Working with artists, activists and educational organizations Yougenics is a series of events and activities using art to enter into discussions about genetics, genomics and biotechnologies.
The New York Times reports on the recent unanimous US Senate passage of a bill that has been in the works for about 12 years. Of course, read against the developments of genetic databases like CODIS, discussed in my last post, it's difficult to know what to make of this exactly. Of course, genetic discrimination in the workplace and obtaining health insurance is a reality, so GINA at least addresses the legal obligation of the state to intervene in obvious instances of corporate abuse. But, if, as synthetic biology guru Craig Venter has supposedly said, genetic testing would render virtually everyone uninsurable by insurers' definitions of risk, then there's obviously a much more complicated situation unfolding here than a simple one of easily identifiable discrimination. The general discussion doesn't even touch on concerns of bio-colonialism, or how this wave of science and commerce will differ from previous waves in its effects on expendable and oppressed peoples.
I recently ran across an AP story on a US Federal program authorized by Congress that would allow the Justice Department to collect DNA from anyone arrested or detained, even if not charged. Some thirteen states already had similar laws: Alaska, Arizona, California, Kansas, Louisiana, Maryland, Minnesota, New Mexico, North Dakota, South Dakota, Tennessee, Texas and Virginia. What is of concern, is not just the collection of genetic material but the archiving of it in the National DNA Index System and larger CODIS (Combined DNA Index System). CODIS is actually a software system for organizing and making accessible genetic data, between National, State and Local agencies. Of course, the development of CODIS involves private corporations in its creation and application. Companies like Science Applications International Corporation (SAIC). SAIC, is also notable for its joint venture with Bechtel working on the controversial Yucca Mountain nuclear waste facility. Other companies, like Orchid Cellmark, are involved in genetic testing for both self-surveillance applications (i.e. consumer DNA testing) and state-sponsored surveillance, like CODIS. With the boom in consumer DNA "consulting" that I have written about here in the past, the increase in state indexing takes on some new meaning. As we have seen with communications surveillance, with telecos sharing data with the National Security Agency, for example, there should be little doubt that genetic information could and would cross state-corporate boundaries.
The ETC Group has released a special report on Human Genomics titled "Direct-to-Consumer DNA Testing and the Myth of Personalized Medicine: Spit Kits, SNP Chips and Human Genomics". The introduction states:
In the coming months, ETC Group will publish a series of reports on the impact and implications of human genomics. The topic of the first report in the series is the burgeoning Direct-to-Consumer (DTC) genetic testing industry, which is promising consumers a guidebook for maintaining health as well as a gene-based horoscope predicting future illness. The second report will examine large-scale human genomics projects and their relation to biopiracy. A third report will examine the corporate context – the industry players vying to control and profit from the genomics revolution.
Last Fall, I took a class to witness the "Mobile Technology Unit" - a PR machine created to sell Monsanto's version of corporate agriculture (check out the video they made of its construction). Since that visit, I've been receiving Monsanto newsletters and other PR materials (visitors signed in). Most recently, they sent out a reproduction of a Brownfield news article (Brownfield is an Ag news org - talk about picking a strange name) about the USDA Risk Management Agency's (RMA) approval of a crop insurance program called the "Biotech Yield Endorsement." Available to corn growers in Indiana, Iowa, Minnesota and Illinois, the plan gives insurance premium reductions to those who plant a specific Monsanto produced variety of corn (YieldGard (r) and Roundup Ready (r) combinations). According to USDA RMA officials, this is the first time that such an insurance discount has been offered based on a specific technology. The politics of corn continues...
The New York Times has another, much needed, piece on the rise in genetic tests being offered to people on a consumer level and the lack of oversight and regulation of them.
According to a recent ETC Group press release, Synthetic Genomics founder Craig Venter is applying for some very broad and sweeping patents on a speculated first human-engineered species. The report cites a statement made by Venter to Newsweek: “If we made an organism that produced fuel, that could be the first billion- or trillion-dollar organism. We would definitely patent that whole process.” The ETC Group report is available as a PDF and we also recommend looking over their explanations of the synthetic biology industry in comic form (the image above is from the "Syndustry" comic).
unlike traditional drugs, biologics aren't vulnerable to generic competition, because the U.S. Food & Drug Administration is still mulling over how to regulate them. So instead of getting exclusive marketing rights for a decade as is the case with many other drugs, manufacturers of biologics get protection indefinitely—or at least until the FDA develops regulations.
Importantly, this doesn't mean that they aren't licensed and tested, but that the production and testing of them is significantly different because of their biological starting point. As the FDA states:
Because, in many cases, there is limited ability to identify the identity of the clinically active component(s) of a complex biological product, such products are often defined by their manufacturing processes. Changes in the manufacturing process, equipment or facilities could result in changes in the biological product itself and sometimes require additional clinical studies to demonstrate the product's safety, identity, purity and potency. Traditional drug products usually consist of pure chemical substances that are easily analyzed after manufacture. Since there is a significant difference in how biological products are made, the production is monitored by the agency from the early stages to make sure the final product turns out as expected.
So the move towards a consumer-based form of genetic profiling continues... The New York Times has a story today about companies that will, for a fee, provide the genetic equivalent of a personal tarot card reading, providing a genetic answer to your nagging questions about why you don't like brussel sprouts. But, of course, more serious questions are in the cards, like your predisposition to breast cancer or arthritis. While the author does briefly remind us that genetics isn't definitive proof of very much (literally in one sentence), she spends the rest of the entire article discussing how it might as well be. I have just finished reading about a group in the San Francisco Bay area called the Toxic Links Coalition who has been actively working to put the environmental causes of cancer more on the front burner in a time when "prevention" of breast cancer really means detection, through mammograms and genetic screening. In such a context, this move to consumer genetic profiling is very disturbing indeed. We are on the cusp of what could be called Eugenics2.0... just as we now subject ourselves to data-surveillance in exchange for easy-to-use, networked communications tools, we can see the same happening with our genetic data. Many of us would likely supply our genetic code to corporations in exchange for knowledge about predispositions to cancer and genealogical information. And in effect, we create genetic "gated communities" where those with resources use such test results to get medicalized treatments (what else is the point of knowing if you're likely to get cancer?), while further privatizing medicine and removing any responsibility for the creation of toxic environments, leaving those without access to the testing/treatments to suffer the consequences.