Biogenetics, DNA sequencing, personalized healthcare, what does it all mean? We are standing on the cusp of the next plateau of medical knowledge, and it is all thanks to our growing understanding of our genetic code. Science has already identified multiple gene “markers” that are indications of a genetic susceptibility to certain diseases. As this wealth of knowledge grows, we grow closer to making science fiction a reality – delivering targeted treatments, preventative care, and most eerily, know what hereditary diseases you will contract in the future with an unprecedented level of accuracy. In doing so, one must consider the policies and the human psychology that are affected by such a profound shift in healthcare.
Personalizing Healthcare: A Final Evolution?
When medicine started, it was more of an alchemy than a science. The ancient Egyptians had a system of medicine that was very advanced for its time and influenced later medical traditions. The Egyptians and Babylonians both introduced the concepts of diagnosis, prognosis, and medical examination. The Hippocratic Oath, still taken by doctors today, was written in Greece in the 5th century BCE. In the medieval era, surgical practices inherited from the ancient masters were improved and then systematized in Rogerius’s The Practice of Surgery. During the Renaissance, understanding of anatomy improved, and the invention of the microscope would later lead to the germ theory of disease. And now, we are about to turn it all on it’s head.
For hundreds of years we have perfected a system of diagnosis. For all our knowledge, we have always been reactive. Many of the worst diseases, including cancer, are manageable if treated early. But what if we could find out at birth a roadmap of our overall health for the rest of our lifetime, just from our DNA? Imagine knowing as an infant that in your old age you will likely develop Parkinson’s, or arthritis. What if simply knowing what’s to come and giving your doctor years of lead time could result in a much happier, healthier life?
What if the treatments could be specialized, with no side effects, because it was designed to target specific cells in your body (and only your cells). My biggest question is, if we are this close to determining which genes cause certain illnesses, how close are we to tweaking the human design to remove it entirely. Gene Therapy, targeted treatment. Hyper-advanced diagnosis. This is where we are going.
Are We Ready? Can We Handle the Truth?
After talking about the scientific benefits of the science, Jami Taylor, the speaker of the TEDx Talk, spoke about the implications… Are we psychologically capable of handling this knowledge? How many more abortions will occur if Parents know their child will have special needs? Will people that know they will develop terminal cancer give up now? As the famous quote goes, it is unclear whether humanity can “handle the truth”. She supports this by showing that even though costs are going down (from 95MM in 2001 to less than 8K in 2012 per genome) in , the technology is not being leveraged as much as it could be. Further, even though data suggests that people that learn the worst from the results report a sense of peace and acceptance- citing that they feel it gives them control of their life today – many people are afraid that we are gaining wisdom that will only bring sorrow.
I am far less concerned with what people will do with the technology, and far more concerned about what an Insurer will do with your health roadmap. We have a statistical healthcare system. You pay your whole life, just to offset the costs if you get sick. Treatments are less expensive because more people pay than are sick. But they pay, by and large, for the coverage, for the just in case. What happens when your future health state is not a gamble, but data? Will an insurer cover you if they know up front you will be expensive? Are they supposed to ignore the data that tells them who is a flight risk? What about healthy people, that pay their whole lives and never use it. Are they still expected to pay? The policy implications of this technology not only overturn, but completely eradicate existing national healthcare systems.
What Would You Do?
I would want to know. Know matter what it says, no matter what it means. If I am going to die, I still won’t know the hour, but I will know not to waste my time. Let me know if you would want to see your genome analysis by dropping a comment below.
Jami Taylor leads policy-related efforts with the Global Market Access function of Janssen Research and Development. In her role, she works with institutions around the world to help prepare health systems to facilitate and adapt to the onset of transformative medical technnologies.
She is also a mother of a beautiful son with crohn’s disease. During her TEDx talk, she spoke about science fiction becoming reality in healthcare – that doctors may soon be using genetic sequencing to bring personalized healthcare to the forefront of modern medicine. The talk focuses also on the mental and policy implications… If you were going to contract a really horrible disease, would you really want to know?