What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda

What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda

Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in r...

Bibliografske podrobnosti
Main Authors:	Rutakumwa, R, De Vries, J, Parker, M, Tindana, P, Mweemba, O, Seeley, J
Format:	Journal article
Jezik:	English
Izdano:	Taylor and Francis 2019

Podobne knjige/članki

Informed consent in genomic research and biobanking: Taking feedback of findings seriously
od: Tindana, P, et al.
Izdano: (2020)

Use of broad consent and related procedures in genomics research: perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
od: Mweemba, O, et al.
Izdano: (2019)

Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
od: Oliver Mweemba, et al.
Izdano: (2020-01-01)

Editorial – ethical practice and genomic research
od: Janet Seeley, et al.
Izdano: (2020-01-01)

Informed consent in genomic research and biobanking: taking feedback of findings seriously
od: Paulina Tindana, et al.
Izdano: (2020-01-01)

The ethics of sustainable genomic research in Africa
od: Parker, M, et al.
Izdano: (2016)

‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan Africa
od: Tindana, P, et al.
Izdano: (2017)

Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model
od: Paulina Tindana, et al.
Izdano: (2019-10-01)

Providing monetary and non-monetary goods to research participants: perspectives and practices of researchers and Research Ethics Committees in Zambia
od: Chris Mweemba, et al.
Izdano: (2020-01-01)

Developing the science and methods of community engagement for genomic research and biobanking in Africa
od: Tindana, P, et al.
Izdano: (2017)

Guideline for feedback of individual genetic research findings for genomics research in Africa
od: Janet Seeley, et al.
Izdano: (2022-01-01)

Empirical research on the ethics of genomic research.
od: Middleton, A, et al.
Izdano: (2013)

Community engagement strategies for genomic studies in Africa : a review of the literature
od: Tindana, P, et al.
Izdano: (2015)

Ethical issues in human genomics research in developing countries.
od: de Vries, J, et al.
Izdano: (2011)

Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda
od: Joseph Ochieng, et al.
Izdano: (2021-11-01)

Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members
od: Erisa Sabakaki Mwaka, et al.
Izdano: (2022-11-01)

Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa
od: De Vries, J, et al.
Izdano: (2014)

Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa
od: Ciara Staunton, et al.
Izdano: (2018-02-01)

Ethical issues in human genomics research in developing countries
od: Mercereau-Puijalon Odile, et al.
Izdano: (2011-03-01)

What constitutes expertise in research ethics and integrity?
od: Robert Braun, et al.
Izdano: (2020-01-01)

Ethics of genomic research
od: Jayanthi Mathaiyan, et al.
Izdano: (2013-01-01)

Ethical implications of the use of whole genome methods in medical research
od: Kaye, J, et al.
Izdano: (2010)

Ethical implications of the use of whole genome methods in medical research.
od: Kaye, J, et al.
Izdano: (2010)

The Africa Ethics Working Group (AEWG): a model of collaboration for psychiatric genomic research in Africa
od: Kamuya, D, et al.
Izdano: (2021)

Investigating the potential for ethnic group harm in collaborative genomics research in Africa: Is ethnic stigmatisation likely?
od: de Vries, J, et al.
Izdano: (2012)

Seeking consent to genetic and genomic research in a rural Ghanaian setting: A qualitative study of the MalariaGEN experience.
od: Tindana, P, et al.
Izdano: (2012)

Model framework for governance of genomic research and biobanking in Africa – a content description [version 1; peer review: 3 approved]
od: Aminu Yakubu, et al.
Izdano: (2018-04-01)

Model framework for governance of genomic research and biobanking in Africa – a content description [version 2; peer review: 3 approved]
od: Aminu Yakubu, et al.
Izdano: (2018-12-01)

Good and bad research collaborations: researchers' views on science and ethics in global health research
od: Parker, M, et al.
Izdano: (2016)

Good and Bad Research Collaborations: Researchers' Views on Science and Ethics in Global Health Research.
od: Michael Parker, et al.
Izdano: (2016-01-01)

Right of reply - Response to: In defence of South Africa’s National Health Research Ethics Council guidelines on heritable human genome editing
od: M Ramsay, et al.
Izdano: (2025-02-01)

A scoping review of genetics and genomics research ethics policies and guidelines for Africa
od: Joseph Ali, et al.
Izdano: (2021-04-01)

Research ethics recommendations for whole-genome research: Consensus statement
od: Caulfield, T, et al.
Izdano: (2008)

Research ethics recommendations for whole-genome research: consensus statement
od: Caulfield, T, et al.
Izdano: (2008)

Investigating the potential for ethnic group harm in collaborative genomics research in Africa: is ethnic stigmatisation likely?
od: de Vries, J, et al.
Izdano: (2012)

Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study
od: Isaac Kisiangani, et al.
Izdano: (2022-03-01)

Researchers’ perspectives on the integration of molecular and genomic data into malaria elimination programmes in Africa: a qualitative study
od: Paulina Tindana, et al.
Izdano: (2024-12-01)

Ethical considerations in research with genomic data
od: Horton, R, et al.
Izdano: (2022)

Ethical aspects for genomic research in psychiatry
od: N. V. Semenova
Izdano: (2019-12-01)

Evidence from UK Research Ethics Committee members on what makes a good research ethics review, and what can be improved.
od: Mark Sidaway, et al.
Izdano: (2023-01-01)