What is knowledge?
Knowledge is everything and everywhere, and logically it should be just as accessible, right?
Today, in medicine and genome sequencing an alternative dystopia is being rolled out.
When 2000 doctors were surveyed in 2012, around half admitted to providing a ‘more optimistic’ prognosis to patients. This phenomenon has been given the name of ‘therapeutic privilege’. From a medical dictionary this is defined as, ‘An exception to the need for informed consent … allow[ing] a doctor to withhold information from a patient out of [a] concern [it] might psychologically harm [them]…’. If you’re feeling shocked, that makes two of us. When we go to the doctors, we have an unavoidable dependence upon them. Just as teachers understand and pass down knowledge about the world to educate our children, a doctor understands our test-results and should be educating us about our bodies. This means when we go the doctors we are being denied the truth of not only knowledge, but knowledge that we ‘own’, as it is knowledge about us.
Results, good, bad or inconclusive, are results. When we get our grades back in school, if we do well we can sit back and enjoy the summer. However, if we have the knowledge that we did not do well, we can prepare just that bit more, to do better next time. The same principle can be applied to our test-results from the doctors. If the result is bad or there are so many results that only the ‘significant’ ones come top of the priority list, then we as patients are unable to prepare for our future that lies ahead. Yes, perhaps human altruism kicks in, during a face-to-face meeting with the doctor, however the same dystopian attitude towards knowledge is now being used by genome sequencing companies; where faces remain behind the computer screens.
Many of these companies sequence your genome, but will then only go on to provide you information about variants of your genes that are known to have harmful consequences now. First of all, this is somewhat illogical as biomedical research is a rapid and expansive field. For example, within 50 years of our discovering our DNA’s structure we were able to sequence it. Therefore, what could be ‘benign variants’ of your gene now, might be discovered to have clinical significant a few years down the line, and you would be none the wiser. More importantly though, this means these companies filter out significant amounts of information to give you what they objectively deem as the ‘important information’. If it’s all information about our individual bodies, surely it’s all important?
We at Dante, believe in knowledge. Not only do we believe in knowledge, we believe every single person has the right to access knowledge. This is why here, we sequence your whole genome and give you back every single, nitty gritty detail from it because, well, it’s yours! Therefore, we are standing up to the knowledge-divide in the genome sequencing industry. We do this in the hope of providing you the ability to prepare for your future and this is because, as we are all taught, knowledge is power, and thus should not be a privilege.