Câu đố đạo đức trong NGHIÊN cứu HIV-Boghuma Kabisen Titanji

Ethical riddles in HIV research - Boghuma Kabisen Titanji
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Ethical riddles in HIV research - Boghuma Kabisen Titanji

 


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I'd<00:00:17.400> like<00:00:17.560> to<00:00:17.720> share<00:00:18.080> with<00:00:18.240> you<00:00:19.000> the<00:00:19.199> story<00:00:19.520> of
I'd like to share with you the story of I'd like to share with you the story of one<00:00:19.840> of<00:00:20.000> my<00:00:20.279> patients<00:00:20.960> called<00:00:21.720> Seline<00:00:22.720> Seline one of my patients called Seline Seline one of my patients called Seline Seline is<00:00:23.279> a<00:00:23.680> housewife<00:00:24.680> and<00:00:24.840> lives<00:00:25.080> in<00:00:25.199> a<00:00:25.359> rural is a housewife and lives in a rural is a housewife and lives in a rural District<00:00:26.119> of<00:00:26.320> Cameroon<00:00:26.880> in<00:00:27.039> West<00:00:27.279> Central District of Cameroon in West Central District of Cameroon in West Central Africa<00:00:29.160> 6<00:00:29.480> years<00:00:29.720> ago<00:00:30.160> at<00:00:30.279> the<00:00:30.439> time<00:00:30.599> of<00:00:30.720> her Africa 6 years ago at the time of her Africa 6 years ago at the time of her HIV<00:00:31.759> diagnosis<00:00:32.759> she<00:00:32.920> was<00:00:33.120> recruited<00:00:33.680> to HIV diagnosis she was recruited to HIV diagnosis she was recruited to participate<00:00:34.520> in<00:00:34.640> a<00:00:34.800> clinical<00:00:35.239> trial<00:00:35.719> which participate in a clinical trial which participate in a clinical trial which was<00:00:36.000> running<00:00:36.280> in<00:00:36.440> her<00:00:36.640> health<00:00:36.920> district<00:00:37.360> at was running in her health district at was running in her health district at the<00:00:38.160> time<00:00:39.160> when<00:00:39.320> I<00:00:39.520> first<00:00:39.840> met<00:00:40.120> Seline<00:00:40.600> a the time when I first met Seline a the time when I first met Seline a little<00:00:40.960> over<00:00:41.160> a<00:00:41.320> year<00:00:41.559> ago<00:00:42.440> she<00:00:42.600> had<00:00:42.760> gone<00:00:42.960> for little over a year ago she had gone for little over a year ago she had gone for 18<00:00:43.719> months<00:00:44.160> without<00:00:44.440> any<00:00:44.640> anti-r<00:00:45.239> viral 18 months without any anti-r viral 18 months without any anti-r viral therapy<00:00:46.719> and<00:00:46.879> she<00:00:47.079> was<00:00:47.360> very<00:00:48.000> ill<00:00:49.000> she<00:00:49.199> told<00:00:49.520> me therapy and she was very ill she told me therapy and she was very ill she told me that<00:00:49.960> she<00:00:50.120> stopped<00:00:50.480> coming<00:00:50.719> to<00:00:50.920> the<00:00:51.079> clinic that she stopped coming to the clinic that she stopped coming to the clinic when<00:00:51.840> the<00:00:51.960> trial<00:00:52.320> ended<00:00:53.199> because<00:00:53.480> she<00:00:53.640> had<00:00:53.800> no when the trial ended because she had no when the trial ended because she had no money<00:00:54.239> for<00:00:54.399> the<00:00:54.559> bus<00:00:54.800> fair<00:00:55.719> and<00:00:55.840> was<00:00:56.039> too<00:00:56.239> ill money for the bus fair and was too ill money for the bus fair and was too ill to<00:00:56.680> walk<00:00:56.960> the<00:00:57.120> 35<00:00:57.680> km<00:00:58.640> distance<00:00:59.640> now<00:00:59.920> now to walk the 35 km distance now now to walk the 35 km distance now now during<00:01:00.280> the<00:01:00.440> clinical<00:01:00.920> trial<00:01:01.359> she<00:01:01.480> had<00:01:01.640> been during the clinical trial she had been during the clinical trial she had been given<00:01:02.480> all<00:01:02.800> her<00:01:03.000> anti-retroviral<00:01:03.519> drugs<00:01:04.280> free given all her anti-retroviral drugs free given all her anti-retroviral drugs free of<00:01:04.760> charge<00:01:05.640> and<00:01:05.799> her<00:01:05.960> Transportation<00:01:06.880> cost of charge and her Transportation cost of charge and her Transportation cost had<00:01:07.680> been<00:01:07.920> covered<00:01:08.240> by<00:01:08.400> the<00:01:08.520> research<00:01:09.280> funds had been covered by the research funds had been covered by the research funds all<00:01:10.439> of<00:01:10.640> these<00:01:10.920> ended<00:01:11.400> once<00:01:11.640> the<00:01:11.759> trial<00:01:12.119> was all of these ended once the trial was all of these ended once the trial was completed<00:01:13.479> leaving<00:01:13.840> Seline<00:01:14.400> with<00:01:14.600> no completed leaving Seline with no completed leaving Seline with no Alternatives<00:01:16.720> she<00:01:16.880> was<00:01:17.080> unable<00:01:17.520> to<00:01:17.720> tell<00:01:17.920> me Alternatives she was unable to tell me Alternatives she was unable to tell me the<00:01:18.360> names<00:01:18.680> of<00:01:18.840> the<00:01:18.960> drugs<00:01:19.280> she<00:01:19.439> had<00:01:19.759> received the names of the drugs she had received the names of the drugs she had received during<00:01:20.200> the<00:01:20.360> trial<00:01:21.119> or<00:01:21.320> even<00:01:21.640> what<00:01:21.840> the<00:01:21.960> trial during the trial or even what the trial during the trial or even what the trial had<00:01:22.479> been<00:01:23.040> about<00:01:24.040> I<00:01:24.119> didn't<00:01:24.400> bother<00:01:24.720> to<00:01:24.960> ask had been about I didn't bother to ask had been about I didn't bother to ask her<00:01:25.680> what<00:01:25.840> the<00:01:26.000> results<00:01:26.400> of<00:01:26.520> the<00:01:26.640> trial<00:01:27.000> were her what the results of the trial were her what the results of the trial were because<00:01:28.240> it<00:01:28.400> seemed<00:01:28.840> obvious<00:01:29.159> to<00:01:29.320> me<00:01:29.680> that because it seemed obvious to me that because it seemed obvious to me that