Gene patents already putting lives at risk
The goal of science has always been to uncover the secrets of nature. This pursuit has, in the past, been the hobby of rich men who did it out of sheer pleasure and curiosity. As the cost of conducting experiments has increased, however, a devil’s bargain was struck; science became increasingly about the ability to exploit discoveries for profit.
Many of us are unaware that in the late 90s, a race was being fought between groups of scientists over the mapping of the human genome. One group was composed of scientists earnest about unlocking the secrets of DNA, wanting to share their data with the world. The other group was privately funded, and their interest was in the ability to use this information to establish patents on something most of us have taken for granted: our genetic information.
Because no one company was able to patent the human genome, companies have been busy patenting specific harmful anomalies in our genome that cause illnesses. Genetic Technologies in Australia managed to be issued a patent for a very specific form of epilepsy, which causes Dravet Syndrome. Because the company owns the patent, hospitals are not allowed to conduct any test for this specific type of epilepsy, for fear of being sued by the patent holders. To bypass this patent, hospitals are sending off samples to hospitals in other countries for testing if their symptoms resemble Dravet Syndrome, but they are not allowed to do any of these tests in house.
There’s apparently some debate raging as to what the ethical implications of patenting genetic sequences in any living organism, but it’s becoming obvious the debate is just a smoke screen. There should be no debate over whether human beings should be allowed to develop treatments and cures for diseases that cause misery, pain, and death. Genetic Technologies’ refusal to allow testing is due to their fear other companies will discover some new way of combating Dravet syndrome and their investment might be threatened by it. There is no clearer example of placing profits over people. It doesn’t help that the victims in this circumstance are children who are not properly diagnosed.
We are just now beginning to see the effects of these ridiculous patent laws. Research will continue to suffer so long as these patent trolls seek to endlessly control the flow of innovation and ideas. That any company could be so callous does not surprise me; what does is when we are silent partners in these travesties. Governments issue patents, but we in turn ARE the government. We seem to have forgotten this recently, and this may cost us dearly in the end.