GloPID-R Roadmap for Data Sharing in PHEs | Page 21

ETHICAL: CHALLENGES
& POTENTIAL SOLUTIONS
S
haring of data must be done in accordance with applicable ethical and
legal standards, ensuring respect for the privacy of individuals and the
dignity of communities. This is essential for building the trust of the public.
Additional attention should be given to respect for, and alignment with, cultur-
al norms. This may include consultations with knowledge keepers, community
members, local leaders/elders, and following appropriate protocols. Recognis-
ing the ethical importance of consent, informed consent models that allow for
secondary use of data with conditions, known as broad consent, should be used
to the maximum extent possible.
ETHICAL
DATA SHARING
PRINCIPLE
ENSURING ETHICAL
STANDARDS briefed on the importance of broad consent and
anonymisation for PHE situations.
Clear ethics and governance frameworks for
sharing of data that can be approved by ethics
committees and governments in advance of
outbreaks are needed. Funders should ensure
these measures are in place prior to study
initiation and ethics committees need to be Engaging communities and knowledge keepers
in meaningful co-development of research,
research data management and stewardship
is needed. The potential health benefits to the
communities whose data is being shared need
to be recognised.
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