Rare Diseases: Orphan Drugs

Those with rare diseases face tremendous challenges given that pharmaceutical companies have little incentive to produce the necessary drugs, and the high costs often make treatment unaffordable. Karnataka became the first state to release a Rare Diseases and Orphan Drugs Policy, recommending preventive testing, education, tax breaks, and insurance coverage for rare diseases. If other states follow suit, it could offer hope for those like Mohammed to lead longer and more dignified lives.

Big Bad Data

Statistician Fredrick Hoffman, known for identifying health risks like asbestos and tobacco, is also remembered for his flawed 1896 study claiming African Americans were inherently sicker than whites. This study, influenced by prejudice, had lasting negative impacts. As we increasingly rely on data and predictive algorithms, it’s crucial to avoid such biases and ensure fair, accurate interpretations to prevent perpetuating discrimination and injustice.

The Everest Spheroid

The Indian government insists on using the Everest Spheroid as the reference datum for its maps, citing greater accuracy and military significance. However, with the development of the World Geodetic System, which uses the Earth’s center of mass, the government’s insistence on surface reference mapping and restrictions on map exportation appears outdated and unnecessary.

Digital Inclusion for the 85%

2016 was a transformative year, marked by the e-commerce sector’s challenges following the Indian government’s Press Note 3. This led to innovative business models and growth in related industries like logistics and warehousing. The year also saw Aadhaar enrolment surpass 1 billion, laying the foundation for India’s digital transformation. The introduction of India Stack, particularly the Unified Payment Interface (UPI), revolutionized digital payments. However, the focus shifted towards including the larger, underserved population in the digital economy, highlighting the need for a balanced policy framework that respects privacy while leveraging data-driven decision-making.

Ready for the day the Machines Take Over

As cognitive machines begin to take over human decision-making functions, there is an urgent need to redesign education to promote creative thought and problem-solving. Without these changes, the next generation may be ill-equipped to stay ahead of the machines, risking being overwhelmed by technological advancements.

Cutting the Code with CRISPR

CRISPR-Cas9 is a gene-editing breakthrough that promises cures for genetic diseases but raises ethical concerns about creating “designer babies” and potential misuse. While some advocate for a moratorium on germ-line modifications, others argue for its therapeutic potential, especially in eradicating devastating genetic disorders like Tay-Sachs.

Its Time for Coveillance

Privacy is an aberration from the mutual surveillance (coveillance) society that we have always been a part of. With greater tensions being felt between new technologies and the need for greater privacy the solution is to embrace covaillance so that we can reduce the information asymmetry between the watcher and the watched.

The New Imperialists

Europe supplanted Asian dominance in the 1700s, thanks to the European discovery of ignorance and its subsequent pursuit of knowledge. There are parallels between this and today’s technological revolution, where virtual networks and global corporations have created a new form of influence, that are a modern form of colonization.

The Rise of the Machines

We should regulate autonomous weapons like we govern nuclear non-proliferation and climate change - through international consensus and not national policy. If we build machine intelligence that can decide who to kill this technology we will not be able to control whose hands this gets into.

Regtech Will Change the Way We Regulate

Since the 2008 financial crisis, increased regulatory measures have led to higher compliance costs for financial institutions. Many banks’ legacy systems are struggling with these demands. Emerging RegTech start-ups are addressing this by using modern cloud-based technologies to simplify compliance. This field promises to transform regulation through efficient data processing, real-time API-driven compliance, and a shift from prescriptive legislation to principle-based algorithms.