The upcoming parliament session is expected to contain a bill allowing for the DNA profiling of unidentified bodies and missing people.
However, with consistent complaints of health insurance companies discriminating against those with genetic conditions, would many be reluctant about any kind of DNA profiling system?
The intention of the bill thus far only extends to unidentified bodies. For the time being this should alleviate any fears of use by health insurance companies looking to exclude those with pre-existing conditions.
Thousands of unidentified bodies are disposed of in India every year. With no genetic database in place these people are often not linked to any missing persons report, or identified by family members. This leaves a fruitless hope for the family who continue to search for their loved ones, as well as potentially wasting police resources in continuing a search.
Up to 40,000 people go missing every year in India according to the Lokniti Foundation. This figure includes many children and mentally disabled people. The Lokniti Foundation believes that by creating this genetic database of missing people and bodies, more will be identified by the families and the situations finally brought to a close.
The bodies could be identified even after disposal by checking the DNA record against that of family members who could voluntarily come forward for a DNA test to compare against the database.
A commission set up to formulate the bill has stressed the right to privacy, as the potential for the leak of genetic information could have considerable effects on the provision of healthcare. Similar privacy-related concerns have arisen in relation to Aadhaar, the Centre’s biometric identification database.
A recent court case — in which a man was denied insurance payouts due to his pre-existing hypertrophic obstructive cardiomyopathy — was settled in favour of the patient. The court determined that, without genetic testing, the condition may not entirely be caused by genetics, and so the insurance company was not within their right to deny him a payout.
If genetic testing were linked to the Aadhaar scheme, for example, this case may have fallen in favour of the insurance company. By establishing that a condition is entirely genetically derived, an individual may be denied health insurance by many companies. This could severely limit the patient’s ability to avail healthcare services. However, by establishing a genetic cause to a condition, treatment options can be far more targeted and therefore more effective.
DNA profiling has a considerable amount of potential to improve the provision of healthcare. The information that profiling a person could reveal is, however, sensitive, and should be kept private at the person’s discretion. It is to this end that one of the recommendations within the bill regarding missing people (who may still be alive) is that “DNA profiling would be undertaken exclusively for identification of a person and would not be used to extract any other information”.