Latest / Health Ethics Podcast / Beyond “Checkbox” Ethics: What Really Matters in Global Research

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Beyond “Checkbox” Ethics: What Really Matters in Global Research · Health Ethics Podcast

0:09
Speaker 1: Welcome to Health Ethics, a series of conversations with leading
0:13
Speaker 1: experts about ethical considerations associated with health and healthcare, both
0:17
Speaker 1: locally and globally. I am Brian Pilkington, Professor of Bioethics
0:21
Speaker 1: in the Department of Medical Sciences at the Hackensack Meridan
0:24
Speaker 1: School of Medicine. This series, like its predecessor, which focused
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Speaker 1: on the COVID nineteen pandemic, relies on the idea that
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Speaker 1: challenging ethical issues are best addressed by folks from diverse
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Speaker 1: backgrounds practically reasoning together, and complements the Health Ethics series
0:41
Speaker 1: with its panel of leading experts from medicine, nursing, politics, economics,
0:46
Speaker 1: philosophy and the law. Thank you and enjoy the episode.
1:00
Speaker 2: Welcome to the Health Ethics Podcast. I am Brian Pilkington,
1:03
Speaker 2: and it's my great pleasure today to be speaking with
1:05
Speaker 2: Professor Joseph Alee. Joe is the Associate Director of Global
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Speaker 2: Programs at the John Hopkins Berman Institute of Bioethics and
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Speaker 2: also Associate Professor in the Department of International Health at
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Speaker 2: Johns Hopkins Bloomberg School of Public Health. His research and
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Speaker 2: teaching engages a range of challenges in both domestic and
1:23
Speaker 2: global health ethics. This includes empirical and normative work in
1:27
Speaker 2: the US and international research ethics and projects that address
1:31
Speaker 2: the implications of emerging, global, mobile and digital technologies as
1:36
Speaker 2: applied in the context of health research, public health programs,
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Speaker 2: and disease surveillance. He is particularly interested in how values
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Speaker 2: are expressed, represented, prioritized, and influenced in the context of
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Speaker 2: digital technologies and works with colleagues internationally to advance the
1:51
Speaker 2: development of multidisciplinary research, training, and service partnerships in bioethics,
1:56
Speaker 2: where he's committed in his work to collaboratively support the
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Speaker 2: capacity of scholars for resource constrained countries and settings to
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Speaker 2: lead bioethics research, teaching, and practice on issues of local importance.
2:08
Speaker 2: He's been involved in establishing and operating NIH Fogerty funded
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Speaker 2: non degree Masters, doctoral and post doctoral programs and bioethics
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Speaker 2: at Johns Hopkins and with partners in Uganda, Ethiopia, Zambia, Botswana,
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Speaker 2: and Malaysia. He also co leads the Welcome funded Oxford
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Speaker 2: University Johns Hopkins University Global Infectious Disease Ethics the GLIDE Collaborative,
2:31
Speaker 2: which I'm from. Many listeners will be familiar with. That
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Speaker 2: collaborative supports research in training between JOHNS. Hopkins Berman Institute
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Speaker 2: of Bioethics and the Oxford Welcome Center for Ethics and
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Speaker 2: Humanities to address emerging issues involving ethics and infectious disease.
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Speaker 2: Professor Eli serves as a member of the Hopkins School
2:50
Speaker 2: Public Health Institutional or Viewboard and previously served on the
2:54
Speaker 2: Faculty Senate. He's Associate editor of the Journal of Empirical
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Speaker 2: Research and Human Research Ethics. That introduction, no one will
3:01
Speaker 2: be surprised why I'm so excited to chat with him today, Joe,
3:06
Speaker 2: thanks so much for joining me on the podcast. Before
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Speaker 2: we dive into some of the big ethics questions and
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Speaker 2: research and in global health, I want to know what
3:14
Speaker 2: got you interested in research ethics. You sit on my
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Speaker 2: or B research across the globe, you do work building
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Speaker 2: bioethics capacities. What got you interested? How did you begin
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Speaker 2: this work?
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Speaker 3: Yeah? Thanks a lot, Brian for having me on the podcast.
3:28
Speaker 3: Happy to be here, Yeah, and share a bit of
3:31
Speaker 3: my story. But talking about this topic, which is dear
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Speaker 3: to my part, I came at this a little bit sideways.
3:40
Speaker 3: I'd say, you know, I'm a trained lawyer, not a physician,
3:43
Speaker 3: not a bench scientist. Didn't do a whole lot of
3:46
Speaker 3: research before I started working in research ethics, to be honest.
3:49
Speaker 3: And it wasn't a single case or event or anything
3:53
Speaker 3: really that drew me in, but a lot of recurring questions,
3:57
Speaker 3: you know, I had. I had an opportunity to study
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Speaker 3: bioethics a while back when I was an undergraduate student
4:02
Speaker 3: in Toronto and then as I was doing my law
4:04
Speaker 3: degree in Pittsburgh, and what came forward to me, especially
4:10
Speaker 3: while I was studying law, which, as you know, focuses
4:12
Speaker 3: a lot on justice issues, was a lot of questions
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Speaker 3: around who gets to decide really what's acceptable to do
4:20
Speaker 3: in the name of knowledge generation, you know, and whose
4:23
Speaker 3: interests actually get protected and represented when decisions get made,
4:26
Speaker 3: and then what ways and things like that. So I've
4:29
Speaker 3: over the years had an opportunity to grapple with those
4:31
Speaker 3: kinds of questions and others, both through research but also
4:35
Speaker 3: serving on IRBs, institutional review boards and other things that
4:39
Speaker 3: that placed me in that world. And I can share more,
4:43
Speaker 3: but I've had a really really great opportunity in the
4:47
Speaker 3: last fifteen twenty years to work with colleagues both here
4:50
Speaker 3: at Johns Hopkins and then with institutions around the world
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Speaker 3: to help even strengthen and build bioethics capacity through training
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Speaker 3: programs and things like that that have been funded largely
5:00
Speaker 3: by the USNIH. I'm one of the Folgut International Centers.
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Speaker 3: So yeah, it's been a bit of a journey. I'll
5:07
Speaker 3: admit at the beginning I didn't quite know fully where
5:09
Speaker 3: I would go, but I where I would land. But
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Speaker 3: I've always had a bit of a passion for understanding
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Speaker 3: better how ethical issues emerge and are dressed in cross
5:18
Speaker 3: cultural and international context And at the time when I
5:20
Speaker 3: was studying biotics in the late nineteen nineties early two thousands,
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Speaker 3: that wasn't a big part of the conversation, and I
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Speaker 3: thought it needed to be.
