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Linking risk communication and biomedical ethics : the case of pre-implantation genetic diagnosis

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Title: Linking risk communication and biomedical ethics : the case of pre-implantation genetic diagnosis
Author: Longstaff, Holly Ann
Degree Doctor of Philosophy - PhD
Program Interdisciplinary Studies
Copyright Date: 2009
Publicly Available in cIRcle 2010-04-26
Abstract: The fundamental objective of this thesis as a collective work is to contribute to the interdisciplinary body of research that seeks to integrate the fields of bioethics and risk analysis. The goal was to move risk communication beyond procedural ethics to focus on substantive ethics or the values that guide such strategies. The research study discussed here includes three phases: (1) interviews with a heterogeneous collection of experts to determine the risks and benefits that pre-implantation genetic diagnosis (PGD) may pose to individuals, groups, and society; (2) mental model interviews with lay citizens to determine shared misconceptions and background knowledge of PGD; (3) and a series of risk communication experimental workshops with lay citizens informed by phase 1 and 2 findings. Phase 1 employed a novel method of eliciting expert judgment by incorporating the views of conventional (e.g., physicians) and unconventional experts (e.g., lived experience of disability) relevant to PGD technology. The approach is based on the mental models method as described by Morgan and colleagues (2002). In total, 8 experts were interviewed individually to protect the diversity of expressed views. All were shown 3 charts based on an extensive literature review. This process allowed for qualitative feedback capable of incorporating a range of discrete skills sets and communication styles. The final products of the interview process were a revised series of charts (3 revised originals plus 2 additional charts) that illustrated technical, personal, and value-oriented messages communicated by those deeply engaged in PGD research. The lay mental model interviews were conducted with 16 citizens. As anticipated, most were not familiar with PGD technology but were familiar with IVF, which must occur in conjunction with PGD. This finding is significant as IVF and PGD share many risks and benefits. Important misconceptions were also identified that were ultimately corrected during the workshops. For example, interview participants had a very difficult time anticipating the stakeholders of PGD and the full multi-scalar outcomes of this technology. Many also assumed that users of PGD technology were infertile. Understanding the multiple scalar nature of PGD is vital to understanding the full array of risks and benefits posed by this technology. It is also important for citizens to understand that users of PGD technology are submitting themselves to the risks of IVF although they are not infertile and could have their own biological children in most cases. The deliberative workshops represented a holistic approach to rick communication. In total, 57 individuals were recruited to participate in 1 of 8 workshops. Randomly assigned participants in half of the workshops (Treatment B) viewed structured decision making (SDM) materials in the form of consequence matrices (informed by phase 1 expert results) while the others did not. Results showed that workshop participants were very successful in learning a wide range of value and technically-oriented risk messages. However, those who received SDM training were better able to make ethical decisions concerning risk communication strategies for PGD technology. This finding underscores the value of including SDM materials in communication strategies for ethically contentious issues.
URI: http://hdl.handle.net/2429/24173
Scholarly Level: Graduate

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