So awhile ago I wrote a blog for the RiAus about genetic discrimination aligned with genome sequencing and I thought I would post it up on my blog so people can read it too.
It was originally posted on [http://riaus.org.au/articles/identity-theft-2-0/] the RiAus page on June 25th, 2013
Identity Theft 2.0 – The Next Generation In Next Gen Sequencing
“Hello Mr. Yakamoto, welcome back to the Gap. How’d those assorted tank tops work out for you?” – Minority Report, 2002
Though that may have seemed far-fetched when the movie came out in 2002, today, technology like that may be just around the corner. Though we may not be ready for personalised advertisements on subway lines or tailored shopping assistants when we enter a store, with advancements in sequencing technology, we are now able to understand more about our genetic make-up.
Data from the National Human Genome Research Institute show that sequencing a genome in January of this year cost $5,671, costing only 6 cents per megabase (megabase = 1 million DNA bases, or DNA code ‘letters’), in comparison to 9 cents per megabase (total genome $7,666) at the same time last year. If the cost continues to decrease at the same rate, sooner rather than later, the dream of a $1000 genome will be a reality.
However, with sequencing becoming so cheap and readily accessible, what sort of consequences may arise from having your genome sequenced? Yes, it would be beneficial to know which of the drugs currently on the market would aid in the treatment of an ailment you may have, or the probability of contracting a disease. But once an individual’s genome has been sequenced, how confidential is that information?
What will happen once sequencing becomes more readily accessible? Will it be open to the entire population or will it be like “The Island” where only the rich and famous have access to the technology to protect them from harm? If it is more readily accessible, will it become universal and then who will pay for it?
It has been hypothesised that one day an individual will be able to carry their entire genetic information on a card, similar to a credit card. In fact, Howard Jacob already proudly boasts that he carries his full genome on an app on his tablet! With this information literally at our fingertips, how safe are we from identity theft or genetic persecution? Theoretically, pharmaceutical companies can use this information to skew research to the most financially beneficial drug products, focusing on creating drugs that would be used by the greatest number of individuals. But most importantly is the potential use of that information by groups such as insurers, employers, the military or adoption agencies.
In one scene from the movie Philadelphia, Tom Hanks recites a verdict from the Supreme Court that stated that the Federal Vocational Rehabilitation Act of 1973 prohibits discrimination against otherwise qualified handicapped persons who are able to perform the duties required by their employment. That got me wondering whether such legislation existed for discrimination against individuals who have undergone genetic testing. The Genetic Information Non-discrimination Act of 2008, or GINA, is a federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. This new law prevents discrimination from health insurers and employers, however, there are certain circumstances not covered by the law. GINA does not apply to employers fewer than 15 employees. Also it does not extend to the US military or any related health insurance, such as the TRICARE military health system, the Veterans Health Administration or the Federal Employees Health Benefit Program. Lastly, the law does not cover long-term care insurance, disability insurance or life insurance.
As a society, certain qualities should always be protected, particularly those individual and immutable qualities that are impossible or very difficult to change. Of all the qualities we share as a population, whether it be race, national origin, skin colour or even gender, what is more immutable than our genes? Outside of medical procedures, we are stuck with the genes that we have been born with. They’re not something that we have chosen for ourselves, but rather DNA that we have inherited from our parents.
Unlike the US, in Australia we do not have any specific legislation to protect us from the legal and ethical dangers of genetic testing. Instead we incorporate this protection into our existing legislation. For example, additions and modifications have been made the Disability Discrimination Act 1992 to include disabilities that “may exist in the future (including because of a genetic predisposition to that disability)”.
But as the science progresses so quickly, I’m still haunted by the possibility of a ‘Gattaca’ style world where our genetic code does decide who we can marry, what job we can hold or even where we can live. Would you want to live there?
By Rakshet Sachdev
Tell me what you think.
– Written by Rakshet Sachdev
Find more of my in-cohesive ramblings on twitter @rakshet