Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

Author:

Bull Susan1,Cheah Phaik Yeong12,Denny Spencer3,Jao Irene4,Marsh Vicki14,Merson Laura5,Shah More Neena6,Nhan Le Nguyen Thanh7,Osrin David8,Tangseefa Decha9,Wassenaar Douglas3,Parker Michael1

Affiliation:

1. University of Oxford, UK

2. Mahidol University, Bangkok, Thailand

3. University of KwaZulu-Natal, Pietermaritzburg, South Africa

4. KEMRI Wellcome Trust Research Programme, Nairobi, Kenya

5. Oxford University Clinical Research Unit, Ho Chi Minh City, Viet Nam

6. Society for Nutrition, Education and Health Action, Mumbai, India

7. Children’s Hospital 1, Ho Chi Minh City, Viet Nam

8. University College London, UK

9. Thammasat University, Bangkok, Thailand

Abstract

Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.

Publisher

SAGE Publications

Subject

Communication,Education,Social Psychology

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