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Speaker 2: This has helpful, and feel free to sort of pull
5:32
Speaker 2: in other autobiographical features as we as we move through
5:38
Speaker 2: the topics today, but let's stick with what you just
5:40
Speaker 2: mentioned a thing about bioethics training and capacity building. Bioethicists,
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Speaker 2: at least the ones that I know, love to talk
5:47
Speaker 2: about values, right, everything's values, it's values framework, and more
5:51
Speaker 2: recently they love to talk about artificial intelligence. So you
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Speaker 2: do work in digital technologies you do your interested in
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Speaker 2: sort of questions, cross cultural questions value. How do you
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Speaker 2: think about values expressed through whether it's a specific or
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Speaker 2: just emerging technologies? Is there something common across human cultures
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Speaker 2: in your experience in terms of value expression? Is every
6:13
Speaker 2: group distinct? Sort of help us think through the sort
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Speaker 2: of cross cultural values questions?
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Speaker 3: Yeah, these are tough questions, right, Yeah, Yeah, No, there's
6:24
Speaker 3: there's like deep, deeply seated questions in you know, meta
6:29
Speaker 3: ethics around like value relativism and absolutism, universalism, those kinds
6:34
Speaker 3: of things, And I'm definitely not capable of doing that
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Speaker 3: full justice here. So I'll table some of those, some
6:40
Speaker 3: of those conceptual questions and pass them along to your
6:43
Speaker 3: next guest maybe. But yeah, I think the temptation is
6:47
Speaker 3: often to kind of like pick sides and say like,
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Speaker 3: either values are universal, right, we think people generally care
6:52
Speaker 3: about fairness and dignity and respect and in similar ways everywhere,
6:57
Speaker 3: or people sometimes argue that things are quite local, right,
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Speaker 3: and context dependent. I don't know if either poll is
7:03
Speaker 3: sort of in my views, right, I think the interesting
7:07
Speaker 3: work happens a bit in between. And so here's how
7:10
Speaker 3: I would think about it. There's this kind of maybe commonality,
7:14
Speaker 3: you could say, in broad commitments. You know, I've worked
7:17
Speaker 3: across a lot of different countries in context with great
7:21
Speaker 3: people in Malaysia and Uganda and Zambia and Botswana and
7:25
Speaker 3: Ethiopia and India, and you find pretty much everywhere, right
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Speaker 3: that people care about human welfare, about honesty, about fairness,
7:34
Speaker 3: about not exploiting vulnerable people. And where you see things
7:38
Speaker 3: diverges around how things get prioritized, who gets to voice
7:44
Speaker 3: their concerns and opinions about how to articulate and specify
7:48
Speaker 3: certain values and principles, and whether there's some common issues
7:52
Speaker 3: right that you see are relating to decision making, for example,
7:56
Speaker 3: where sometimes it's people make claims that decision making occurs
8:04
Speaker 3: in the West in ways that are quite individualistic, whereas
8:07
Speaker 3: in many other context individuals make decisions in relation to
8:10
Speaker 3: others like spouses or elderly people or community members. And
8:14
Speaker 3: you could say, right, there isn't a disagreement that it's
8:16
Speaker 3: important to respect people's decision making process. Right, That's kind
8:21
Speaker 3: of a universal thing that many people think is important.
8:24
Speaker 3: But the differences in how that gets enacted, and I say,
8:27
Speaker 3: sometimes this picture gets overly simplified even in the so
8:31
Speaker 3: called West. Right, I'm in North America, you're in North America.
8:34
Speaker 3: I'm sure you're just as aware as I am that
8:36
Speaker 3: we have all sorts of communal interests and we make
8:39
Speaker 3: decisions in relation to others as well, and it's not
8:42
Speaker 3: all about individuals. So I think it's important to recognize
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Speaker 3: that there's a plurality of ways of doing decision making
8:48
Speaker 3: in various contexts around the world, and it's just about
8:51
Speaker 3: figuring out how how people do that, where, what kind
8:54
Speaker 3: of desires they have, and how you can help them
8:57
Speaker 3: achieve those kinds of decision making objective the processes that
9:02
Speaker 3: are important to them.
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Speaker 2: That's really helpful. And yeah, we'll stick the sort of
9:05
Speaker 2: heavy heading philosophy and meta ethics, so we.
9:07
Speaker 3: Can do that another time.
9:09
Speaker 2: But it's helpful both for you know, folks who listen
9:12
Speaker 2: to the podcast and are interested in big international research questions.
9:16
Speaker 2: It's also helpful for as I mentioned we were chatting before,
9:20
Speaker 2: we have a lot of medical students who listen to
9:22
Speaker 2: the podcast and they will run into right and treat
9:25
Speaker 2: and have patients in the future who come from diverse cultures, populations,
9:29
Speaker 2: different persons who We've even talked in class about some
9:33
Speaker 2: of these kinds of situations and sort of varying sense
9:35
Speaker 2: of values. So that's great thinking about sort of maybe
9:39
Speaker 2: there are certain kinds of commonalities, certain places things diverge.
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Speaker 2: How does this impact or how should it impact how
9:45
Speaker 2: we think about research practices across the globe, either with
9:49
Speaker 2: emerging technologies or sort of if there's another good example,
9:52
Speaker 2: sort of how does that given the sort of international collaboration.
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Speaker 3: I think one of the mistakes I worry about sometimes
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Speaker 3: is assumption that because we share like a common vocabulary
10:02
Speaker 3: now across many parts of the world, right we say
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Speaker 3: that fairness matters and we care about consent and benefits
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Speaker 3: that could be derived from research, that we assume that
10:11
Speaker 3: those words sort of travel intact, but they don't always
10:15
Speaker 3: right there. So from a research practice perspective, we've got
10:19
Speaker 3: to we have to be careful in doing a national
10:21
Speaker 3: collaborative work. And this is very much a by directional
10:23
Speaker 3: care responsibility that we're not kind of exporting our own
10:28
Speaker 3: ways of thinking and their own frameworks in a way
10:30
Speaker 3: that are uncritical. And what's really important process wise to
10:35
Speaker 3: ensuring that we don't do that is to bake in
10:37
Speaker 3: some kind of engagement process with the communities who were
10:42
Speaker 3: ideally wanting to participate in our research. And so we
10:46
Speaker 3: need to figure that out, right, we need local partners
10:49
Speaker 3: and communities. First. We needs identify them and say, like,
10:52
Speaker 3: these are the people who stand to benefit, who stand
10:55
Speaker 3: to be burdened by the work, Engage with them around
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Speaker 3: value discussions to the extent that that's possible, and to
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Speaker 3: design studies around those kinds of context and frameworks so
11:05
Speaker 3: that again, like ethics isn't just like a checkbox. I've
11:07
Speaker 3: done the consent thing. I've respected people, but I've actually
11:11
Speaker 3: gone to out there to try to better understand how
11:14
Speaker 3: respect is operationalized in that context and maybe have then
11:17
Speaker 3: integrated into again the research practice some elements that honor
11:24
Speaker 3: that that commitment. So I think that's that's kind of
11:26
Speaker 3: one way to operationalize this in practice is to kind
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Speaker 3: of think beyond think beyond the checkbox. Essentially.
