UNICEF CEE/CIS
Draft
Ethical and protection
issues in HIV
programming for
adolescents engaging in
HIV risk behaviour
June 2008
Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Contents
Summary ............................................................................................................................ 1
Background .................................................................................................................... 1
Ethical and protection issues in HIV programming for MARA ............................... 1
Principles to guide programming with MARA .......................................................... 3
Protection issues .............................................................................................................. 4
Commercial sexual exploitation of children ........................................................... 4
Adolescents who inject drugs .................................................................................... 5
Human rights obligations and diversionary options for young offenders ....... 6
Recommendations ........................................................................................................ 6
Issues of informed consent and competence .............................................................. 8
Right to information .................................................................................................... 8
Competence .................................................................................................................. 8
Confidentiality .............................................................................................................. 9
Example of good practice – under and over age 16 years .................................... 9
Recommendations ...................................................................................................... 10
HIV prevention and treatment services for MARA .................................................... 11
HIV testing ................................................................................................................... 11
Recommendations .................................................................................................. 14
Access to HIV treatment and care .......................................................................... 14
Special considerations for adolescent boys and girls who are commercially
sexually exploited/involved in child prostitution .................................................... 15
Implications for service providers ........................................................................... 17
Special considerations for adolescent boys who have sex with males ................. 18
Implications for health service provision ............................................................... 19
Special considerations for adolescent boys and girls who inject drugs ............... 20
Implications for staff of harm reduction and related services .......................... 21
Special considerations for adolescent boys and girls living without parental care
........................................................................................................................................... 22
Implications for staff working with children living without parental care ...... 23
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Summary
Background
The UNICEF/Irish Aid Multi-country programme on most at-risk adolescents (MARA) has
collected data on HIV risk behaviour amongst adolescent boys and girls who inject drugs
and/or are involved in sex work, and adolescent boys who have sex with other males.
As these behaviours are highly stigmatised in most countries and illegal in many, it was
important to protect the rights of minors during the research process. Thus ethical
guidance was prepared for research teams conducting research with at-risk
adolescents1. The next step in the programme is to implement effective interventions
to minimise the risk of HIV transmission amongst MARA and to mitigate the factors
contributing to their vulnerability.
This guidance on ethical and protection issues has been written to assist countries to
understand the key issues facing service providers working with most at-risk and
especially vulnerable adolescents. It provides an overview of ethical and protection
considerations to be taken into account when providing health services interventions to
adolescents below the age of majority, specific issues to be taken into account when
testing for HIV and providing HIV treatment and care, and concludes with some special
considerations for working with adolescents who are sexually exploited, those who
inject drugs, adolescent boys who have sex with males, and especially vulnerable
adolescents.
Ethical and protection issues in HIV programming for MARA
Working with MARA is challenging, especially if they are below the age of majority,
being sexually exploited, or engaging in illegal behaviours.
For children
selling/exchanging sex or injecting drugs, it is not simply a case of providing clean
injecting equipment and condoms, but also ensuring that they are removed from
exploitative situations and referred to appropriate health, education, legal and social
services in accordance with the best interests of the child2.
A child is defined in the Convention on Rights of the Child (CRC), Article 1, as any
human being below the age of 18. According to international human rights law the
sexual abuse of a minor for economic gain is regarded as commercial sexual
exploitation of children (CSEC). The need for prevention and protection measures for
children involved in commercial sexual exploitation is well defined in the United
Nations (UN) Optional Protocol to the Convention on the Rights of the Child on the sale
of children, child prostitution and child pornography3.
Issues of child protection arise where adolescents are in situations of sexual
exploitation and abuse. They need to access HIV prevention interventions (and to be
referred to HIV treatment, care and support services if needed) as well as child
protection services, and to be removed from the exploitative situation4. Many health
and related workers are not aware of the Optional Protocol relating to child
prostitution and that it is obligatory for States to provide assistance for child victims of
sexual exploitation, aimed at their physical and psychological recovery and social
integration. Such victims should also have access to procedures to seek compensation
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from those who have wronged them and require protection from exploitative adults
because of their emotional and physical immaturity. It is important that victims of child
sexual exploitation are not mistaken for offenders – they require protection, not
incarceration.
Issues of protection also arise for children who inject drugs. In those countries where
injecting drugs is illegal, persons found to be injecting are often sentenced to
imprisonment (regardless of age). This can have further adverse affects on their health
and expose them to increased risk of HIV transmission (through injecting in prison with
non-sterile equipment and forced unprotected anal sex).
The main intervention should be to prevent juvenile injectors being placed in
correctional facilities5. Greater attention should also be paid to counselling adolescents
who are intermittent injecting drug users and providing them with skills to prevent
them becoming regular users.
Some of the ethical issues in working with MARA are the same irrespective of the HIV
risk behaviour engaged in. For example, a health care provider needs to know whether
parental consent is required before providing a medical intervention (such as, treating
a sexually transmitted infection, or providing voluntary counselling and testing for
HIV)6.
A human-rights approach is fundamental for effective and sustainable national
responses to HIV prevention among MARA and adolescents living with HIV. They have
the same rights as other adolescents and young people to: i. protection from
exploitative situations; ii. information, confidential counselling and education; iii.
privacy so that their personal behaviour, HIV status and health records are not
disclosed to anyone without their explicit consent; and iv. they have the right to
protect themselves, their family and their sexual partners from HIV by taking necessary
precautions such as, using sterile injection equipment, or male/female condoms7. A
rights-based approach contains measures to reduce stigma and discrimination against
MARA as this clearly affects their access to information and services, as well as their
ability to participate meaningfully8 9. An adolescent‟s first contact with a service may
be their last, if it is not perceived by them to be appropriate10.
Providing HIV interventions for adolescents below the age of majority can be
problematic. The CRC implicitly acknowledges the evolving capacity of adolescents to
make decisions for themselves based on their competency to consent to medical
treatment11. The law dealing with this varies and some countries designate specific
ages (ranging from 10 to 18) at which an adolescent is judged to have capacity12. In
some places, not all key stakeholders are familiar with the CRC13 or with national
legislation relating to risk behaviours (drug injection, male same sex relations, or sex
work), and health care providers may not be familiar with the legal situation regarding
performing medical interventions on minors.
In the CEE/CIS region this often results in an unwritten code of “Don‟t ask, don‟t tell”,
meaning that health workers do not ask for the precise date of birth to determine
whether or not the adolescent is a legal minor before proving services, and the
adolescent may give their year of birth as 18 years as they know they can be refused
some services if under the age of majority.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
For any medical intervention, including an HIV test, informed consent should be
obtained. The information should be provided in an easily understood format and be
relevant to their age, maturity and life circumstances. The provision of information
should not end with the intervention, but continue to ensure that the adolescent can
deal appropriately with the outcome (to avoid becoming infected, begin treatment,
and avoid infecting others). Informed consent is thus inextricably linked with
counselling and an assessment of “best interests” should be made in pre-test
counselling to determine whether it is in the best interests of the adolescent to access
services without parental consent14.
Principles to guide programming with MARA
Below are seven key principles that should guide HIV programming with MARA.
The best interest of the child is paramount
1. Adolescents requiring protection from commercial sexual exploitation should be
referred to appropriate agencies and it is the duty of States to provide
assistance aimed at their physical and psychological recovery and social
integration.
2. The CRC requires that diversionary alternatives to formal judicial proceedings
must respect human rights and that diversionary options are developed and
implemented in such a way that they meet certain standards15.
3. Policy makers and health care providers need to consider whether the
adolescent has the “competence” to provide consent to services, and whether
others should be involved in decision-making on their behalf.
