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  1. It is a complex process, but it’s very important to return these results to participants’. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV.Sylvia Nabukenya, David Kyaddondo, Adelline Twimukye, Ian Guyton Munabi, Catriona Waitt & Erisa S. Mwaka - 2024 - Research Ethics 20 (2):363-387.
    This study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant interviews with researchers, and 12 in-depth interviews with research ethics committee members. In total, 54 stakeholders who were involved in pharmacogenomics research and HIV treatment and care contributed to the data collection between September 2021 and February 2022. The study explored five (...)
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  • Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.Conrad V. Fernandez, P. Pearl O'Rourke & Laura M. Beskow - 2015 - Journal of Law, Medicine and Ethics 43 (3):514-522.
    Genomic research may uncover results that have direct actionable benefit to the individual. An emerging debate is the degree to which researchers may have responsibility to offer results to the biological relatives of the research participant. In a companion study to one carried out in the United States, we describe the attitudes of Canadian Research Ethics Board chairs to this issue and their opinions as to the role of the REB in developing related policy.
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  • Navigating social and ethical challenges of biobanking for human microbiome research.Kieran C. O’Doherty, David S. Guttman, Yvonne C. W. Yau, Valerie J. Waters, D. Elizabeth Tullis, David M. Hwang & Kim H. Chuong - 2017 - BMC Medical Ethics 18 (1):1.
    BackgroundBiobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications. While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate.DiscussionWe draw on two cystic fibrosis biobanks in Toronto, Canada, to illustrate our points. The biobanks have been established to facilitate sample and data sharing for research into the link between disease progression and microbial dynamics in the lungs (...)
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