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Sunday, August 25, 2013

Essay on Ethical Riddles in HIV Research



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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