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Speaker 2: I think it's an excellent point and worth us all considering, right,
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Speaker 2: the possibilities of equivocation. I might mean one thing when
11:39
Speaker 2: I think about dignity, you might mean something else, right,
11:41
Speaker 2: and so getting clear on that is huge and we
11:43
Speaker 2: avoid you know, lots of confusion and that. But what
11:47
Speaker 2: you've suggested, the sort of community engaged model is very attractive,
11:50
Speaker 2: but I imagine it takes a lot more work than
11:53
Speaker 2: check in the box. So any advice, good stories from
11:57
Speaker 2: times you've done this, practices, things that have gone well,
12:01
Speaker 2: or what sort of pushes you to doing this kind
12:03
Speaker 2: of community engagement, because that's a lot of work, right
12:05
Speaker 2: as opposed to I mean, nobody will very few people
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Speaker 2: read the end user license agreement right, and if you
12:10
Speaker 2: take that approach to you know, I check the box
12:13
Speaker 2: on informed consent. I think this is also a super
12:15
Speaker 2: helpful lesson and point to reflect on for future physicians
12:21
Speaker 2: again in my in my context, who will need to
12:23
Speaker 2: do this with patients? So first the research question, Yeah,
12:28
Speaker 2: it's more time. Why do you do it? How do you?
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Speaker 3: Yeah, definitely it's more time. I think, I think step
12:32
Speaker 3: one for those of us who who work in this
12:35
Speaker 3: field and consider ourselves to be ethicists, you know, one
12:39
Speaker 3: of the things that many of us do is try
12:41
Speaker 3: to understand those processes. So we some some ethicists focus
12:46
Speaker 3: on this as their domain of specialty and they develop
12:48
Speaker 3: frameworks and guides and things like that that can be
12:52
Speaker 3: followed to support engagement processes, and indeed, like some some
12:56
Speaker 3: researchers themselves have embraced this constructive community gaged research to
13:00
Speaker 3: the extent that there are like sub fields within community
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Speaker 3: gage research around community based participatory research where members of
13:08
Speaker 3: the community themselves are actual members of the research team
13:12
Speaker 3: and they informed the development of research questions, the methods,
13:16
Speaker 3: the improvement strategy, all those kinds of things in a
13:18
Speaker 3: way that's very much immersed in the context. And so
13:22
Speaker 3: you can go quite far down that path of being
13:24
Speaker 3: being an engaged researcher if you have the interest in
13:28
Speaker 3: the capacity and sometimes the resources right, because a lot
13:31
Speaker 3: of this does require resources to implement. So there's that,
13:34
Speaker 3: there's that side of it I've done. I did a
13:36
Speaker 3: couple of studies that remind me of with fellows of
13:39
Speaker 3: ours postdoc fellows, one from Zambia, one from Botswana. The
13:45
Speaker 3: colleague from Zambia. He was a veterinary medicine specialist and
13:50
Speaker 3: he was interested in how local livestock keepers in parts
13:54
Speaker 3: of Zambia experienced encounters with researchers who came into their
13:59
Speaker 3: community to draw blood and take samples from their livestock
14:03
Speaker 3: for purposes of doing zoonotic disease or research, and in
14:07
Speaker 3: that process he realized there are a lot of missteps,
14:11
Speaker 3: especially around communication between researchers and these individuals in these communities,
14:16
Speaker 3: which resulted in a lot of confusion. It was like
14:19
Speaker 3: a lot of the encounters they had previously had with
14:23
Speaker 3: professionals were through veterinary systems and where individuals will come
14:27
Speaker 3: and take care of their animals, and so the assumption
14:29
Speaker 3: was that when researchers come and draw blood, they're also
14:31
Speaker 3: doing it for the purpose of caring for those animals,
14:34
Speaker 3: whereas it wasn't directly. There wasn't a kind of direct
14:37
Speaker 3: pathway to benefit as there was typically in that context.
14:41
Speaker 3: So there is a possibility for some misconceptions to arise
14:44
Speaker 3: if we don't take these kinds of additional steps to
14:46
Speaker 3: engage with the community in a way that helps them
14:48
Speaker 3: to understand the nature of the interaction. But what also
14:51
Speaker 3: came out through that was that there was a strong
14:54
Speaker 3: expectation that certain procedures would be followed prior to entruly
14:57
Speaker 3: meant going through trusted individuals. Right, there's a veterinary assistant
15:01
Speaker 3: that's assigned to each district, and you have to engage
15:03
Speaker 3: with them first, and then how that person be a mediator,
15:06
Speaker 3: and there are these things called dip tanks. I learned
15:08
Speaker 3: a lot about veterinary care to this project, more than
15:11
Speaker 3: you'd ever want to know. But those processes were so
15:14
Speaker 3: important to the community to be followed if a researcher
15:17
Speaker 3: wanted to engage there. And then at the end of
15:19
Speaker 3: the day, one thing that they said cloud and clear
15:22
Speaker 3: was that, look, researchers come to us and we never
15:25
Speaker 3: hear back. We don't know what can we learn from it?
15:27
Speaker 3: How can we better take care of animals and to
15:29
Speaker 3: them these animals livestock, they're essentially a bank to them, right,
15:34
Speaker 3: it's a source of a well being, and they're considered
15:37
Speaker 3: almost like family members. They live with them, they sleep
15:39
Speaker 3: next to them, you know. So there are all these
15:42
Speaker 3: interesting dynamics and that plays out in so many different contexts.
15:46
Speaker 3: The other project in Botswana was looking actually at how
15:48
Speaker 3: communities understood researchers, how communities perceived an individual to be
15:54
Speaker 3: respectful when they entered their community. And again I could
15:56
Speaker 3: go into a long story about that, but it's the
15:58
Speaker 3: short of it is that there were a lot of
16:00
Speaker 3: like behavioral manifestations of respect that we're seen to be
16:03
Speaker 3: important in that context. I think you can pull those
16:06
Speaker 3: kinds of analogy lessons over even to the clinical context too,
16:10
Speaker 3: where oftentimes we signal subtly through our behaviors certain kinds
16:15
Speaker 3: of things that may be perceived by certain individuals as
16:18
Speaker 3: disrespectful or respectful. And it's important not to assume, right
16:22
Speaker 3: that your conduct, the way you've been doing things your
16:25
Speaker 3: whole life, in your particular cultural context or whatever it
16:28
Speaker 3: might be, right, is the same way everybody else does things.
