Bringing order to the DNA business

For the spiritual minded, the main mantra is know thyself. For the scientific minded, it is surprisingly the same. Scientists have made great strides in understanding the mysteries of our DNA, to know what keeps us alive. Or interrupts our lives.
 
Its ethnic diversity makes India an exciting place for DNA research and commercial services. While recent years have seen the rise of several genomics companies, the government is bringing some order to the capture and use of DNA-based information.
 
The DNA Regulation Bill, which should be a law soon, aims to create a rule-based framework to ensure that research and diagnostics can continue while protecting the privacy and interests of various stakeholders.

 

Key issues remain the protocol for obtaining, storing and using DNA information. The current bill is heavily focused on the use of DNA for investigating criminal activity. However, issues of parentage, organ transplant and identifying missing persons can also be resolved using DNA. By setting up the DNA Regulatory Board and national Data Bank, the bill sets strict rules that will oversee the use of personal information of individuals.
 
Genetics and genomics are being deployed for offering precision medicine solutions. With detailed information about patients, healthcare providers can create customised therapy for patients. Medicines can be created for specific type of patients if enough information is available. Preventive action and treatment of rare diseases will become easier as well.

 
The popular use of genetic information so far is to learn about our lineage. Several companies offer a variety of services which range from medical to forensics. Suspicious families want to check the lineage of individual member’s parentage. While DNA testing can also be done to verify an individual’s identity for employment purposes.

This brings in the questions of privacy of the data. While the DNA Regulatory Board will focus on the framework, the privacy is being simultaneously tackled in the Data Protection Bill, also awaiting approval by the Parliament. Personal genetic data of all individuals will require strong safeguards. Medical or private or government agencies that seek or process genetic data will have to ensure that it is protected and not misused. Personally identifiable information is not just about the social media footprint that we leave. Genetic information, medical data and biometric information has tremendous value. Ideally, each individual must have control over the storage and use of such data.

 
As Parliament and policy-makers put in place a much-needed regulatory framework, they should also be mindful of keeping an open approach. While personal information is sacrosanct, researchers and innovators can use such data for getting insights that were not possible before. Such research efforts should have access to the data under specific conditions. These must include anonymising the data so that individual information is not revealed. However, genetic data of hundreds of millions can offer medical and economic insights. Incidence of specific types of diseases can be ascertained with data analytics on such information. Non-medical research on social changes, migration, gender issues and impact of climate etc can also create fascinating insights.

 
Allied Market Research says that the DNA-based services market was about $6 billion in 2017. It is expected to grow to $25 billion by 2025 globally including in India. Apart from unanticipated benefits, the services include “biomarkers & cancer, diagnostics, reproductive health, personalised medicine, forensics, and others.” This market includes related consumables and instruments. There is no reason why India should not take strong steps to protect, deepen and enhance the DNA market. It will be an important dimension of India’s knowledge-based economy.