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Collaborative International Research: Ethical and Regulatory Issues Pertaining to Human Biological Materials at a S outh A frican Institutional Research Ethics Committee

Aslam Sathar, Amaboo Dhai & Stephan van der Linde

Developing World Bioethics 14 (3):150-157 (2014)

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Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study.Nabukenya Sylvia, Ochieng Joseph, Kaawa-Mafigiri David, Munabi Ian, Nakigudde Janet, Nakwagala Frederick Nelson, Barugahare John, Kwagala Betty, Ibingira Charles, Twimwijukye Adelline, Sewankambo Nelson & Mwaka Erisa Sabakaki - 2022 - Research Ethics 18 (3):193-209.details Research Ethics, Volume 18, Issue 3, Page 193-209, July 2022. This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to (...) Download Export citation Bookmark 1 citation
Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research.Zeinab Mohammed, Fatma Abdelgawad, Mamoun Ahram, Maha E. Ibrahim, Alya Elgamri, Ehsan Gamel, Latifa Adarmouch, Karima El Rhazi, Samar Abd ElHafeez & Henry Silverman - 2024 - Research Ethics 20 (1):1-18.details Members of research ethics committees (RECs) face a number of ethical challenges when reviewing genomic research. These include issues regarding the content and type of consent, the return of individual research results, mechanisms of sharing specimens and health data, and appropriate community engagement efforts. This article presents the findings from a survey that sought to investigate the opinions and attitudes of REC members from four Arab countries in the Middle East and North Africa (Egypt, Morocco, Sudan, and Jordan) toward these (...) Download Export citation Bookmark
Commodification of biomaterials and data when funding is contingent to transfer in biobank research. [REVIEW]Mantombi Maseme - 2021 - Medicine, Health Care and Philosophy 24 (4):667-675.details It is common practice for biobanks and biobank researchers to seek funding from agencies that are independent of the biobank that often stipulate conditions requiring researchers to grant access and share biomaterials and data as part of the agreement, in particular, in international collaborative health research. As yet, to the author’s knowledge, there has been no study conducted to examine whether these conditions could result in the commercialization of biomaterials and data and whether such practice is considered ethical. This paper (...) Download Export citation Bookmark 1 citation
Benefit sharing in health research.Safia Mahomed & Ian Sanne - 2015 - South African Journal of Bioethics and Law 8 (2):60.details Biobanks are repositories that store human biological materials and their associated data. They are rapidly becoming part of national and international networks and give rise to unique ethico-regulatory issues. Whether consent is informed and whether this term should be used when specimens are collected for biobank research is questionable. Where risks occur, they are usually social and relate to identifiability. Public trust and confidence are important for the success of this type of research. Consensus is growing that governance of biobanks (...) Download Export citation Bookmark
Religion, Public Policy and Social Transformation in Southeast Asia: Managing Religious Diversity Vol. 1.Dicky Sofjan (ed.) - 2016 - Globethics.net.details This book series deals with religion and its interface with the state and society in Southeast Asia. It examines the multidimensional facets of politics, public policies and social change in relation to contemporary forms of religions, religious communities, thinking, praxis and ethos. All articles in this Book Series were a direct result of a policy-relevant research collaboration conducted by investigators from the participating countries from 2013–2016. The issues under examination in this Series include: state management of diversity, multicultural policies, religious (...) Download Export citation Bookmark

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