How to Communicate Risks in Gene Therapy

Abstract

Publisher Summary This chapter discusses several core problems of risk communication for the purpose of developing information strategies with regard to gene therapy, an emerging technology characterized by uncertainty in scientific knowledge with regard to benefits and risks. A major precondition for making responsible and informed decisions—on both levels, experts and laypersons—is that an adequate understanding of the risk or of the uncertainty respectively can be achieved. Theory and practice of the risk research field identified several core problems of risk communication, which have to be considered to achieve transparent and clear communication. One refers to the discrepancy between experts' and laypersons' concept of risk. Another is the misunderstanding or misinterpretation of uncertainty. Experts and laypersons perceive risks differently, and the reasons for this discrepancy are multiple such as wrong understanding and interpretation of risk knowledge, lack of risk knowledge, and the different approaches to assess risks. On the other hand, the communication of uncertainty implies several problems with regard to how to present and how to describe uncertainty in a layperson-oriented and -comprehensible way. Abstract A clear and transparent risk communication is needed to reach an adequate understanding of gene therapy and of possible non-intended side effects and in order to provide a considerable basis for informed and responsible decision making. A main precondition for making responsible decisions is the adequate understanding of the risk or of the uncertainties regarding a new technology and of the existing evidence supporting or mitigating possible consequences on all relevant levels and among all affected parties/stakeholders. This chapter considers core problems of risk communication for the purpose of developing information strategies with regard to gene therapy. Examples are: the multidimensionality of laypersons' risk concepts, the role of heuristics for risk judgments, laypersons' perception of verbal uncertainty descriptions or the clarity of evidence characterization. The general conclusion for risk communication on gene therapy refers to a more layperson-oriented approach with regard to risk information. Any risk information on gene therapy has to be carefully evaluated with respect to their clarity, and their appropriateness before being implemented.