TY - GEN
T1 - Ethical issues in implementing national-level health data warehouses in developing countries
AU - Gesicho, Milka B.
AU - Moon, Troy D.
AU - Heitman, Elizabeth
AU - Were, Martin C.
N1 - Publisher Copyright:
© 2017 International Medical Informatics Association (IMIA) and IOS Press.
PY - 2017
Y1 - 2017
N2 - National Health Data Warehouses (NHDWHs) promise to improve individual and population health. These systems are now increasingly being deployed in low- and middle-income countries (LMICs), given increased recognition of the value of data analytics in informing decision-making. However, ethical issues relevant to implementation of NHDWHs in LMICs remain largely ignored or, at best, inadequately addressed. In this paper, we highlight and critically analyze several of the key ethical issues, including privacy, informed consent and trust, confidentiality and security, secondary data use, sustainability and implementation validity, risk-benefit ratio, governance and conflict of interest, justice, equity, access, and collaborative partnerships. We then provide a set of guiding principles and points to consider for countries and implementers to guide further decision-making around ethics of implementing NHDWHs within LMICs.
AB - National Health Data Warehouses (NHDWHs) promise to improve individual and population health. These systems are now increasingly being deployed in low- and middle-income countries (LMICs), given increased recognition of the value of data analytics in informing decision-making. However, ethical issues relevant to implementation of NHDWHs in LMICs remain largely ignored or, at best, inadequately addressed. In this paper, we highlight and critically analyze several of the key ethical issues, including privacy, informed consent and trust, confidentiality and security, secondary data use, sustainability and implementation validity, risk-benefit ratio, governance and conflict of interest, justice, equity, access, and collaborative partnerships. We then provide a set of guiding principles and points to consider for countries and implementers to guide further decision-making around ethics of implementing NHDWHs within LMICs.
KW - Developing countries
KW - Ethics
KW - Information systems
UR - http://www.scopus.com/inward/record.url?scp=85040507928&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85040507928&partnerID=8YFLogxK
U2 - 10.3233/978-1-61499-830-3-718
DO - 10.3233/978-1-61499-830-3-718
M3 - Conference contribution
C2 - 29295192
AN - SCOPUS:85040507928
T3 - Studies in Health Technology and Informatics
SP - 718
EP - 722
BT - MEDINFO 2017
A2 - Dongsheng, Zhao
A2 - Gundlapalli, Adi V.
A2 - Marie-Christine, Jaulent
PB - IOS Press
T2 - 16th World Congress of Medical and Health Informatics: Precision Healthcare through Informatics, MedInfo 2017
Y2 - 21 August 2017 through 25 August 2017
ER -