A New Bioethics Framework for Facilitating Better Decision-Making About Genetic Information

Abstract

It is argued that a new philosophical framework is needed to more adequately address medical decision-making about genetic disease. Persons need to be reconceived as complex relational networks and disease and illness redefined to better reflect their profound impact on all aspects of a person and their life. Decision-making needs to be viewed as involving more than an isolated individual right-bearer and autonomy and responsibility, individual and community need to be more carefully balanced. A modified human rights model is discussed and illustrated through discussions of genetic testing. Such a model could also reorient public health decision-making.