Data mining is a growing trend, and we can soon expect to see demand for data mining more personal information than we have seen before, such as our personal health information. My question is, should we all collectively copyleft all of our personal information, including our bodies (DNA), so that anyone who finds a way to make useful services from our information, has an obligation to provide these services in a way that benefits us?
For example, I submit that if a government or health organization authorizes the use of personal health data for research purposes leading to a commercial product, then the producer of that product has an obligation to make it available to those who provided the health information. This would not necessarily mean for free; it could mean reasonably affordable.
Could an approach like this strengthen the position of social goods such as health care?
This post is part of the Articulating the Commons series.
For further related reading, see this article in The Scientist which inspired this post:
And also this post, Occupy Science | The Scientist by Dale Dougherty
Genomics research increasingly depends on access to large pools of
individuals’ genetic and health data, but there is mounting
dissatisfaction with governance approaches that erect barriers between
donors and the biomedical research in which they are participating.
Typically, participants have little or no opportunity to track how their
data are being used, what discoveries result, and what the new
knowledge might mean for them, even when findings are of life and death
significance for the participant...