"What's My DNA Worth, Anyway?" A Response to the Commercialization of Individuals' DNA Information

Abstract

Extensive enthusiasm surrounds the potential for human DNA information to sustain and enhance the pharmaceutical industry's profitability. Nevertheless, persons whose health makes their DNA of commercial interest are routinely expected simply to give their DNA and the information in it to pharmaceutical or genomics companies or their academic intermediaries, voluntarily and without compensation. This state of affairs is increasingly recognized as paradoxical, but it is favored by conventional bioethical opinion. Given that most DNA information is now collected for commercial purposes and is worth considerably more than is generally imagined, bioethical objections to compensation of individuals for their DNA information are inappropriate. This paper suggests approaches by which individuals and representative governments and patient interest groups can negotiate compensation. Appreciable attitudinal change is required if those individuals personally involved are to be included fairly in the commercialization of human DNA information. Ultimately, however, such change is necessary if commercial genetic research is to respect human dignity and human rights.