Genetics decision-making: a template for problems with informed consent

Developments in information technology and advances in genetics present challenges to physicians in terms of providing adequate informed consent. Genetic mechanisms and related therapies are very complex and involve a number of uncertainties. Yet, physicians have very little training in genetics or in dealing with uncertainty. Further, genetic decisions impact others, yet physicians are trained to see the patient as an individual, independent decision-maker. Cultural, ethnic, gender, religious and other differences influence patients in their genetic decision-making, but physicians have little training in understanding these kinds of influences. Genetic information also gives knowledge about disease and dysfunction where no therapeutic intervention is available. Physicians are trained to heal in crisis situations, to engage in therapeutic intervention and not always to deal with chronic or unresolved illness. They may find this situation difficult to handle in an informed consent context. All ofthese difficulties pose the possibility that physicians will not be "informed" enough to facilitate good informed consent in genetic decision-making. Given all of this we need to address fundamental changes in medical education.