Page 52 - Ethical Guidelines for Conducting Research Studies Involving Human Subjects

It is not always possible to know what will happen to the participants as
unexpected results or undesirable events can sometimes occur. Very often
the benefits and risks of the research pertain not only to the individual
participants, but also the community from which they are drawn. The
benefits if any could be shared in a reasonable or workable manner.

11.5 Community Participation

A community can be defined as a group of people sharing the same
location, beliefs, culture, ideals, goals, age, gender, profession, lifestyle,
common interests, geographical locations or settings or disease. When
research participants are drawn from a specific community, members of
that community can be involved to discuss any concerns it may have
regarding the research. In different ways such a dialogue can be
facilitated. If an ethics committee does not have a member from the
community, it may ask a local community representative to be the voice for
all participants. On the other hand, community representatives can
formally join together to form a group termed as Community Advisory
Board, Community Working Group, or Community Advisory Group, which
takes part in the research at all stages of the study. In international
studies, particularly on issues involving communities, representation from
this body ensures that the community’s health needs and expectations are
addressed, informed consent is appropriate, and access to research benefits
is provided through research that is designed and implemented in the best
interests of science and community.

BMRC ETHICAL GUIDELINE ON HUMAN SUBJECTS Page 48