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Guidance for considering ethical, legal, and social issues in health technology assessment: Application to genetic screening

Published online by Cambridge University Press:  01 October 2008

Beth K. Potter ,
Denise Avard ,
Ian D. Graham ,
Vikki A. Entwistle ,
Timothy A. Caulfield ,
Pranesh Chakraborty ,
Christine Kennedy ,
Marissa McGuire ,
Glenn G. Griener  and
Mark Montgomery
...Show all authors
Beth K. Potter
Affiliation:
University of Ottawa
Denise Avard
Affiliation:
University of Montreal
Ian D. Graham
Affiliation:
University of Ottawa and Canadian Institutes of Health Research
Vikki A. Entwistle
Affiliation:
University of Dundee
Timothy A. Caulfield
Affiliation:
University of Alberta
Pranesh Chakraborty
Affiliation:
University of Ottawa and Children's Hospital of Eastern Ontario
Christine Kennedy
Affiliation:
University of Calgary
Marissa McGuire
Affiliation:
University of Ottawa
Glenn G. Griener
Affiliation:
University of Alberta
Mark Montgomery
Affiliation:
University of Calgary and Alberta Children's Hospital
George A. Wells
Affiliation:
University of Ottawa and University of Ottawa Heart Institute
Brenda J. Wilson
Affiliation:
University of Ottawa
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Abstract

Objectives and Methods: Many authors have argued that ethical, legal, and social issues (“ELSIs”) should be explicitly integrated into health technology assessment (HTA), yet doing so poses challenges. This discussion may be particularly salient for technologies viewed as ethically complex, such as genetic screening. Here we provide a brief overview of contemporary discussions of the issues from the HTA literature. We then describe key existing policy evaluation frameworks in the fields of disease screening and public health genomics. Finally, we map the insights from the HTA literature to the policy evaluation frameworks, with discussion of the implications for HTA in genetic screening.

Results and Conclusions: A critical discussion in the HTA literature considers the definition of ELSIs in HTA, highlighting the importance of thinking beyond ELSIs as impacts of technology. Existing HTA guidance on integrating ELSIs relates to three broad approaches: literature synthesis, involvement of experts, and consideration of stakeholder values. The thirteen key policy evaluation frameworks relating to disease screening and public health genomics identified a range of ELSIs relevant to genetic screening. Beyond straightforward impacts of screening, these ELSIs require consideration of factors such as the social and political context surrounding policy decisions. The three broad approaches to addressing ELSIs described above are apparent in the screening/genomics literatures. In integrating these findings we suggest that the method chosen for addressing ELSIs in HTA for genetic screening may determine which ELSIs are prioritized; and that an important challenge is the lack of guidance for evaluating such methods.

Keywords

Genetic screeningEthicallegaland social issuesHealth technology assessment
Type
GENERAL ESSAYS
Information
International Journal of Technology Assessment in Health Care , Volume 24 , Issue 4 , October 2008 , pp. 412 - 422
Copyright
Copyright © Cambridge University Press 2008

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