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As Cabinet gives nod to DNA profiling bill, fears of genetic discrimination mount

The Union Cabinet has approved a controversial bill that would allow law enforcement agencies to collect DNA samples in order to create “DNA profiles”. These would then be used in forensic-criminal investigations and missing person searches.

The bill sparked vocal criticism during its formulation. Much of this opposition revolved around privacy disputes in regards to the mass collection of DNA profiles. In particular, many worry about the bill’s implication for those with pre-existing, genetic health conditions and their ability to avail healthcare.

Numerous stories have recently hit the media involving Indian health insurance companies denying coverage to those with pre-existing conditions.

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Legal implications for those seeking health insurance


This could be considered unconstitutional. The Delhi High Court has ruled earlier this year that a currently used clause which allowed insurance companies to deny an individual insurance based on their genetic disposition or heritage constitutes discrimination. As a result, the practice was deemed in violation of Article 14 of the Constitution of India under the grounds of discriminatory practices.

The recent case at the centre of the Delhi High Court’s ruling involved  a man who was denied insurance payouts due to his pre-existing hypertrophic obstructive cardiomyopathy. The Delhi High Court ruled that that, without genetic testing, the condition may not entirely be caused by genetics. As such, the insurance company was not within its rights to deny him a payout.

The ruling has done little to assuage fears of the potential for genetic discrimination that the new DNA profiling bill has provoked. As the wording of the court ruling suggests, if a genetic profile of the individual was established, the insurance company’s genetic clause would be valid and so they would be within their rights to deny the individual insurance coverage. This could effectively render health insurance unavailable to those in most need of it.

Such fears could be confirmed should the current profiling bill extend to incorporate, for example, the Aadhaar system. This would allow for insurance companies across the entirety of the country to access the genetic records of those wishing to receive health insurance.


Security measures within the Bill


Senior officials familiar with the Bill have attempted to dispel these fears. They say that several clauses of the Bill were tightened to make it stronger and immune to data abuse. “This doesn’t aim to create a database of DNA profiles…The data banks can only store information related to criminal investigations and the DNA details of suspects will be deleted,” said Renu Swarup, Secretary, Department of Biotechnology.

In August 2017, the Law Commission of India submitted a report to the Centre, saying that it “thoroughly examined” the draft bill. In their list of recommendations they repeatedly refer to means by which the bill may ensure confidentiality. They suggest maintaining both a national as well as state level DNA profile banks. This would allow for many cases to be handled in a more localised setting.

The Commission maintained that strict confidentiality was imperative. They also recommend setting up of a DNA profiling board to establish DNA laboratories and grant accreditation to such laboratories. This would ensure that any group handling the information is tightly regulated and selected.

Those found to be in violation of the confidentiality provisions would be liable for imprisonment, which may extend up to three years, and also a fine which may extend up to Rs 2 lakh.

The bill still maintains that the DNA profiling will only ever take place in order to address criminal cases or missing persons reports. There are no current intentions being discussed to take this any further. All DNA evidence would be gathered from a crime scene or from the belongings of the missing person in order to assist these cases.


DNA profiling could aid healthcare


While a controversial issue, the use of DNA evidence could considerably improve the quality of evidence within a criminal case. However, it is within the context of healthcare that DNA profiles could have their greatest impact.

Despite concerns of discrimination by health insurance companies, DNA profiles could significantly improve the provision of healthcare. By having a record of the genome of a patient, they can be far more easily analysed for the risk factors of many diseases. Cancer is the foremost example of this.

Mutations within the BRCA1 and BRCA2 genes for example are well known risk factors for breast and ovarian cancers. A woman with a mutation in either of these genes has a 72 and 69 percent risk respectively for the development of breast cancer over their lifetime. Mutations in either of these genes could be revealed through genetic testing.

For many women who test positive for mutations in these genes, a voluntary mastectomy is often opted for, as removal of the breast tissue has been shown to limit the potential for the development of breast cancer. DNA profiling could allow for numerous preventative measures such as this to take place, reducing the potential for NCDs within India.

At least for now, the DNA profiling bill will be limited to a forensics context. The bill will be tabled in Parliament in the upcoming Monsoon Session, which begins on July 18.

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