– Adolescents who are able to understand the risks and benefits of HIV
prevention and treatment services should be able to access them without
parental consent.
– Adolescents who lack the capacity to understand the risks and benefits of
HIV prevention and treatment services should only be able to access them
with parental consent.
4. Competence is an element of informed consent and can only be assessed
through counselling by trained service providers.
5. The duty of confidentiality owed to a person under 18 is as great as that owed
to any other person.
6. Confidentiality should only be broken if an adolescent requires immediate
protection.
7. Any HIV services provided for minors should not discriminate between the local
population and national minorities – they should have equal access to such
services.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Protection issues
Commercial sexual exploitation of children
Sexual exploitation is one of the most serious forms of gender-based violence affecting
girls, boys and transgendered children worldwide16. There are three primary and
interrelated forms of commercial sexual exploitation of children (CSEC): prostitution,
pornography and trafficking for sexual purposes. Other forms of sexual exploitation of
children include child sex tourism and early forced marriages17. For the purpose of this
document, the focus will be on protection and ethical issues when working with
children involved in prostitution.
Articles 34 and 35 of the UN Convention on the Rights of the Child calls for State
Parties to take all actions necessary to prevent a child from being forced to in engage
in unlawful sexual activity, and from exploitation through prostitution, pornography,
and/or trafficking. The UN Optional Protocol to the Convention on the Rights of the
Child on the sale of children, child prostitution and child pornography (adopted in
2000 and brought into force in January 2002)18 clearly defines the measure that should
be in place to protect the rights and interests of child victims of child prostitution. In
particular, Article 8 calls on State Parties to recognise the special needs of child
victims, to inform them of their rights, provide appropriate support services throughout
the legal process, protect their privacy and identity, provide for their safety and to
ensure appropriate training, in particular legal and psychological training, for the
persons who work with victims.
Whilst the international human rights framework is in place and over 150 countries
have ratified the Optional Protocol, progress at country level, especially in central and
south Eastern Europe, has been slow. A few countries have revised national laws that
specifically recognise children's rights to be protected from commercial sexual
exploitation. There has been good progress in the Czech Republic (see Box), but other
countries still need to put in place the legal framework and supportive measures.
Czech Republic
The first National action plan to combat commercial sexual exploitation of children was
prepared in 2000 and provided an institutional and policy framework, as well as for a
coordinated action by the state administration. The Ministry of Interior together with the
Ministry of Labour and Social Affairs, the Ministry of Education, Youth, and Sports, the Ministry
of Justice and the Ministry of Public Health contribute to meeting the objectives of the plan.
The main achievements include preparation of new legislative measures and amendments to
existing legislation such as, the Law on public healthcare (obligations for doctors to report a
suspicion of maltreatment or abuse of children including sanctions for them when not doing so),
the Law on social and legal protection of children (broadens the scope of notification
obligations of certain entities toward child social and legal protection authorities, including
sanctions in case of failure to notify facts suggesting a threat to the child), and the Law on
support to educational activities in favour of children (the Law forbids persons with criminal
record for previous youth-related offences to work with children).
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
A framework has been developed for coordinating action of national and regional authorities as
well as interested non-governmental organisations (NGOs) when detecting, identifying and
solving the cases of child prostitution. New measures were introduced in 2004 to improve
collaboration between state central, regional and local authorities and stimulate further efforts
in education and prevention.
Emphasis is placed on strengthening training activities on effective methods of both social work
and criminal recourse. Two challenges have been encountered - how to: i. support NGOs that
could provide care for the affected children and complement state services; and ii. promote the
use of more sensitive methods by police when detecting cases of CSEC at the local community
level. Experience has proved that it is at this level where action by central and local state
authorities and NGOs brings the best and most effective results 19.
Other countries have established toll-free national child help lines available 24 hours
per day from Monday to Saturday. However, awareness of such services often remains
low amongst children. A recent report of the Committee on the Rights of the Child
found several shortcomings in the provision of services and protection afforded to
victims of CSEC in Serbia. For example, the lack of reintegration and rehabilitation
programmes and services exclusively for child victims and of reports of sexual abuse by
law enforcement officials. The report also noted the absence of data on the occurrence
and scale of the problem on which to base comprehensive strategies and policies20.
One way of strengthening the response of States to issues of CSEC is to establish an
office of an Ombudsperson for Children. These have already been established in most
European Union countries and also in Croatia, Georgia, Macedonia and in some cities
regions in the Russian Federation (Ekaterinenburg, Kaluga, Saint Petersburg and
Volograd)21.
Adolescents who inject drugs
Issues of protection also arise for children who inject drugs. In those countries where
injecting drugs is illegal, persons found to be injecting are often sentenced to
imprisonment (regardless of age). Overcrowded conditions, drug use and limited
adequate services in prisons may adversely affect the health of inmates, including
exposure to HIV, Hepatitis C and Tuberculosis. For young males in prison22, there are
additional risks as they are often physically weaker than other inmates are and may be
forced to take part in drug and/or sex-related activities. Anal sex, forced or
consensual, is common in prison and is generally unprotected23 as is the use of nonsterile needles and syringes.
The main intervention should be to prevent juveniles being placed in correctional
facilities. Programmes diverting young offenders from the juvenile justice system
should be established and, at a minimum where they do not exist, adolescents should
be placed in custodial care/juvenile detention facilities separate from adults24.
Greater attention should also be paid to counselling adolescents who are intermittent
injecting drug users and providing them with skills to prevent them becoming regular
users.
“Diversion” is the term applied to various measures to 'divert' offenders from the
formal criminal justice system. These measures can include verbal and written
warnings, formal cautions, victim-offender or family conferences, and referral to
formal or informal community-based programmes25. Such programmes develop young
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
people's potential, make young offenders accountable for their actions, encourage
them to commit their free time to learning a new way of life, and assist them to map a
constructive and healthy life with the assistance of those closest to them.
Similarly with adolescent males who have sex with other males in countries where
homosexuality is illegal, efforts should be made to divert the minor from incarceration.
If the sexual relationship was non-consensual or for money/goods, then the same
conditions would apply as for the commercial sexual exploitation of children.
Transgendered minors should also be afforded the same protection by the law.
Human rights obligations and diversionary options for young offenders
The UN Convention on the Rights of the Child (the CRC) recognises the importance of
diverting young offenders from the formal processes of the criminal justice system.
Article 40.3 of the CRC states:
States Parties shall seek to promote the establishment of laws, procedures,
authorities and institutions specifically applicable to children alleged as, accused of,
or recognised as having infringed the penal law, and, in particular:
(b) Whenever appropriate and desirable, measures for dealing with such children
without resorting to judicial proceedings, providing that human rights and legal
safeguards are fully respected.
Diversionary options aim to avoid the stigma associated with prosecution and the
danger of trapping young people in a pattern of offending behaviour. The obligation in
the CRC to develop diversionary options is elaborated upon by several United Nations
rules and guidelines26.
Recommendations
1. Develop or revise national laws to recognise children's rights to be protected from
commercial sexual exploitation and the right of every child accused or convicted of
a criminal offence to be treated in a manner consistent with the CRC27 and the
International Covenant on Civil and Political Rights (ICCPR)28.
2. Develop comprehensive national strategies to prevent trafficking and sexual
exploitation of children, and alternatives to prison for juveniles.
3. Sensitise professionals, parents, children and the general public to the problems of
sexual exploitation and abuse of children through education, including media
campaigns.
4. Increase protection provided to sexually exploited children, who should be treated
as victims and not criminalised. This should include prevention of CSEC, witness
protection, social reintegration, access to health care and psychological assistance
in a coordinated manner, including through enhanced cooperation with NGOs.
