Thomas H. Murray

Title: Genetic Exceptionalism: A Reassessment

Genetic Exceptionalism expresses a conviction: that of all types of health related information about persons, genetic information requires special treatment and special protection. The alleged sensitivity of genetic information rests on a set of assumptions, among them:

• that genetic information is highly predictive for a person’s life course (the “genetic diary” idea)
• that genetic information could be readily distinguished from other sorts of health related information both ethically and practically
• that other parties were likely to gain access to genetic information about a person that the individual himself or herself would not be able to obtain, and finally,
• that this information could and would be used adversely against the individual.

 The assumptions made by genetic exception were first challenged in the 1990s. In particular, that analysis questioned the claims made about the predictive power of genetic information, and about the distinctiveness of genetic information among all types of health related information about persons. The recent rise of “recreational genomics” and the prospect of inexpensive mass sequencing in the near future may restore some balance in access to genetic information about individuals. The possibility that others may use genetic information against the interests of individuals has been mitigated by legislation such as GINA in the USA. But the fundamental claim made by genetic exceptionalism, that genetic information should be given special status and special protection, has not been successfully defended. We are better off if genetic information is treated as just another type of health related information about a person.