Separating Risk Assessment from Risk Management Poses Legal and Ethical Problems in Person-Centred Care.

Abstract

Accelerating progress in screening technologies, e.g. genetic testing, means more individuals are facing the stressful decision of whether to request the test. Fully-informed and preference-based consent, as well as ethical practice, requires the full range of benefits and harms from any test or treatment to be identified and assessed from the individual's point of view. For both ethical and legal reasons, we see the decision on whether to undertake a genetic screening test being increasingly seen, in future, as calling for a personalised analysis of the full range of subsequent management options. The conventional dissociation of 'risk assessment' and 'risk management' phases is thereby ruled out. One way of addressing the resulting challenge is through personalised multi-criterial decision support tools. In this vision paper we provide conceptual proof of method of how such an interactive online tool could function. The polygenetic genetic screening decision is used, solely as illustration.