It must have been difficult to work with a tribal community as Mr Rajan
Patil has. The questions he asks are valid and tricky to resolve or reach a
consensus on. The researcher's willingness to speak on these problems in the
public domain must be appreciated; such dilemmas are often not even acknowledged
publicly, let alone discussions being generated around them. However, the
presentation also indicates that steps could have been taken to make this
research ethically more sound. The following issues emerge.
Adequacy of information
Were research participants provided with
essential and adequate information? The account indicates that the informed
consent form had information on the purpose of the study and possible risks
involved. However, it is not clear whether other important information was
communicated to prospective research participants to facilitate their
decision-making. These include: the number of blood samples to be taken; who
would have access to the samples; for how long the samples would be preserved;
whether the samples would be used for future research; disposal of the samples,
possible benefits of participating other than treatment and, the most important,
their right to withdraw or decline to participate.
Community consent
Can community leaders' consent substitute for that of
individual research participants? In traditional tribal communities, community
leaders, who are selected by community members, are expected to hold that
position with the prime aim of serving their community. The relationship between
the community leader and members, ideally speaking, is that of mutual trust.
However, it could become paternalistic and authoritarian. Thus, it can be
disastrous to make general assumptions about community leadership. Any
researcher working with communities, tribal or rural, must understand the social
organisation of the community before even planning the research.
At different levels, non-formal (traditional) or formal community leaders,
family elders, husbands and mothers-in-law can all be gatekeepers, whom
researchers must approach before seeking access to individual married woman. The
challenge is to be respectful to the community culture and any other protocols,
without violating principles of research ethics. Thus, while there are
guidelines, there are no set procedures for facilitating the informed
decision-making process. Individual researchers and research teams must develop
situation-specific strategies, which ensure compliance with ethical guidelines
in their spirit. Often, there are no clear solutions to ethical dilemmas and
there can be multiple perspectives. What is needed is sound ethical
reasoning.
In this case, the researcher felt the need to comply
with cultural practices and the ethics advisors insisted on compliance with
ethical guidelines. The problem was resolved without a critical look at either
cultural or ethical norms, and without a creative operationalising of the
ethical guidelines. The fact that research participants offered their written
consent demonstrates that the researchers' initial thinking was unjustified.
The article also raises some other issues. For example, the procedure and
interview were conducted in public spaces. This raises questions about the need
to maintain privacy.
Service provision and inducement
By providing health services to both
participants and non-participants, the researcher abided by the ethical
principle of justice. Providing health services to research participants does
not amount to inducement, and since this service was not a pre-condition for
participating in the study, it therefore does not amount to violating autonomous
voluntary participation.
It might be helpful to remember that conceptualising research designs and
methods of facilitating individuals' decision-making requires an understanding
of the community, its social organisation and the local dynamics. Second,
gatekeepers' approval must not be considered equivalent to the consent of
prospective individual research participants. Finally, shortage of time in
field-based research cannot be a justification for short-cuts, especially in
seeking informed consent and other aspects of the ethical conduct of research.
Shelley Saha, Centre for Enquiry into Health and Allied Themes, Flat No 3 and 4,
Plot No 140, Aman Terrace (E), Dahanukar Colony, Kothrud, Pune 411029, India.
e-mail:
sahashelley@rediffmail.com