- How Not to Think about Genetic Information
Mark Rothstein directs our attention to policy-makers' fondness for enacting specifically genetic legislation, even in the absence of any good reason to think that genetic information is morally special—a belief known as "genetic exceptionalism." Rothstein offers some suggestions as to what motivates policy-makers' views of genetic legislation. For example, they may draw upon the fact that the populace at large has thoroughly bought into genetic exceptionalism. Even if such views and attitudes are ill-founded, they may provide popular support for new forms of privacy legislation with regard to medical records, and that support might not be forthcoming if merely generic privacy legislation were to be proposed.
Rothstein correctly observes that this legislative pragmatism is problematic. If there is no clear-cut distinction between genetic and nongenetic information, genetic legislation may be impossible to implement. I fully agree, and would like to add another line of support for his concerns.
For simplicity's sake let's focus on genetic privacy legislation. Genetic privacy (in this context) is a species of information privacy. But the way we typically think and talk about information is problematic when we come to consider normative questions about the acquisition, use, and disclosure of information. Our everyday thinking about information is framed and directed by a set of "conduit" and "container" metaphors: we talk of the flow of information, and represent it as something that can be acquired, stored, conveyed, transmitted, received, accessed, concealed, withheld, and so on. While nothing is wrong with the use of such metaphors, they do influence how we think about knowledge and communication. The conduit metaphor accentuates some features of communication but downplays or excludes others. This can be problematic when we are trying to settle normative questions about who ought to know what about whom.
The conduit and container metaphors have a detrimental effect upon our normative and regulatory thinking in a number of ways.1 They encourage us to conceive of information as a kind of "stuff." We then note that information acquired in certain ways, or about certain things, has an ethical significance. We often do this by observing "problem" cases where, for example, various parties' interests conflict with regard to certain kinds of information. But lots of medical research uses information about identifiable individuals in order to find things out, not about those individuals, but in order to draw conclusions about features of populations, groups, and so on. Studies of heredity, for example, are based on information about individuals, but the aim is to explain the variation of traits within populations (indeed, claims about heredity do not apply directly to individuals).
On the conduit model of information we risk thinking of certain kinds of information as possessing an intrinsic ethical significance—such that any use of it is ethically problematic—rather than recognizing that what matters, ethically speaking, is always types of action, and that the actions that use medical information form a heterogeneous class.
Our thinking about specifically genetic information is even more problematic. Since the 1950s at least, molecular biologists have been prone to talk of DNA, or DNA sequences, as containing genetic information. But this is to use "information" in a causal sense: DNA contains information about traits or about proteins because specific DNA sequences (in the right context) will cause those traits or bring about the production of those proteins. If we hold that DNA plays the causal role that it does in virtue of the "information" that it "contains," then it may also seem that genetic information is intrinsically special. There is no other molecule known to us that is of comparable causal significance.
In contrast, our everyday talk about information treats it as a rough synonym for knowledge. Even if DNA does play an unparalleled causal role in the replication and maintenance of life on earth, it does not follow that genetic knowledge (what we know about another person's DNA) is thereby of significance. There is a danger here of what I call "significance creep," on the model of mission creep: our sense of the unique causal significance of DNA can distort our attitudes about the...