“There’s no gene for fate,” says our narrator.
He spends most of his morning carefully brushing, scrubbing and cleaning his skin and hair. Even one cell of evidence shed on his workstation is all the proof they need to destroy everything he has been working for. He knows he can do much more than dictated by the content of his cells. But how can he convince everyone else?
A world of genetically Valids and In-Valids
This is the driving force of Andrew Niccol’s film GATTACA (1997). which aims to explore the social effects of genetic screening and genome editing. GATTACA explores a future where babies are systematically ‘cleaned’ of imperfections’ before birth. Their genome sequences are edited to get rid of genes that could cause disease such as heart disease, asthma, or aesthetic mutations such as short sightedness. Everyone, including doctors and future employees know the life expectancy and cause of death of every citizen, seconds after they are born.
“We want to give your child the best possible start. Believe me, we have enough imperfection built in already.”
GATTACA centres around a deviant, a non-genetically engineered man named Vincent Freeman. And all his life, Vincent has dreamed of being an astronaut. However, his genetic makeup prevent him from applying to the government space centre, GATTACA. Genetically enhanced citizens, or Valid, have a social advantage, since job interviews, healthcare and even dating hangs on one’s genetic sequence. The genetic status is revealed by a single drop of blood and shown on an ID card. As Vincent applies for a job, his status flags immediately as a red In-Valid. This is a constant reminder of his genetic and social handicap, as well as his non-existent chances of flying to space.
Desperate to realise his goal, Vincent teams up with Jerome Morrow, a paraplegic Valid with perfect genetics. Together, they come up with a plan to change identities. Jerome supplies Vincent with hair, skin, blood and urine so that Vincent can enter GATTACA and begin astronaut training. If anyone found Vincent’s own DNA, they would reveal his genetic history and put him back into his predispositioned place.
The state of genetic profiling today
What would happen if we knew everything about our genetic selves?
Before he is born, Vincent’s parents take the future embryo to be genetically tested. The geneticists and doctors produce a data lists all potential health issues. A 89% chance for an attention deficit disorder. A 99% for poor a heart condition. An overall 30.2 year life expectancy. These figures are predictive, but they will Vincent for the rest of his life.
“They used to say that a child conceived in love has a greater chance of happiness. They don’t say that anymore.”
The decreasing costs of human gene sequencing methods lets us collect data from more people than ever before. Databases with over half a million sequences such as the UK Biobank helps researchers understand current diseases and monitor overall health of populations. While we don’t have GATTACA level prediction tools yet, we do have vast information on hereditary diseases and algorithms to predict disease progression.
These tools helps us identify diseases based on single risk-factor genes. For example, a carrier of a gene mutation associated with breast cancer has a 36-85% chance of developing a dangerous breast cancer. However, cancer is dependent on a huge range of genetic factors, as well as diet, exercise, and exposure to carcinogens. Further, early screening can catch the multiplying cells before they transform into a tumour. Despite the scary prediction, this patient might never actually develop cancer. A prediction is simply that – a prediction.
What happens when genome data becomes public?
However, a simple forecast can quickly become fact as genetic profiles become public. Some scientists such as Broad Institute cardiologist Amit Khera sees a future, in which people are given a score for their top 10 diseases at birth, giving everyone a genetic “report card”. Further, China is beginning to implement a ID card to score its citizens based on social and economic behavior use during job interviews, healthcare, insurance, travel, and dating life. China has even been reported to use genes to select future Olympic winners. Currently, small companies such as Genome Prediction hope to test IVF embryos for intelligence.
So how long will it take for genes to appear as one of the scoring factors? For only an over 90% intelligence score to let Chinese children into pre-schools and universities? With the first CRISPR edited babies reported in China, the fictional world of Vincent Freeman seems to crawl closer to reality.
As DNA sequences become known by other parties like friends, family, employers and government agencies, speculative data can quickly become associated with true capabilities. Privacy and protected access to genetic data is important for preventing this kind of prejudice. Everyone should thus be in complete control of their own information and opt out in keeping their DNA code secret. Data protection projects such as My Data intend to tackle this human right for genetic anonymity.
How can we prevent genetic discrimination?
Due to his 30.2 year life expectancy, Vincent’s parents struggle to place him in school for insurance reasons. Similarly, public genetic profiling could change the face of the insurance industry. Predispositions to conditions like Alzheimer’s disease, a service offered by DNA screening company 23andme, could leak into the hands of public sectors and affect how individuals are treated by life insurance companies. Currently, those predispositioned to develop Huntington’s disease patients already report cases of genetic discrimination.
“We now have discrimination down to a science.”
The concerns regarding genetic discrimination in the workplace have been met and addressed by U.S. legislation. The Genetic Information Nondiscrimination Act not only protects from discrimination based on the employee’s genetic information, but their family’s as well. Similar protection laws have been passed in Canada, and are supposed to appear in Europe by 2019.
People are more than their genetic profiles
Twenty years after its release, GATTACA is no longer science fiction. The film reveals how discriminative society can become when genome profiling becomes mainstream and mandatory. However, the future of genome profiling is not only in the hands of researchers and doctors. The public, policy makers, politicians, journalists and other societal groups shape how we behave around genome data. All of these sectors can help shape tolerance and public understanding of the technologies.
Further, films like GATTACA help us show that a powerful drive can override the odds.
“If at first you don’t succeed… try, try again.”
As Vincent scrubs his skin, he fights to show society that he is more than a dataset of predictions. And to us, he shows that sheer desire can achieve seemingly impossible things.
[Post based on an essay by Georgia Leisegang]