that<00:01:30.040> she<00:01:30.159> would<00:01:30.400> have<00:01:30.600> no<00:01:31.159> clue<00:01:32.159> yet<00:01:32.479> what that she would have no clue yet what that she would have no clue yet what puzzled<00:01:33.200> me<00:01:33.479> most<00:01:34.439> was<00:01:34.640> Seline<00:01:35.159> had<00:01:35.320> given<00:01:35.560> her puzzled me most was Seline had given her puzzled me most was Seline had given her informed<00:01:36.479> consent<00:01:37.399> to<00:01:37.560> be<00:01:37.720> a<00:01:37.920> part<00:01:38.119> of<00:01:38.280> this informed consent to be a part of this informed consent to be a part of this trial<00:01:39.520> yet<00:01:39.720> she<00:01:39.960> clearly<00:01:40.360> did<00:01:40.560> not<00:01:41.119> understand trial yet she clearly did not understand trial yet she clearly did not understand the<00:01:41.600> implications<00:01:42.280> of<00:01:42.479> being<00:01:42.680> a<00:01:42.960> participant the implications of being a participant the implications of being a participant or<00:01:44.200> what<00:01:44.360> would<00:01:44.640> happen<00:01:44.920> to<00:01:45.119> her<00:01:45.680> once<00:01:45.960> the or what would happen to her once the or what would happen to her once the trial<00:01:46.479> had<00:01:46.600> been<00:01:47.320> completed<00:01:48.320> now<00:01:48.560> I<00:01:48.680> have trial had been completed now I have trial had been completed now I have shared<00:01:49.200> this<00:01:49.360> story<00:01:49.799> with<00:01:49.960> you<00:01:50.320> as<00:01:50.439> an<00:01:50.680> example shared this story with you as an example shared this story with you as an example of<00:01:51.840> what<00:01:52.000> can<00:01:52.280> happen<00:01:52.520> to<00:01:52.759> participants<00:01:53.280> in of what can happen to participants in of what can happen to participants in the<00:01:53.520> clinical<00:01:53.960> trial<00:01:54.680> when<00:01:54.840> it<00:01:54.960> is<00:01:55.159> poorly the clinical trial when it is poorly the clinical trial when it is poorly conducted<00:01:57.119> maybe<00:01:57.560> this<00:01:57.799> particular<00:01:58.280> trial conducted maybe this particular trial conducted maybe this particular trial yielded<00:01:59.079> exciting<00:01:59.520> results<00:01:59.840> results<00:02:00.759> maybe yielded exciting results results maybe yielded exciting results results maybe it<00:02:01.119> even<00:02:01.320> got<00:02:01.600> published<00:02:01.960> in<00:02:02.079> a<00:02:02.240> high-profile it even got published in a high-profile it even got published in a high-profile scientific<00:02:03.680> journal<00:02:04.680> maybe<00:02:04.920> it<00:02:05.039> would<00:02:05.240> inform scientific journal maybe it would inform scientific journal maybe it would inform clinicians<00:02:06.360> around<00:02:06.680> the<00:02:06.840> world<00:02:07.479> on<00:02:07.640> how<00:02:07.880> to clinicians around the world on how to clinicians around the world on how to improve<00:02:08.360> on<00:02:08.520> the<00:02:08.640> HIV<00:02:09.479> on<00:02:09.640> the<00:02:09.840> on<00:02:09.959> the improve on the HIV on the on the improve on the HIV on the on the clinical<00:02:10.479> management<00:02:10.959> of<00:02:11.160> HIV<00:02:11.959> patients<00:02:12.959> but clinical management of HIV patients but clinical management of HIV patients but it<00:02:13.239> would<00:02:13.400> have<00:02:13.599> done<00:02:13.879> so<00:02:14.239> at<00:02:14.400> a<00:02:14.640> price<00:02:15.400> to it would have done so at a price to it would have done so at a price to hundreds<00:02:16.120> of<00:02:16.400> patients<00:02:17.239> who<00:02:17.440> like<00:02:17.680> Seline hundreds of patients who like Seline hundreds of patients who like Seline were<00:02:18.920> left<00:02:19.120> to<00:02:19.280> their<00:02:19.440> own<00:02:19.800> devices<00:02:20.800> once<00:02:21.120> the were left to their own devices once the were left to their own devices once the research<00:02:21.760> had<00:02:21.920> been<00:02:22.800> completed<00:02:23.800> I<00:02:23.920> do<00:02:24.080> not research had been completed I do not research had been completed I do not stand<00:02:24.720> here<00:02:24.920> today<00:02:25.480> to<00:02:25.720> suggest<00:02:26.160> in<00:02:26.360> any<00:02:26.640> way stand here today to suggest in any way stand here today to suggest in any way that<00:02:27.519> conducting<00:02:28.040> HIV<00:02:28.560> clinical<00:02:28.959> trials<00:02:29.280> in that conducting HIV clinical trials in that conducting HIV clinical trials in development<00:02:29.959> in<00:02:30.080> countries<00:02:30.440> is<00:02:30.800> bad<00:02:31.800> on<00:02:31.959> the development in countries is bad on the development in countries is bad on the contrary<00:02:32.800> clinical<00:02:33.239> trials<00:02:33.680> are<00:02:33.920> extremely contrary clinical trials are extremely contrary clinical trials are extremely useful<00:02:34.959> tools<00:02:35.879> and<00:02:36.000> are<00:02:36.200> much<00:02:36.519> needed<00:02:36.959> to useful tools and are much needed to useful tools and are much needed to address<00:02:37.440> the<00:02:37.560> burden<00:02:37.959> of<00:02:38.160> disease<00:02:38.560> in address the burden of disease in address the burden of disease in developing<00:02:39.800> countries<00:02:40.800> however<00:02:41.280> the developing countries however the developing countries however the inequalities<00:02:42.360> that<00:02:42.599> exist<00:02:43.159> between<00:02:43.879> richer inequalities that exist between richer inequalities that exist between richer countries<00:02:44.840> and<00:02:45.040> developing<00:02:45.480> countries<00:02:45.879> in countries and developing countries in countries and developing countries in terms<00:02:46.280> of<00:02:46.519> funding<00:02:47.519> pose<00:02:47.879> a<00:02:48.040> real<00:02:48.360> risk<00:02:48.760> for terms of funding pose a real risk for terms of funding