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...

Πλήρης περιγραφή

Λεπτομέρειες βιβλιογραφικής εγγραφής
Κύριοι συγγραφείς:	Rutakumwa, R, De Vries, J, Parker, M, Tindana, P, Mweemba, O, Seeley, J
Μορφή:	Journal article
Γλώσσα:	English
Έκδοση:	Taylor and Francis 2019

Παρόμοια τεκμήρια

Informed consent in genomic research and biobanking: Taking feedback of findings seriously
ανά: Tindana, P, κ.ά.
Έκδοση: (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
ανά: Mweemba, O, κ.ά.
Έκδοση: (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
ανά: Oliver Mweemba, κ.ά.
Έκδοση: (2020-01-01)

Editorial – ethical practice and genomic research
ανά: Janet Seeley, κ.ά.
Έκδοση: (2020-01-01)

The ethics of sustainable genomic research in Africa
ανά: Parker, M, κ.ά.
Έκδοση: (2016)

‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan Africa
ανά: Tindana, P, κ.ά.
Έκδοση: (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
ανά: Paulina Tindana, κ.ά.
Έκδοση: (2019-10-01)

Developing the science and methods of community engagement for genomic research and biobanking in Africa
ανά: Tindana, P, κ.ά.
Έκδοση: (2017)

Guideline for feedback of individual genetic research findings for genomics research in Africa
ανά: Janet Seeley, κ.ά.
Έκδοση: (2022-01-01)

Empirical research on the ethics of genomic research.
ανά: Middleton, A, κ.ά.
Έκδοση: (2013)

Community engagement strategies for genomic studies in Africa : a review of the literature
ανά: Tindana, P, κ.ά.
Έκδοση: (2015)

Ethical issues in human genomics research in developing countries.
ανά: de Vries, J, κ.ά.
Έκδοση: (2011)

Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda
ανά: Joseph Ochieng, κ.ά.
Έκδοση: (2021-11-01)

Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members
ανά: Erisa Sabakaki Mwaka, κ.ά.
Έκδοση: (2022-11-01)

Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa
ανά: De Vries, J, κ.ά.
Έκδοση: (2014)

Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa
ανά: Ciara Staunton, κ.ά.
Έκδοση: (2018-02-01)

Ethical issues in human genomics research in developing countries
ανά: Mercereau-Puijalon Odile, κ.ά.
Έκδοση: (2011-03-01)

What constitutes expertise in research ethics and integrity?
ανά: Robert Braun, κ.ά.
Έκδοση: (2020-01-01)

Ethics of genomic research
ανά: Jayanthi Mathaiyan, κ.ά.
Έκδοση: (2013-01-01)

Ethical implications of the use of whole genome methods in medical research
ανά: Kaye, J, κ.ά.
Έκδοση: (2010)

Ethical implications of the use of whole genome methods in medical research.
ανά: Kaye, J, κ.ά.
Έκδοση: (2010)

The Africa Ethics Working Group (AEWG): a model of collaboration for psychiatric genomic research in Africa
ανά: Kamuya, D, κ.ά.
Έκδοση: (2021)

Investigating the potential for ethnic group harm in collaborative genomics research in Africa: Is ethnic stigmatisation likely?
ανά: de Vries, J, κ.ά.
Έκδοση: (2012)

Seeking consent to genetic and genomic research in a rural Ghanaian setting: A qualitative study of the MalariaGEN experience.
ανά: Tindana, P, κ.ά.
Έκδοση: (2012)

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

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

Good and bad research collaborations: researchers' views on science and ethics in global health research
ανά: Parker, M, κ.ά.
Έκδοση: (2016)

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

A scoping review of genetics and genomics research ethics policies and guidelines for Africa
ανά: Joseph Ali, κ.ά.
Έκδοση: (2021-04-01)

Research ethics recommendations for whole-genome research: Consensus statement
ανά: Caulfield, T, κ.ά.
Έκδοση: (2008)

Research ethics recommendations for whole-genome research: consensus statement
ανά: Caulfield, T, κ.ά.
Έκδοση: (2008)

Investigating the potential for ethnic group harm in collaborative genomics research in Africa: is ethnic stigmatisation likely?
ανά: de Vries, J, κ.ά.
Έκδοση: (2012)

Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study
ανά: Isaac Kisiangani, κ.ά.
Έκδοση: (2022-03-01)

Researchers’ perspectives on the integration of molecular and genomic data into malaria elimination programmes in Africa: a qualitative study
ανά: Paulina Tindana, κ.ά.
Έκδοση: (2024-12-01)

Ethical considerations in research with genomic data
ανά: Horton, R, κ.ά.
Έκδοση: (2022)

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

Researching the Ethics of Data Collection in Post-conflict Acholiland (Northern Uganda): The Good, the Bad, and the Ugly
ανά: Arthur Owor
Έκδοση: (2022-08-01)

Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda
ανά: Harriet Nankya, κ.ά.
Έκδοση: (2024-01-01)

Evidence from UK Research Ethics Committee members on what makes a good research ethics review, and what can be improved.
ανά: Mark Sidaway, κ.ά.
Έκδοση: (2023-01-01)

Evidence from UK Research Ethics Committee members on what makes a good research ethics review, and what can be improved
ανά: Mark Sidaway, κ.ά.
Έκδοση: (2023-01-01)