Literature DB >> 26905784

Broad Consent for Genomic Research and Biobanking: Perspectives from Low- and Middle-Income Countries.

Paulina Tindana1, Jantina de Vries2.   

Abstract

Genomic research and biobanking are increasingly being conducted in the context of collaborations between researchers in high-income countries and those in low- and middle-income countries. Although these scientific advancements have presented unique opportunities for researchers to contribute to cutting-edge scientific projects and address important health problems, they have also challenged existing ethical and regulatory frameworks, particularly in sub-Saharan Africa. Broad consent is a model that allows the use of human biological samples and associated data in future research that may be unrelated to the original study. Drawing on emerging perspectives in low- and middle-income countries, we argue that broad consent is equivalent to consent to governance and that a robust governance framework for genomics and biobanking should seek to promote global health and research equity and take into account five key elements: respect, authentic community engagement and trust building, the preservation of privacy and confidentiality, feedback of results, and capacity strengthening.

Entities:  

Keywords:  Africa; LMICs; biobanks; broad consent; genomic research

Mesh:

Year:  2016        PMID: 26905784     DOI: 10.1146/annurev-genom-083115-022456

Source DB:  PubMed          Journal:  Annu Rev Genomics Hum Genet        ISSN: 1527-8204            Impact factor:   8.929


  32 in total

Review 1.  African genetic diversity and adaptation inform a precision medicine agenda.

Authors:  Luisa Pereira; Leon Mutesa; Paulina Tindana; Michèle Ramsay
Journal:  Nat Rev Genet       Date:  2021-01-11       Impact factor: 53.242

2.  Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana.

Authors:  Jemima A Dennis-Antwi; Kwaku Ohene-Frempong; Kofi A Anie; Helen Dzikunu; Veronica A Agyare; Richard Okyere Boadu; Joseph Sarfo Antwi; Mabel K Asafo; Oboshie Anim-Boamah; Augustine K Asubonteng; Solomon Agyei; Ambroise Wonkam; Marsha J Treadwell
Journal:  J Genet Couns       Date:  2018-09-01       Impact factor: 2.537

Review 3.  Opportunities and challenges for the use of common controls in sequencing studies.

Authors:  Genevieve L Wojcik; Jessica Murphy; Jacob L Edelson; Christopher R Gignoux; Alexander G Ioannidis; Alisa Manning; Manuel A Rivas; Steven Buyske; Audrey E Hendricks
Journal:  Nat Rev Genet       Date:  2022-05-17       Impact factor: 59.581

4.  Translational Science, DNA Commercialization, and Informed Consent: The Need for Specific Terminology, Insights from a Review of H3Africa Projects.

Authors:  Patricia Marshall; Charmaine D M Royal; Ruth Chadwick
Journal:  Public Health Genomics       Date:  2022-01-25       Impact factor: 2.132

5.  Genomics governance: advancing justice, fairness and equity through the lens of the African communitarian ethic of Ubuntu.

Authors:  Nchangwi Syntia Munung; Jantina de Vries; Bridget Pratt
Journal:  Med Health Care Philos       Date:  2021-04-02

Review 6.  If you build it, they will come: unintended future uses of organised health data collections.

Authors:  Kieran C O'Doherty; Emily Christofides; Jeffery Yen; Heidi Beate Bentzen; Wylie Burke; Nina Hallowell; Barbara A Koenig; Donald J Willison
Journal:  BMC Med Ethics       Date:  2016-09-06       Impact factor: 2.652

7.  Developing the science and methods of community engagement for genomic research and biobanking in Africa.

Authors:  P Tindana; M Campbell; P Marshall; K Littler; R Vincent; J Seeley; J de Vries; D Kamuya
Journal:  Glob Health Epidemiol Genom       Date:  2017-09-04

8.  Equity in international health research collaborations in Africa: Perceptions and expectations of African researchers.

Authors:  Nchangwi Syntia Munung; Bongani M Mayosi; Jantina de Vries
Journal:  PLoS One       Date:  2017-10-16       Impact factor: 3.240

9.  Human OMICs and Computational Biology Research in Africa: Current Challenges and Prospects.

Authors:  Yosr Hamdi; Lyndon Zass; Houcemeddine Othman; Fouzia Radouani; Imane Allali; Mariem Hanachi; Chiamaka Jessica Okeke; Melek Chaouch; Maureen Bilinga Tendwa; Chaimae Samtal; Reem Mohamed Sallam; Nihad Alsayed; Michael Turkson; Samah Ahmed; Alia Benkahla; Lilia Romdhane; Oussema Souiai; Özlem Tastan Bishop; Kais Ghedira; Faisal Mohamed Fadlelmola; Nicola Mulder; Samar Kamal Kassim
Journal:  OMICS       Date:  2021-04-01

10.  Stroke Investigative Research and Education Network: Public Outreach and Engagement.

Authors:  A Singh; C Jenkins; B Calys-Tagoe; O S Arulogun; S Sarfo; B Ovbiagele; A Akpalu; S Melikam; E Uvere; M O Owolabi
Journal:  J Community Med Health Educ       Date:  2017-04-24
View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.