Recent years have seen a boom in open source technologies (Can you say Firefox web browser, Thunderbird email client, OpenOffice, Audacity audio editor). These technologies have the fundamental feature that their programming code is open to anyone and everyone for modification and improvement. This is in contrast to proprietary software such as Microsoft Office suite, Internet Explorer, Windows operating system, etc, wherein individual companies and the programmers they employ have sole access to the code for modification and improvement of the software. But while binary digits, java applets, and html code might all have been common elements of free exchange before, there is a new code on the free market (or perhaps a really old one).
Yes, the human genome is now joining the open source revolution. It is called the Personal Genome Project, and its goal is to recruit thousands of volunteers to share their personal genomes in a database on the internet that would be available for public research. Immediately one might think about whether the informed consent procedures for this project are robust enough to ensure that responsible choices are made on the part of conscientious individuals. Will the individuals know what kinds of reaseach their genomic information will be used for? But hold on...perhaps we have this all wrong. How much does informed consent matter when it comes to sharing our own genomes with the larger world. Sure, it is my personal genome, but it was inherited as well. People besides myself contributed to my personal genome, and they share in it as well. While my own personal genome might have a few unique signifiers, the vast majority of it is shared with other individuals. Moreover, I am not my genes. My genes are merely an inheritance I came into at conception, which predispose me to certain traits and behaviors, diseases and disabilities, but do not dictate the sum total of my identity. So how much do I really have at stake in my genetic information? Or to return to the earlier discussion, how robust does informed consent have to be in the case of the Personal Genome Project given that the human genome is as much a communal enterprise as it is my own?
The Personal Genome Project is already making the headlines, and will likely inspire considerable ethical debate in their wake. My own contribution to this discussion is to ask what, I beleive, is a fundamental question which sets the terms of the debate. To what extent is my own genetic code truly my own, versus a shared information bank with my fellow human beings? The way we answer this question determines how we discuss informed consent and genetic information, and in the specific case of the Personal Genome Project raises the question of whether it is not only ethically permissable to contribute one's personal genome to the database, but whether there is an ethical duty to do so.
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