pose a real risk for exploitation<00:02:50.440> especially<00:02:50.920> in<00:02:51.040> a<00:02:51.239> context<00:02:51.680> of exploitation especially in a context of exploitation especially in a context of externally<00:02:52.440> funded externally funded externally funded research<00:02:54.560> sadly<00:02:55.040> enough<00:02:55.400> the<00:02:55.560> fact<00:02:56.000> remains research sadly enough the fact remains research sadly enough the fact remains that<00:02:57.000> a<00:02:57.120> lot<00:02:57.280> of<00:02:57.440> the<00:02:57.680> studies<00:02:58.120> that<00:02:58.239> are that a lot of the studies that are that a lot of the studies that are conducted<00:02:59.319> in<00:02:59.480> Dev<00:02:59.720> developing<00:03:00.200> countries conducted in Dev developing countries conducted in Dev developing countries could<00:03:01.040> never<00:03:01.360> be<00:03:01.519> authorized<00:03:02.400> in<00:03:02.560> the<00:03:02.680> Richer could never be authorized in the Richer could never be authorized in the Richer countries<00:03:03.560> which<00:03:03.720> fund<00:03:04.040> the<00:03:04.560> research<00:03:05.560> I'm countries which fund the research I'm countries which fund the research I'm sure<00:03:06.040> you<00:03:06.159> must<00:03:06.400> be<00:03:06.640> asking<00:03:07.040> yourselves<00:03:08.040> what sure you must be asking yourselves what sure you must be asking yourselves what makes<00:03:08.560> developing<00:03:09.159> countries<00:03:09.680> especially makes developing countries especially makes developing countries especially those<00:03:10.440> in<00:03:10.680> subsaharan<00:03:11.480> Africa<00:03:12.400> so<00:03:12.760> attractive those in subsaharan Africa so attractive those in subsaharan Africa so attractive for<00:03:13.560> these<00:03:13.760> HIV<00:03:14.280> clinical<00:03:15.120> trials<00:03:16.120> well<00:03:16.440> in for these HIV clinical trials well in for these HIV clinical trials well in order<00:03:17.000> for<00:03:17.159> a<00:03:17.319> clinical<00:03:17.720> trial<00:03:18.159> to<00:03:18.799> generate order for a clinical trial to generate order for a clinical trial to generate valid<00:03:20.000> and<00:03:20.239> widely<00:03:20.680> applicable<00:03:21.360> results<00:03:22.360> they valid and widely applicable results they valid and widely applicable results they need<00:03:22.720> to<00:03:22.879> be<00:03:23.040> conducted<00:03:23.720> with<00:03:23.959> large<00:03:24.360> numbers need to be conducted with large numbers need to be conducted with large numbers of<00:03:24.879> study<00:03:25.560> participants<00:03:26.560> and<00:03:26.920> preferably<00:03:27.920> on of study participants and preferably on of study participants and preferably on a<00:03:28.280> population<00:03:28.799> with<00:03:28.959> a<00:03:29.080> high<00:03:29.280> in a population with a high in a population with a high in of<00:03:30.439> new<00:03:30.680> HIV of new HIV of new HIV infections<00:03:32.959> subsaharan<00:03:33.760> Africa<00:03:34.159> largely infections subsaharan Africa largely infections subsaharan Africa largely fits<00:03:34.959> this<00:03:35.319> description<00:03:36.319> with<00:03:36.560> 22<00:03:37.080> million fits this description with 22 million fits this description with 22 million people<00:03:37.879> living<00:03:38.159> with<00:03:38.400> HIV<00:03:39.400> and<00:03:39.640> estimated<00:03:40.640> 70% people living with HIV and estimated 70% people living with HIV and estimated 70% of<00:03:41.799> the<00:03:41.959> 30<00:03:42.280> million<00:03:42.720> people<00:03:43.080> who<00:03:43.200> are of the 30 million people who are of the 30 million people who are infected infected infected worldwide<00:03:45.599> also<00:03:46.120> research<00:03:46.640> within<00:03:46.920> the worldwide also research within the worldwide also research within the continent<00:03:48.120> is<00:03:48.280> a<00:03:48.439> lot<00:03:48.720> easier<00:03:49.120> to<00:03:49.319> conduct<00:03:49.920> due continent is a lot easier to conduct due continent is a lot easier to conduct due to<00:03:50.400> widespread<00:03:51.080> poverty<00:03:52.079> endemic<00:03:52.599> diseases to widespread poverty endemic diseases to widespread poverty endemic diseases and<00:03:53.799> inadequate<00:03:54.400> Health<00:03:54.680> Care<00:03:55.040> Systems<00:03:56.040> a and inadequate Health Care Systems a and inadequate Health Care Systems a clinical<00:03:56.680> trial<00:03:57.200> that<00:03:57.319> is<00:03:57.879> considered<00:03:58.400> to<00:03:58.519> be clinical trial that is considered to be clinical trial that is considered to be potentially<00:03:59.360> benefit<00:03:59.640> beneficial<00:04:00.079> to<00:04:00.239> the potentially benefit beneficial to the potentially benefit beneficial to the population<00:04:01.560> is<00:04:01.760> more<00:04:02.040> likely<00:04:02.400> to<00:04:02.560> be population is more likely to be population is more likely to be authorized<00:04:03.920> and<00:04:04.079> in<00:04:04.200> the<00:04:04.400> absence<00:04:04.760> of<00:04:04.959> Good authorized and in the absence of Good authorized and in the absence of Good Health<00:04:05.560> Care<00:04:05.760> Systems<00:04:06.760> almost<00:04:07.319> any<00:04:07.720> offer<00:04:08.120> of Health Care Systems almost any offer of Health Care Systems almost any offer of medical<00:04:08.799> assistance<00:04:09.799> is<00:04:10.040> accepted<00:04:10.480> as<00:04:10.680> better medical assistance is accepted as better medical assistance is accepted as better than<00:04:11.400> nothing<00:04:12.400> even<00:04:12.720> more<00:04:13.159> problematic than nothing even more problematic than nothing even more problematic reasons<00:04:14.480> include<00:04:15.200> lower<00:04:15.640> risk<00:04:15.920> of<00:04:16.359> litigation reasons include lower risk of litigation reasons include lower risk of litigation