title: Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.
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.
authors: University of Oxford, UK susan.bull@ethox.ox.ac.uk.
authors: Susan
authors: S
authors: Bull
authors: University of Oxford, UK Mahidol University, Bangkok, Thailand.
authors: Phaik Yeong
authors: PY
authors: Cheah
authors: University of KwaZulu-Natal, Pietermaritzburg, South Africa.
authors: Spencer
authors: S
authors: Denny
authors: KEMRI Wellcome Trust Research Programme, Nairobi, Kenya.
authors: Irene
authors: I
authors: Jao
authors: University of Oxford, UK KEMRI Wellcome Trust Research Programme, Nairobi, Kenya.
authors: Vicki
authors: V
authors: Marsh
authors: Oxford University Clinical Research Unit, Ho Chi Minh City, Viet Nam.
authors: Laura
authors: L
authors: Merson
authors: Society for Nutrition, Education and Health Action, Mumbai, India.
authors: Neena
authors: N
authors: Shah More
authors: Children's Hospital 1, Ho Chi Minh City, Viet Nam.
authors: Le Nguyen Thanh
authors: le NT
authors: Nhan
authors: University College London, UK.
authors: David
authors: D
authors: Osrin
authors: Thammasat University, Bangkok, Thailand.
authors: Decha
authors: D
authors: Tangseefa
authors: University of KwaZulu-Natal, Pietermaritzburg, South Africa.
authors: Douglas
authors: D
authors: Wassenaar
authors: University of Oxford, UK.
authors: Michael
authors: M
authors: Parker
mesh_terms: D035843:Biomedical Research; D003299:Cooperative Behavior; D003625:Data Collection; D003906:Developing Countries; D006801:Humans; D007182:Income; D033181:Information Dissemination / Q000941:ethics*; D017410:Practice Guidelines as Topic; D011634:Public Health; D012108:Research Personnel; D012111:Residence Characteristics; D012941:Social Responsibility; D035502:Trust
keywords: biomedical research ethics; clinical research; data release; data sharing; health policy; low-income countries; middle-income countries; privacy; research data; research governance; trust