5. Adolescents who inject drugs and male adolescents who have sex with other males
(in countries where same sex relations and injecting drug use are illegal) should be
referred to diversion programmes29, rather than being incarcerated. Where
programmes diverting young offenders from the juvenile justice system do not
exist, adolescents should, at a minimum, be placed in custodial care/juvenile
detention facilities separate from adults.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
6. Ensure that a confidential, accessible and child-sensitive mechanism is in place to
receive and effectively address individual complaints of all children, including those
in the 14 to 18 years age group.
7. Ensure the prosecution of perpetrators of sexual exploitation of minors.
8. Train law enforcement officials, social workers and prosecutors on how to receive,
monitor, investigate complaints and prosecute perpetrators, in a child-sensitive
manner.
9. Professionals working with adolescents should be aware of local policies and sources
of advice in relation to child protection issues for victims of child sexual
exploitation, minors who inject drugs, or adolescent males who have sex with other
males.
10. Appoint an Ombudsperson for Children to monitor the prevention of and response to
commercial sexual exploitation of children and incarceration of minors.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Issues of informed consent and competence
Right to information
In most countries, the median age of sexual debut for adolescents is earlier than the
age of legal majority, and many adolescents do not have independent access to HIV
prevention services. With regard to sexual and reproductive information, including on
family planning, the Committee on the Rights of the Child has stated in General
Comment 4 (Adolescent Health and Development) that governments should ensure that
adolescents have access to appropriate information regardless of their marital status
and whether or not parents or guardians consent, and should remove all barriers to
health services, including those relating to HIV prevention30.
Article 12 of the United Nations Convention on the Rights of the Child (CRC) states:
State parties shall assure to the child who is capable of forming his or
her own views, the right to express those views freely in all matters
affecting the child, the views of the child being given due weight in
accordance with the age and maturity of the child.
Making decisions when providing health services for adolescents involves a delicate
balancing of the child‟s rights and needs as well as the rights of the parents. Those who
look to the law for guidance will find that it is often unclear31.
Competence
Children have the right to be consulted about decisions concerning their welfare and
children considered “competent” may initiate consultation and consent to treatment
without their parents‟ knowledge or consent. The child‟s right to confidentiality
appears to override the parent‟s right to the information parents need if they are to be
aware of, or contribute to, decisions about their child32. If children are competent to
give consent for themselves, health care providers should seek consent directly from
them33.
Competence
“Competence” is not a simple attribute that an adolescent either possesses or does not possess:
much will depend on the relationship and trust between the health care provider and
colleagues, and the adolescent and their family. Children can be helped to develop competence
by involving them from an early age in decisions and encouraging them to take an increasing
part in the decisions about their care.
For patients to have the capacity (be competent) to take a particular decision, they must be
able to
• comprehend and retain information relevant to the decision, especially as to the
consequences of having or not having the intervention in question, and
• use and weigh this information in the decision-making process34.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Confidentiality
Maintaining confidentiality is one of the key issues that young people report influences
their use of health services. Legally and historically, confidentiality has been assumed
to be linked to personal competence to make important decisions regarding health
care. Individual practice must ensure the best interests of adolescents, as required by
children‟s rights legislation, while meeting their expressed wishes. However
competence is a matter of professional judgement with no formal lower age limit35.
In some countries, adolescents below the age of consent are authorised to receive,
with their active consent and without the consent or awareness of their parents or
guardians, health services such as therapeutic abortion, contraception, treatment for
illicit drug use or alcohol abuse, and treatment of sexually transmitted infections36.
Also in those countries where the concept of “mature minor” is recognised, they are
authorised to consent to treatment without the agreement or even the awareness of
their parents or guardians. Mature minors may include those who are married,
pregnant, sexually active, living independently or who are themselves parents) which
enable them to provide consent for themselves for some services.3738 The distinction
does not appear to be related to the legality of the activity; the sexual activity of many
younger adolescents is, within the letter of the law, illegal39.
Example of good practice – under and over age 16 years
Considerable changes have been made to the legislation relating to health service
provision in the United Kingdom (UK) and the current situation regarding under and
over 16 years olds is described below.
Legal situation regarding competence and consent amongst adolescents in the UK
Adapted from: British Medical Association (2001). Consent, rights, and choices in health care for
children and young people, BMA, London and the Department of Health (2001) Seeking consent:
working with children, Department of Health, UK, London.
The legal position regarding competence is different for children aged over and under 16. For
consent to be valid, the person (child or parent) giving consent must be:
• capable of taking that particular decision („competent‟)
• acting voluntarily (not under pressure or duress from anyone)
• provided with enough information to enable them to make the decision.
Adolescents aged 16 and 17
In some countries once children reach the age of 16, they are presumed in law to be competent
to give consent for themselves for their own medical or dental treatment, and any associated
procedures. This means that in many respects they should be treated as adults – for example if a
signature on a consent form is necessary, they can sign for themselves. They should also be
assured of confidentiality in clinical consultations.
However, it is good practice to encourage competent children to involve their families in
decision-making, unless it is determined that it is not in their best interests to do so. Where a
competent adolescent asks a health care provider to keep their confidence, they should do so,
unless they can justify disclosure on the grounds that there is reasonable cause to suspect that
the child is suffering, or is likely to suffer, significant harm.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Who can give consent?
Like adults, children aged 16 and 17 may sometimes not be competent to take particular
decisions. For example, they may be under the effects of drugs, or be unable to take a decision
because of the effects of pain, or medication. It should not be assumed that an adolescent with
learning disabilities is not competent to take his or her own decisions: many children will be
competent if information is presented in an appropriate way and they are supported through the
decision-making process.
If a child of 16 or 17 is not competent to take a particular decision, then a person with parental
responsibility can take that decision for them, although the child should still be involved as
much as possible. Once children reach the age of 18, no-one else can take decisions for them.
Younger adolescents
Under age 16, adolescents are assumed to be competent for consent/confidentiality purposes if
the health care provider can be confident that they can give informed consent and understand
the consequences of their decision.
Unlike 16 or 17 year olds, adolescents under 16 are not automatically presumed to be legally
competent to make decisions about their health care. However in some countries, courts have
stated that under 16s will be competent to give valid consent to a particular intervention if they
have “sufficient understanding and intelligence to enable him or her to understand fully what is
proposed”. There is no specific age when a child becomes competent to consent to treatment:
it depends both on the child and on the seriousness and complexity of the treatment proposed.
If an adolescent under 16 is competent to consent for himself or herself to a particular
intervention, it is still good practice to involve their family in decision-making unless the child
specifically asks for them not to be involved and the health care provider cannot persuade them
otherwise. As with older children, any request from a competent under-16 year old to keep
their treatment confidential should be respected, unless the health care provider can justify
disclosure on the grounds that they have reasonable cause to suspect that the adolescent is
suffering, or is likely to suffer, significant harm.
People with parental responsibility
If a child is not competent to give consent for themselves, consent from a person with “parental
responsibility” should be sought. This will often, but not always, be the child‟s parent. Legally,
consent is only needed from one person with parental responsibility, although it is good practice
to involve all those close to the child in the decision-making process.
Recommendations
1. National guidelines should be developed to promote access of MARA to HIV
information, prevention and treatment services and to inform health care providers
working with adolescents of the rights of adolescents and when to involve parents
and other service providers in decisions relating to their care.
2. Training for health care providers should include information and practical training
on managing consent and confidentiality with MARA and on the rights of the child.
3. Good practice guidelines should be followed by all practitioners in relation to
adolescents‟ rights and professionals‟ responsibilities in the area of consent, and
confidentiality.
4. All services for adolescents should produce an explicit confidentiality policy which
makes clear the duty of confidentiality, their right to confidential prevention and
treatment services, and where such services are located40.
