At the just concluded project organised by the New HIV Vaccine and
Microbicides Advocacy Society (NHVMAS) in collaboration with The
Initiative for Equal Rights (TIER), Christ against Drug Abuse Ministry
(CADAM), Safehaven Development Initiative and International Rectal
Microbicides Advocacy (IRMA) Nigeria, and with funding support from
Sidaction, France, participants specifically requested that the
outcome of the meeting should be widely.

The meeting conveyed members of the community resident in Lagos,Ilesa,
Osogbo, Ife, Ifon in Ogin State, Ibarapa in Ibadan, Jos and members of
vulnerable communities (FSWs,MSM, IDUs, PLHIV) to discuss about
research and how to improve research conducts within these
communities. Also, two  roundtable dialogues that facilitated
discussions between research stakeholders (researchers, bioethicists,
research sponsors, policy makers, journalists, and community members)
were conveyed in June and September 2012 in Lagos and Abuja
respectively also.

The following were the objectives of the meeting:
(i) to identify priorities considerations by research communities when
HIV research is conducted in their community
(ii) identify considerations that should be of concern to ethics
committees during protocol review
(iii) identify measures to take to empower communities to become more
directly engaged with HIV treatment and prevention research conducted
within their communities.

The community made several observations with respect to informed
consent process, community engagement in research and standard of care
in research. Please find attached the summary of the outcome of the
meetings. Some of the findings and recommendations are enumerated

1.0 Informed consent and other ethical considerations in research
•      Ethics committees do not provide proper oversight function for
the researches they approve.
•      Negotiation of research reimbursements often takes place at
the time of research implementation.
•      Poor information dissemination about the research to the
research community and individuals involved with a research.

2.0. Community engagement in research
•      There is little research literacy efforts on the field.
Communities therefore only respond to what researchers share with
•      CSO engagement is often mistaken for community engagement.
•      Ethics committees do not monitor researches they approve to
ensure that community engagement happens in the field.

3.0.    Concern on standard of care
•      Some research participants in hospital based research are made
to bear the cost of research related investigations.
•      Study participants may be asked to defray the cost of
managingchronic illnesses that develop during the course of
researches with long duration the onset of which researchers consider
not to study related.

4.0.    Other concerns
•      There is minimal government investment in HIV research
conducted in Nigeria.
•      A number of HIV researches are repeated due to poor
coordination of the field.
•      Often, researches do not inform intervention and policy formulation

• Informed consent form should be available in local languages for
easy understanding. Verbal translation of English to local language is
not acceptable.

• Ethics committees should monitor all the researches they approve
including monitoring of the informed consent process. The community
considers it unethical not to do so. The current level of research
monitoring is extremely low and very unacceptable. This gives room for
research participants’ abuse. Unfortunately the vulnerable – including
those that do not understand their rights when it comes to research –
are preys to multiple unethical practices including paying for
research related investigations in disguise for treatment.

• Community engagement should happen throughout the lifecycle of
research – from the design to the dissemination stage in line with the
requirements of national ethics code and national HIV research policy.

• NGOs need to be funded to actively support community research
literacy so as to promote informed community engagement with research.
Researchers are encouraged to engage CSOs in all community based
research as community educators. This would encourage mutual trust for
the research and sustained community education on the subject matter
even after the project is concluded.

• CSO engagement should not be considered as community engagement.
Researchers should work with CSO as gatekeepers only: discussion and
recruitment of research participants should be done directly from the
community after duly providing information to the community.

• All research should make effort to promote research literacy. Ethics
committees should see that the information sheet for all the research
they approve should have an educational component. This way, at the
minimum, research participants get to learn something about the
research subject.

• The  standard of care package for research participants should align
with global standards.

• Researchers should make significant efforts to facilitate mechanisms
that will increase the translation of their research findings to
policies and programmes.