less<00:04:17.680> rigorous<00:04:18.280> ethical<00:04:18.840> reviews<00:04:19.840> and less rigorous ethical reviews and less rigorous ethical reviews and populations<00:04:20.919> that<00:04:21.079> are<00:04:21.239> willing<00:04:21.560> to populations that are willing to populations that are willing to participate<00:04:22.520> in<00:04:22.880> almost<00:04:23.360> any<00:04:23.759> study<00:04:24.560> that participate in almost any study that participate in almost any study that hints<00:04:25.440> at<00:04:25.560> a hints at a hints at a cure<00:04:27.680> as<00:04:28.680> funding<00:04:29.160> for<00:04:29.680> HIV<00:04:30.199> research cure as funding for HIV research cure as funding for HIV research increases<00:04:31.280> in<00:04:31.479> developing<00:04:32.039> countries<00:04:32.800> and increases in developing countries and increases in developing countries and ethical<00:04:33.520> review<00:04:34.080> in<00:04:34.280> richer<00:04:34.680> countries ethical review in richer countries ethical review in richer countries become<00:04:35.520> more<00:04:35.840> strict<00:04:36.720> you<00:04:36.880> can<00:04:37.039> see<00:04:37.320> why<00:04:37.600> this become more strict you can see why this become more strict you can see why this context<00:04:38.440> becomes<00:04:39.400> very<00:04:39.720> very<00:04:40.360> attractive<00:04:41.360> the context becomes very very attractive the context becomes very very attractive the high<00:04:41.840> prevalence<00:04:42.320> of<00:04:42.600> HIV<00:04:43.600> drives high prevalence of HIV drives high prevalence of HIV drives researchers<00:04:45.680> to<00:04:45.880> conduct<00:04:46.360> research<00:04:46.919> that<00:04:47.039> is researchers to conduct research that is researchers to conduct research that is sometimes<00:04:47.960> scientifically<00:04:48.919> acceptable<00:04:49.560> but sometimes scientifically acceptable but sometimes scientifically acceptable but on<00:04:49.880> many<00:04:50.160> levels<00:04:51.000> ethically on many levels ethically on many levels ethically questionable<00:04:53.080> how<00:04:53.360> then<00:04:53.639> can<00:04:53.840> we<00:04:54.080> ensure<00:04:54.479> that questionable how then can we ensure that questionable how then can we ensure that in<00:04:54.759> our<00:04:54.960> search<00:04:55.280> for<00:04:55.440> the<00:04:55.639> Cure<00:04:56.440> we<00:04:56.600> do<00:04:56.759> not in our search for the Cure we do not in our search for the Cure we do not take<00:04:57.199> an<00:04:57.400> unfair<00:04:57.880> advantage<00:04:58.880> of<00:04:59.120> those<00:04:59.320> who take an unfair advantage of those who take an unfair advantage of those who are<00:04:59.680> already<00:05:00.000> most<00:05:00.360> affected<00:05:00.840> by<00:05:01.000> the are already most affected by the are already most affected by the pandemic<00:05:02.440> I<00:05:02.600> invite<00:05:03.000> you<00:05:03.199> to<00:05:03.440> consider<00:05:03.840> four pandemic I invite you to consider four pandemic I invite you to consider four areas<00:05:04.639> I<00:05:04.759> think<00:05:04.960> we<00:05:05.080> can<00:05:05.320> focus<00:05:05.720> on<00:05:06.360> in<00:05:06.520> order areas I think we can focus on in order areas I think we can focus on in order to<00:05:06.960> improve<00:05:07.360> the<00:05:07.560> way<00:05:07.759> in<00:05:07.880> which<00:05:08.160> things<00:05:08.360> are to improve the way in which things are to improve the way in which things are done<00:05:09.880> the<00:05:10.039> first<00:05:10.280> of<00:05:10.479> these<00:05:10.720> is<00:05:10.919> informed done the first of these is informed done the first of these is informed consent<00:05:12.600> now<00:05:12.840> in<00:05:13.000> order<00:05:13.320> for<00:05:13.479> a<00:05:13.600> clinical consent now in order for a clinical consent now in order for a clinical trial<00:05:14.479> to<00:05:14.639> be<00:05:15.400> ethically<00:05:16.400> considered trial to be ethically considered trial to be ethically considered ethically<00:05:17.520> acceptable<00:05:18.520> participants<00:05:19.160> must ethically acceptable participants must ethically acceptable participants must be<00:05:19.520> given<00:05:19.759> the<00:05:19.919> relevant<00:05:20.479> information<00:05:21.479> in<00:05:21.600> a be given the relevant information in a be given the relevant information in a way<00:05:21.960> in<00:05:22.080> which<00:05:22.319> they<00:05:22.440> can<00:05:23.000> understand<00:05:23.800> and way in which they can understand and way in which they can understand and must<00:05:24.199> freely<00:05:24.800> consent<00:05:25.319> to<00:05:25.639> participate<00:05:26.639> in must freely consent to participate in must freely consent to participate in the<00:05:26.960> trial<00:05:27.800> this<00:05:27.919> is<00:05:28.199> especially<00:05:28.919> important the trial this is especially important the trial this is especially important in<00:05:29.720> developing<00:05:30.240> countries<00:05:31.120> where<00:05:31.360> a<00:05:31.479> lot<00:05:31.639> of in developing countries where a lot of in developing countries where a lot of participants<00:05:32.479> consent<00:05:32.880> to<00:05:33.080> research<00:05:34.080> because participants consent to research because participants consent to research because they<00:05:34.560> believe<00:05:34.960> it<00:05:35.080> is<00:05:35.240> the<00:05:35.400> only<00:05:35.720> way<00:05:35.880> in<00:05:36.039> which they believe it is the only way in which they believe it is the only way in which they<00:05:36.400> can<00:05:36.560> receive<00:05:36.919> medical<00:05:37.319> care<00:05:38.039> or<00:05:38.280> other they can receive medical care or other they can receive medical care or other benefits<00:05:39.919> consent<00:05:40.440> procedures<00:05:41.000> that<00:05:41.120> are benefits consent procedures that are benefits consent procedures that are used<00:05:41.639> in<00:05:41.800> richer<00:05:42.240> countries<00:05:43.080> are<00:05:43.319> often