16:33
Speaker 3: And so you know, just being aware of that. Entering
16:36
Speaker 3: a room with some kind of curiosity about help people
16:40
Speaker 3: what's important to people? With values they have, what interests
16:44
Speaker 3: they have, what care goals they have? Right, all those
16:46
Speaker 3: things should be linked and address simultaneously to have a
16:50
Speaker 3: positive and effective Really, I would argue care encounter, you
16:53
Speaker 3: want people to be on the same page. You want
16:56
Speaker 3: to be able to say, here's what's going on with you,
16:58
Speaker 3: here's what I recommend, and you want there to be eventually, right,
17:02
Speaker 3: a trusting relationship and trust is rooted part on this
17:05
Speaker 3: foundation of respect and other kinds.
17:09
Speaker 2: The curious person, right, So coming in both, you know,
17:12
Speaker 2: with a certain amount of humility, and understanding, but also
17:14
Speaker 2: that curiosity I think is yeah, it is important. So
17:19
Speaker 2: let me shift a little or sort of continue down
17:21
Speaker 2: some of the big global health questions and thinking about
17:24
Speaker 2: your interests. Also in digital technologies, disease surveillance is a
17:29
Speaker 2: very common topic. Question We talked about this in class
17:33
Speaker 2: as well, and potential impacts for digital technology, whether it's
17:36
Speaker 2: tracing apps or whatever it is. For folks who are
17:39
Speaker 2: less familiar with this space, could you comment and weigh
17:43
Speaker 2: in on potential upsides of digital technology or they're more
17:47
Speaker 2: sophisticated tech that you're aware of, prediction modeling, all that
17:50
Speaker 2: kind of stuff, and what the potential benefits are if
17:53
Speaker 2: you see ethical concerns, I mean, just sort of the
17:55
Speaker 2: hot take on disease surveillance and a global world in
17:59
Speaker 2: light of emerging technology.
18:01
Speaker 3: Yeah, so this is this is an area where I've
18:03
Speaker 3: over the years become more and more kind of excited
18:05
Speaker 3: in ways. There are some concerns and some work that
18:07
Speaker 3: I have done to try to identify and then try
18:10
Speaker 3: some of the ethical issues that are emerging. But be
18:13
Speaker 3: clear from the start that I think there's a lot
18:15
Speaker 3: here that has a lot of real potential for benefit
18:18
Speaker 3: for society when during the pandemic with colleagues, we did
18:23
Speaker 3: some work around digital contact tracing apps, and that's that's
18:26
Speaker 3: one sort of face of this, right, is how new
18:30
Speaker 3: technology is entering into public health spaces, especially around disease
18:34
Speaker 3: response and monitoring and surveillance in ways that can could
18:38
Speaker 3: be helpful to public health response. One of the things
18:42
Speaker 3: we realize, though at least in the United States, around
18:44
Speaker 3: the introduction of those kinds of technology capabilities is that
18:47
Speaker 3: they were mediated by we all know very well by
18:50
Speaker 3: large digital tech companies that own the backbone. They own
18:53
Speaker 3: the platforms and the infrastructure that some of it that
18:57
Speaker 3: was being used for these products, and they have their
19:01
Speaker 3: own interests, right. They have interest in preserving and growing
19:05
Speaker 3: your consumer base and maintaining their brand image and things
19:08
Speaker 3: like that, right, which might lead them towards creating products
19:12
Speaker 3: that have particular features or don't have particular features, because
19:16
Speaker 3: in the case of Apple, Google, they wanted to make
19:19
Speaker 3: sure they were maximally privacy preserving, which is generally a
19:22
Speaker 3: good thing, right in the context of a pandemic where
19:25
Speaker 3: there's a lot of uncertainty and where you're needing a
19:27
Speaker 3: traditional odd contact tracing methods are not necessarily entirely privacy preserving, right,
19:33
Speaker 3: you need private information. You need to be able to
19:36
Speaker 3: work with that in order to be able to do
19:38
Speaker 3: the work properly, so that you know who to contact
19:41
Speaker 3: and who to follow up with, and those kinds of things.
19:43
Speaker 3: These platforms are designed in a way where it didn't
19:45
Speaker 3: provide that kind of information to public health officials, so
19:48
Speaker 3: it had some limited utility from a public health perspective.
19:52
Speaker 3: So there is this need right to kind of bine
19:55
Speaker 3: the technology capability, the public health needs, the performanceacteristics and
20:00
Speaker 3: evaluation components, and of course the ethics and legal and
20:03
Speaker 3: policy elements altogether in order for this to work well.
20:07
Speaker 3: I've been working also with other colleagues around large scale
20:10
Speaker 3: mobile phone based surveys to try to reach populations that
20:14
Speaker 3: you know in ways that traditional health household surveys have
20:16
Speaker 3: in the past, around noncommutable disease risk factors and things
20:20
Speaker 3: like that, kinds of surveys that usually were only done
20:22
Speaker 3: every seven years or so by WHO because they're really
20:25
Speaker 3: costly and take a lot of resources and personnel to implement.
20:28
Speaker 3: And the idea is you could scale it up and
20:31
Speaker 3: make it much more rapid, easy to conduct using mobile
20:34
Speaker 3: phone surveys where you automatically dial out to populations and
20:37
Speaker 3: ask questions similar kinds of questions, very very promising. Builds
20:42
Speaker 3: on other kinds of techniques that have been used in
20:44
Speaker 3: other context commercial context, public opinion polling, things like that.
20:49
Speaker 3: So what you see again is this kind of crossover
20:51
Speaker 3: of technology capabilities that existed previously in one space and
20:55
Speaker 3: bring that over into a health context. Again, with contact tracing,
20:59
Speaker 3: that was similar story. I think some of those technology
21:02
Speaker 3: proximity based detection capabilities were there before, and like dating
21:06
Speaker 3: apps and things like that, where people just right, there's
21:09
Speaker 3: some kind of social value annoying who's around you. So's
21:12
Speaker 3: that's really an interesting underlying trend here, I think in
21:16
Speaker 3: these spaces. But when you move into the health space,
21:19
Speaker 3: where information might be a little bit more sensitive or
21:21
Speaker 3: you know, there's ways in which the surveillance right component
21:26
Speaker 3: of this can be a little bit worrisome for people. Yeah,
21:29
Speaker 3: an infrastructure that allows people to really monitor locations potentially right,
21:36
Speaker 3: which could be sensitive in some instances for an individual
21:39
Speaker 3: or even for a business. Right if you imagine during
21:42
Speaker 3: a pandemic, if the location or region or a business
21:46
Speaker 3: or a neighborhood gets identified as a hot spot and
21:49
Speaker 3: people stop going there, and then the business might suffer
21:51
Speaker 3: and other things might happen, might become stigmatized. So it's challenging. Yeah,
21:57
Speaker 3: but there are other questions, right, There's like who builds tools?
