This helps parents plan their family better. In India, doctors often fail to appropriately guide women who have fertility issues, late pregnancies, opt for IVF with donor eggs, or donate embryo for surrogacy.
Experts suggest an overhaul of the MBBS curriculum to include a detailed chapter on FXS and more government-organised Continuing Medical Education programmes for practising healthcare professionals so that FXS is treated as a major public health concern. Mass awareness and an additional test in the list of pregnancy and prenatal and neonatal tests for other chromosomal abnormalities (such as Down Syndrome) will be beneficial. But the majority of people are either not aware of the FXS test or cannot afford it. Tests are done in major government hospitals and in a few private labs and cost between ₹4,500 and ₹7,500.
People must understand that autism triggered by FXS is a behavioural condition. The symptoms are learning difficulty, speech delay, aggressive behaviour, hyperactivity, attention deficit, fear of the unfamiliar, sensory processing disorders and problems in motor skills. These cannot be cured, but early therapy can improve the individual’s quality of life.
The National Policy for Treatment of Rare Diseases, 2017, was limited by challenges in implementation. This year, the government introduced the National Policy for Rare Diseases Act. It calls for systematic epidemiological studies on incidence and prevalence of rare diseases. Without naming FXS directly, it recommends prenatal tests for lesser-known single-gene and other genetic disorders. This is profound as the dialogue on rare diseases has to be kept open, even during the pandemic. Or else, it will leave all those who are trying to cope feel even more vulnerable and isolated.
Source: The Hindu