Beyond the Sequence: People, Pathogens, and Power Dynamics

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The cutting edge of infectious disease control isn't just about vaccines or treatments—it's increasingly about data. Dr. Stephen Molldrem, Assistant Professor at the Institute for Bioethics and Health Humanities, takes us deep into the world of pathogen genomics and the remarkable ethical questions that emerge when we sequence disease-causing microorganisms.

What happens when genetic analysis can potentially reveal who infected whom with HIV? Why do some communities welcome these technologies while others resist them? From the controversies surrounding HIV surveillance in America to the enthusiastic adoption of TB genomics in Botswana, Dr. Molldrem reveals how the same scientific tools can take on dramatically different meanings depending on context, trust, and community involvement.

The COVID-19 pandemic accelerated the global adoption of pathogen sequencing, bringing terms like "variants" and "mutations" into everyday conversation. But this technological revolution has also revealed deep inequities—when South African scientists identified the Omicron variant and transparently shared this information, their reward was travel bans rather than support. This pattern reveals how scientific advancement doesn't happen in a vacuum but within complex social and political realities.

At the heart of Dr. Molldrem's work is a fundamental reminder: behind every genetic sequence is a person, a community, and a set of lived experiences. As one HIV advocacy slogan puts it, "We are people, not clusters." The challenge for public health isn't just implementing new technologies but doing so in ways that respect human dignity and build rather than undermine trust.

Whether you're fascinated by the science of disease tracking, concerned about health privacy, or interested in how new technologies reshape our understanding of outbreaks, this episode offers a thought-provoking journey through the socio-technical landscape of modern infectious disease control. Join us as we explore what happens when cutting-edge science meets complex human realities.

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Episode Transcript

Speaker 2 (00:09):
This is a podcast about One Health the idea that
the health of humans, animals,plants and the environment that
we all share are intrinsicallylinked.

Speaker 1 (00:17):
Coming to you from the University of Texas Medical
Branch and the GalvestonNational Laboratory.
This is Infectious Science.
Where enthusiasm for science?
Is contagious.

Speaker 3 (00:30):
Welcome back to the Infectious Science podcast.
We are excited to be back here.
We have Christina and we haveCamille.
How are you guys doing?

Speaker 4 (00:39):
Doing well.
We're hanging in there.
Yeah, it's been a lot, it'sbeen a big beginning of the year
and we're coming to the closeof our academic year, and so
it's just everything's piling up, but we're getting there.

Speaker 3 (00:53):
Christina, since we're coming to the end of
season number two of theInfectious Science Podcast,
we've gained quite a few newfollowers.
Let's do some introductionsLike who are you, christina?

Speaker 4 (01:05):
I am Christina Rios.
I am a second year medicalstudent here at the UTMB School
of Medicine.
I am originally from SanAntonio, texas, and I love my
hometown very much.
I am of Latino descent and I'mvery proud of that.
I'm a daughter, I'm a sister, Iam an aspiring scientist and

(01:29):
physician, and I love animals.

Speaker 3 (01:34):
Camille, who are you?

Speaker 5 (01:37):
Not as good of an intro as Christina.
Yours is much better.
I'm Camille Adu.
I'm one of your co hosts.
Thanks for listening in toInfectious Science.
We appreciate all of ourlisteners and it's always great
to hear from everyone who's beenreaching out.
I am coming to the end of myacademic journey.
I'm defending next month.

Speaker 3 (01:55):
So right now, as we record this it's January 31st
2025.

Speaker 5 (01:58):
2025.
And I am very excited to defendnext month.
You must be so proud.
I am so proud and also sostressed.
But we're getting there and I'mreally excited.
When I am not in the lab orwriting my dissertation, I'm
reading a lot.
I think my book count so farfor the year is at 11 books, so
we've restarted again.

Speaker 3 (02:19):
What was it last year ?

Speaker 5 (02:20):
Oh, what did I finish out at?

Speaker 3 (02:22):
That is a great question.
Oh, it was more than a hundred.

Speaker 5 (02:24):
Yeah.

Speaker 6 (02:25):
Let's see.

Speaker 5 (02:25):
What did I end up with for 2025?
I'd just like to preface thisby saying I think it was like
January 2nd, that Camille sentDennis and I a text that she had
finished her first book of theyear.