22:00
Speaker 3: Where do the data go? What about secondary use? Yeah,
22:04
Speaker 3: prediction modeling. I think that's a new area that is
22:08
Speaker 3: with AI right heading in all sorts of new directions
22:12
Speaker 3: that have the potential again to produce benefit. I was
22:14
Speaker 3: involved with a meeting a few years ago organized by
22:18
Speaker 3: the around AI Ethics where one of the questions that
22:22
Speaker 3: kept coming up there is this question like are we
22:27
Speaker 3: building tools that are probably designed to address the problem
22:31
Speaker 3: that we have at hand, or or you just kind
22:33
Speaker 3: of following new cool widgets and using those with the
22:38
Speaker 3: hope that they might solve all our problems, but in
22:40
Speaker 3: fact what we need is something else. And so I think, yeah,
22:43
Speaker 3: it's sometimes the answer isn't the technology right and we
22:47
Speaker 3: can do things more efficiently. That's what all technology does.
22:50
Speaker 3: It brings the potential for efficiency the processes. But sometimes
22:55
Speaker 3: the ethical move is a little bit more about restraint
22:58
Speaker 3: and or identifying which populations are being left out and
23:02
Speaker 3: making sure that if we're saving resources by using new
23:05
Speaker 3: technology solutions, we're also allocating those saved resources to those
23:09
Speaker 3: who aren't being served by those capabilities. So there's lots
23:13
Speaker 3: of issues there. Of course, a bigger picture like governance gaps.
23:16
Speaker 3: We tend to load a lot onto ethics committees in
23:19
Speaker 3: the technology space. I'm not sure all of that is
23:22
Speaker 3: well placed, so we need to think creatively about that
23:24
Speaker 3: going forward.
23:25
Speaker 2: Yeah, I mean there's so much that I think every
23:28
Speaker 2: question I've asked you is just inappropriately large. And you know,
23:32
Speaker 2: there's and lyrics on this, so I appreciate it because
23:35
Speaker 2: the ten thousand foot view or whatever is really really
23:38
Speaker 2: helpful and for folks interested in these kinds of questions
23:41
Speaker 2: who have been listening to the podcast for the while,
23:43
Speaker 2: they may recall back during the pandemic, we actually had
23:46
Speaker 2: a long interview with Hunt tracked tracer from New York
23:48
Speaker 2: City starting to think about some of these questions, not
23:51
Speaker 2: to the level we've done here, but it's really interesting,
23:55
Speaker 2: and I think, from your perspective, interesting to think about
23:59
Speaker 2: values of different persons in different cultures, because I imagine
24:02
Speaker 2: some of the privacy concerns, some of the confinentiality concerns,
24:06
Speaker 2: which are classic research ethics questions, right, I mean, even
24:09
Speaker 2: before tact and even in small context it depends on
24:13
Speaker 2: where you are and what folks values are. I mean,
24:16
Speaker 2: I in some places, and we talked a little bit
24:18
Speaker 2: about like it's of course more nuanced, but you know,
24:21
Speaker 2: in the US and certain places in North America, maybe
24:23
Speaker 2: there's more of an individualism or a privacy concern than that.
24:26
Speaker 2: Just to that if you have a more communal or
24:29
Speaker 2: community based ethic, maybe there are fewer concerns. So realizing
24:33
Speaker 2: maybe this will get around to a question how you
24:36
Speaker 2: realize those values. I mean, this is terrifically interesting, right
24:39
Speaker 2: because it was different in some contexts, and then creating
24:43
Speaker 2: concrete policies that will be useful whatever the government structure is.
24:47
Speaker 3: Yeah, No, it's it's it's it's a big it's a
24:50
Speaker 3: big topic. It's about values, about pistemology, right, like what
24:53
Speaker 3: what counts as knowledge in the first place. You know,
24:56
Speaker 3: biomedical models carry their own kind of assumption accounts about
25:00
Speaker 3: how the world works and what matters when it comes
25:03
Speaker 3: to defining evidence, and those kinds of things are very
25:06
Speaker 3: very powerful models. But it's obviously not the only frame
25:09
Speaker 3: where people use to understand themselves in the world and
25:12
Speaker 3: health and illness and the body and all those kinds
25:14
Speaker 3: of things. So it is important, right for even for
25:19
Speaker 3: those who are working in biomedical spaces to really recognize
25:23
Speaker 3: that and take it seriously. You know, there's the more
25:26
Speaker 3: traditional ways of knowing and spiritual ways and community health
25:29
Speaker 3: beliefs and the like, and global health. If I'm sort
25:33
Speaker 3: of type casting a little bit, hasn't always had this
25:35
Speaker 3: kind of habit of treating those other frameworks as as
25:40
Speaker 3: fully legitimate. Oftentimes they're seen as obstacles to getting things done,
25:44
Speaker 3: or superstitions that need to be educated away, or things
25:47
Speaker 3: like right. And there are times where where they have
25:49
Speaker 3: been quite problematic, where there's serious examples of bates denial
25:54
Speaker 3: and of you know, pushing people into treatment pathways that
25:58
Speaker 3: are completely not supportive and harmful indeed to communities. So
26:03
Speaker 3: it's a tough balance to strike, you know. I have
26:05
Speaker 3: another post doc fellow working with me now from Uganda
26:08
Speaker 3: who's Bitter PhD. On genomics and community engagement in the
26:13
Speaker 3: genetics and genomics Contextion is now doing some work in
26:16
Speaker 3: the AI world looking at engagement practices and how Indigenous knowledge,
26:22
Speaker 3: AI and TB care intersect in really interesting ways, and
26:26
Speaker 3: we need ethics frameworks to guide that. Right instead of
26:29
Speaker 3: just coming into a community and saying, look, i've got
26:31
Speaker 3: this new tool. You can integrate it into a smartphone
26:34
Speaker 3: really easily, and it's going to help you do a
26:36
Speaker 3: screening for TV by having people cough or whatever it
26:38
Speaker 3: might be, right into the phone. I don't know if
26:40
Speaker 3: that's a great idea, but that that could work. But
26:43
Speaker 3: you know, there might be other indicators of disease that
26:46
Speaker 3: the community tracks that biomedicine doesn't always track, that might
26:50
Speaker 3: even provide precursor knowledge, right or whatever it might be,
26:53
Speaker 3: that that could be helpful to engage with, not only
26:56
Speaker 3: because you know it'll allow you to to more readily
26:59
Speaker 3: integrate in align with those communities that you're trying to
27:02
Speaker 3: engage with, but also because it could advance our scientific
27:06
Speaker 3: knowledge an interesting way. So that's all really important and valuable.
27:10
Speaker 3: And to recognize that those systems, those knowledge systems as
27:13
Speaker 3: ways of knowing and doing have a pre existed scientific method.
27:17
Speaker 3: So that's kind of how I think about it. These
27:20
Speaker 3: are hard issues, right balancing that we have to do,
27:23
Speaker 3: and it takes again like the engagement piece and really
27:26
Speaker 3: focusing on being bi directional in that process to be
27:29
Speaker 3: able to surface those different ways of dealing with these issues.
