Unit 6: Ethical considerations
After completing this unit,
you should be able to:
• Understand the basic ethical principles of working
• Define ‘informed consent’ and the procedures that
help ensure it
• Understand the importance of confidentiality and
how to ensure it
• Discuss the ethical considerations unique to
Ethical principles of
working with humans
• People must be respected and seen not as passive
sources of data but as people whose rights and
welfare must be protected.
• Physical risk, psychological harm and stigmatisation
must be minimised.
• Risks and benefits from studies should be distributed
fairly and evenly in populations.
What is informed consent?
• Informed consent means that participants are told
enough about the nature of surveillance to enable
them to make an informed decision about whether or
not to take part.
• The decision to participate should be voluntary.
– No project staff should pressure, coerce or
deceive respondents in an effort to ensure their
– Staff should try to ensure that respondents are not
pressured by gatekeepers or community
What information should be
provided during informed consent?
• The nature of the survey (e.g., length of interview
and type of question)
• The potential risks and benefits
• How the information will be used
• How privacy will be protected
• That participation is voluntary
• That participants have the right to refuse to answer
any questions or stop the interview at any time
• Participants should also be given a chance to ask
How should the consent
procedure be documented?
Oral consent is usually best in surveillance, as it
• Interviewers sign a statement verifying that the
required information was provided and the
respondent has given consent
• Consent form used for each respondent
• No signature required from respondent
• No names recorded
• Although consent must be voluntary, we want to
try to maximise participation in order to reduce
• We can maximise participation by, for example:
– keeping interviews as short as possible
– conducting fieldwork at times that are
convenient to the participants
– stressing the altruistic benefits of participating.
• Recording the level and reasons for non-
participation and basic socio-demographic
information can be useful for assessing bias.
• Response rates should always be reported in the
• Appropriate for compensating or thanking participants
for time away from work and out-of-pocket expenses
• Should not be of so much value that they jeopardise
the voluntary nature of informed consent
• Can bias the sample towards those who have a
greater need for the incentive
• Respondent-driven sampling uses incentives. In this
case it is ‘payment’ to the participant, who in their role
of recruiters act as fieldworkers. This may not be
appropriate in all settings.
• Protects subjects from adverse consequences that
may arise from other people knowing their responses
• Threats to confidentiality and measures to minimise
them should be discussed during informed consent
• The best way to ensure confidentiality is to:
– Ensure that names or other means of identifying
respondents are not recorded on surveys.
– Store data safely and appropriately.
– Train fieldworkers on the importance of
– Have clear disciplinary procedures for staff who
– Identify potential confidentiality problems and
solutions in the pre-surveillance assessment.
Fieldworkers may need to talk about stories that
upset them, they should do so only with team
members and in a way that does not easily identify
Ethical considerations unique to
Examples: ethical issues in the surveillance of high-risk
Potential ethical issues Potential solution
Ensure fully informed consent and absolute
Increases stigmatisation and confidentiality
discrimination of the group Reporting should be neutral, e.g., “people at high
risk of infection”
Reporting needs to be accompanied by public
health communication about negative impact of
stigma and discrimination on the epidemic
Loss of earnings Keep interview as short as possible
Remunerate lost earnings
Conduct interviews outside work times
Gatekeepers get angry at those Involve and work with the gatekeepers, stress the
who participate benefits of surveillance
Gatekeepers who force participation Involve and work with the gatekeepers, stress the
benefits of surveillance
Illegal activities are highlighted, Involve and work with law enforcement agencies
resulting in a police crackdown so they understand the purpose of surveillance and
the damage that could result from conducting
repressive measures, like scattering the high-
risk groups or driving groups underground
Participants get no direct benefit Report findings back to survey population
from surveillance Explain the indirect benefits during the informed
consent procedure 5-6-12
Do not foster false expectations
Working with adolescents
• Different countries will have different laws and
standards about when an adolescent can participate
in research involving sexual behaviours and when
parental consent is required.
• Generally, surveillance tries to minimise the number
of participants ranging in age from 15-18, and to
avoid including those under 15.
• If it is necessary to include children under the age of
15, you should seek special guidance on research
Benefits to participants
• Surveillance offers no direct benefit to respondents.
Some people believe surveillance is unethical in the
absence of an intervention.
• Indirect benefits can include:
– Improving HIV prevention and care programmes
– Raising public awareness and sympathy of the
burden of disease in the population
– Reducing stigma and effecting social change,
especially around HIV infection
– Feedback of results to the community
Benefits to participants
Each country needs to decide the limitations
of what fieldworkers can do in terms of
personal assistance (for example,
transporting a sick person to a healthcare
Surveillance as research
• Public health surveillance is not usually
considered research and does not have the
same formal requirements for documenting
and reviewing ethical procedures.
• Ethical safeguards are still an essential part
of surveillance and procedures should go
through local ethics committees and
institutional review boards.
Small group discussion
1. What are some of the potential social harms caused
by behavioural surveillance in high-risk groups in
2. What ethical issues/difficulties have you/could you
experience conducting surveillance in your country?
Design a consent form to be used with female