Speaker 3 (02:39):
That is true.
Yes, last year was 127 books,and I yelled at my phone when I
got the text because I wish Ican finish a book in three
months.

Speaker 5 (02:45):
Yeah, so last year I read 127 books.
This year I'm hoping to do more, because I will not be spending
as much time in grad school, soI'm excited to finish and start
my work as a medical writer.

Speaker 4 (02:55):
Amazing, who are you?
Yeah, dennis, you're lookingvery snazzy today.
Reintroduce yourself, just foryou guys.

Speaker 3 (03:01):
Hi, I'm Dennis Bent.
I'm a professor of microbiologyand immunology and I'm a German
.
I'm a man, a son, and what elsedid she say, christina?
But I'm also very excited totalk about our guest today.
So it's a great pleasure tointroduce Dr Stephen Moldrum.
He's an assistant professor inthe Institute for Bioethics and

(03:25):
Health Humanities and we'vetalked about having him on the
show for quite some time becausehis research is really
interested, and I'm reallyexcited about this episode.
Can't wait to get into it.
Stephen, do you want tointroduce yourself?

Speaker 6 (03:40):
Sure, yeah, thank you .
Thank you so much for theintroduction, dennis, and thanks
so much for having me here onInfectious Science.
I'm looking forward to theconversation we're going to have
.
My name is Stephen Moldrum Iuse he him pronouns, and, as
Dennis said, I'm an assistantprofessor on the Institute for
Bioethics and Health Humanitieshere at the University of Texas
Medical Branch, where theInfectious Science podcast is

(04:02):
recorded, and my research mainlyexists in the field of science
and technology studies, alsopublic health ethics, and I'm an
ethnographer, and so I usemainly qualitative methods and
policy analysis methods, largelyto study the politics of health
data and also of infectiousdisease and the introduction of

(04:24):
emerging technologies intoinfectious disease control, and
I think that's what we'll mainlybe talking about today, but
I'll leave it there.
I have a few other interests too.
I mean sexual and genderminority health, mainly in
regard to data practices, andI'll also say my research is
mostly based in the US, but Ialso have done studies in global
health policy, global mediadiscourses, and also I have an

(04:48):
ongoing project in Botswanarelated to tuberculosis.
My PhD is in American culturethe field is actually called
American Studies, but Michiganhas a strong identity of keeping
the title American Culture andI also have a certificate of
graduate studies in science,technology and society from
Michigan.
And I did a postdoctoralfellowship for two years at the

(05:09):
University of California, irvine, in the Department of
Anthropology, and then I camehere and I've been at UTMB in
the Institute for Bioethics andHealth Humanities for three and
a half years.

Speaker 3 (05:18):
Are you originally from Michigan?

Speaker 6 (05:20):
I am not originally from Michigan.
I traveled around a lot growingup.
I went to undergrad inWashington DC at the George
Washington University.
But yeah, lived many placesgrowing up.

Speaker 5 (05:31):
Very cool.
What is science and technologystudies for our listeners?

Speaker 6 (05:35):
Yeah, science and technology studies is a field
that emerged from the sociologyand anthropology of science and
technology in the 1970s.
That was a heady time for thesocial sciences.
There were a lot of challengesto, for example, institutional
ways of knowing in the sciencesfrom the social sciences that
were really interested in usingthe tools of the social sciences

(05:59):
to understand, for example, howthe quote unquote hard sciences
develop knowledge and then howknowledge takes on material form
in society in the form of, forexample, the formation of
disciplines, the translation ofscientific knowledge into policy
, and so the field that's oftentalked about is this new upstart

(06:20):
field, but it's 50 years old atthis point.
There are different branches ofscience and technology studies.
Of those, I am primarilyprobably working in social
studies of biomedicine andsocial studies of health and
also infrastructure studies.
We use the term insocio-technical a lot, so in
science and technology studies,or STS as I will call it as we

(06:42):
move along is always interestedin thinking about how technology
, the tools that scientists use,are co-mingled with the social
and professional lives ofscientists and how the operation
and maintenance of things likelarge data infrastructures,
which I think about a lot in thepublic health context, are
always bound up with the peoplewho are using and building and

(07:04):
maintaining those systems andthe technologies that they're
using to do so.
A lot of this has actuallybecome diffused throughout the
social sciences and the cultureat this point, but it was a
really radical notion in the 70sand 80s that you could, for
example, treat the emergence andconstruction and use of
scientific facts using the toolsof like sociology and

(07:26):
anthropology and sciencetechnology studies as many
things, and I think we cancontinue to revisit it as we
talk.
Yeah.