used in richer countries are often used in richer countries are often inappropriate<00:05:44.600> or<00:05:44.840> ineffective<00:05:45.800> in<00:05:45.960> a<00:05:46.080> lot<00:05:46.199> of inappropriate or ineffective in a lot of inappropriate or ineffective in a lot of developing<00:05:47.039> countries<00:05:48.039> for<00:05:48.280> example<00:05:48.800> it<00:05:48.960> is developing countries for example it is developing countries for example it is counterintuitive<00:05:50.319> to<00:05:50.600> have<00:05:51.199> an<00:05:51.360> illiterate counterintuitive to have an illiterate counterintuitive to have an illiterate study<00:05:52.240> participant<00:05:52.840> like<00:05:53.039> Seline<00:05:53.960> sign<00:05:54.240> a study participant like Seline sign a study participant like Seline sign a lengthy<00:05:54.919> consent<00:05:55.319> form<00:05:55.680> that<00:05:55.800> they<00:05:55.919> are lengthy consent form that they are lengthy consent form that they are unable<00:05:56.400> to<00:05:56.600> read<00:05:57.280> let<00:05:57.479> alone<00:05:58.479> understand unable to read let alone understand unable to read let alone understand local<00:05:59.880> communities<00:06:00.560> need<00:06:00.800> to<00:06:00.919> be<00:06:01.120> more local communities need to be more local communities need to be more involved<00:06:02.400> in<00:06:02.639> establishing<00:06:03.280> the<00:06:03.440> criteria involved in establishing the criteria involved in establishing the criteria for<00:06:04.199> recruiting<00:06:04.800> participants<00:06:05.680> in<00:06:05.880> clinical for recruiting participants in clinical for recruiting participants in clinical trials<00:06:07.120> as<00:06:07.280> well<00:06:07.560> as<00:06:07.759> the<00:06:07.919> incentives<00:06:08.520> for trials as well as the incentives for trials as well as the incentives for participation<00:06:10.520> the<00:06:10.680> information<00:06:11.199> on<00:06:11.440> these participation the information on these participation the information on these trials<00:06:12.240> needs<00:06:12.720> to<00:06:12.840> be<00:06:13.080> given<00:06:13.400> to<00:06:13.560> the trials needs to be given to the trials needs to be given to the potential<00:06:14.280> participants<00:06:15.199> in<00:06:15.440> linguistically potential participants in linguistically potential participants in linguistically and<00:06:16.560> culturally<00:06:17.560> acceptable<00:06:18.520> formats<00:06:19.520> the and culturally acceptable formats the and culturally acceptable formats the second<00:06:20.120> point<00:06:20.400> i'<00:06:20.479> would<00:06:20.639> like<00:06:20.800> for<00:06:20.960> you<00:06:21.120> to second point i' would like for you to second point i' would like for you to consider<00:06:22.599> is<00:06:22.759> the<00:06:22.960> standard<00:06:23.319> of<00:06:23.560> care<00:06:23.919> that<00:06:24.039> is consider is the standard of care that is consider is the standard of care that is provided<00:06:25.080> to<00:06:25.319> participants<00:06:25.960> within<00:06:26.240> any provided to participants within any provided to participants within any clinical<00:06:26.960> trial<00:06:27.960> now<00:06:28.240> this<00:06:28.360> is<00:06:28.560> subject<00:06:28.880> to<00:06:29.039> a clinical trial now this is subject to a clinical trial now this is subject to a lot<00:06:29.240> of<00:06:29.560> debate<00:06:29.960> and<00:06:30.639> controversy<00:06:31.639> should<00:06:32.240> the lot of debate and controversy should the lot of debate and controversy should the control<00:06:32.919> group<00:06:33.280> in<00:06:33.400> the<00:06:33.560> clinical<00:06:34.000> trial<00:06:34.400> be control group in the clinical trial be control group in the clinical trial be given<00:06:35.199> the<00:06:35.400> best<00:06:35.680> current<00:06:36.039> treatment<00:06:36.599> which given the best current treatment which given the best current treatment which is<00:06:36.880> available<00:06:37.840> anywhere<00:06:38.240> in<00:06:38.400> the<00:06:38.520> world<00:06:39.440> or is available anywhere in the world or is available anywhere in the world or should<00:06:39.880> they<00:06:40.039> be<00:06:40.240> given<00:06:40.560> an<00:06:40.800> alternative should they be given an alternative should they be given an alternative standard<00:06:41.960> of<00:06:42.160> care<00:06:42.960> such<00:06:43.160> as<00:06:43.319> the<00:06:43.520> best standard of care such as the best standard of care such as the best current<00:06:44.160> Treatment<00:06:45.039> available<00:06:45.599> in<00:06:45.759> the current Treatment available in the current Treatment available in the country<00:06:46.360> in<00:06:46.560> which<00:06:47.039> the<00:06:47.199> research<00:06:47.639> is<00:06:47.800> being country in which the research is being country in which the research is being conducted<00:06:49.440> is<00:06:49.560> it<00:06:49.800> fair<00:06:50.120> to<00:06:50.360> evaluate<00:06:50.960> a conducted is it fair to evaluate a conducted is it fair to evaluate a treatment<00:06:51.599> regimen<00:06:52.479> which<00:06:52.680> may<00:06:52.880> not<00:06:53.080> be treatment regimen which may not be treatment regimen which may not be affordable<00:06:54.199> or<00:06:54.520> accessible<00:06:55.440> to<00:06:55.639> the<00:06:55.759> study affordable or accessible to the study affordable or accessible to the study participants<00:06:56.800> once<00:06:57.080> the<00:06:57.240> research<00:06:57.680> has<00:06:57.800> been participants once the research has been participants once the research has been completed<00:06:59.560> now<00:07:00.000> in<00:07:00.160> a<00:07:00.360> situation<00:07:01.120> where<00:07:01.800> the completed now in a situation where the completed now in a situation where the best<00:07:02.280> current<00:07:02.639> treatment<00:07:03.080> is<00:07:03.280> inexpensive best current treatment