Original Paper

Ethical, Legal, and Social Issues in Health Technology Assessment for Prenatal/Preconceptional and Newborn Screening: A Workshop Report
B.K. Potter, D. Avard, V. Entwistle, C. Kennedy, P. Chakraborty, M. McGuire, B.J. Wilson

Department of Epidemiology & Community Medicine, University of Ottawa, Ottawa, Ont., Canada

Address of Corresponding Author

Public Health Genomics 2009;12:4-10 (DOI: 10.1159/000153430)

  Key Words

• Ethical, legal, and social issues (ELSIs)
• Genetic screening
• Health technology assessment
• Neonatal screening
• Prenatal screening
• Public health ethics

  Abstract

Prenatal/preconceptional and newborn screening programs have been a focus of recent policy debates that have included attention to ethical, legal, and social issues (ELSIs). In parallel, there has been an ongoing discussion about whether and how ELSIs may be addressed in health technology assessment (HTA). We conducted a knowledge synthesis study to explore both guidance and current practice regarding the consideration of ELSIs in HTA for prenatal/preconceptional and newborn screening. As the concluding activity for this project, we held a Canadian workshop to discuss the issues with a diverse group of stakeholders. Based on key workshop themes integrated with our study results, we suggest that population-based genetic screening programs may present particular types of ELSIs and that a public health ethics perspective is potentially highly relevant when considering them. We also suggest that approaches to addressing ELSIs in HTA for prenatal/preconceptional and newborn screening may need to be flexible enough to respond to diversity in HTA organizations, cultural values, stakeholder communities, and contextual factors. Finally, we highlight a need for transparency in the way that HTA producers move from evidence to conclusions and the ways in which screening policy decisions are made.

Copyright © 2008 S. Karger AG, Basel

  Author Contacts

Beth K. Potter, PhD
Department of Epidemiology & Community Medicine, University of Ottawa
451 Smyth Rd.
Ottawa ON K1H 8M5 (Canada)
Tel. +1 613 562 5800, ext. 8718, Fax +1 613 562 5465, E-Mail bpotter@uottawa.ca

  Article Information

Received: March 2, 2008
Accepted: May 14, 2008
Published online: September 3, 2008
Number of Print Pages : 7
Number of Figures : 0, Number of Tables : 0, Number of References : 61