Essay on Ethical
riddles in HIV research
Clinical
trials in search of a cure for a certain disease have great and noble motives
which include the betterment of humanity.
For example, HIV clinical trials are being done in a lot of developing
countries especially in the Sub-Saharan region in order to better understand the
mechanism of the virus and identify new ways to cure it. In spite of the
authentic motives behind these clinical trials which are to find ways to cure
this resistant virus, questions regarding their ethical aspects are being
discussed. How do researchers and clinicians
look for the cure of HIV in the most ethical way possible? How would they pursue
looking for that cure which will
benefit the greater public without taking advantage to the participants or to
those who are most affected by the disease?
In
the talk of Boghuma Kabisen Titanji on TED filmed at theTEDxGoodenoughCollege on
May 2012, she talked about the main issues on the Ethical Riddles in HIV
research. In the first part of her talk, she shared her experience of
meeting a woman named Celine, a research subject in one of the HIV research
subjects in the rural district of Cameron. She met her at the time the research
was already completed. Titanji then found out that after
the completion of the research, Celine was no longer taking any medication for
her disease since she can’t afford the bus fares to go to the nearest local
clinic. She also can’t walk to go to the clinic since she has a poor health.
Titanji was then more surprised to know that
Celine took part on the study and was given informed consent but is
unable to remember the nature and the purpose of the research, the names of the
drugs involved ad the outcomes of the study. After pointing out that this
seemed to be another incidence where a patient from a developing country was
taken advantage for the sake of research, she then addressed the ethical issues
that needed to be considered when doing a clinical research in a developing
country.
The
first point of ethical issues that she discussed was that of the informed
consent. According to Titanji, the informed consent should be in a form and in
a language where the local participants can understand it and thoroughly
comprehend it. Content procedures used in developing countries should be
different from that of the developed ones. In illiterate participants like
Celine, the purpose, nature and extent of the research and other relevant
information should be explained in a way that they can understand it and freely
consent to participate in it. Furthermore, Titanji added hat local communities
need to participate more in establishing the criteria for recruiting
participants as well as the incentives in participation. The second point she
talked about was that of the standard of care provided to the participants in a
trial. She said that it is very important to decide what the appropriate
treatment for the control group beforehand. She posed a question whether the
participants should be given the best current treatment available anywhere in
the world but is not easily accessible and affordable to the participants once
the study ended or should they be given the best alternative treatment
available and affordable in that country. She also emphasized that it is very
important to assess the potential risks and benefits of the standard of care
which is to be provided to participants in any clinical trial. It is also
equally important to establish a standard of care that is relevant to the study
and most beneficial for the participants. The third point that she discussed
was that that of the need for rigorous ethical reviews. Ethical reviews are
very important for the safety of the participants in a clinical trial. She
addressed the need for the local government and the local communities to be
more involved in reviewing ethical issues for the clinical trials being
authorized in developing countries. These rigorous ethical reviews can be done
through setting up review committees independent of the research sponsors or
the government. Lastly, the final point she addressed was that of the need for
a clear plan after the clinical research ends. She noted that researchers
should consider introducing beneficial interventions to the trial population
once the study completed. The possible interventions should also be available to
the wider community , if not the researchers should justify the need for their
study.
Overall,
these ethical considerations are very important and necessary to every research
or clinical trial being conducted. The researchers should be concerned for the
welfare of their participants and not just solely think about what they can
gain in the study. As Titanji puts it, every researcher needs to hold the
highest moral conscience to remain ethical in their research and not compromise
the welfare of others in search for finding answers. Clinical trials in finding
cure for HIV are indeed needed because they are the ways in which we can find
new or better treatment for this resistant virus. These clinical trials may
offer a lot of promising medicines for those suffering from HIV in developed
countries but these trials should also serve the welfare of those participants
used in the study by looking after their follow-up care and making beneficial
interventions for the whole population.
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