is inexpensive best current treatment is inexpensive and<00:07:04.360> simple<00:07:04.680> to<00:07:04.879> deliver<00:07:05.879> the<00:07:06.000> answer<00:07:06.319> is and simple to deliver the answer is and simple to deliver the answer is straightforward<00:07:08.120> however<00:07:09.120> the<00:07:09.280> best<00:07:09.560> current straightforward however the best current straightforward however the best current Treatment<00:07:10.440> available<00:07:11.000> anywhere<00:07:11.440> in<00:07:11.599> the Treatment available anywhere in the Treatment available anywhere in the world<00:07:12.360> is<00:07:12.599> often<00:07:13.120> very<00:07:13.639> difficult<00:07:13.879> to<00:07:14.080> provide world is often very difficult to provide world is often very difficult to provide in<00:07:14.639> developing<00:07:15.560> countries<00:07:16.560> it<00:07:16.639> is<00:07:16.879> important in developing countries it is important in developing countries it is important to<00:07:17.680> assess<00:07:18.080> the<00:07:18.319> potential<00:07:18.800> risk<00:07:19.080> and to assess the potential risk and to assess the potential risk and benefits<00:07:20.280> of<00:07:20.440> the<00:07:20.599> standard<00:07:21.000> of<00:07:21.160> care<00:07:21.479> which benefits of the standard of care which benefits of the standard of care which is<00:07:21.720> to<00:07:21.879> be<00:07:22.319> provided<00:07:22.759> to<00:07:22.960> participants<00:07:23.560> in<00:07:23.800> any is to be provided to participants in any is to be provided to participants in any clinical<00:07:24.520> trial<00:07:25.440> and<00:07:25.680> establish<00:07:26.280> one<00:07:27.120> which clinical trial and establish one which clinical trial and establish one which is<00:07:27.479> relevant<00:07:27.960> for<00:07:28.160> the<00:07:28.319> study<00:07:29.000> the<00:07:29.120> for<00:07:29.240> the is relevant for the study the for the is relevant for the study the for the the<00:07:29.520> context<00:07:29.919> of<00:07:30.080> the<00:07:30.199> study<00:07:30.759> and<00:07:30.960> most the context of the study and most the context of the study and most beneficial<00:07:31.800> for<00:07:32.000> the<00:07:32.199> participants<00:07:32.840> within beneficial for the participants within beneficial for the participants within the<00:07:33.400> study<00:07:34.400> that<00:07:34.560> brings<00:07:34.840> us<00:07:35.039> to<00:07:35.199> the<00:07:35.400> third the study that brings us to the third the study that brings us to the third point<00:07:35.960> I<00:07:36.080> want<00:07:36.240> you<00:07:36.360> to<00:07:36.560> think<00:07:36.800> about<00:07:37.759> the point I want you to think about the point I want you to think about the ethical<00:07:38.400> review<00:07:38.759> of<00:07:39.440> research<00:07:40.440> an<00:07:40.680> effective ethical review of research an effective ethical review of research an effective system<00:07:41.879> for<00:07:42.199> reviewing<00:07:42.720> the<00:07:42.879> ethical system for reviewing the ethical system for reviewing the ethical suitability<00:07:44.360> of<00:07:44.560> clinical<00:07:45.000> trials<00:07:45.919> is suitability of clinical trials is suitability of clinical trials is primordial<00:07:46.879> to<00:07:47.080> safeguard<00:07:47.759> participants primordial to safeguard participants primordial to safeguard participants within<00:07:48.599> any<00:07:48.800> clinical<00:07:49.440> trial<00:07:50.440> unfortunately within any clinical trial unfortunately within any clinical trial unfortunately this<00:07:51.440> is<00:07:51.680> often<00:07:52.560> lacking<00:07:53.280> or<00:07:53.960> inefficient<00:07:54.560> in this is often lacking or inefficient in this is often lacking or inefficient in a<00:07:54.800> lot<00:07:54.919> of<00:07:55.080> developing<00:07:55.840> countries<00:07:56.840> local a lot of developing countries local a lot of developing countries local governments<00:07:58.479> need<00:07:58.840> to<00:07:59.400> to<00:07:59.599> set<00:07:59.840> up<00:08:00.120> effective governments need to to set up effective governments need to to set up effective systems<00:08:01.120> for<00:08:01.319> reviewing<00:08:01.800> the<00:08:02.000> ethical<00:08:02.479> issues systems for reviewing the ethical issues systems for reviewing the ethical issues around<00:08:03.199> the<00:08:03.319> clinical<00:08:03.759> trials<00:08:04.520> which<00:08:04.680> are around the clinical trials which are around the clinical trials which are authorized<00:08:05.599> in<00:08:06.080> different<00:08:06.440> developing authorized in different developing authorized in different developing countries<00:08:08.080> and<00:08:08.199> they<00:08:08.360> need<00:08:08.520> to<00:08:08.680> do<00:08:08.960> this<00:08:09.199> by countries and they need to do this by countries and they need to do this by setting<00:08:09.759> up<00:08:10.319> ethical<00:08:10.759> review<00:08:11.240> committees setting up ethical review committees setting up ethical review committees that<00:08:11.960> are<00:08:12.159> independent<00:08:12.720> of<00:08:12.879> the<00:08:13.039> government that are independent of the government that are independent of the government and<00:08:14.159> research<00:08:15.080> sponsors<00:08:16.080> public and research sponsors public and research sponsors public accountability<00:08:17.240> needs<00:08:17.520> to<00:08:17.680> be<00:08:17.840> promoted accountability needs to be promoted accountability needs to be promoted through<00:08:19.120> transparency<00:08:20.120> and<00:08:20.360> independent through transparency and independent through transparency and independent review<00:08:21.800> by<00:08:21.960> non-governmental<00:08:22.840> and review by non-governmental and review by non-governmental and international<00:08:23.919> organizations<00:08:24.919> as international organizations as international organizations as