Individuals generate vast amounts of medical data through various healthcare interactions and personal devices. Machine learning can unlock proactive diagnoses, but current data silos and over-protective attitudes hinder access and sharing. A proposed electronic data request framework in India aims to place control with the data subject, enabling personal analysis and broader applications, such as credit-worthiness assessments.
Darwin’s theory of natural selection inspired Francis Galton to propose eugenics, the idea that selective breeding could enhance human traits. This concept gained traction in the early 20th century, leading to sterilization laws in the U.S. and Nazi Germany’s racial hygiene program. These ideas eventually culminated in the Holocaust, where six million Jews were killed. Today, the potential of CRISPR/Cas9 technology to alter genes offers a new frontier in genetics, with the lessons of the past serving as a cautionary reminder.
Dengue, that affects millions annually, may be mitigated by using Wolbachia-infected mosquitoes. This approach, along with fecal microbiota transplants for C-diff infections, underscores a shift towards microbiome-focused therapies. Future medicine may rely on synthetic biology for precise, customized treatments, challenging current regulatory frameworks.
We need to question the concept of “average” human medical standards, such as body temperature given the extent of the individual variations in human biology. There is a need for personalized medical treatment particularly when one considers how wearable technologies could revolutionize healthcare by enabling continuous monitoring and customized care.
There are ethical and legal complexities with treating terminally ill patients in India. There is a thin and grey line between palliative care and assisted suicide. We need clear legislation regarding living wills and the right to die with dignity.
The story of chess and rice illustrates exponential growth, paralleled in technology and genetics. Moore’s Law on computing power doubling every two years has led to advanced AI, machine learning, and virtual reality. Similarly, rapid advancements in genetics, outpacing Moore’s Law, are revolutionizing disease diagnosis and treatment, potentially transforming industries like insurance by redefining pre-existing conditions.
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.
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.
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.
India has the potential to use data innovatively for enhancing healthcare outcomes. However, it’s crucial to balance patient privacy with public good, defining clear grounds for data access and stringent punishments for misuse. The draft EHR legislation suggests patients “own” their medical data, but a nuanced approach focusing on access and control is needed. India has a unique opportunity to leverage technology for healthcare, but must strike the right balance between personal privacy and public good.
