Jantina de Vries, Thomas N. Williams, Kalifa Bojang, Dominic P. Kwiatkowski, Raymond Fitzpatrick & Michael Parker
BMC Medical Ethics 15 (1):62 (2014)
Abstract |
The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN Consortium, one of the first international collaborative genomics research projects in Africa
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Keywords | Data sharing Genomics Africa MalariaGEN Ethnic stigmatisation Secondary use Ethics Ethnic groups |
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DOI | 10.1186/1472-6939-15-62 |
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References found in this work BETA
Seeking Consent to Genetic and Genomic Research in a Rural Ghanaian Setting: A Qualitative Study of the MalariaGEN Experience. [REVIEW]P. Tindana, S. Bull, L. Amenga-Etego, J. Vries, R. Aborigo, K. Koram, D. Kwiatkowski & M. Parker - 2012 - BMC Medical Ethics 13 (1):15-15.
Ethical Issues in Human Genomics Research in Developing Countries.Jantina de Vries, Susan J. Bull, Ogobara Doumbo, Muntaser Ibrahim, Odile Mercereau-Puijalon, Dominic Kwiatkowski & Michael Parker - 2011 - BMC Medical Ethics 12 (1):5.
Seeking Consent to Genetic and Genomic Research in a Rural Ghanaian Setting: A Qualitative Study of the MalariaGEN Experience. [REVIEW]Paulina Tindana, Susan Bull, Lucas Amenga-Etego, Jantina de Vries, Raymond Aborigo, Kwadwo Koram, Dominic Kwiatkowski & Michael Parker - 2012 - BMC Medical Ethics 13 (1):15-.
Composition, Training Needs and Independence of Ethics Review Committees Across Africa: Are the Gate-Keepers Rising to the Emerging Challenges?A. Nyika, W. Kilama, R. Chilengi, G. Tangwa, P. Tindana, P. Ndebele & J. Ikingura - 2009 - Journal of Medical Ethics 35 (3):189-193.
Racial, Ethnic, and Tribal Classifications in Biomedical Research With Biological and Group Harm.Joan McGregor - 2010 - American Journal of Bioethics 10 (9):23-24.
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Citations of this work BETA
Challenges Arising When Seeking Broad Consent for Health Research Data Sharing: A Qualitative Study of Perspectives in Thailand.Phaik Yeong Cheah, Nattapat Jatupornpimol, Borimas Hanboonkunupakarn, Napat Khirikoekkong, Podjanee Jittamala, Sasithon Pukrittayakamee, Nicholas P. J. Day, Michael Parker & Susan Bull - 2018 - BMC Medical Ethics 19 (1):86.
Trust and Justice in Big Data Analytics: Bringing the Philosophical Literature on Trust to Bear on the Ethics of Consent.J. Woolley - 2019 - Philosophy and Technology 32 (1):111-134.
Towards Coherent Data Policy for Biomedical Research with ELSI 2.0: Orchestrating Ethical, Legal and Social Strategies.J. Patrick Woolley - 2017 - Journal of Medical Ethics 43 (11):741-743.
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