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

Beth K. Potter, Denise Avard, Ian D. Graham, Vikki A. Entwistle, Timothy A. Caulfield, Pranesh Chakraborty, Christine Kennedy, Marissa McGuire, Glenn G. Griener, Mark Montgomery, George A. Wells, Brenda J. Wilson

    Research output: Contribution to journalArticle

    19 Citations (Scopus)

    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.
    Original languageEnglish
    Pages (from-to)412-422
    Number of pages11
    JournalInternational Journal of Technology Assessment in Health Care
    Volume24
    Issue number4
    DOIs
    Publication statusPublished - 2008

    Keywords

    • Genetic screening
    • Ethical, legal, and social issues
    • Health technology assessment

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  • Cite this

    Potter, B. K., Avard, D., Graham, I. D., Entwistle, V. A., Caulfield, T. A., Chakraborty, P., Kennedy, C., McGuire, M., Griener, G. G., Montgomery, M., Wells, G. A., & Wilson, B. J. (2008). Guidance for considering ethical, legal, and social issues in health technology assessment: application to genetic screening. International Journal of Technology Assessment in Health Care, 24(4), 412-422. https://doi.org/10.1017/S0266462308080549