Whose DNA? Genetic surveillance, ownership of information and newborn screening

摘要

The new genetics, emerging as a scientific revolution, is reinforcing the biological theories which accounts for differences between groups and individuals. Genetic screening of populations contributes to the defining of normality within the dominant medical paradigm. The Newborn Screening Test for inborn errors of metabolism (the Guthrie test) is performed on all Australian babies in the first week of life. The test cards, which have been stored in Australia since the 1970s, have, since the development of new genetic technologies, become a potential DNA databank. These and the private DNA databanks for newborns that may arise in the foreseeable future encompass several of the new questions of genetics: who should have access to the information? Can the information be used for reasons other than those for which it was collected? Who should decide what happens to the information? The social shaping of genetics as a biotechnology shows some of the ways in which genetics can be used as a means of social control. Examination of the ownership of information about both individuals and populations reveals some of the values and interests involved.