27:33
Speaker 2: Yeah, and I want to pick up on the bi directionality.
27:36
Speaker 2: But first, folks interested in any of the projects that
27:40
Speaker 2: Joe's mentioned, Well, I'll follow up separately, and if any
27:43
Speaker 2: of these have been published recently as the papers, we'll
27:45
Speaker 2: get them in our show notes page or links to
27:46
Speaker 2: where people are working. That would be great, Just so
27:48
Speaker 2: folks are interested can read more think about the by
27:53
Speaker 2: directionality and the just sort of broadly being the collaboration
27:58
Speaker 2: in global health and in ethics in research. I'm not
28:02
Speaker 2: sure how to ask this question, so it's well posed,
28:05
Speaker 2: but thoughts on the current state of research in light
28:10
Speaker 2: of the socio political situation or situations we're in across
28:15
Speaker 2: the globe. So, yeah, the recent and there's a host
28:18
Speaker 2: of cases that could be used to illustrate this. The
28:20
Speaker 2: recent a bull outbreak. Some folks have pointed to a
28:24
Speaker 2: lack of certain kinds of resources and surveillances that had
28:27
Speaker 2: been in place previously, but funding was pulled I think
28:31
Speaker 2: primarily from the US. But so, I guess the way
28:32
Speaker 2: to ask the question is to think about, if we
28:35
Speaker 2: really are all engaged in a global world, how to
28:39
Speaker 2: sort of do good work in research globally when the
28:44
Speaker 2: political funding other kind of support mechanisms are moving or amaleable.
28:48
Speaker 3: It's it does feel like we're in a bit of
28:50
Speaker 3: a precarious moment, right, Yeah, there's there are like for
28:54
Speaker 3: decades right that the post war World War two that
28:58
Speaker 3: is like consensus on research at which you know, we
29:01
Speaker 3: will commonly talk about the Nuremberg Code, which merged out
29:04
Speaker 3: of that context declaration and it'll sinky the Belmont Report,
29:08
Speaker 3: Ciome's guidelines, that whole like architecture, right assume some kind
29:12
Speaker 3: of basic commitment to international cooperation, like it was found
29:15
Speaker 3: in this idea that when countries, institutions, et cetera go
29:20
Speaker 3: off on their own and do things, there's a risk
29:22
Speaker 3: there and we need international cooperation as part of that
29:26
Speaker 3: response to protect research participants in this kind of shared
29:30
Speaker 3: global responsibility. And a lot of that scaffold thing is
29:33
Speaker 3: under like strain right now. It feels for many people
29:35
Speaker 3: right when major funders withdraw international coordinating bodies are pulled
29:40
Speaker 3: out of you know, the US, for example, the who
29:43
Speaker 3: That's not just a question of like logistics. It's it's
29:46
Speaker 3: about like, what are the ethics in relation to those
29:49
Speaker 3: foundations again that have existed for for a long time,
29:53
Speaker 3: So I worry about that. I also worry, as you
29:56
Speaker 3: said earlier. You know, I've spent about twenty years almost now,
29:59
Speaker 3: working on with other colleagues to try to help build
30:02
Speaker 3: systems and strength and capacity to do bioethics and research
30:06
Speaker 3: ethics work around the world. And the US has invested
30:09
Speaker 3: significantly in that because we do research around the world
30:12
Speaker 3: and we learn from that, we gain from that, and
30:14
Speaker 3: not just about infectious disease transmission, that as important as
30:17
Speaker 3: that is, and making sure that control outbreaks, but it's
30:20
Speaker 3: it's also about making sure that the best knowledge is
30:23
Speaker 3: coming from places where it needs to come from, and
30:26
Speaker 3: the brightest people are capable of working together to solve
30:28
Speaker 3: the world's biggest problems. Like that takes a global effort,
30:32
Speaker 3: and we need global systems of governance and shared understandings
30:35
Speaker 3: around ethics to be able to do that well. So
30:38
Speaker 3: that's that's very important. I worry that that's taken a
30:41
Speaker 3: lot of work to build all those relationships and capabilities.
30:44
Speaker 3: And they can grumble, right, they aren't as resilient. I
30:49
Speaker 3: think as we think sometimes you know, the Ebola. The
30:52
Speaker 3: Ebola example is one where we have to be careful,
30:55
Speaker 3: right there's we can't make cause of claims and things
30:58
Speaker 3: like that. It's a complex issue. We're obviously in the
31:01
Speaker 3: middle of a large, relatively large outbreak in Eastern Democratic
31:05
Speaker 3: Republic DRC and to some extent neighboring countries. Though it's
31:09
Speaker 3: interesting to see what's happening geopolitically to those neighboring countries.
31:12
Speaker 3: There are a lot of people from those countries are
31:15
Speaker 3: being treated in ways that that might be seen as
31:17
Speaker 3: unfair when it comes to being able to travel, get visas,
31:20
Speaker 3: things like that. But there was some delay right in detection.
31:23
Speaker 3: Initially it was a relatively rare strain of the bullet
31:27
Speaker 3: is relatio rare strain. But there were a couple hundred
31:30
Speaker 3: people who had been infected I think maybe around eighty
31:32
Speaker 3: who had died by the time that detection really was formalized,
31:36
Speaker 3: and it's it's again it's hard to establish causal links.
31:40
Speaker 3: There were challenged because it was new strained with with
31:43
Speaker 3: testing locally, so I think testing had to be done
31:48
Speaker 3: maybe in Conchessta instead of in the region where where
31:50
Speaker 3: they outbreak occurring. Obviously, there were a lot historically, right
31:54
Speaker 3: there had been humanitarian programs and aid workers in the region.
31:57
Speaker 3: That was a region that had been known to have
31:59
Speaker 3: conflict and continues to have conflict, and so there were
32:02
Speaker 3: a lot of humanagement workers who were kind of they're
32:05
Speaker 3: providing all sorts of services. But also part of that
32:08
Speaker 3: was was a kind of secondary system of surveillance in effect,
32:13
Speaker 3: where cases could be detected and and responses could be
32:17
Speaker 3: moved forward quickly. And again, lots of pullback on funding
32:21
Speaker 3: for USA D and or other organizations that were supporting
32:23
Speaker 3: these entities. That led to withdrawals from the region and
32:28
Speaker 3: it degraded some of that you know, secondary surveillance and
32:32
Speaker 3: coordination infrastructure. I don't know. I mean, I think it's
32:35
Speaker 3: it's a tough situation. You know, again, there's there was
32:37
Speaker 3: local there is local capacity to tests with. We're all
32:40
Speaker 3: of support didn't help. They remove some kind of redundancy
32:43
Speaker 3: from the system, and we need to make sure we're
32:46
Speaker 3: building resilient systems and trustworthy systems really, and so you
32:51
Speaker 3: don't you don't want to detect outbreaks when it's too late,
32:55
Speaker 3: or obviously don't want don't want to make commitments that
32:59
Speaker 3: are you don't follow through on, and other issues relating
33:02
Speaker 3: to more fundamentally, again going back to the initial point,
33:05
Speaker 3: we need, we need to make use of and continue
33:08
Speaker 3: to build the capacity that we need in order to
33:10
Speaker 3: be able to respond to these global health needs in
33:13
Speaker 3: a way that's considered ethical and ethics isn't again just
33:16
Speaker 3: about doing the checking the box or the checking the
33:19
Speaker 3: boxes and the research ethics sense, but it's also about
33:22
Speaker 3: all these other things that we're continuing to maintain, the
33:24
Speaker 3: strong relationships that are needed in order to have effective response.