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HIV prevention and treatment services for MARA
National and local laws may or may not stipulate precisely the age of majority for
independent access to health services, or the age at which adolescents are allowed to
give their own consent may vary for different procedures. For example, adolescents
may be able to consent to be tested for HIV or receive condoms at a younger age than
they can consent to surgical procedures41.
A different kind of service is required to attract and retain MARA engagement with
health service providers than for adults, who have already experienced and used
services for themselves. It is up to health care providers to develop services which
meet the needs of MARA. This may involve making existing services for adult injecting
drug users, sex workers and men who have sex with men, appropriate to adolescents
and training outreach and static service providers in how to understand and respond to
the needs of MARA. Alternatively, existing services for adolescents and young people,
such as youth friendly health services, can reach out to or be a referral service for
MARA. This entails re-orienting existing service providers to the specific needs of
adolescent girls and boys who inject drugs or who are engaged in sex work, and
adolescent boys who have sex with males42.
The need for services to be co-ordinated and for information about different health
interventions being received by an individual raises two important issues. First, the
strategic coordination of services for adolescents has to be considered both within and
between services and includes services provided by NGOs, health, social, educational
and legal services. Secondly, information sharing between services about an individual
adolescent has to take into account issues of confidentiality43.
In relation to ethical issues relating to HIV prevention and treatment services for MARA,
ethical guidance has already written on HIV testing and equitable access to HIV
treatment services44.
HIV testing
This section has been adapted from WHO and UNAIDS (2004). Guidance on ethics and
equitable access to HIV treatment and care, WHO, Geneva and UNAIDS(2004) HIV
Testing of Specific Populations: Children and Adolescents, UNAIDS Global Reference
Group on HIV/AIDS and Human Rights, Third Meeting, Geneva, 28-30 January.
In many countries the ability of minors to provide legally valid informed consent is not
clearly defined, or the age at which they can consent and/or be tested or treated
without information being disclosed to a parent or guardian is 18 years or older.
Confidentiality is essential if adolescents are to decide to seek treatment. Whether
because of stigma or a threat to their safety, if a positive status becomes known, an
inappropriate insistence on parental consent may in effect amount to a denial of
treatment and care. Even when the law allows confidential testing or treatment at a
younger age for certain conditions, this authority may be poorly understood by health
care providers. Moreover, health care providers may have to make assessments of
young persons‟ capacities to make decisions on the basis of informed consent, but may
not feel adequately prepared to do this45.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
International human rights
The CRC46 places an obligation on governments to ensure that as children mature, they
can take an increasing role in decisions affecting their capacity. It is this complex
balance of rights and responsibilities among the state, parents, and children that
frames and cuts across the human rights considerations of HIV testing for children and
adolescents.
The capacities and development of a 10 year old - who may rely on his or her parents
to seek testing - would likely be less evolved than that of a 16 year old - who may seek
testing and treatment on his or her own. This is a critical distinction which may or may
not be reflected in testing policies. Discussion of the rights of the child in relation to
HIV testing policies can usefully be framed with reference to two of the overarching
general principles of the CRC: 1) the best interests of the child 47; and 2) a child‟s right
to participate in decisions affecting his or her life as a function of his or her evolving
capacities.
Access to HIV testing
Knowing about HIV testing: It is the duty of States to ensure the conditions under which
adolescents (recognising their evolving capacities, gender and other differences), can
decide voluntarily to be tested for HIV48. Testing policies rarely articulate a strategy for
promoting voluntary testing and counselling, although some National HIV plans outline
their outreach campaigns for specified populations, but rarely do they include
adolescents.
Accessing the test: Testing policies may or may not specify who can access testing and
under what circumstances. Some policies are silent as to who can access testing.
Others place age restrictions on access. By setting a defined age standard, or policy
(explicitly or tacitly) may be an impediment to accessing an HIV test, as well as once
testing has occurred, keeping the act of testing and the test results confidential. Such
chronologically-based age limitations often do not recognise the child‟s evolving
capacities, his or her right to participate, as well as his or her best interests.
There may be laws of general application that set a uniform age of legal capacity,
usually 18 years of age. In some countries, the law sets an earlier age for consensual
sex, such as 16, which is sometimes younger for girls. Where a testing policy prohibits
children under a certain age, unless expressly authorised by his or her parents/legal
guardians from accessing testing services, this may be supporting these laws, at
variance with them, or it may be an official exception to the rule.
Some policies include measures to determine whether the child has capacity to
understand what an HIV antibody test entails, the consequences of being HIV infected,
and why he or she may be at risk for HIV, in lieu of a strict age standard. If the child
can understand, a test is given and the results communicated to the child, and to the
child‟s parents only with the child‟s permission. Similarly many countries have
procedures through which exceptions to the aged-based legal capacity law can be made
in certain circumstances, such as “judicial by-pass” mechanisms, or appointing
ombudspersons (guardian ad litem) when obtaining informed consent from the adult
legally responsible for the child is not possible.
Even when laws and/or policies facilitate access to testing for adolescents by ensuring
informed consent and confidentiality, social, cultural and moral norms may present
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
barriers, particularly for adolescent girls. Gendered expectations regarding appropriate
sexual behaviour may limit girls‟ autonomy to seek out HIV testing, even where laws
and policy provide for access.
Purpose of Testing
Adolescents may be tested for HIV in the following circumstances:






Individual diagnosis in case of sexually transmitted or other illnesses
When transmission of HIV in the health care setting is suspected
Following reported sexual abuse
In the course of pregnancy
On admission to orphanages or other institutions
Among children living/working on the street
Given the sensitivities and complexities that underlie all of the reasons why
adolescents may be tested for HIV, it is crucial that the purpose of HIV testing be
considered. Testing policies are often silent and do not name the circumstances under
which adolescents are tested or offered testing.
Site of HIV Testing
There are some specific concerns that routinely prescribed or offered HIV testing raises
for adolescents beyond those raised for the general population. In most situations, the
question of HIV testing occurs when adolescents access health services for other
reasons. Older children may only have access to an HIV test when they are brought into
health services by their parents or legal guardians49. Testing policies may expressly or
tacitly give health care professionals discretion to offer an HIV test to a child (via
his/her parents). Laws and policies relating to consent may vary; depending on the
circumstances. Policies addressing adolescents in health services (whether they come
on their own or with their parents) sometimes amalgamate them with children, or
sometimes treat them separately.
Once the test has taken place, how the confidentiality of a test result is protected (by
law or policy), is a further concern. This is particularly salient where a mature child
seeks out testing, and a law or policy requires that the results of the test be
communicated to a third party, such as the state, an insurance company, or the child‟s
parents. Testing policies may require the health care professional to obtain consent
from the child to report the results, the policy may be silent, or the laws may set forth
specific requirements.
Precondition to access HIV/AIDS-related care and support, and/or treatment
Assuming that adolescents know their HIV status, they must also learn about the
availability of health care services and treatment. Most testing policies require
counselling sessions to refer the individual on to appropriate care and treatment. For
adolescents the situation may be complicated and policies often are silent as to how to
tailor the information to suit young people as their capacities evolve, failing also to
recognise the implications of gender differences between boys and girls as to how they
may receive this information. It is also worth noting that legal or policy barriers may
result in adolescents not being able to consent to care and treatment even if they may
consent to the HIV testing services50.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Recommendations
1. Governments should develop and implement clear legal and policy frameworks that
stipulate: i) the specific age and/or circumstances in which minors may consent to
HIV testing for themselves or for others and ii) how the assent of and consent for
adolescents should best be assessed and obtained.
