“I belong to a new underclass, no longer determined by social status or the color of your skin. We now have discrimination down to a science.” – Vincent Freeman, Gattaca (1997)
Gattaca is set in a society where genetic selection is normalized and a person’s potential and worth is calculated through genetic testing the second they are born. Vincent, the main character, struggles to navigate through a society that rejects him for being one of the few born through natural conception. His story provides a hauntingly dystopic lens on how human genetics can be manipulated and used, which at the time the movie was produced was very much an enigma to both the scientific community and the general public.
To put the film into context, the Human Genome Project, an international effort to identify and map all the genes of the human genome for the first time, launched in 1990 through the National Human Genome Research Institute (where I am also working as a policy intern this summer). Gattaca came out in 1997, and the Human Genome Project was completed in 2003. On the 10-year anniversary of the film, 23andMe launched, a direct-to-consumer genetic testing company that provides low-cost sequencing of an individual’s genome that now offers information on ancestry and health. Last year, about 20 years after the film, a Chinese scientist announced the birth of twins he genetically modified as embryos, the first time this has ever been done.
As I was watching this film a couple of weeks ago, I marveled at how quickly science and technology advances, and how something considered impossible a mere 20 years ago is a reality now. Although we are not quite yet in the dystopic world depicted in the movie, I can imagine how a couple more groundbreaking technological innovations and some wrong turns can get us there one day. With that being said, I tend to take the more optimistic viewpoint and believe that incorporating genomics into the clinical setting has and will continue to drastically improve treatment and care and may even better access and equity. Most people doing research in this field are working towards this goal, even if science fiction suggests otherwise.
I realized that this feeds into a bigger conversation that I have been having at my work this summer. At NHGRI, I have been analyzing the database it maintains on past and current state statutes and legislation related to genomics. On one side, innovations in genomics should be encouraged and supported, but on the other side, there are the consequences of these innovations to consider and which necessitate certain regulations and policies to protect individuals. Two topics that I have found during my research to have the greatest legislative priority in the area of genomics are genetic discrimination and genetic privacy. Many people get wrapped up in the hype of a direct-to-consumer genetic test, and that is in part due to the great branding and advertising these companies have done. However, there exist valid concerns that have been voiced already, such as how these businesses are storing their customer’s genetic information and to whom they are able to sell and make available that information.
It was comforting after realizing all of this to find out that there was a federal law called GINA, which restricts use of genetic information for employment and health insurance discrimination. Some states have broadened protections, such as California, which restricts the use of genetic information for discrimination in housing, education, and mortgage-lending, to name a few. Coincidentally, California also leads the other states by miles in terms of guaranteeing its residents certain privacy rights, in a law passed in 2018 called CCPA. I anticipate many more bills to get introduced on these topics in the near future, especially as the public becomes increasingly aware of the endless possibilities in genetics research.
Doing this research all summer has made me very fascinated in genetics and genomics, and I think most of my cohort can attest to that because I somehow always work it into our discussions. It has become sort of a ritual for me now to get into work, turn on my laptop, and read the latest news in the world of genetics. Sometimes I read about research that immediately brings me to something I watched in a movie, or something I read in a fiction book when I was younger. But if all my talk of dystopia and genetic discrimination has got you down, I think another quote from Gattaca captures a very important sentiment to remember: “There is no gene for the human spirit.”
A quick plug for the database I’ve been analyzing if you’re interested in your state’s laws: https://www.genome.gov/about-genomics/policy-issues/Genome-Statute-Legislation-Database