Reading for today:
Rose The Commodification of Bioinformation (2001)
This was a particularly interesting study of the exploitation of the somewhat isolated population of Iceland. Rose examined the progression of a particular genetics research company called deCode from it’s initial presence to the state that it’s in in 2001, when the article was published. Even today, their website touts it’s leading in research and statistical analysis:
deCODE is a global leader in making sense of the genome – in linking variations in the sequence to phenotype. Our work is driven by our world-leading statistics team, who put their know-how in to work for you: maximizing the data you get from your samples and then taking you from data to discovery. (deCODE)
Rose raises a lot of concerns in the article about the privacy of the information being provided to deCode. It seemed like a happy enough idea:
The possibility of tailoring drugs to patients with particular genotypic profiles offers better value for money for the drug budget coupled with less discomfort and danger to patients. (Rose 10)
It seems like a company that would be able to take information and cut down on drug costs because of the specificity with which they could cater their research. But something not so great has been the collection of data, and the limited opportunities to opt out.
Internationally accepted standards of good practice would require not only informed consent for the first DNA analysis but that the researchers should seek separate consents for each subsequent analysis or secure informed consent to a series of subsequent tests. Thus, deCode’s technocratic and commercially driven language of ‘has value’ appears to set aside consideration of the ethical requirements demanded by human genetics. (Rose 17)
Only current adults were able to opt out, and data once submitted could never be removed. In addition to issues of opting out, issues of consent for each testing phased were circumvented and not much else has changed. From a Science Insider article written January of 2010:
To further its search for disease genes, the company plans to begin whole genome sequencing of 2500 DNA samples from its database. It will not need to recontact these individuals for consent because their original consent agreements cover whole genome sequencing, Stefansson [CEO] says. (Kaiser 2010)
The company’s cheerful website highlights it as a do-good service to the community but it is difficult to ignore all the criticisms it had received in the past. DeCode actually filed for bankruptcy in 2009 and was brought under the leadership of another company, much to the shock of those who’s information was held within the HSD database. A TimesOnline article discusses some of the conflict that was sparked when news of bankruptcy was released, with concerns over the new potential uses of genetic information, especially because of the blanket consent forms issued at the start.
Even news clips put a positive spin on volunteering to be in the database.
But even with this spin, Rose points out in her article that these genetic consistencies among the population in Iceland aren’t necessarily as homogeneous as researchers want to believe. Claims are made as to the Viking heritage of the whole country, but immigrants are simply ignored, and the bottleneck instances used to justify the homogeneity of the population are not valid enough to draw the conclusions that members of deCode are drawing.
The compilation not only of genetics but of health records in general is on the rise with companies pushing for the consolidation of medical records for ease of access, etc.
The desire to create compilations of information is not a foreign idea, nor is it necessarily a bad one. But my hesitation comes in when there is uncertainty as to whether or not this information would be used for purposes beyond what is specified because deCode has already proven that it is easy for companies to create blanket consent forms so that once you’ve participated for whatever reason, your genetic information is lost to you and can be used for whatever else the company needs, and can in some cases be sold to other parties. There does need to be transparency when it comes to dealing with genetic information and its advancement. The Tasmanian tiger sequence of DNA is still in the introductory stages of having been sequenced, but what happens to the technologies when they are given over to the general public? The sequencing techniques will become available to whatever genetic company wants to use them, or by the same people funding the current research, and then that sort of technology will be expanded and used for other purposes. Luckily for us, the thylacine is extinct, no objections can be raised (it’s an animal anyway) in using its DNA to advance sequencing technologies. But again, once these technologies are available to the general public, then what?