2. Efforts to expand provider-initiated HIV testing and counselling in health facilities
should include training and supervision for health care providers on laws and
policies governing the consent for minors to access clinical services, including when
they can and cannot recommend an HIV test to an adolescent independent of the
consent of the adolescent‟s parent or legal guardian.
3. Where the law does not allow a sufficiently mature adolescent to give his or her
own informed consent to an HIV test, the health care provider should provide an
adolescent patient with the opportunity to assent to HIV testing and counselling in
private, without the presence or knowledge of his or her parents or legal guardians.
The pre-test information should be adapted to the patient‟s age, developmental
stage and literacy level. If the adolescent provides assent, indicating that he or she
understands the risks and the benefits of HIV testing and would like to receive the
test, then the health care provider should seek the informed consent of the parent
or legal guardian51.
4. When a parent or legal guardian is not available to give consent on the adolescent‟s
behalf, the health care provider may need to assess whether an adolescent can
request and consent to testing on their own.
5. The provider must always work within the framework of local or national laws and
regulations and be guided by the best interests of the child.
Access to HIV treatment and care
The WHO and UNAIDS recognise a range of barriers to care for HIV faced by some
adolescents and young people. These may arise from restrictive laws and policies,
and/or from a failure to adjust programmes to their particular needs and
characteristics. Efforts to engage citizens in decision-making and priority-setting should
include young people, making them full partners in establishing equitable access to
treatment and care for persons living with HIV52.
It is therefore recommended that:
1. Young people, especially adolescents, be treated equitably when accessing HIV
treatment services and that laws and regulations are in place to enable adolescents
obtain care under appropriate circumstances. These will need to be gender
sensitive to ensure they meet the needs of both young male and females.
2. National HIV programmes convey the importance of knowing one‟s HIV status and
provide information to adolescents on how to access counselling and testing
services as well as education on their rights.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Special considerations for adolescent boys and girls who are
commercially sexually exploited/involved in child prostitution
It is estimated that about 10% of sex workers in the CEE/CIS region are minors, that is,
they are commercially sexually exploited. They are extremely hard to reach as the
organisers of sex work know they are committing a criminal offence in sexually
exploiting children for commercial gain. There is also anecdotal evidence of increased
demand for sex with minors.
HIV prevention services are geared to the needs of adult sex workers and do not focus
on the special needs of minors.
Case study 1
In an attempt to increase coverage of HIV prevention services to sex workers a mobile
team provides condoms, voluntary HIV testing and counselling, and management of
sexually transmitted infection (STI) services on a converted ambulance. The mobile
team goes to designated sites each evening and outreach workers mobilise sex workers
to seek the services at the appointed time. Staff providing these outreach services
have been told to reach as many sex workers as possible and have been trained to
provide anonymous services as these are likely to be more attractive to the people they
need to reach. They therefore do not ask users for their name, but use an unique
identifier code and do not ask for their precise date of birth only the year of birth.
At one site the doctor on the bus notices that some of the girls coming to the services
seem to be minors, but they all give their year of birth as 1990. None of the girls are
local - they all come from rural areas and say their parents are aware of their
“occupation” and they send money back to them to support their family.
What do you think should be done?
Many health workers consider that if the national legal age of marriage is 16 for girls
then the involvement of girls aged 16 to 18 years in sex work is not in contravention of
national legislation. However, according to international human rights legislation a
minor is defined as under age 18 and the sexual abuse of a minor for economic gain is
regarded as commercial sexual exploitation of children (CSEC) irrespective of whether
the girl or boy says they are engaged voluntarily and/or with their parents knowledge
and/or consent.
Therefore health workers are obliged to report suspicion of sexual exploitation or abuse
of children to the appropriate authorities. They should first treat any conditions that
the minor has sought care for and during the counselling session determine whether the
child is a minor or not and explain that if they are a minor that they have an obligation
to refer them to protection services for further care and support. There is no
obligation to report them to the police as they have not committed a criminal offence,
but those who have paid to have sex with them or given them gifts in exchange for sex,
have committed a criminal offence and could be liable for prosecution.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Health workers who fail to refer the minor to child social and legal protection services
may face sanctions for not doing so, including sanctions for failure to notify facts
suggesting a threat to the child.
Many HIV prevention programmes may feel that these actions will act as a future
deterrent to minors seeking their services and may lead to a lack of confidence in the
advertised “anonymous” services. Whilst this is a valid consideration, all professional
staff should observe the UN Convention on the Rights of the Child and the UN Optional
Protocol to the Convention on the Rights of the Child on the sale of children, child
prostitution and child pornography.
Case study 2
A mobile outreach bus providing services for HIV and STI prevention is often visits a car
park where young Roma women and transgendereds sell sex. As part of the programme
research was conducted into the young people selling sex and more in-depth
information was obtained about them than is required during the anonymous
counselling sessions. One interview revealed that a 15 year old Roma girl with a four
month old baby started selling sex one week ago. She is homeless and she lives in a
cardboard box in a field and has only three years of education and has been injecting
drugs since age 13 (and had also used analgesics, marijuana, poppy seed and speed).
The girl received HIV testing and counselling HIV on the mobile bus and was examined
for STIs. Her level of knowledge was very low and it was not clear that she understood
much about HIV and the dangers of substance use and selling sex.
What do you think should be done?
Clearly this girl‟s needs are much great than HIV prevention services which is the only
service she currently accesses. She suffers from multiple vulnerabilities and has needs
for education, employment, housing, protection from sexual abuse, and substance use
services.
Her contact with HIV prevention services provides an opportunity or entry point to
other services. However, in most countries in the region the services this Roma girl
requires are not yet in place. This should not be cause for inaction. There is an
obligation on the part of health workers to report the exploitation of the girl and to
refer her to appropriate services (as in Case Study 1). Even though she is a mother,
she is still legally a minor and therefore requires protection from commercial sexual
exploitation.
Greater attention also needs to be paid to vulnerability reduction strategies and
measures to address the CSEC under grants from the Global Fund to fight AIDS,
Tuberculosis and Malaria (GFATM) and funds for the Roma Decade. When minors are
involved, it is not sufficient to provide financial support only for HIV risk reduction,
attention should also be paid to their protection needs.
The most appropriate protection response for such children would be the establishment
of safe houses at municipal level where health, legal and social services are provided
along with educational opportunities, life skills development and skills in income
generation. Health and related staff working with sexually exploited minors can play a
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
key role in advocating for such services that could be an integral part of multi-sectoral
municipal services for especially vulnerable children, or any Child Friendly Cities
initiative.
Implications for service providers
1. Training in the following areas is essential:
a. Convention on the Rights of the Child
b. Optional Protocol to the Convention on the Rights of the Child on the sale of
children, child prostitution and child pornography
c. National legislation relating to service provision for minors
d. Counselling and communication for working with adolescents and national
ethnic minorities, such as Roma
e. Sexuality – including same sex relations, bisexuality, transgendered and
transexuality
f. HIV prevention interventions
g. Multi-sectoral responses to vulnerability reduction and the roles of the
respective agencies
2. A system of confidentiality between government and non-government organisations
(NGOs) providing HIV prevention services to sex workers and between referral
services in other sectors should be in place.
3. Advocate for increased protection for sexually exploited children, who should be
treated as victims and not criminalised.
4. Anonymous services for HIV testing and counselling and sexually transmitted
infections (STIs) are likely to result in increased uptake of services by children
involved in commercial sexual exploitation and could be an entry point for their
referral to protection services.
5. Examples of good practice (gender separate safe houses and shelters) for the
victims of CSEC should be identified and disseminated throughout the region with a
view to urgent scaling-up of such services and capacity building of service
providers.
6. Any services provided for victims of CSEC should not discriminate between the local
population and national minorities – they should have equal access to such services.
