Controversial UCSD Genital Mutilation Study Keeps Getting Rejected

Speaker 1: 00:00 This next story contains information that may be disturbing to some listeners, especially children I, UC San Diego economist wants to use economic incentives to stop an African tribe from performing female genital mutilation on young girls, but research approval boards at UC SD worry. His study may do more harm than good. I knew source investigative reporter Brad Racino has the story behind this controversial research. Speaker 2: 00:28 Eureka uneasy is a professor of behavioral economics at ucs, Ds, Rady School of Management. His work focuses on studying incentives and how they can be used to change human behavior. Here he is speaking on a Canadian Television show in 2014 if you want to understand how people behave in the real world, you have to go to the real world and actually look, look at them. Look, uneasy, wants to change one behavior in particular, female genital mutilation among Kenya, Masai tribe and ethnic group that celebrates the act as a rite of passage. The procedure involves cutting off the cliteracy of girls as young as 10 without anesthesia in part to make them more desirable for marriage. Kenya outlawed the practice eight years ago, but it still continues, so for three years, Kanizi has been trying to get a study approved by UCFD. He wants to pay the school tuition for hundreds of messiah girls, barely teenagers. If they do not undergo the cut, he'd make the payment for four years as long as health checks on the girls showed they hadn't had the procedure, he monitor another group of girls to see what happens when they're not paid. But there's one big problem. Speaker 3: 01:37 My first impression is that the study is never going to be ethical. Speaker 2: 01:43 Dr. Timothy Johnson is a University of Michigan obstetrician and International Women's health researcher. Speaker 3: 01:48 I just think female genital mutilation is not a particularly good area to test economic incentives. Speaker 2: 01:54 Kanizi said he wasn't interested in talking with, I knew source about this topic because it's sensitive, but university records detail his three year battle with ucs to get his Kenya project approved. The documents offer a rare glimpse into how decisions on risky research are made, how vulnerable populations are supposed to be protected, and how even well intentioned researchers can cross ethical lines. Speaker 3: 02:18 We live in a global world and what happens to little girls in Kenya, especially if it's being done by researchers from the global north impacts all of us. The Speaker 2: 02:27 board that approves research at Ucs d denied Sinisi's original plan in 2016 since then, the economist has tried again and again to get the study approved, but he's been denied each time the boards have said his plan is riddled with social, legal, and ethical problems that far outweigh its potential benefits. There are questions about child safety and how to ethically study an illegal act and there are concerns about privacy, financial sustainability, cultural ignorance and western arrogance. Katie Specter. Baghdadi is an assistant professor of obstetrics and gynecology. She's also chair of the University of Michigan's research ethics committee. She told, I knew source. She's obviously very opposed to female genital mutilation, but after hearing Guinea z's proposal added, Speaker 4: 03:13 that seems incredibly punitive to these young children to somehow put the responsibility on them that they don't get a scholarship unless they somehow protect themselves from getting mutilated when we know that they don't have any control over it and then they're going to get mutilated and lose their scholarship. Speaker 2: 03:32 Researchers have an enhanced obligation to protect the vulnerable populations. They're studying spectrum, Baghdadi said, and because the researchers often benefit from their own work, such as getting more funding, publishing in a journal or boosting their prestige, Speaker 4: 03:45 you can't just say something terrible is happening and I'm just going to watch it because I'm a researcher and therefore that makes it okay. Yeah, Speaker 2: 03:53 it's extremely rare for a research approval board to deny a study. Once [inaudible] was denied for a fifth time in late August, I knew source analyzed more than 50,000 pages detailing proposed biomedical studies at UCLA. Most of the records go back to 2004 we found no other human research study of the thousands proposed over that period. That has been denied this many times. Speaker 1: 04:17 This story was reported as part of I new sources, ongoing risky research series, which looks at the systems meant to protect human research subjects for more on the series go to, I knew source.org I knew sources, an independently funded nonprofit partner of KPBS. Joining me now was I knew source investigative reporter, GL Castellano who partnered with Brad Racino to produce this story on ucs, D's controversial research proposal. And Jill, welcome to the program. Thank you. You know, I'm not clear about a crucial aspect of this proposed study aren't many underage girls pet without their consent. And so how would paying for tuition stop that practice? Right? That is the case, but their parents are partly responsible for the fact that they get this female genital