Social Justice for Misuse of Science
All of us see both the promise and misuse of technology. The promise of a cure for neurodegenerative disorders overshadowed by the ethics of stem cell research, or the ability to rid the world of hunger dimmed by questions about the long-term effects of genetically modified foods. Even when talking about pharmaceutical companies and the unethical treatment of patients in India, no one would say that we would be better off had pharmaceutical companies never invented life-saving medications. All of these examples and hundreds, even thousands of others highlight the dichotomy of science-the ability to both help and hurt people. As a proponent of scientific research, I would love to be able to say that all scientific discoveries are used to help people, but if I did, I would be lying. In a time of great scientific discoveries, it is important that we don’t undermine the successes with glaring failures. For example, in 2004, Arizona State University was sued for misuse of indigenous DNA. The university took DNA samples from the Havasupai tribe after the tribe gave the university permission to use them for a diabetes study. The university then proceeded to use the samples for studies on schizophrenia, inbreeding and migration patterns. The original case was thrown out but just recently, the Court of Appeals decided to take another look at the case. It may not be justice for the Havasupai tribe yet, but it is a start.
On a slightly more comical/this would be funny if it weren’t true note
If I asked a hundred people on the street what the hardest part of scientific and pharmaceutical research was, I would get a variety of answers, but I can pretty much assure you that none of them would say patenting. If some of you are now furrowing your brows and wondering how patenting applies to genes found in nature, you are not alone. The people at Gencom (and anyone with common sense) wonders how companies and universities can have patents on genes since they are natural phenomena and therefore can not be patented. Common sense apparently does not apply here so as of 2009, 20% of genes found in you, me, and every other person on the planet have patents on them (rest assured, you will never see a penny). Even genes and genetic disorders found using federally funded research programs are patented by universities nowadays. The Bayh-Dole act saw to it that these universities could patent their discoveries and pull their findings out of the public domain. So if you want to research any of these genes, you will pay a pretty penny for the rights to do so. And the best part, some of the patented genes are major HIV genes-as if AIDS research wasn’t expensive enough.
So one wonders what they could possibly do-after all, you would need a degree in patent law to figure out the sideways thinking that allowed for patenting of a natural biological phenomenon. However, there are things that we can do. One is to support the Genetic Bill of Rights. It is not an actual legal document, but rather a set of guidelines that is set up to promote discussion of issues we face with new applications of genetic technologies. After all, raising the issue is the first step. Gencom also has online summits where you can express your thoughts and opinions about the Genetic Bill of Rights. There is also an introductory video below. It is the first video in the series about the Genetic Rights art project, which is shown in a series of Youtube videos. For simplicity, I have included the introductory video below and the others can be found on Youtube. CC Arshagra, who created the Genetic Rights art project, gives a good beginning to the debate, calling on people to express their opinions on the matter in whatever way they can, so to avoid getting to a place where we no longer have a real choice in the matter.
Also, as a side note, if you want to support the Havasupai tribe and are ever down in Arizona, they own the land on which some of the country’s most beautiful waterfalls sit-like the one here
