Genetic testing, privacy and discrimination

Published Oct 15, 2018, 1:43 am IST
Updated Oct 15, 2018, 1:43 am IST
We are aware that we leave behind our DNA every time we comb our hair, brush our teeth, give blood during medical check-up, etc.
Just a decade later, that same gorgeous star shocked the world when she announced that both her breasts and ovaries were gone.
 Just a decade later, that same gorgeous star shocked the world when she announced that both her breasts and ovaries were gone.

When I saw the movie Lara Croft-Tomb Raider back in 2003, I was blown away to watch Angelina Jolie perform her own stunts. The way she galloped on a dark horse, spun a shotgun from side to side and fired at alternating targets amazed me to no end. She not only was an epitome of paramount fitness, athleticism, and nimbleness but was also considered the most beautiful women in the world with an unusual melange of porcelain skin, pneumatic figure, feline blue eyes and luscious bee-stung lips. She was so gorgeous that any women would have killed to look like her, even if it was just for a day.

Just a decade later, that same gorgeous star shocked the world when she announced that both her breasts and ovaries were gone. Superstar Angelina Jolie’s abrupt headline revelation in May 2013, of a double prophylactic mastectomy performed on her following a positive genetic test for the BRCA1 gene mutation, which predicts a risk of breast and ovarian cancer, dazed as well as stunned the world, shifting the spotlight immediately, on the burgeoning field of genetic testing. Following her disclosure, millions of men and women queued up at genetic testing clinics to get their DNA tested giving rise to a phenomenon called the “Angelina Jolie Effect”. As people still continue to do so, genetic tests have over the years become more commonplace and accessible today. Basic predictive genetic tests can now be ordered online as well, for a few thousand rupees.


Today in all, we have 26,000 genetic tests available for 5,400 conditions, according to the National Institutes of Health Genetic Testing Registry. A Hyderabad based company called “Mapmygenome” charges anywhere between ?2,000 to ?25,000 to get the human genome tested and deliver a test result called “Genomepatri”. Our genomes are like a horoscope - it can reveal hidden secrets of diseases we are likely to manifest in future, if interpreted correctly. Overnight, numerous DNA testing labs and collection centres have mushroomed all over the country which are willing to genetically test people at competitive rates as prices continue to plunge rapidly. Genetic testing laboratories in India are not governed by any specific legislation. They require the same set of conformances that a diagnostic laboratory performing blood glucose tests does. It is imperative therefore that government takes steps to regulate ‘Genetic Testing’ in our country.

We are aware that we leave behind our DNA every time we comb our hair, brush our teeth, give blood during medical check-up, etc. The billions of DNA we shed on a daily basis can become detectable if sensors are installed at our office, in malls, airports, stores we frequent etc. This would make us trackable in ways the mobile phone could never. Imagine the consequences, if such exuviated DNA is recovered, replicated, and sequenced at will. Our DNAs would unveil tales we might not want others to know such as our predisposition to alcoholism, depression, aggressiveness, sexual orientation, Alzheimer’s, Parkinson’s, bipolar disorder and even our criminality.

In this era of expanded genetic testing, as newer tools and cheaper methods to sequence entire genomes and compile family history in databases emerge and become widespread. We are in danger of this information being used against us. It’s imperative that we become aware of the impending dangers of genetic discrimination.

 For instance, it will now be possible to forge genetic evidence in any crime based on the profile available in the domain without even having a sample from the real person. This means engineered DNA samples of innocent persons can be planted at the crime scene and the forensic laboratories wouldn’t even be able to discern a planted sample from the sample of the actual innocent person. Anybody having an axe to grind can frame anyone using fabricated DNA, in spite of it being esteemed as the gold standard of evidence.

