Dr Arshdeep Sidhu, a protein biochemist, and currently a visiting faculty at Plaksha University, highlights the great potential and promise of personalised healthcare and advocates that it should be universally accessible – with a focus on individual choice and privacy
In an era when the idea of anything tailor-made is becoming rather obsolete in favour of standard-sized one-size-fits-all, the field of healthcare and medicine is looking the other way. Popping in an over-the-counter drug like aspirin for headache or fever is an almost instinctive response for many of us. However, aspirin is not equally effective amongst everyone; in some people, aspirin is only half as effective as it should be. This varied response to aspirin is due to fundamental genetic differences between people.
These interindividual differences become more pronounced and important as we move from common and mild ailments to chronic, debilitating conditions. The decline in infectious diseases – thanks to antibiotics – increased life expectancy worldwide and a new category namely noncommunicable diseases has become a concern now. Noncommunicable diseases originate in the individual’s body and do not transmit from one person to another, for example, obesity, diabetes, cancer, cardiovascular diseases, neurological diseases, etc. Since these diseases arise within the body, the genetic background or genes of a person play a pivotal role. A complex interaction between the genes of a person and the environment dictates when and how the disease presents itself, how it progresses, and how a patient responds to medication; thus, we also call these conditions complex genetic or lifestyle diseases.
Today, we have the tools to sequence the genome (all the genes) of an individual and predict certain health conditions. We are at the cusp of a medical revolution where we envision customising nutrition, exercise, and medications suited to the genes of an individual. This personalisation of healthcare and medicine holds great potential and promise for improving the quality of life and adding healthy years to the increased life expectancy. Personalised healthcare should be universally accessible – but with a focus on individual choice and privacy.
Internet literacy gives us unprecedented access to information as well as misinformation. Often, stoic empirical health data is countered and rendered discredited by creative clickbaity claims promoted by algorithms and favoured by individual biases. Creating awareness of what we know of a disease and what we do not is crucial. For most of the non-communicable diseases afflicting the Southeast Asian population, we are just beginning to understand their genetics and are developing personalised regimens. We cannot copy and paste personalised approaches from the West to the Indian populace because we are genetically different. Given the complexity of the information involved, the autonomy of a patient to make an informed choice and consent to the procedures outlined in the treatment is an enormous challenge.
Individual choice and independent consent should be a health right. In a collectivist society like ours, most often it is the family and not the individual who makes the choice or consents to the choice made by the medical representative. Even if we strictly implement individual decisions, is the average Indian citizen, yet, able to grasp the information presented to them in a clinic? Furthermore, economic, social, and gender inequity distort access to limited personalised healthcare and medicine avenues currently available.
Confidentiality of the data collected for personalisation, its ownership, and conditions of its use in the short-term and long-term, are all very important questions with far-reaching consequences that need to be addressed by policymakers in India. Typically, a patient provides a sample from which DNA is sequenced and the data allows the clinician to choose more effective drug(s). But who owns the genomic data: the company that does the sequencing, the clinician who uses that data, the patient whose sample it is, or the family of the patient who shares the genetic information? How and where is this data used and stored in the short and long term? Who has access to this data? These are critical questions for which we do not yet have answers.
We need individual-centric policies that clearly define the ownership and usage of our most personal information. Clinicians, academics, and the social sector need to work together to raise individual awareness, create social infrastructure, and participate in policy discussions.