Table 1.

Ethical considerations and suggestions for conducting biological behavioral surveillance surveys (BBSS) among adolescent key populations (AKP) under the age of 18 years.

Topic	Considerations and suggestions
Obtaining informed consent for studies involving adolescents	Meet with and receive input from all relevant groups and agencies when designing protocols and consent forms, and when considering who will need consent from parents or guardians. For instance, in some countries (1) the age of majority may be younger than 18 years, and (2) children who are married, living independently, or in child-headed households may be considered “liberated minors” and thus, may not require additional consent from a parent or guardian.
	When requesting consent for surveys on sensitive issues from a parent or guardian on behalf of AKPa, it may be necessary to keep the nature of the survey vague (ie, refer to a survey on sexual risk or drug use as a “health” survey) and list sex or drugs as one of many health issues being assessed.
Domestic laws governing adolescent protection	Review domestic laws for mandatory reporting of disclosures of adolescent abuse, neglect, violence, or exploitation; consider how mandatory reporting would affect the final research outcome (eg, Will AKP refuse to participate if their information is not confidential? and Will AKP refuse to report certain types of information?) and decide whether a waiver is needed.
	Discuss issues of including or waiving mandatory reporting with adolescent protection officials, social workers, rights advocates, partner agencies, etc.
	Approval of such waivers may only be possible through the national ethical review board or a senior-level adolescent protection authority.
Identification of, and referral to, services for adolescents	Identify and develop a comprehensive list of potential services for AKP (ie, services able to address issues of violence, abuse, neglect or exploitation, and other services such as drop-in centers, shelters, helplines, government or non-government social welfare, vocational training, school programs, health care, legal aid) to respond to AKP special situations.
	Provide referral lists to AKP who participate in a study, whether or not they disclose harm or high-risk behavior.
	Be able to identify which specific service an adolescent may need to access (ie, do not have a list only containing referrals for those who need sexual abuse counseling or detoxification from drugs).
	Ensure that research protocols include clear procedures for making discreet, direct referrals to service providers, should AKP request such assistance. Unless there are mandatory reporting requirements, confidentiality must be respected.
	Work with qualified adolescent protection or health professionals to establish guidelines and meet with potential service providers to assess the capacity, expertise, and resources to respond to direct referrals, including how to respond to urgent or acute abuse, neglect, violence, or exploitation cases.
	If no services exist in the survey area or staff is not equipped to respond to referrals from AKP participants, consider budgeting for and establishing a temporary team of trained service providers to whom AKP can be referred during and shortly following data collection.
	Consider providing transportation arrangements so that service providers in nearby areas can meet with AKP who request support. Plan these arrangements in cooperation with protection and health professionals.
	Develop plans to determine how to accommodate AKP needing long-term or specialized support beyond the research.
Eligibility	Many labels used by researchers to describe key populations (ie, people who inject drugs, male or female sex workers) may not be recognized by AKP engaging in the same behaviors. Refer to the behavior guiding the eligibility, rather than the population group.
Support during the survey	Have available a professionally trained social worker or advocate (a person or service provider with qualifications to provide information and support to an adolescent in distress).
Biological testing	When considering inclusion of a biological component, find out (1) if the country’s ethical standards allow testing on adolescents. If so, what are the laws governing HIVb or other infections testing of adolescents? (2) How is pre- and post-test counseling conducted for and test results provided to AKP and/or parents and guardians? and (3) Whether there are available and appropriate referrals for care, management, and treatment for AKP with positive test results.

^aAKP: adolescent key populations.

^bHIV: human immunodeficiency virus.