mutilation. So the idea of this economists study is that by offering economic incentives to these families that paying, paying for their tuition, that that will actually be enough to prevent these girls from getting female genital mutilation because their parents can stop it from happening. So it would go to their parents and they would be the ones who would say no to this genital mutilation. Even though it is a cultural aspect of their lives. Theoretically that's what he proposed. And what does the research proposal say about how to monitor a control group who didn't get paid and presumably would be more subject to having genital mutilation? Right. There are definitely concerns about that aspect of the study. So all the girls who participate in this research, whether they're being offered tuition, not are going Speaker 5: 05:58 to get checked once a year according to this research proposal by nurses. And if they have undergone female genital mutilation, the girls in the experimental group will no longer receive tuition. But the girls in the control group, they're not getting tuition anyway, so it doesn't really matter. So they're still being monitored once a year. But the idea is, yeah, they probably are going to undergo this dangerous procedure and he's just kind of uric uneasy. This professor sitting by and saying, we expect that to happen. In some cases, the fact that female genital mutilation is illegal in Kenya but still practice in this small community. How does that factor into the ethical concerns about this study? Right. That really is a big ethical concern because part of what the people we've spoken with about this research proposal have said is by participating in this study, it will be clearer over time in this small community which girls have undergone female genital mutilation and which haven't because we're offering these big incentives, so it's possible that that'll expose which parents are responsible for letting their kids undergo this female genital mutilation. Speaker 5: 07:12 The result of that is perhaps the Kenyan government is going to come in and arrest the parents in this community who are responsible for letting their kids undergo this illegal procedure. There's nothing in the research proposal about this. There's nothing to say what would happen to these girls and how to deal with the psychological trauma of their parents being taken away. Now, the economist who proposed this study Yuring uneasy. Is he well-respected in the field? Absolutely. His work has been lauded around the world. He studies how economic incentives change behavior. In fact, the one of the coauthors of the famous book, freakonomics called him a genius. So he is very well respected in his field. And the fact that he's the one who wants to go in and offer these incentives in this case, I think makes people really consider whether it's a good idea or not considering that he's done this and it's worked in other situations. Speaker 5: 08:06 But as you say, this has been, this proposal has been rejected again and again. Why did Kanizi propose it over and over again, eh, despite that, yeah, it's, it's a good question. I think according to what Brad Racino and I have gleaned from the documents we have about this research, he uri guineas, he really feels that this is a human rights violation and that it needs to stop. And this idea is very noble, but the people we've spoken with have said, this is just not the right way to go about this whole issue now. So in other words, does that mean that there is no way that researchers can study female genital mutilation or try to stop it? Do these ethical concerns make that impossible? Not necessarily. This is a specific that we haven't seen before where a researcher is proposing to offer some kind of monetary incentive to stop female genital mutilation. Speaker 5: 09:04 That's what's new here. But in general this practice has been studied and continues to be studied to try to prevent it. For example, one of the individuals we spoke to for this story is a professor named Timothy Johnson and he went into Ghana and educated the queen mothers and Ghana about the dangers of this procedure and how difficult it is for women to give birth after getting this procedure. And they were then able to go back into their own communities where they are very well respected and try to stop the prevalence of this dangerous practice. So it's really the way that he's going about this. That's making everyone concerned. Jill, why did you and Brad think this was an important story to tell? Well, when we got this treasure trove of documents, we realized this is a perfect opportunity to show how decisions are made about controversial research. Speaker 5: 09:53 There's no necessary right answer or wrong answer, but we thought it was a good opportunity to tease apart how these decisions are made. And you generally speaking and what you found out, most of these research proposals are actually accepted by the university. Is that right? That's right. It's very rare for a study to be denied in this case. It's been denied now five times, which I think speaks to the real concerns about how this study is going about. Really something to think about it. Thank you very much. I've been speaking with, I knew source reporter, GL Costa. No, thanks a lot. Thank you. Speaker 6: 10:37 [inaudible].