Comment Response from Coalition Against Biopiracy and ETC (Score 2, Informative) 248
The Captain Hook Award to Google in the category of "worst threat to genetic privacy," has attracted some strong reaction. A few people have written in Google's defense, claiming that Google isn't a biopirate and that the Coalition Against Biopiracy is wrong to name them. They argue that it isn't biopiracy because Google will not be patenting the genomic information they will be storing -- and, since anyone can access the information, its not monopolistic. They point out that this approach is actually anti-monopolistic because the genomic information would be freely available to everyone. And if genomic information is easily available, Google's defenders point out, it is more likely to facilitate the discovery of cures and new medical breakthroughs.
Here's our response:
First, the award wasn't for 'biopiracy' it was specifically for posing a 'threat to genetic privacy'. Even if Google makes all the genomic data it holds anonymous -- it is still possible to identify an individual's data by genetic fingerprinting. On Google Video, Google has a video of an internal talk on genomic databases where the speaker admits this is a big potential problem, and a troubling issue that Google is going to face in the future.
But whether or not genomic information is available for free or not is not the point - the important point is that it would facilitate access without consent. When you download a document from the internet (via Google) you have the implied consent of the person who posted it to that public space that it is now for common use - this is enough because this is only data and not much more - it is not as personal as an individual's genomic information. By contrast when you access somebody's genomic data you need to have explicit consent because this is something very personal that has an important bearing on their identity, health, right-to-privacy, personhood etc. Access to an individual's genomic information -- in the wrong hands -- opens up possibilities of discrimination in the workplace, for example. If Google makes all personal genomic data available for anyone to use it is also making that available to profit-making enterprises -- and it's not clear how they could put in place an adequate consent mechanism to do this. This data is not Google's to redistribute (and it shouldn't even be Craig Venter's). It is also misleading to think that this data is going to be freely and equally available to everyone, because only certain specialized knowledge enterprises have the ability to make use of such data, and, by and large they are private, for-profit and they won't re-distribute a penny back to the people whose genomic information they are using. Genomic information is not like software code and it's wrong to compare them -- it belongs very personally to individuals. When you use or distribute that information without explicit consent, there is a victim. The 2005 Captain Hook Award to Google is intended to raise questions and concerns about a future threat to genetic privacy. We believe these issues need public attention and should be widely debated to forestall the most dangerous and socially harmful scenarios.
The Coalition Against Biopiracy also received a few complaints about naming Craig Venter as a recipient of one of this year's Captain Hook Awards. We believe he's quite deserving. Go here for more background on Venter's 2004 global expedition to collect microbial biodiversity:
http://www.etcgroup.org/article.asp?newsid=442
http://www.etcgroup.org/article.asp?newsid=473
Venter is the flamboyant scientist who first grabbed headlines back in 1991. While employed at NIH, part of the US government's Human Genome Project, when he filed for US patents on thousands of gene sequences from the human brain.
Venter's global expedition to collect microbial diversity challenges national sovereignty and raises more doubts about the already problematic access and benefit-sharing work of the Convention on Biological Diversity. More significantly, Venter's work poses ethical and environmental concerns about the use of biodiversity to build new life forms from scratch. Intellectual property claims on human-made life also pose far-reaching ethical concerns. In the Galapagos, in Bermuda, and in French Polynesia -- Venter's yacht was steeped in controversy and unanswered questions about public domain diversity and patenting, human-made creation of novel life forms, and violations of national sovereignty.
Propelled by venture capital and taxpayer dollars, the field of synthetic biology or nanobiotechnology is advancing rapidly in the absence of public debate or regulatory oversight. But not to worry, Venter is part of a team that is undertaking a study to examine the societal implications. In June 2005 the J. Craig Venter Institute, the Center for Strategic & International Studies and MIT announced that they will undertake a joint project to examine the societal implications of synthetic genomics and regulatory needs. Unfortunately, those who are stepping up to assess the societal implications of synthetic biology are closely linked to those seeking to commercialize and profit from it. One of the projects' directors, Drew Endy of MIT, is co-founder of Codon Devices, a company that synthesizes customized DNA segments. Another project director, Robert Friedman, is employed by the Venter Institute, whose founder, J. Craig Venter, raised $30 million from private investors to establish Synthetic Genomics, Inc. in 2005, a company that aims to manufacture organisms for industrial purposes. Read more about the company here: http://www.syntheticgenomics.com/
Jim Thomas and Hope Shand, for the Coalition Against Biopiracy and the ETC Group
Here's our response:
First, the award wasn't for 'biopiracy' it was specifically for posing a 'threat to genetic privacy'. Even if Google makes all the genomic data it holds anonymous -- it is still possible to identify an individual's data by genetic fingerprinting. On Google Video, Google has a video of an internal talk on genomic databases where the speaker admits this is a big potential problem, and a troubling issue that Google is going to face in the future.