7. Efforts need to be made to improve and facilitate the ease of obtaining identity
documents for national minorities and displaced persons to ensure their universal
access to all services received by the national population53.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Special considerations for adolescent boys who have sex with
males
In many countries in the region, homosexual behaviour is illegal and in countries where
it is not illegal, male same sex relations are highly stigmatised. As a consequence,
adolescent males who have sex with other males are often marginalised and not
reached by mainstream HIV prevention and treatment efforts and may experience
stigmatisation, discrimination, and social exclusion54.
Young men who have sex with other males may be unsure about their sexuality and not
have any-one to talk to due to the stigma surrounding homosexuality and bisexuality. In
many countries in the region evidence is beginning to emerge that transgendered young
people are the most discriminated against and hard to reach55.
Case study 1
Staff at voluntary counselling and testing for HIV (VCT) services in one country have
noted that there are an increasing number of young men coming for HIV testing who
they think are aged 18 and below. The national legislation states that children under 18
years cannot access counselling or testing without parental consent. When asked their
age none of the clients admits to being under age 18. Staff are divided on whether they
should provide VCT for these young men – some for and some against.
What do you think should be done?
This is a delicate issue as stated earlier. According to WHO and UNAIDS, advocating for
a defined age standard, or policy (explicitly or tacitly) may be an impediment to
accessing an HIV test, as well as once testing has occurred, keeping the act of testing
and the test results confidential. Such chronologically-based age limitations often do
not recognise the child‟s evolving capacities, his or her right to participate, as well as
his or her best interests.
It should therefore be up to the health care provider to make an assessment of the
maturity of the adolescent. If they are deemed to be a mature minor, then they should
be counselled to ensure that they have understood the implications of a positive HIV
test result and that they know how to protect themselves and others from HIV
infection.
In all cases the health care provider should determine whether sexual abuse has
occurred and if so, refer the boy to the appropriate social and legal protection
services.
Case study 2
An adolescent boy of 15 consults you (a doctor at a dermato-venereology clinic) with
genital herpes around the anus. He is reluctant to talk and wants treatment. The
legislation in your country states that medical services for under 16s should not be
provided without parental consent.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
What should you do?
The first thing you should do is to establish trust between yourself and the adolescent
and determine whether he has any idea of what he is suffering from and how he
acquired the infection. This requires counselling skills and a knowledge of same sex as
well as heterosexual practices. The main thing you need to find out is whether he
willingly engaged in sexual relations with another male or if it was forced. If the
former you should find out more about how comfortable he is with his sexuality, how
long he has been having sex with men, and ask if his parents are aware that he has
relations with men. During this time you should be able to decide whether the boy is
competent to consent for himself.
You should also ask if he would object to his parents being told about his condition. If
he objects saying something like his father would “beat/kill me” if he knew, then you
should provide the treatment without parental consent and request that his sexual
partner should also be treated. You should also counsel about condom use. To deny
treatment without parental consent may mean that the condition remains untreated
and to seek parental consent without the agreement of the mature minor may result in
him being harmed by his father.
However, if during the counselling you find out that the boy has been sexually abused,
then another approach is required.
You should still respect any request from a
competent under-16 year old to keep their treatment confidential, unless you can
justify disclosure on the grounds that you have reasonable cause to suspect that the
child is suffering, or is likely to suffer, significant harm. The condition should be
treated and the boy should be referred to appropriate child protection services and
counselling (if such services exist).
Implications for health service provision
1. Training in the following areas is essential:
a. Convention on the Rights of the Child
b. National legislation relating to service provision for minors
c. Counselling and communication for working with adolescents
d. How to assess competence
e. Sexuality – including same sex relations, bisexuality, transgendered and
transexuality
f. Use of condoms and lubricants for anal sex
2. A system of confidentiality between government and NGO health services and
between referral services in other sectors should be in place.
3. Anonymous services for HIV testing and sexually transmitted infections (STIs) are
likely to result in increased uptake by young MSM.
4. Advertising anonymous and confidential HIV testing and counselling and STI services
through MSM web sites and places where MSM congregate (bars, cafes, clubs, discos,
saunas and streets) will increase knowledge about services and satisfied users will
spread information about good services by word of mouth.
5. Condoms for anal sex and lubricants should be available at services for HIV and STIs
as well as through outreach workers.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Special considerations for adolescent boys and girls who inject
drugs
Within the CEE/CIS region the age of first injecting drugs is decreasing, with injectors
as young as age 11. However, adolescents who inject drugs are often intermittent
injectors, perhaps injecting several times a month, rather than daily as do most adults.
The services provided are geared towards the needs of adults who inject daily.
In many countries in the region, injecting drugs is illegal and in countries where it is
not illegal, it is highly stigmatised. As a consequence, adolescent boys and girls who
inject drugs are often marginalised and not reached by mainstream HIV prevention and
treatment efforts and may experience stigmatisation, discrimination, and social
exclusion.
Case study 1
During outreach work where clean drug injection equipment and condoms are
distributed it becomes apparent that at several sites it is mainly minors who want to
use the services, yet they do not come to the services of the Drop-in Centre where a
more comprehensive range of services are offered. On talking with the adolescent
injectors they say they do not inject daily and prefer to receive the outreach services
as they are afraid of police harassment if they visit static services.
What do you think should be done?
Having established contact with young injectors as part of a needle, syringe and
condom distribution programme is an important first step. However, it is important
that they have the confidence to seek other services for counselling on substance use
and about not injecting in front of others, also well as HIV Testing and Counselling
Services, treatment of sexually transmitted infections (STIs) and emergency first aid.
Adolescents who inject drugs can act as “networkers” for others who inject drugs, or
sell sex in order to buy drugs. They can provide information and linkages with other
services where staff have been trained to provide anonymous and confidential services
to minors. However, the illegal nature of injecting drug use in many countries means
that many outreach programmes operate with an unclear legal status. It is therefore
essential to gain the cooperation of law enforcement agencies to facilitate access to
services by minors who inject drugs. Also as stated earlier, minors who inject drugs
should not be incarcerated but referred to diversion programmes.
HIV Testing and Counselling should be offered to mature minors who inject drugs as this
provides an important HIV prevention opportunity. It is up to the health care provider
to make an assessment of the maturity of the adolescent. If they are deemed to be a
mature minor, then they should be counselled to ensure that they have understood the
implications of a positive HIV test result and that they know how to protect themselves
and others from HIV infection.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Harm reduction interventions do not necessarily provide adolescents with assistance to
reduce or address their drug use and making available counselling and treatment to
assist them to reduce drug injection is recommended. Sexually active girls and boys
who inject drugs also need access to condoms and confidential STI treatment services,
especially if they sell or exchange sex to purchase drugs.
Implications for staff of harm reduction and related services
1. Training in the following areas is essential:
a. Convention on the Rights of the Child
b. National legislation relating to substance use service provision for minors
c. Counselling and communication for working with adolescents
d. Substance use reduction with minors
e. How to assess competence
f. Sexuality – including same sex relations, bisexuality, transgendered and
transexuality
g. Use of condoms
2. A system of confidentiality between government and NGO harm reduction services
and within referral services in other sectors should be in place.
3. Anonymous services for HIV testing and sexually transmitted infections (STIs) are
likely to result in increased uptake by young injecting drug users.
4. Using peer outreach workers to inform minors who inject drugs where to access
anonymous and confidential HIV testing and counselling and STI services could
increase knowledge about services and satisfied users will spread information about
good services by word of mouth.