appropriate<00:08:26.759> the<00:08:26.960> final<00:08:27.360> point<00:08:27.680> i'<00:08:27.759> would appropriate the final point i' would appropriate the final point i' would like<00:08:28.080> for<00:08:28.240> you<00:08:28.400> to<00:08:28.599> consider<00:08:28.960> tonight like for you to consider tonight like for you to consider tonight is<00:08:30.400> what<00:08:30.680> happens<00:08:31.080> to<00:08:31.319> participants<00:08:31.840> in<00:08:31.960> the is what happens to participants in the is what happens to participants in the clinical<00:08:32.519> trial<00:08:33.279> once<00:08:33.599> the<00:08:33.760> research<00:08:34.200> has clinical trial once the research has clinical trial once the research has been been been completed<00:08:36.240> I<00:08:36.399> think<00:08:36.880> it<00:08:37.000> is<00:08:37.360> absolutely<00:08:37.880> wrong completed I think it is absolutely wrong completed I think it is absolutely wrong for<00:08:38.440> research<00:08:38.880> to<00:08:39.080> begin<00:08:39.440> in<00:08:39.560> the<00:08:39.719> first<00:08:40.000> place for research to begin in the first place for research to begin in the first place without<00:08:40.479> a<00:08:40.640> clear<00:08:41.039> plan<00:08:41.800> for<00:08:42.080> what<00:08:42.360> would without a clear plan for what would without a clear plan for what would happen<00:08:42.919> to<00:08:43.080> the<00:08:43.279> participants<00:08:44.200> once<00:08:44.519> the happen to the participants once the happen to the participants once the trial<00:08:45.040> has trial has trial has ended<00:08:46.800> now<00:08:47.560> researchers<00:08:48.480> need<00:08:48.800> to<00:08:48.959> make<00:08:49.360> every ended now researchers need to make every ended now researchers need to make every e<00:08:50.000> effort<00:08:50.360> to<00:08:50.560> ensure<00:08:51.040> that<00:08:51.440> an<00:08:51.680> intervention e effort to ensure that an intervention e effort to ensure that an intervention that<00:08:52.440> has<00:08:52.560> been<00:08:52.720> shown<00:08:53.040> to<00:08:53.320> be<00:08:53.959> beneficial that has been shown to be beneficial that has been shown to be beneficial during<00:08:54.760> a<00:08:54.920> clinical<00:08:55.480> trial<00:08:56.920> is<00:08:57.920> accessible<00:08:58.519> to during a clinical trial is accessible to during a clinical trial is accessible to the<00:08:58.800> participant<00:08:59.440> of<00:08:59.560> the<00:08:59.640> trial<00:09:00.240> once<00:09:00.480> the the participant of the trial once the the participant of the trial once the trial<00:09:00.959> has<00:09:01.120> been<00:09:01.519> completed<00:09:02.519> in<00:09:02.720> addition trial has been completed in addition trial has been completed in addition they<00:09:03.279> should<00:09:03.519> be<00:09:03.720> able<00:09:04.079> to<00:09:04.720> consider<00:09:05.160> the they should be able to consider the they should be able to consider the possibility<00:09:05.959> of<00:09:06.440> introducing<00:09:07.440> and possibility of introducing and possibility of introducing and maintaining<00:09:08.399> effective<00:09:08.839> treatments<00:09:09.720> in<00:09:09.880> The maintaining effective treatments in The maintaining effective treatments in The Wider<00:09:10.600> Community<00:09:11.600> once<00:09:11.920> the<00:09:12.079> trial<00:09:12.440> ends<00:09:13.399> if Wider Community once the trial ends if Wider Community once the trial ends if for<00:09:13.800> any<00:09:14.120> reason<00:09:14.480> they<00:09:14.600> feel<00:09:14.880> that<00:09:15.079> this<00:09:15.320> might for any reason they feel that this might for any reason they feel that this might not<00:09:15.720> be<00:09:16.000> possible<00:09:16.959> then<00:09:17.160> I<00:09:17.279> think<00:09:17.560> they<00:09:17.680> should not be possible then I think they should not be possible then I think they should have<00:09:18.079> to<00:09:18.320> ethically<00:09:18.920> justify<00:09:19.920> why<00:09:20.120> the have to ethically justify why the have to ethically justify why the clinical<00:09:20.720> trial<00:09:21.040> should<00:09:21.240> be<00:09:21.399> conducted<00:09:21.959> in clinical trial should be conducted in clinical trial should be conducted in the<00:09:22.279> first<00:09:22.920> place<00:09:23.920> now<00:09:24.200> fortunately<00:09:24.800> for the first place now fortunately for the first place now fortunately for Seline<00:09:26.200> our<00:09:26.399> meeting<00:09:26.839> did<00:09:27.000> not<00:09:27.160> end<00:09:27.399> in<00:09:27.560> my Seline our meeting did not end in my Seline our meeting did not end in my office<00:09:28.800> I<00:09:28.920> was<00:09:29.200> was<00:09:29.320> able<00:09:29.600> to<00:09:29.800> get<00:09:29.959> her office I was was able to get her office I was was able to get her enrolled<00:09:30.640> into<00:09:30.839> a<00:09:30.959> free<00:09:31.240> HIV<00:09:31.760> treatment enrolled into a free HIV treatment enrolled into a free HIV treatment program<00:09:33.279> closer<00:09:33.640> to<00:09:33.839> her<00:09:34.040> home<00:09:34.800> and<00:09:34.959> with<00:09:35.079> a program closer to her home and with a program closer to her home and with a support<00:09:35.680> group<00:09:36.160> to<00:09:36.360> help<00:09:36.600> her<00:09:37.279> cope<00:09:38.279> her<00:09:38.519> story support group to help her cope her story support group to help her cope her story has<00:09:39.079> a<00:09:39.279> positive<00:09:39.720> ending<00:09:40.720> but<00:09:40.880> there<00:09:40.959> are has a positive ending but there are has a positive ending but there are thousands<00:09:41.760> of<00:09:42.000> others<00:09:42.680> in<00:09:42.920> similar thousands of others in similar thousands of others in similar situations<00:09:44.440> who<00:09:44.600> are<00:09:44.760> much<00:09:45.000> less situations who are much less situations who are much less fortunate<00:09:46.880> although<00:09:47.240> she<00:09:47.480> may<00:09:47.680> not<00:09:47.959> know<00:09:48.360> this