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Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa

BACKGROUND: The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mor...

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Autores principales: Heathfield, Laura J., Maistry, Sairita, Martin, Lorna J., Ramesar, Raj, de Vries, Jantina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5708083/
https://www.ncbi.nlm.nih.gov/pubmed/29187190
http://dx.doi.org/10.1186/s12910-017-0225-6
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author Heathfield, Laura J.
Maistry, Sairita
Martin, Lorna J.
Ramesar, Raj
de Vries, Jantina
author_facet Heathfield, Laura J.
Maistry, Sairita
Martin, Lorna J.
Ramesar, Raj
de Vries, Jantina
author_sort Heathfield, Laura J.
collection PubMed
description BACKGROUND: The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa. MAIN BODY: This article discusses some of the ethical challenges that were encountered in these research projects. Among these challenges was the adaptation of research workflows to fit in with an exceptionally busy service delivery that is operating with limited resources. Whilst seeking guidance from the literature regarding research on deceased populations, it was noted that next of kin of decedents are not formally recognised as a vulnerable group in the existing ethical and legal frameworks in South Africa. The authors recommend that research in the forensic mortuary setting is approached using guidance for vulnerable groups, and the benefit to risk standard needs to be strongly justified. Lastly, when planning forensic genetics research, consideration must be given to the potential of uncovering incidental findings, funding to validate these findings and the feedback of results to family members; the latter of which is recommended to occur through a genetic counsellor. CONCLUSION: It is hoped that these experiences will contribute towards a formal framework for conducting forensic genetic research in medico-legal mortuaries in South Africa.
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spelling pubmed-57080832017-12-06 Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa Heathfield, Laura J. Maistry, Sairita Martin, Lorna J. Ramesar, Raj de Vries, Jantina BMC Med Ethics Debate BACKGROUND: The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa. MAIN BODY: This article discusses some of the ethical challenges that were encountered in these research projects. Among these challenges was the adaptation of research workflows to fit in with an exceptionally busy service delivery that is operating with limited resources. Whilst seeking guidance from the literature regarding research on deceased populations, it was noted that next of kin of decedents are not formally recognised as a vulnerable group in the existing ethical and legal frameworks in South Africa. The authors recommend that research in the forensic mortuary setting is approached using guidance for vulnerable groups, and the benefit to risk standard needs to be strongly justified. Lastly, when planning forensic genetics research, consideration must be given to the potential of uncovering incidental findings, funding to validate these findings and the feedback of results to family members; the latter of which is recommended to occur through a genetic counsellor. CONCLUSION: It is hoped that these experiences will contribute towards a formal framework for conducting forensic genetic research in medico-legal mortuaries in South Africa. BioMed Central 2017-11-29 /pmc/articles/PMC5708083/ /pubmed/29187190 http://dx.doi.org/10.1186/s12910-017-0225-6 Text en © The Author(s). 2017 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Debate
Heathfield, Laura J.
Maistry, Sairita
Martin, Lorna J.
Ramesar, Raj
de Vries, Jantina
Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa
title Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa
title_full Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa
title_fullStr Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa
title_full_unstemmed Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa
title_short Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa
title_sort ethical considerations in forensic genetics research on tissue samples collected post-mortem in cape town, south africa
topic Debate
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5708083/
https://www.ncbi.nlm.nih.gov/pubmed/29187190
http://dx.doi.org/10.1186/s12910-017-0225-6
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