33:29
Speaker 2: Very helpful, and I appreciate the nuance as I sort
33:31
Speaker 2: of sloppily suggested we could make a quick and easy
33:34
Speaker 2: causal clamming, but you got to exactly what I was
33:37
Speaker 2: interested in, and it's in asking the question and sort
33:40
Speaker 2: of just highlighting how I mean there are so many
33:43
Speaker 2: different moving parts. And then quickly too, and of course
33:46
Speaker 2: there are a host of ethics questions and considerations, but
33:51
Speaker 2: sort of quickly too if you're engaged in an agreement
33:54
Speaker 2: or relationship, if there are reasonable expectations for certain kinds
33:58
Speaker 2: of collaboration, and then very quickly right and usadas in
34:02
Speaker 2: the back of the month, things are pulled, are there
34:05
Speaker 2: are challenges there and just sort of sort of thinking
34:09
Speaker 2: about research work across the globe. And I will so
34:13
Speaker 2: because I spend my day with medical students. So medical
34:15
Speaker 2: students are very very concerned now that there will be
34:20
Speaker 2: some new algorithm when they are practicing which tells them
34:23
Speaker 2: to tell a patient something, but they don't really understand
34:26
Speaker 2: it right and they don't know. So they're concerned about
34:28
Speaker 2: informed consent in light of like not being able to
34:31
Speaker 2: fully explain to patients what's going on. I imagine and
34:34
Speaker 2: tell me if there's a bad analogy, I imagine that
34:38
Speaker 2: researchers across the globe not knowing what all the funding
34:42
Speaker 2: and other levers are going to be. I mean, you're built.
34:45
Speaker 2: You want to build resilient systems. You want to build
34:47
Speaker 2: trustworthy systems. Trust is key, But are you going might
34:52
Speaker 2: a researcher put participants or a population or members of
34:56
Speaker 2: a community that they become embedded with in a bad
34:58
Speaker 2: situation because they lose? So I'm dancing right, Yeah.
35:03
Speaker 3: Well, that's that's that's an important thing, right. I Mean,
35:05
Speaker 3: we have these kind of basic duties of care, whether
35:08
Speaker 3: it's in a research context or a clinical context, and
35:12
Speaker 3: it gets it's it's a lot more straightforward in a
35:15
Speaker 3: clinical care context, right, where where in soft goal ethics perspective,
35:20
Speaker 3: the clinicians almost sole duty of care other than to themselves, right,
35:24
Speaker 3: is to that patient who's sitting across from them. And
35:28
Speaker 3: so the kinds of advice they give and recommendations and
35:33
Speaker 3: treatment pathways they pursue with that patient, again, they're all
35:37
Speaker 3: in service of that individual. Research gets a little bit trickier, right,
35:41
Speaker 3: because it's it's generally tends to be focused more to
35:44
Speaker 3: population level collective level. Are the researcher has an obligation
35:48
Speaker 3: to that individual research participant, but they're also committed to
35:52
Speaker 3: generating generalizable knowledge, right, information that will be beneficial to
35:56
Speaker 3: other people who are like that individual in the future.
35:59
Speaker 3: And and so that kind of divided commitment complicates things
36:03
Speaker 3: in all sorts of ways. But it doesn't mean that
36:05
Speaker 3: we can just pull out right and say, Okay, well, really,
36:09
Speaker 3: what I cared about all the time was generating knowledge,
36:12
Speaker 3: and so when my funding goes away, I can just
36:15
Speaker 3: pull out without any kind of individual right. We have
36:18
Speaker 3: to consider that harm. And indeed, there have been a
36:21
Speaker 3: lot of harms that have come to research participants into
36:24
Speaker 3: communities as a result of withdrawals, and that are problematic.
36:28
Speaker 3: So it's you know, sometimes I think about these issues
36:31
Speaker 3: as from an ethics perspective. Sometimes the issues that engage
36:34
Speaker 3: me the most and DRAWMA and the most of the
36:36
Speaker 3: ones where we generally have room for disagreement, and I
36:40
Speaker 3: think there is a little bit of room here for
36:42
Speaker 3: that doesn't feel that way, right, It feels like there's
36:45
Speaker 3: there could have been a much better approach, let's say,
36:48
Speaker 3: to re envisioning and reconstructing USAID than the approach that
36:52
Speaker 3: was taken. And so I would I have liked to
36:55
Speaker 3: see that. Yeah, sure, I would have liked to have
36:57
Speaker 3: seen a clear articulation of the problems first, right, and
37:01
Speaker 3: then some consensus process. And I think the process is important, right.
37:06
Speaker 3: People have to trust the process in order for whatever
37:09
Speaker 3: comes after it to be followed and valued and used
37:13
Speaker 3: in whatever it right, So you need some kind of
37:15
Speaker 3: legitimate process that's followed in order to reformulate struct right now, Again,
37:24
Speaker 3: for many of us, it feels like we're in a
37:27
Speaker 3: destructive state, and maybe we're looking forward to thinking about
37:30
Speaker 3: what reconstruction and for Again, in some for some you know,
37:35
Speaker 3: that's an opportunity. It's an opportunity to think about what matters,
37:39
Speaker 3: and how do you design systems around what matters, acknowledging
37:43
Speaker 3: that there are flaws, there are work laws and all
37:45
Speaker 3: this right, but it's it's hard to take those next
37:48
Speaker 3: steps when there isn't stability in a system. And I
37:51
Speaker 3: think that's what a lot of people are struggling with
37:54
Speaker 3: right now is who create stability right and how? And
37:58
Speaker 3: so oftentimes and somewhat familiar with different political contexts where
38:04
Speaker 3: where there are more or less dictatorial governance models, et cetera,
38:08
Speaker 3: sometimes you just have we have to look at within
38:12
Speaker 3: right and look at communities and see where communities derive
38:15
Speaker 3: their resilience in their legitimacy, and and try to do
38:20
Speaker 3: a little bit more of a bottom up approach to reconstruction.
