Genetic Discrimination: Need for a separate law

The term ‘genetic discrimination’ refers to differential treatment that is meted out to an individual based on his or her specific genetic make-up. It arises due to a prejudicial assumption that a particular type of gene mutation is more susceptible to a disease. There is a popular belief that genetic composition of a person decides his or her characteristics and capacities, as a result of which the actual physical and mental capacities are never tested.

Historical Context

The practice of verifying occurrence of a disease through genes began around mid-1990s when the first genetic testing was done to identify hereditary cancer risk. But then there was no legal mechanism to prevent genetic discrimination and patients and clinicians had become weary of the ongoing discrimination on the basis of genes.

However, the actual practice of genetic discrimination manifested itself in a heinous form during the Second World War when the Nazis under the leadership of Adolf Hitler distinguished between desirable and non-desirable genes and caused mass genocide of undesirable ones. Some Nordic countries also followed the practice. The main criteria then was discrimination on the basis of wealth, physical or mental disability etc.

Implications of Genetic Discrimination

This sort of popular belief has instilled fear in the minds of the persons requiring to undergo genetic tests. Genetic tests play a key role in some areas like getting a health insurance or sometimes even while gaining employment. Some common fears are:

• Losing of health insurance cover or a rise in premium for the insurance if proven positive in a kind of gene type.
• Losing employment or demotion in case of genetic make-up indicating higher vulnerability to a disease.

This fear arises before the test and even after the results are received. In case of a physician the question arises whether to recommend a patient to undergo genetic tests as it could be prejudicial to their interests.

Genetic Discrimination in India

In a recent judgement by Delhi High Court, United India Insurance Company was prevented from discriminating against a person having a heart condition that is regarded as a genetic disorder.  The Court rightly ruled that any discrimination against individuals in health insurance based on their genetic heritage without carrying put appropriate genetic testing and in the absence of intelligible differentia is an unconstitutional practice. This is a landmark judgment in times of cheaper availability of tools for genetic testing and compilation of database on family history that pushes genetic discrimination further.

This has also reignited the debate that India needs a separate gender discrimination law on the basis of below arguments:

• Genetic discrimination violates Article 14 which upholds equality before law and equal treatment of all under the laws.
• After the Justice Puttaswamy v Union of India judgement, declaring right to privacy as fundamental right, genetic information should also be brought within its ambit. Genetic discrimination law needs to be framed in a manner that confidentiality of genetic data is maintained and used only with consent of the person to whom the genetic data belongs.
• Scientific Innovations still need to establish the interrelationships between the gene and diseases. In the absence of a fool proof evidences the genetic discrimination would lead to discretionary powers affecting the rights of Individuals.
• The whole concept of the medical insurance would become cumbersome if the genetic discrimination is not banned in explicit terms.
• The concept of pure race which led to genocide in Germany was based on the myth of racial supremacy. In the era of post truth this tendency needs to be countered with a ban on genetic discrimination.

Following Precedents

India has a lot many countries to draw inspiration for developing its genetic non-discrimination law. One main example is that of the USA. In the year 2008 the Genetic Information Nondiscrimination Act was passed. Its main aim is to prevent unauthorized access to genetic information and discrimination on the basis of this data in insurance and employment cases. It prevents employers from using this information for their hiring or promotional decisions or for determining eligibility for training programmes.

Canada too has a Genetic Non-Discrimination Act that was passed in 2017. It makes it a crime to ask an individual to undergo genetic testing as a condition for provision of any goods or service and also for entering or continuing a contract. It prevents genetic testing as a prerequisite for any insurance coverage.

Conclusion

In the era of rampant genetic testing, India needs to prevent discrimination and uphold the “equal treatment under the law”. Judiciary has set the ball rolling with the judgment of the Delhi High Court now the legislature must follow the suit to uphold the commitment against gender discrimination.