Avard D., Silverstein T., Sillon G., Joly Y., "Researchers' Perceptions of the Ethical Implications of Pharmacogenomics Research with Children", (2009) 12:3 Public Health Genomics, 191
Abstract: This paper presents the results of an exploratory qualitative study that assesses Canadian pediatric researchers’ perceptions of a pre-selected group of ethical issues raised by pharmacogenomics research with children. Methods: As a pilot study, we conducted semi-structured telephone interviews with Canadian pediatric pharmacogenomic researchers. The interviews were guided by the following themes: (1) benefits and risks of inclusion, (2) the consent/assent process, and (3) the return of research results. Results: Issues about assent, consent, risks and benefits, as well as the communication of results were addressed by the respondents. Some issues, such as the unique vulnerability of children, the long term privacy concerns associated with biobanking, additional core elements that need to be discussed and included in the consent/assent forms, as well as the challenges of communicating research results in a pediatric research were not explicitly identified by the respondents. Conclusion: Further consideration should be given to address the ethical challenges of including children in pharmacogenomics research. This exploratory study indicates that further guidance is needed if children are to be protected and yet benefit from such research.

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Borry P., Howard H.C., Sénécal K., Avard D., "Ethics Watch: Direct-to-Consumer Genome Scanning Services. Also for Children?", (2009) 10:1 Nature Reviews Genetics, 8
Abstract: [Not available]

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Frank C., [...] Joly Y. et al., "Making an Impact: A Preferred Framework and Indicators to Measure Returns on Investment in Health Research", (2008) Canadian Academy of Health Science, Assessment Report, Report of the Panel on the Return on Investments in Health Research, 80
Abstract: [Not available]

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Frank C., [...] Joly Y. et al., "Créer un impact: Les indicateurs et approches à privilégier pour mesurer le rendement des investissements consentis en recherche en santé", (2008) Académie canadienne des sciences de la santé,  Résumé du panel sur le rendement des investissements consentis en recherche en santé
Abstract: [Non disponible]

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Henk A.M., Stanton-Jean M., "The UNESCO Universal Declaration on Bioethics and Human Rights: Background, Principles and Application", UNESCO Publishing, 2009, 370 p.
Abstract: In October 2005, UNESCO Member States adopted by acclamation the Universal Declaration on Bioethics and Human Rights. For the first time in the history of bioethics, some 190 countries committed themselves and the international community to respect and apply fundamental ethical principles related to medicine, the life sciences and associated technologies. This publication provides a new impetus to the dissemination of the Declaration, and is part of the Organization’s continuous effort to contribute to the understanding of its principles worldwide. The authors, who were almost all involved in the elaboration of the text of the Declaration, were asked to respond on each article: Why was it included? What does it mean? How can it be applied? Their responses shed light on the historical background of the text and its evolution throughout the drafting process. They also provide a reflection on its relevance to previous declarations and bioethical literature, and its potential interpretation and application in challenging and complex bioethical debates.

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Sillon G., Joly Y., Feldman S., Avard D., "An Ethical and Legal Overview of Pharmacogenomics: Perspectives and Issues", (2008) 27(4) Med Law, 843-857
Abstract: Pharmacogenomics, a field of study at the interface of the disciplines of genomics and pharmacology, strives to understand the interaction between genes and the response to therapeutics. Its introduction into clinical research trials and medical practice promises to optimize the effectiveness of medications, reduce the adverse effects experienced by patients, and improve the research and development of new therapeutics. However, while pharmacogenomics promises tremendous health benefits it is still crucial to critically analyze the ethical, social and legal issues surrounding these developments. First, we present the numerous potential benefits ofpharmacogenomics. Then, using a thorough review of relevant jurisprudence, policies and literature, the main ethical, social and legal issues associated with pharmacogenomics will be identified. The likely new responsibilities for health care professionals and pharmaceutical companies as a result of pharmacogenomic development will also be discussed.

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