5. Condoms should be provided to sexually active minors who inject drugs.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Special considerations for adolescent boys and girls living without
parental care
Children who live or work on the streets in CEE/CIS are known to be vulnerable to
engage in HIV risk behaviour. Recent research found that 37.4% of street children
surveyed in Saint Petersburg to be HIV-positive.
Case study 1
In your work with children living/working on the street you suspect that a 14 year old
boy is developing clinical signs of AIDS and you would like to test him for HIV.
What do you think should be done?
All testing for HIV should be with informed consent. It is up to the health care provider
to make an assessment of the maturity of the adolescent. If they are deemed to be a
mature minor, then they should be counselled to ensure that they have understood the
implications of a positive HIV test result and that they know how to protect themselves
and others from HIV infection.
You should inform the child about the availability of health care services and
treatment. Most HIV testing policies require counselling sessions to refer the individual
on to appropriate care and treatment. There should be no testing without the offer of
treatment, care and support. This may be problematic when the minor does not have
national identity documents or cannot provide information about the whereabouts of
his/her parents to prove eligibility under the health insurance scheme. However,
health insurance schemes in many countries have exemption clauses that cover such
eventualities.
The health care provider should also determine whether sexual abuse has occurred and
if so, refer the boy to the appropriate social and legal protection services.
Case study 2
During the summer months it has been noticed that there is an increase in the number
of children living and working on the streets in a coastal resort town. The police want
to round up all the children and have them tested for HIV before placing them in
shelters.
What do you think should be done?
According to WHO and UNAIDS there are no justifiable public health grounds for
mandatory testing for HIV. All testing should be conducted with informed consent and
an assessment of the maturity of the minor should be undertaken to assess whether
they are mature enough to provide consent to testing.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Law enforcement officers and staff of children‟s shelters need to be made aware of the
grounds under which testing minors for HIV can be permitted, that is, with the
informed consent of mature minors. States must refrain from imposing mandatory HIV
testing of children in all circumstances and to ensure protection against it56.
There is no risk of HIV transmission through shared living space57 such as orphanages
and shelters, and therefore there is no justification for testing children for HIV before
being placed in such institutions58. Moreover, this is in contravention of international
human rights law and in many countries, of national AIDS legislation which does not
support mandatory testing of persons on public health grounds.
Implications for staff working with children living without parental care
1. Training in the following areas is essential:
a. Convention on the Rights of the Child
b. Optional Protocol to the Convention on the Rights of the Child on the sale of
children, child prostitution and child pornography
c. National legislation relating to service provision for minors
d. Counselling and communication for working with adolescents and national
ethnic minorities, such as Roma
e. Substance use reduction with minors
f. How to assess competence
g. HIV treatment protocols for minors/adolescents59
h. Sexuality – including same sex relations, bisexuality, transgendered and
transexuality
i. Use of condoms
j. Multi-sectoral responses to vulnerability reduction and the roles of the
respective agencies
2. A system of confidentiality between government and NGO services for children
living/working on the streets and within referral services in other sectors should be
in place.
3. Advocate for increased protection for sexually exploited children, who should be
treated as victims and not criminalised.
4. Anonymous services for HIV testing and sexually transmitted infections (STIs) are
likely to result in increased uptake by children living without parental care.
5. Using peer outreach workers to inform minors living/working on the streets where
to access anonymous and confidential HIV testing and counselling and STI services
could increase knowledge about services.
6. Condoms should be provided to sexually active minors.
7. Advocate for multi-sectoral services to be established/scaled-up to respond to the
multiple vulnerabilities of children living/working on the street.
8. Any services provided for children living without parental care should not
discriminate between the local population and national minorities – they should
have equal access to such services.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
9. Efforts need to be made to improve and facilitate the ease of obtaining identity
documents for national minorities and displaced persons to ensure their universal
access to all services received by the national population60.
10. Advocate for the inclusion of displaced populations in national HIV strategies,
policies and plans of actions and put mechanisms in place to monitor that displaced
populations (including national minorities) have universal access to HIV prevention,
treatment, care and support services61.
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Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
Endnotes
1
Homans (2007) Ethical issues in conducting quantitative research with adolescents engaging in
HIV risk behaviour, UNICEF CEE/CIS, Geneva.
2
UNAIDS Interagency Task Team (IATT) on HIV and Young People (2008) Global Guidance Brief
on HIV Interventions for Most at-risk Young People, UNFPA, New York.
3
All countries in CEE have ratified this protocol.
4
UNAIDS Interagency Task Team (IATT) on HIV and Young People (2008) Global Guidance Brief
on HIV Interventions for Most at-risk Young People, UNFPA, New York.
5
UNAIDS Interagency Task Team (IATT) on HIV and Young People (2008) Global Guidance Brief
on HIV Interventions for Most at-risk Young People, UNFPA, New York.
6
For more information on HIV programmes for MARA see Homans (2008) Regional Guidance
Manual on Programming to Prevent HIV in Most at-risk Adolescents. UNICEF Central and Eastern
Europe and the Commonwealth of Independent States, UNICEF, Geneva.
6
UNAIDS (2005) Intensifying HIV Prevention. UNAIDS, Geneva.
7
UNDP (2006) Positive people know your universal human rights. UNDP HIV/AIDS Regional
Programme in the Arab States. http://www.harpas.org
8
An index to measure stigma towards PLHIV has been developed and can be adapted for use
with young PLHIV. International Planned Parenthood (IPPF), GNP+, ICW and UNAIDS (2008) The
People Living with HIV Stigma Index User Guide. IPPF, London.
9
UNAIDS Interagency Task Team (IATT) on HIV and Young People (2008) Global Guidance Brief
on HIV Interventions for Most at-risk Young People, UNFPA, New York.
10
Royal College of Paediatrics and Child Health (2003) Bridging the gaps: health care for
adolescents, RCPCH, London.
11
United Nations (1989) Convention of the Rights of the Child CRC Article 5. UN, New York.
12
The concept of the „mature minor‟ standard is adopted by the Court if he or she has sufficient
understanding and intelligence to understand fully what is proposed.
13
The WHO training course on Child rights is intended to provide detailed guidance for training
on child rights, WHO (2002) Child Rights Capacity Building Training Course: Facilitator Guide.
WHO, Geneva.
14
WHO (2005) Increasing access to HIV counselling and testing for adolescents: consent and
confidentiality. WHO, Geneva.
15
The standards state the services should be:
- Applicable to all juveniles without discrimination of any kind, including on the basis of race,
sex, ethnic origin and so on.
- Protect and guarantee the physical integrity of the child.
- Provide conditions under which children can develop their full human potential. Treatment
should be appropriate to the age of the child.
- Allow children to participate and to express their views (CRC, article 12).
- Culturally appropriate for Indigenous children or children belonging to ethnic, religious or
cultural minorities. Positive steps to protect their cultural characteristics may be required.
- Recognise that in most circumstances the best interests of the child will be served by
remaining with their family, and for the family to be involved in the child's development.
16
The United Nations Children's Fund (UNICEF) and the United Nations Population Fund (UNFPA)
estimate that 2 million children are exploited in prostitution or pornography every year cited in
Youth Advocate Programme International http://www.yapi.org/csec/
17 Platt, B. (2003) ‘Commercial sexual exploitation of children: a global problem requiring
global action‟, Sexual Health Exchange 2002-3
http://www.kit.nl/exchange/html/sexual_exploitation_of_childre.asp
18
All countries in CEE have ratified this protocol.
19
Adapted from Ministry of Interior of the Czech Republic (no date) Commercial Sexual
Exploitation of Children, Security Policy Department http://[email protected]
20
UN Committee on the Rights of the Child (2008) Consideration of reports submitted by States
Parties under Article 44 of the Convention: Concluding Observations of the Committee on the
Rights of the Child: Republic of Serbia, Forty-eighth session CRC/C/SRB/CO/1, 6 June 2008.