But whether or not genomic information is available for free or not is not the point - the important point is that it would facilitate access without consent. When you download a document from the internet (via Google) you have the implied consent of the person who posted it to that public space that it is now for common use - this is enough because this is only data and not much more - it is not as personal as an individual's genomic information. By contrast when you access somebody's genomic data you need to have explicit consent because this is something very personal that has an important bearing on their identity, health, right-to-privacy, personhood etc. Access to an individual's genomic information -- in the wrong hands -- opens up possibilities of discrimination in the workplace, for example. If Google makes all personal genomic data available for anyone to use it is also making that available to profit-making enterprises -- and it's not clear how they could put in place an adequate consent mechanism to do this. This data is not Google's to redistribute (and it shouldn't even be Craig Venter's). It is also misleading to think that this data is going to be freely and equally available to everyone, because only certain specialized knowledge enterprises have the ability to make use of such data, and, by and large they are private, for-profit and they won't re-distribute a penny back to the people whose genomic information they are using. Genomic information is not like software code and it's wrong to compare them -- it belongs very personally to individuals. When you use or distribute that information without explicit consent, there is a victim. The 2005 Captain Hook Award to Google is intended to raise questions and concerns about a future threat to genetic privacy. We believe these issues need public attention and should be widely debated to forestall the most dangerous and socially harmful scenarios.
The Coalition Against Biopiracy also received a few complaints about naming Craig Venter as a recipient of one of this year's Captain Hook Awards. We believe he's quite deserving. Go here for more background on Venter's 2004 global expedition to collect microbial biodiversity:
http://www.etcgroup.org/article.asp?newsid=442
http://www.etcgroup.org/article.asp?newsid=473
Venter is the flamboyant scientist who first grabbed headlines back in 1991. While employed at NIH, part of the US government's Human Genome Project, when he filed for US patents on thousands of gene sequences from the human brain.
Venter's global expedition to collect microbial diversity challenges national sovereignty and raises more doubts about the already problematic access and benefit-sharing work of the Convention on Biological Diversity. More significantly, Venter's work poses ethical and environmental concerns about the use of biodiversity to build new life forms from scratch. Intellectual property claims on human-made life also pose far-reaching ethical concerns. In the Galapagos, in Bermuda, and in French Polynesia -- Venter's yacht was steeped in controversy and unanswered questions about public domain diversity and patenting, human-made creation of novel life forms, and violations of national sovereignty.
Propelled by venture capital and taxpayer dollars, the field of synthetic biology or nanobiotechnology is advancing rapidly in the absence of public debate or regulatory oversight. But not to worry, Venter is part of a team that is undertaking a study to examine the societal implications. In June 2005 the J. Craig Venter Institute, the Center for Strategic & International Studies and MIT announced that they will undertake a joint project to examine the societal implications of synthetic genomics and regulatory needs. Unfortunately, those who are stepping up to assess the societal implications of synthetic biology are closely linked to those seeking to commercialize and profit from it. One of the projects' directors, Drew Endy of MIT, is co-founder of Codon Devices, a company that synthesizes customized DNA segments. Another project director, Robert Friedman, is employed by the Venter Institute, whose founder, J. Craig Venter, raised $30 million from private investors to establish Synthetic Genomics, Inc. in 2005, a company that aims to manufacture organisms for industrial purposes. Read more about the company here: http://www.syntheticgenomics.com/
Jim Thomas and Hope Shand, for the Coalition Against Biopiracy and the ETC Group
