WHO Issues Guidelines on Ethical Issues Related To Public Health
Surveillance
Document Raises Key Concerns About Risks And Benefits In The Era Of
New Technologies And Big Data
Both research and
surveillance involve data collection on human subjects. For research
subjects, there are guidelines and requirements designed to protect
them. Not so for the subjects of surveillance. At least, not until
now.
To fill this guidance gap, the World Health Organization has published
the first ever international framework to help policymakers and
practitioners navigate the ethical issues presented by public health
surveillance. The 56 page document contains 17 separate guidelines
accompanied by several lines of commentary introducing and explaining
each guideline.
The document overall
provides a refresher course for epidemiologists seeking to familiarize
themselves with all of the considerable benefits and potential risks
of doing surveillance in the modern age. Some of the new technology
which gives rise to big data or uses drones to conduct surveillance
pose new ethical questions and dilemmas for public health scientists
and practitioners.
According to WHO,
“Surveillance, when conducted ethically, is the foundation for
programs to promote human well-being at the population level. It can
contribute to reducing inequalities: pockets of suffering that are
unfair, unjust and preventable cannot be addressed if they are not
first made visible. But surveillance is not without risks for
participants and sometimes poses ethical dilemmas. Issues about
privacy, autonomy, equity, and the common good need to be considered
and balanced, and knowing how to do so can be challenging in
practice.”
The 17 guidelines are listed below.
Guideline 1.
Countries have an obligation to develop appropriate, feasible,
sustainable public health surveillance systems. Surveillance systems
should have a clear purpose and a plan for data collection, analysis,
use and dissemination based on relevant public health priorities.
Guideline 2.
Countries have an obligation to develop appropriate, effective
mechanisms to ensure ethical surveillance.
Guideline 3. Surveillance data should be collected only for a
legitimate public health purpose.
Guideline 4.
Countries have an obligation to ensure that the data collected are of
sufficient quality, including being timely, reliable and valid, to
achieve public health goals.
Guideline 5.
Planning for public health surveillance should be guided by
transparent governmental priority-setting.
Guideline 6.
The global community has an obligation to support countries that lack
adequate resources to undertake surveillance.
Guideline 7.
The values and concerns of communities should be taken into account in
planning, implementing and using data from surveillance.
Guideline 8.
Those responsible for surveillance should identify, evaluate, minimize
and disclose risks for harm before surveillance is conducted.
Monitoring for harm should be continuous, and, when any is identified,
appropriate action should be taken to mitigate it.
Guideline 9.
Surveillance of individuals or groups who are particularly susceptible
to disease, harm or injustice is critical and demands careful scrutiny
to avoid the imposition of unnecessary additional burdens.
Guideline 10. Governments and others who hold surveillance data
must ensure that identifiable data are appropriately secured.
Guideline 11.
Under certain circumstances, the collection of names or identifiable
data is justified.
Guideline 12.
Individuals have an obligation to contribute to surveillance when
reliable, valid, complete data sets are required and relevant
protection is in place. Under these circumstances, informed consent is
not ethically required.
Guideline 13.
Results of surveillance must be effectively communicated to relevant
target audiences.
Guideline 14.
With appropriate safeguards and justification, those responsible for
public health surveillance have an obligation to share data with other
national and international public health agencies.
Guideline 15.
During a public health emergency, it is imperative that all parties
involved in surveillance share data in a timely fashion.
Guideline 16.
With appropriate justification and safeguards, public health agencies
may use or share surveillance data for research purposes.
Guideline 17.
Personally identifiable surveillance data should not be shared with
agencies that are likely to use them to take action against
individuals or for uses unrelated to public health.
To read the full report or more about the individual guidelines, go
to:
https://tinyurl.com/y7hh2g6u ■
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