In my humble opinion one of the most overlooked social and scientific changes in the past two years has been the rapid advent of DNA sequencing. The human genome is huge, but recent advances allow 100,000 base pairs (bps) to be sequenced at single time. It is predicted that within a few years, an entire human genome (around 3 billion bps) could be completely sequenced in less than a day for around US$100. Undoubtedly, this has huge ramification in labs and research centres around the world. However, the greatest impact will be felt in the relationship between patients and our healthcare systems. Genetic conditions can be diagnosed near instantaneously allowing for faster access to treatments. Obviously there are many benefits to the changes, but what I want to address today is the question of who controls your genetic information you hold so dear.
Just like putting your credit card information or personal info into ‘legit‘ websites, once your genetic information has been decoded, you have limited control over where it goes and who views it. Unlike a credit card though, you can’t call your credit card company (which I hate) or your bank (which I hate even more) and cancel the card. You only get one set of genes and you can’t order a replacement. Knowing this, your genetic information is something that you should guard very carefully. Currently, outside of research, there are no laws in Canada to protect your genetic information.
Furthermore, there are now companies that offer a full genetic screening privately from the comfort of your own home. The leader in the industry is 23andMe. For the bargain price of US$399 you can learn about genetic disorders you carry as well as a host of other genetophile (who says I can’t make up words) information. Simply spit into a vial, mail it to the lab, then jump online 2 weeks later to discover your genetic past (and future). You’ll learn about the currently mapped 113 traits that you may carry, ancestry, and can even participate in research studies. 23andMe claims that this can help people by increasing their preparedness for potential genetic diseases to come. But here is the rub: do you really want to know your genetic future?
Even if you don’t, there are a host of people out there who do. Lets focus on insurance companies. On many traditional life insurance policies the insured must be completely forthcoming in regards to potential health risks. A family history of heart attacks, strokes, ect. must be fully documented in order for the insurance company to cover you and assign a deductible/premium. If this is the case, does the insurance company have the right to genetically screen potential clients prior to covering them? Can they charge more for someone who lives a healthy lifestyle but is predisposed to heart attacks than someone who is (to be blunt) fat and lazy, but has no negative genetic predispositions?
There is a whole other side to the insurance debate. If you use services such as 23andMe to learn more about your genetic predispositions, you could conceivably take advantage of insurance companies by withholding health information from them. Should an individual’s right to know and control their genetic information take precedent over an industry’s ability to be profitable? Does the overhead cost of the genetic analysis (US$399 or less) stop low income families from having the same advantage as those who can afford it? These are important questions and so far our political leaders haven’t even begun to ask them.
There have been some successes in genetic law. The recently passed Genetic Information Non-Discrimination Act (or GINA) prevents US insurers from denying coverage or charging increased premiums based on an individual’s genetic potential (more here for Law kids). The bill passed unanimously save for one vote (thanks Ron Paul), signaling this is an issue that can be agreed upon by both sides of the aisle. Ted Kennedy stated that the bill was the “first major new civil rights bill of the new century”.
There is no question that ethical issues will arise around genetics in the next several years. What we need to do now is make sure that our politicians and representatives are aware of the issues and talk about them before the time to act has passed. Educate yourself and your friends about the potential of services like 23andMe and their potential ramifications. You can go to the 23andMe homepage and take a tour that shows you all the information that they offer their clients. Find your MP here and write to them encouraging them to engage with scientists on the issue. (Also refer them to this blog so I can get wicked famous). I would also highly recommend watching GATTACA, a movie that was talking about genetic discrimination well before its time.
How do you feel your genetic information should be used? Would you pay to rub the proverbial magic lamp and get a glimpse into your future?