In the last couple of years, I’ve written about gene patenting as it pertains to farming, and the threat posed by corporations like Monsanto as they attempt to lock down a market on genes and seeds. Yet, agriculture isn’t the only place where patents on nature are arising, and this is an increasingly troubling trend with serious implications for us as a culture and community. As is often the case with new developments in science and technology, trends are outstripping our ability to keep pace with them, and they’re definitely moving faster than the rule of law and ethics.
This has really been brought home with ongoing litigation over patents related to genes associated with breast cancer, and by association, the larger humane genome itself. As researchers and firms race to identify specific genes and learn more about what they do, there’s a growing recognition that there’s potentially huge money in this. Which is leading to attempts to patent genes as they’re discovered, raising some uncomfortable ethical, legal, and medical questions about whether this practice should be allowed.
On the one hand, genes are discoverable. The process involved in discovering them requires substantial money, time, and resources as firms need to sequence genetic material, prepare comparisons, conduct research, and learn more about the specifics of a gene, what happens when it doesn’t code or express properly, and what kinds of implications that might have for medical treatment. In the breast cancer world, for example, BRCA1 and BRCA2 are both of considerable interest because of their link with an increased risk of breast cancer, raising questions about whether people should be tested for these genes, and how they should respond to the findings if they’re mutated or variant.
The more genetic information collected, of course, the greater our depth of knowledge, and the more we can do with it. If a large population is tested for BRCA1 & 2 and then followed over an extended period of time, we can learn even more about what the gene does and how it acts, especially if we also use it in lookback studies of breast cancer patients and survivors along with their family members. The implications could be huge, potentially leading to better ways to prevent and treat breast cancer, with the ultimate tantalising possibility of a way to address breast cancer on the genetic level to prevent it from developing at all.
One might argue that such research provides an overall public good, and thus that its results should be freely available and ready for the use of all. However, the firms investing in this research are in the position of needing a way to fund it and related research, in awareness of the fact that sometimes research doesn’t work out, sometimes avenues of pursuit are fruitless, and the costs can be extremely high. When charities and public agencies conduct this research, meanwhile, they’re focused on the public good, but they may experience shortages of funding and struggle with a sustainable way to manage their research and results.
So corporations argue that they need patents to protect their work so that they can anticipate some profits from successful research. The same argument is put forth for new medications and medical devices; on the one hand, these improve quality of life for humanity and should be available to all, but on the other, the effort involved in producing them is considerable and the firms that do it want funds to support their work. Thus, patenting processes attempt to strike a balance between public good and, well, capitalism, creating an incentive to conduct cutting-edge scientific research with patents that will eventually expire, allowing anyone to work on and with the materials patented.
But what happens when you’re talking about patenting not a new pharmaceutical compound or a device, but an actual part of the human genome? Can a company exert a patent over something inside you? Does a company get to decide how you use your own genetic material, and dictate the nature of your relationship with your medical care provider? What happens if a patent allows a corporation control over genetic material in such a way that you can be tested, using a proprietary test, but your doctor can’t provide any information or advice about the outcome of that testing?
Personally, it gives me the creeps to think of patenting things found in nature. It sets a troubling precedent and raises some really awkward questions about who ‘controls’ nature, and in the case of medical patents, it highlights struggles over bodily autonomy. Gene sequencing conducted for the good of the public has been a long part of the history of the study of DNA, genetics, and inheritance. As it shifts into a private, for-profit enterprise, it’s becoming clear that genetic sequencing is also potentially a moneymaker, but we’re talking about something inside human bodies, something that I personally want control over.
I want to determine how, when, and where my genetic material is used. I’d certainly donate it to an organisation performing sequencing with the goal of developing a better understanding of genetics and possible gene therapies, targeted treatments, and more for the general public. But I don’t want it being used by private corporations who intend to profit from it, and have no interest in being the source of information that could be patented despite the fact that it’s in my body and came from me. I wouldn’t see any profits from that patent (not that I would want to profit from information that could benefit everyone), nor would I have control over the way that patent was used, and it could potentially be abused.
This year we saw a major biomedical patenting case before the Supreme Court, and it’s not going to be the last. We need to start thinking about how we want to approach the patent issue, preferably before it’s too late; I don’t want to live in a world where our genes can be used against us (and they already are), and where we don’t have a say over the contents of our own cells.