Draft June 2008
Hilary Homans
25
Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
21
For more information on the role of the Ombudperson for Children see the European Network
of Ombudspeople for Children (ENOC) http://www.ombudsnet.org/enoc
22
Minors are not always incarcerated separately from adults.
International Federation of Red Cross and Red Crescent Societies (2003) Spreading the light of science:
Guidelines on harm reduction related to injecting drug use. IFRC, Geneva.
23
UNAIDS Interagency Task Team (IATT) on HIV and Young People (2008) Global Guidance Brief
on HIV Interventions for Most at-risk Young People, UNFPA, New York.
25
http://www.hreoc.gov.au/Human_RightS/briefs/brief_5.html
26
See for example:
United Nations Standard Minimum Rules for the Administration of Juvenile Justice (Beijing
Rules)
United Nations Standard Minimum Rules for Non-Custodial Measures 1990 (Tokyo Rules)
United Nations Guidelines for the Prevention of Juvenile Delinquency (Riyadh Guidelines)
United Nations Rules for the Protection of Juveniles Deprived of their Liberty
27
The CRC states that these services should: be consistent with the promotion of the child's
sense of dignity and worth; reinforce the child's respect for the human rights and fundamental
freedoms of others; and take into account the child's age and the desirability of promoting the
child's reintegration and the child's assuming a constructive role in society.
28
The ICCPR requires that criminal procedures for young people take into account the
desirability of promoting their rehabilitation (Article 14.4).
29
Diversion is offered as an alternative way of dealing with young people's offending behaviours
- the young person is diverted away from the criminal justice system into a programme that
makes him or her accountable for their actions.
30
WHO/UNAIDS (2007). Guidance on provider-initiated HIV testing and counselling in health
facilities, WHO, Geneva. Available at http://www.who.int/hiv
31
British Medical Association (2001). Consent, rights, and choices in health care for children and
young people, British Medical Association, London pp 266 + xix. ISBN 0-7279-1228-3. This book
offers comprehensive practical guidance on the ethical and legal issues that arise in the health
care of patients under 18 years of age in the United Kingdom. This is a frequent area of enquiry
to the BMA's Medical Ethics Department. This book reflects the questions most commonly raised
by health professionals, including questions about consent, refusal of treatment and
confidentiality. It also offers advice about dealing with exceptional cases. The contents
include: An ethical approach to treating children and young people; The law on children,
consent and medical treatment; Confidentiality; Involving children and assessing a child's
competence; Refusal of treatment and decisions not to treat; Mental health care of children and
young people; Sensitive or controversial procedures; Research and innovative treatment; Health
care in schools; and, Summary of good practice.
32
ibid.
33
Department of Health (2001) Seeking consent: working with children, Department of Health,
UK, London.
34
ibid.
35
ibid.
36
UNAIDS and WHO (2007) Ethical considerations in biomedical HIV prevention trials. UNAIDS,
Geneva. UNAIDS/07.28E / JC1349.
37
ibid.
38
WHO/UNAIDS (2007). Guidance on provider-initiated HIV testing and counselling in health
facilities, WHO, Geneva. Available at http://www.who.int/hiv
39
British Medical Association (2001). Consent, rights, and choices in health care for children and
young people, British Medical Association, London.
40
Adapted from Department of Health (2001) Seeking consent: working with children,
Department of Health, UK, London.
41
WHO/UNAIDS (2007). Guidance on provider-initiated HIV testing and counselling in health
facilities, WHO, Geneva. Available at http://www.who.int/hiv
42
For more information on HIV programmes for MARA see Homans (2008) Regional Guidance
Manual on Programming to Prevent HIV in Most at-risk Adolescents. UNICEF Central and Eastern
Europe and the Commonwealth of Independent States, UNICEF, Geneva.
Draft June 2008
26
Hilary Homans
24
Ethical and protection issues in HIV programming for adolescents engaging in HIV risk behaviour
43
ibid.
This guidance was prepared to include adolescents in generalised HIV epidemic scenarios.
However, it is especially pertinent to MARA in low and concentrated epidemics.
45
WHO and UNAIDS (2004). Guidance on ethics and equitable access to HIV treatment and care,
WHO, Geneva.
46
United Nations CRC. General Comment 3 on HIV/AIDS, UN, New York.
http://www.unhchr.ch/html/menu2/6/crc/doc/comment/hiv.pdf
47
The doctrine of “best interests of a child” places the responsibility for ensuring that the rights
of the child are ensured with the parent, legal guardian, or the state as parens patriae. As a
child‟s capacity evolves, so does his or her right to participate in decision making.
48
Children who are in special circumstances, such as, institutional care (juvenile justice
facilities, mental health institutions, foster care, refugee or IDP camps) may require specific
outreach initiatives. In all cases, youth-friendliness is important in pre- and post- counselling
sessions, as well as in services, care, support, and treatment.
49
Emergency circumstances may obviate the legal necessity to obtain consent, based on the
notion of implicit consent to interventions to save life and health in an emergency; testing may
be considered “necessary,” in these circumstances, in order to provide care. Testing facilities
may operate within the official health care system, or by NGOs. The facilities may be stand
alone centres that provide HIV counselling and testing they may be part of dermato-venereology
clinics, pre-natal health clinics, or family planning centres. It is possible that an older
adolescent may chose to seek out testing at a Voluntary Counselling and Testing (VCT) centre.
http://data.unaids.org/Topics/Human-Rights/hr_refgroup3_02_en.pdf
50
UNAIDS (2004) HIV Testing of Specific Populations: Children and Adolescents, UNAIDS Global
Reference Group on HIV/AIDS and Human Rights, Third Meeting, Geneva, 28-30 January.
51
WHO/UNAIDS (2007). Guidance on provider-initiated HIV testing and counselling in health
facilities, WHO, Geneva. Available at http://www.who.int/hiv
52
WHO and UNAIDS (2004). Guidance on ethics and equitable access to HIV treatment and care,
WHO, Geneva.
53
See UNFPA/UNHCR (2008) Belgrade Call to Action on HIV displaced populations and sex work.
54
It is estimated that less than one in 20 men who have sex with men have access to the HIV
prevention, treatment and care services they need - UNAIDS (2006) Report on the global AIDS
epidemic. UNAIDS Geneva.
55
Acceptance or societal, rejection of transgender people is culturally constructed.
56
CRC Committee General Comment, No 3 (2003) on HIV/AIDS and the rights of the Child.
57
HIV can only be transmitted through exchange of bodily fluids, blood and blood products, not
through normal social life.
58
UNHCR/WHO/UNAIDS (2008) Policy Statement on HIV Testing and Counselling for refugees,
IDPs and other persons of concern to UNHCR, UNHCR, Geneva.
59
WHO/UNICEF (in press) Strengthening the Health Sector Response to Care, Support,
Treatment and Prevention for Young people Living with HIV/AIDS, Report of a WHO/UNICEF
global consultation, 2006, WHO, Geneva.
WHO (2006) Guidelines on co-trimoxazole prophylaxis for HIV-related infections among
children, adolescents and adults: Recommendations for a public health approach. WHO,
Geneva.
WHO (2006) Anti-retroviral therapy for HIV infection in adults and adolescents: towards
universal access
Recommendations for a public health approach. WHO, Geneva.
Training materials are currently under development to assist health care providers respond to
the specific needs of young people (WHO Optional Adolescent Module for national IMAI/ART
training programmes)
60
See UNFPA/UNHCR (2008) Belgrade Call to Action on HIV displaced populations and sex work.
61
ibid.
44
Draft June 2008
Hilary Homans
27