fortunate although she may not know this fortunate although she may not know this my<00:09:49.360> encounter<00:09:49.880> with<00:09:50.200> Seline<00:09:51.200> has<00:09:51.440> completely my encounter with Seline has completely my encounter with Seline has completely changed<00:09:52.560> the<00:09:52.720> way<00:09:52.880> in<00:09:53.000> which<00:09:53.320> I<00:09:53.480> view<00:09:54.279> HIV changed the way in which I view HIV changed the way in which I view HIV clinical<00:09:55.240> trials<00:09:55.720> in<00:09:55.880> developing<00:09:56.480> countries clinical trials in developing countries clinical trials in developing countries and<00:09:57.680> made<00:09:57.920> me<00:09:58.200> even<00:09:58.440> more<00:09:58.680> determined<00:09:59.240> mined and made me even more determined mined and made me even more determined mined to<00:09:59.640> be<00:09:59.839> part<00:10:00.000> of<00:10:00.160> the<00:10:00.320> movement<00:10:01.120> to<00:10:01.320> change<00:10:01.720> the to be part of the movement to change the to be part of the movement to change the way<00:10:02.040> in<00:10:02.200> which<00:10:02.399> things<00:10:02.640> are<00:10:03.000> done<00:10:04.000> I<00:10:04.120> believe way in which things are done I believe way in which things are done I believe that<00:10:04.800> every<00:10:05.079> single<00:10:05.560> person<00:10:06.480> listening<00:10:06.920> to<00:10:07.120> me that every single person listening to me that every single person listening to me tonight<00:10:08.480> can<00:10:08.640> be<00:10:08.880> part<00:10:09.079> of<00:10:09.279> that<00:10:09.720> change<00:10:10.720> if tonight can be part of that change if tonight can be part of that change if you're<00:10:11.040> a<00:10:11.240> researcher<00:10:12.000> I<00:10:12.160> hold<00:10:12.519> you<00:10:13.079> to<00:10:13.279> a you're a researcher I hold you to a you're a researcher I hold you to a higher<00:10:13.839> standard<00:10:14.160> of<00:10:14.320> moral<00:10:14.720> conscience<00:10:15.600> to higher standard of moral conscience to higher standard of moral conscience to remain<00:10:16.279> ethical<00:10:16.680> in<00:10:16.800> your<00:10:17.040> research<00:10:18.040> and<00:10:18.200> not remain ethical in your research and not remain ethical in your research and not compromise<00:10:19.120> human<00:10:19.440> welfare<00:10:19.880> in<00:10:20.000> your<00:10:20.160> search compromise human welfare in your search compromise human welfare in your search for<00:10:20.839> answers<00:10:21.839> if<00:10:21.959> you<00:10:22.160> work<00:10:22.440> for<00:10:22.600> a<00:10:22.680> funding for answers if you work for a funding for answers if you work for a funding agency<00:10:23.600> or<00:10:23.839> pharmaceutical<00:10:24.600> company<00:10:25.560> I agency or pharmaceutical company I agency or pharmaceutical company I challenge<00:10:26.320> you<00:10:27.000> to<00:10:27.200> hold<00:10:27.560> your<00:10:27.760> employers<00:10:28.640> to challenge you to hold your employers to challenge you to hold your employers to find<00:10:29.279> research<00:10:29.760> that<00:10:29.880> is<00:10:30.040> ethically<00:10:30.600> sound<00:10:31.600> if find research that is ethically sound if find research that is ethically sound if you<00:10:31.959> come<00:10:32.200> from<00:10:32.360> a<00:10:32.519> developing<00:10:33.040> country<00:10:33.480> like you come from a developing country like you come from a developing country like myself<00:10:35.000> I<00:10:35.200> urge<00:10:35.600> you<00:10:36.200> to<00:10:36.440> hold<00:10:36.720> your myself I urge you to hold your myself I urge you to hold your government<00:10:37.839> to<00:10:38.040> a<00:10:38.160> more<00:10:38.440> thorough<00:10:38.839> review<00:10:39.240> of government to a more thorough review of government to a more thorough review of the<00:10:39.519> clinical<00:10:40.000> trials<00:10:40.760> which<00:10:40.920> are<00:10:41.120> authorized the clinical trials which are authorized the clinical trials which are authorized in<00:10:41.839> your<00:10:42.399> country<00:10:43.399> yes<00:10:43.680> there<00:10:43.800> is<00:10:43.959> a<00:10:44.160> need<00:10:44.440> for in your country yes there is a need for in your country yes there is a need for us<00:10:44.839> to<00:10:45.079> find<00:10:45.320> a<00:10:45.440> cure<00:10:45.680> for<00:10:46.000> HIV<00:10:47.000> to<00:10:47.160> find<00:10:47.399> an us to find a cure for HIV to find an us to find a cure for HIV to find an effective<00:10:48.120> vaccine<00:10:48.519> for<00:10:48.760> malaria<00:10:49.760> to<00:10:49.959> find<00:10:50.760> a effective vaccine for malaria to find a effective vaccine for malaria to find a diagnostic<00:10:51.560> tool<00:10:51.880> that<00:10:52.040> works<00:10:52.360> for<00:10:52.560> TB<00:10:53.560> but<00:10:53.720> I diagnostic tool that works for TB but I diagnostic tool that works for TB but I believe<00:10:54.480> that<00:10:54.639> we<00:10:54.880> owe<00:10:55.160> it<00:10:55.440> to<00:10:55.720> those<00:10:55.959> who believe that we owe it to those who believe that we owe it to those who willingly<00:10:57.160> and<00:10:57.440> selflessly<00:10:58.279> consent<00:10:58.760> to willingly and selflessly consent to willingly and selflessly consent to participate<00:10:59.639> in<00:10:59.800> these<00:11:00.000> clinical<00:11:00.440> trials<00:11:01.240> to participate in these clinical trials to participate in these clinical trials to do<00:11:01.720> this<00:11:01.920> in<00:11:02.040> a<00:11:02.240> humane<00:11:02.680> way<00:11:03.560> thank do this in a humane way thank do this in a humane way thank [Music]



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Boghuma Kabisen Titanji, TED, TEDx, TEDxGoodenoughCollege, TED-Ed, TED, Ed, TEDEducation, HIV, AIDS, HIV, Africa, Sub-Saharan, ethics

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