Today it’s also easy to get any DNA sequenced to perpetuate discrimination. Why would any company hire an employee whose DNA has a predisposition to cancer, alcoholism, cognitive decline etc? There are several genetic clinics which gladly receive samples such as toothpicks, hair-combs, cigarette-butts, chewing-gum, licked-stamps etc and sequence the DNA on it for legal, medical, gender or paternity matters for a price as less as ?7,500. Mind you, this is perfectly legal today. If an employer is not sure whether he should choose the candidate who came for the interview? He can dispatch the teacup from which the candidate sipped his tea to the lab to know his health and mental proclivity and save his company cartload of money from being incurred towards medical benefits. Don’t like your wife? Just post her DNA results online to demonstrate to the world, her propensity towards mental illness and aggressive behaviour. If someone wanted a normal child, he would get the gay foetus of his wife aborted. Reality is, p
ortable Chinese machines can be ordered today on eBay to check babies DNA, so are under $20 microscopes to check the presence of “Y” chromosomes.

At the moment health insurance companies are using primarily family medical history to decide insurance premiums. If employers and insurance companies insist on genetic tests then most of them would not be employable or insurable. With access to genetic testing data, the health insurance rates are only going to rocket upwards. Any discrimination based on genetic information, therefore, deserves to be discouraged.

In February this year, Delhi High Court ruled against discrimination in health insurance by United India Insurance Company against a person having a heart condition which was perceived to be a genetic disorder. The court held, “Discrimination in health insurance against individuals based on their genetic disposition or genetic heritage, in the absence of appropriate genetic testing and laying down of intelligible differentia, is unconstitutional”. This was subsequently partially stayed by the Supreme Court. India today desperately needs a law that prevents genetic discrimination. In this era of rampant genetic testing, we need to prevent discrimination and uphold “equal treatment under the law”.

Genetic discrimination violates Article 14 which upholds equality and equal treatment of all under the laws. The Supreme Court recently in Justice KS Puttaswamy (Retd.) & Anr. v. Union of India unanimously held that the Right to Privacy is a Fundamental Right under Article 21. Genetic Discrimination needs to be brought under the privacy ambit as everyone’s genome is a private matter. Delhi High Court has set the ball rolling with the aforesaid judgment, it’s now up to the legislature to uphold the commitment against genetic discrimination by enacting a law.

Most countries have a law against genetic discrimination. The USA in 2008 enacted “The Genetic Information Nondiscrimination Act (GINA)” a federal law that protects individuals from genetic discrimination in health insurance and employment. In the USA, a woman was turned down for life insurance because she had a risk-conferring BRCA1 variant. GINA has several limitations. It does not cover schools, mortgage lending, or housing. And it excludes other forms of insurance like life insurance, long-term care, and disability insurance. The Council of Europe has adopted a set of recommendations on the use of genetic information for the purpose of insurance. Canada’s recent “Genetic Nondiscrimination Act” makes it illegal for insurers or employers to request DNA testing or results. It is reported that insurers in the U.K. are currently under a voluntary moratorium agreed upon between the Association of British Insurers and the

government until 2019. Under the circumstances, India cannot afford to lag behind anymore, we should enact our own law by borrowing the best features from the world.

A brilliant sci-fi movie titled Gattaca made in 1997 by Andrew Nichols splendidly depicts the perils of genetic testing and genetic discrimination. Set in a dystopian future, where the society discriminates people based on results of their DNA tests, the genetic test report of protagonist Vincent at birth points to death due to a  congenital heart condition at the age of 30. Despite being proclaimed a genetic invalid by the society, Vincent fantasies getting selected for a manned mission to Saturn’s 14th moon Titan. He decides to fight his fate by purchasing the genes and assuming the identity of Jerome Morrow (Jude Law), a genetically enhanced valid. Vincent manages to pass gene tests by meticulously making use of samples of Jerome’s hair, skin, blood and urine, but just when his dream is within reach, he becomes a prime suspect in a murder case. He has to dodge his police officer brother, long enough to board the rocket. With a little assistance from a doctor at the launch pad, he realises his dreams.

This is a story of triumph where Jerome with rugged and perfect genes miserably fails while imperfect Vincent with genetic limitations transcends his

deficiencies. It may be therefore better for us to become aware that there is something more significant than DNA which is embedded within each one of us, which defines us.We may not be able to glimpse it under a

microscope, but this invisible spirit or soul which helped Vincent conquer his genetic limitations could possibly help us too in overcoming our genetic hindrances.

(Dr K.Jayanth Murali, an IPS officer, is Director DVAC, Chennai)