Useful norms concerning the fair use of electronic information have been established and serve as models by which professionals can structure their activities ethically. So, for example, in the United States, the Privacy Act of 1974 stipulates six standards that federal agencies meet with respect to the maintenance of information on individuals. Amongst these norms, it is stipulated that:
- an individual is to determine what records pertaining to him are collected;
- these records are to be used solely for the purpose for which the information was originally gathered, unless his consent is secured;
- and that an individual is to have access to records pertaining to him. These principles and others like them helpfully structure the fair use of electronic information.
Such norms are adequate when applied to cases in which information bears specifically upon one individual. Thus, for example, my credit report will be relevant to potential creditors only in establishing how likely it is that I will repay my debts. Not, for example, how likely it will be that my son or father will repay their debts. For normal electronic information, such norms function well since most such information is individualized and bears solely upon one person.There is, however, a growing body of electronic information gathered from individuals that has great significance for others. Indeed, in some cases, the information gathered has greater significance for others than it has for the one from whom it was gathered. I refer, of course, to genetic information the relevance of which is not limited to the individual from whom it is gathered. For example, while my credit rating does not bear upon my son’s or my father’s credit rating, the results from a genetic test for cystic fibrosis do have relevance for both my father and my son. Indeed, in the case of my son, the results from my test, when coupled with those from my wife may be determinative concerning whether or not he has cystic fibrosis. This information concerning my son, in turn, will be of great interest to insurance companies and employers. Thus, cases of genetic information do not fit in as well with the currently accepted norms concerning the fair use of electronic information. For example, it is thought to be fair that an individual be able to determine what records are gathered concerning him. How does one comply with this principle in the case of genetic information? Must all those upon whom the information bears be given some voice in determining whether the information is to be gathered and recorded? Again, it is proposed that an individual is to be permitted to gain access to information pertaining to him. Does this mean that I automatically have access to the genetic information that has been gathered concerning my father, siblings, even my first cousins whose information has relevance for me? Clearly, when it comes to the fair use of genetic information, we must go beyond the perspective of the individual, for the information is no longer of an individual nature. Rather, it bears upon whole groups of people genetically related.
In this paper, I refine the currently accepted norms to make them sensitive to the unique problems posed by genetic information for the fair use of electronic information. I do so by relying upon the norms themselves. Thus, my refinement is evolutionary, developing what is implicit in the accepted norms.
The currently accepted principle that information gathered for one purpose is not to be used for another purpose without the consent of the original individual serves as a guide for the refinement of the principles. For since one can only consent to the gathering of information bearing upon oneself, all information gathered about oneself, even if it does bear upon another, cannot be used insofar as it does bear upon another without that other’s consent. That is, consent is essentially individualized. Moreover, I do not have access to information gathered from another that bears upon me as long as that information is not used with respect to me. That is, information, like consent, is essentially individualized. These refinements suggest one practical implication for the recordation of genetic information: such information should be recorded in as individualized a manner as possible. This is to be done so that the structure of electronically recorded genetic information mirrors the fair use of such information.