38:22
Speaker 3: And that's it's how our country in ways we founded
38:26
Speaker 3: and really I think, you know, it's a big, big picture,
38:29
Speaker 3: but I think we need we need to return to
38:32
Speaker 3: what's common amongst people and and what people care about
38:37
Speaker 3: within institutions and identify again where there are problems and
38:42
Speaker 3: try to reconstruct in a way that that designs towards
38:47
Speaker 3: those kinds of goals that we agree are important.
38:49
Speaker 2: That's just sort of wonderfully full circle of thinking about
38:52
Speaker 2: the collaborations and the commonality. So I'll get you out
38:55
Speaker 2: on this one last question, which is for folks who
38:59
Speaker 2: enjoyed the conversation, we're interested in your work, interested in
39:01
Speaker 2: the work you're doing with some of your post doctor fellows.
39:04
Speaker 2: What's next? Is there a big project, big talk, you've given,
39:07
Speaker 2: big paper, interesting, you know. So for folks who want
39:10
Speaker 2: to hear more from you, where could they turn.
39:13
Speaker 3: There are a few different platforms that I'm involved with
39:16
Speaker 3: that I would encourage folks to engage with if they
39:18
Speaker 3: have an interest. First, there's a collaborative network that's called GLIDE.
39:23
Speaker 3: It's a global Infectious Disease Ethics Network, which is where
39:27
Speaker 3: a lot of the kind of outbreak and surveillance and
39:30
Speaker 3: again infectious disease ethics thinking and research and work is
39:34
Speaker 3: happening in my world. CO host the conference every year
39:37
Speaker 3: in the Oxford University in July. That's a great gathering
39:41
Speaker 3: of people from around the world health and ethics and
39:44
Speaker 3: a lot of great products that are emerging out of that.
39:47
Speaker 3: We're excited about that. I think I'm also really excited
39:52
Speaker 3: about work that's happening with colleagues in Ethiopia. We have
39:55
Speaker 3: a collaborative STURS program. We are creating capabilities and policies
39:59
Speaker 3: at a national little and supporting mentoring and networked the
40:03
Speaker 3: country with other institutions to build bioethics capacity again, host
40:07
Speaker 3: an annual conference, and do a lot of other cool things.
40:10
Speaker 3: So yeah, I think that's that's something where I'm keen to,
40:15
Speaker 3: you know, continue and look for additional opportunities and collaborators.
40:18
Speaker 3: People are interested in doing that kind of work. I
40:20
Speaker 3: also collaborate with folks in Malaysia. We with a co
40:23
Speaker 3: author a co editor, recently published an open access volume
40:27
Speaker 3: of cases. It's a case series and research ethics. If
40:30
Speaker 3: people are interested in that. It's called Cases in Bioethics,
40:34
Speaker 3: Health Research Ethics in Southeast Asia and contains around seventy
40:38
Speaker 3: cases that were written by methicists and practitioners from the region.
40:43
Speaker 3: It's great to dig in a little bit more into
40:46
Speaker 3: real world ethics cases that are emerging that in that
40:50
Speaker 3: part of the world. I'm involved with some other groups,
40:53
Speaker 3: including for a group on AI ethics, and I think
40:55
Speaker 3: there's some there's some good work coming out of that,
40:57
Speaker 3: and some really challenging issues there too, including as we
41:01
Speaker 3: discussed a little bit earlier, like what what is the
41:03
Speaker 3: model for governance need to look like going forward? You know,
41:07
Speaker 3: we research ethics committees and stitutional review boards do a lot.
41:11
Speaker 3: There are some critiques out there of institutional review boards,
41:14
Speaker 3: of course, but a lot of that I think stems
41:16
Speaker 3: from the fact that we tried. We tend to pile
41:18
Speaker 3: a lot into their onto their plate, and and AI
41:21
Speaker 3: is one of those areas where there are some applications
41:25
Speaker 3: where straightforward in traditional way for exact system it's not generative,
41:29
Speaker 3: et cetera. But we're seeing all sorts of new things
41:32
Speaker 3: coming forward that really push the model. And so we
41:35
Speaker 3: need to think about what what does governance look like?
41:37
Speaker 3: And I'm really keen to do that, olleague. So how
41:40
Speaker 3: do we how do we define and measure those kinds
41:42
Speaker 3: of systems of governance around emerging technology? And then lastly,
41:48
Speaker 3: more broadly, you know, as we go through this period
41:51
Speaker 3: of transition for lack of a better word, in global health,
41:53
Speaker 3: I think it does force us to think a little
41:55
Speaker 3: bit more about what matters again, like what is what
41:58
Speaker 3: does meaningful impact look like? International collaborative partnership and research
42:02
Speaker 3: and practice and aligning again the indicators of impact and
42:07
Speaker 3: the systems that measure that, and the incentives and the
42:10
Speaker 3: disincentives with those those things that we've determined matter. So
42:15
Speaker 3: so figure out again bring in full circle engagement processes
42:18
Speaker 3: that allow for impact to be defined clearly with communities
42:23
Speaker 3: who are stand to benefit from these activities, and then
42:28
Speaker 3: you know, making sure that our systems work towards that,
42:31
Speaker 3: that we're counting the right things that we're not just
42:33
Speaker 3: saying publications are the most important, her grants are the
42:36
Speaker 3: most importantly right from the institutional perspective. But no, it's
42:40
Speaker 3: about it's about producing positive outcomes that are desired by
42:43
Speaker 3: individuals in communities and being able to demonstrate that and
42:47
Speaker 3: hold ourselves accountable to those kinds of commitments. So that's
42:51
Speaker 3: a line of work that I'm really interested in doing
42:53
Speaker 3: going forward and making sure that what we're doing matters.
42:56
Speaker 2: That's great, and we'll make sure we have links to
42:58
Speaker 2: all of that in our in our show page. Joe,
43:01
Speaker 2: thanks so much for joining me today.
43:03
Speaker 3: I really appreciate it. My pleasure. Brian, Brian, thanks for
43:06
Speaker 3: inviting me.
43:06
Speaker 2: Thank you all for listening.
43:08
Speaker 3: Again.
43:08
Speaker 2: I am Brian Pilkington, Professor at the Hackensag Maritan School
43:12
Speaker 2: of Medicine, and it was great to chat with Professor
43:14
Speaker 2: Joseph ah Lee of Johns Hopkins about research ethics, global
43:18
Speaker 2: health and a host of other issues. Series is a
43:22
Speaker 2: production of the Health Ethics Lab, and I am grateful
43:24
Speaker 2: to colleagues in the Department of Medical Sciences, the IHS
43:28
Speaker 2: Library and the Hackensack Britian School of Medicine for making
43:31
Speaker 2: this collaboration possible. To learn more about our work or
43:34
Speaker 2: to engage with the series content, reach out to me
43:37
Speaker 2: Brian Pilkington at Brian dot Pilkington at HMHM dot org.