Flash forward: Can screening for diseases make your life worse?
Genetic screening can warn you of latent health conditions. But do you really want to know how you could die?
Would you want to know the future? How about your own future, how long you have to live, which silent killers are lurking in your own body, passed down as unreturnable gifts from your ancestors?
In November last year, 39-year old Australian actor Chris Hemsworth found out from a series of genetic tests that he has a high chance of developing Alzheimer’s, a disease that destroys memory and other mental functions. His response: announcing publicly that he’s wrapping up the last of his $20 million movies, and taking a break from acting to spend time with his family.
Closer home, in May 2020, content writer Rupsha (who does not use her last name) experienced severe eye pain, redness and eventually a blurring of vision, a few days before her 27th birthday. What worried her more than the distress was the knowledge that she has a family history of severe iritis, a kind of eye inflammation. Terrified, she started looking up websites for any way she could know might happen to her. What she found instead was that there was a way to know for sure via a specific genetic test. “Following my doctor’s advice, I waited for the second bout of symptoms and decided to get tested,” says Rupsha.
It emerged she was carrying the HLA-B27 gene, which is responsible for autoimmune issues and can cause severe iritis. Her response: prescription medication to suppress inflammation.
On the one hand, tests such as these have been helping people across the world stay alert for possible diseases, prepare for birth complications and adjust to a disaster to come.
On the other hand, the knowledge often casts a shadow on the very life in question.
Dipanjana Dutta, a genetic counsellor and medical geneticist associated with Apollo Hospitals in Kolkata, says genetic testing isn’t the surefire option it’s made out to be. Not yet at least. “It is not an over the counter process like a thyroid or blood sugar test,” she says. Tests today can only deliver limited information about an inherited condition. Some can be detected right at birth or even prenatally (such as Duchenne Muscular Dystrophy, which causes progressive muscular weakness and death, as depicted in the 2022 film Salaam Venky). Many others are possible to detect only later in life, as with the case of Hemsworth.
So even science doesn’t have all the answers. “If these are single-gene disorders, much of them are known and we can pick them up,” Dutta says. “If I have an extended family history of Parkinson’s or Huntington’s disease or of breast and ovarian cancer, I should consider going for a test.” If you suspect you might have inherited schizophrenia, on the other hand, genetic information is only 20% to 25% accurate. “Ultimately, it’s the geneticist who decides whether a test will actually help.”
Even without genetic tests, family medical history is being used to monitor people’s health. Delhi-based podcaster Shashank Bhargava cut down sugar and refined carbs before he turned 30 because his father had Type 2 diabetes and he worried he’d develop it too. Those who’ve seen parents and older relatives struggle with heart ailments are more likely to cut down on trans fats and start cardiovascular exercises like running and cycling.
The trouble starts when you let someone else’s history get in the way of your future; when you let your father’s, uncle’s or grandmother’s battle with a disease convince you that this is how you will suffer too. That mental toll can trigger not just stress and depression but self-destructive spirals, alcoholism and addictions .
It’s why Dr Sonal Anand, psychiatrist at Wockhardt hospital, Mumbai believes that the role of the mental health counsellor is a crucial, inseparable part of testing. “The counsellor’s job is to send out the right message and not provoke anxiety,” she says. Counselling often also means dispelling myths about what science can actually do. “Couples often come to us with the demand for a perfect baby without any genetic issues,” Dutta says. “But we cannot give you perfection. We can only rule out inherited known genetic issues, familial cancers. We cannot guarantee health predictions.”
Rupsha dealt with her worries by mentally coaching herself for the possibility of iritis. Bhargava gave up on sugar for a year to see if he could live without it. It’s a more realistic response for those of us without Hemsworth’s millions at our disposal.