Speaker 5 (07:33):
No, I think that's an excellent overview and I
appreciate it as well becauseit's not something people tend
to be like siloed in their field.
So I always appreciate hearingwhat other people are doing and
studying.
So, in regards to like morespecifically, what you're doing,
when we first talked about thisepisode, we really talked about
your work looking at pathogengenomics and pathogen
phylogenetics, and so, before weget into that, I just wanted to

(07:55):
quickly define them for ourlisteners.
Pathogen genomics is the studyof genetic material of
microorganisms that causedisease.
Pathogen phylogenetics is thestudy of how microorganisms
evolve.
It's often used in publichealth to track disease
outbreaks and revealtransmission patterns.
So, with those definitions outof the way, of course, if you
have anything to add to thosedefinitions, I want to hear it.

(08:15):
But could you tell ourlisteners why pathogen genomics
and pathogen phylogeneticsmatter, particularly right now,
like in the present moment?

Speaker 6 (08:23):
Yeah, totally no.
I think those are gooddefinitions of pathogen genomics
as a field.
There are many things that aregathered under that signifier
and pathogen phylogenetics beingboth like a method right that
is used to track pathogenevolution but then also has
specific applications inresearch and public health,
whereas pathogen genomics isn'tnecessarily about pathogen

(08:44):
evolution but can be used in,for example, tracing the
emergence of in surveillance,for example, drug-resistant
variants of pathogens or withinan individual patient, clinical
applications of genomics.
To take a little bit of a stepback in terms of how I got
focused on studying this onstudying this, my work initially

(09:09):
was about the emergence of theapplication of digital
infrastructures and publichealth programs in the United
States, really starting in theperiod after 2009,.
When there was a law passed itwas called the High Tech Act.
That was actually part of the2009 American Recovery and
Reinvestment Act, huge bill,spending bill that digitized the
US healthcare system.

(09:29):
And when I say I'm interestedin emerging technologies and
infectious disease control, itis about pathogen genomics.
But the use of pathogengenomics in routine public
health practice was reallyfacilitated by this much larger
phenomenon, which is thedigitization of the health
system in the United States andhealth systems generally, and
this is something that reallytook off in the 2010s and began

(09:50):
with the process of digitizingelectronic health record systems
, which was a very fascinatingpolicy battle in the United
States, but then also electroniclaboratory reporting
infrastructures to public health, and so what I've tried to
document in my work over time ishow basically this digital base
has been developed that enablesdifferent forms of

(10:12):
interoperability between thedomain of clinical care and the
domain of public health practice.
Since pathogen genomics becamean object of interest for me
when I was actually studyingthis process in regard to
changes in HIV care,surveillance and prevention
during the 2010s, and so I wasdoing research, I did over two

(10:34):
years of ethnographic field workin Atlanta, georgia, in the HIV
safety net from 2016 to early2019.
From 2016 to early 2019.
And I was studying there therewere these multiple transitions
happening during that time inregard to HIV and how it was
managed by public healthinstitutions.
One of them was theintroduction of knowledge about

(10:58):
undetectable viral loadsbecoming undetectable, making
one untransmissible, or U equalsU in the kind of public-facing
messaging, and whenoperationalized as a public
health strategy, this is oftencalled treatment as prevention,
and so this was taking off inthe period when I was doing my
field work and what I was payingattention to most closely was
the ways in which public healthsystems.

(11:20):
Then they had a much greaterincentive to monitor in real
time who was virally suppressedin their jurisdictions, because
there was just a realreorientation, this time in HIV
care and public health, aroundbringing viral loads down and
then in identifying.
During this period in the USthere were a series of programs

(11:41):
rolled out that were focused onidentifying people who had
fallen out of care based onwhether or not the public health
department had received bloodwork from them.
Identifying people who hadfallen out of care and then
reaching back out to them tobring them back into care.
So this was a very new set ofprograms in the United States.

Speaker 4 (11:58):
Historically, like these, hiv surveillance systems
and clinical care and preventioninfrastructures were quite
separate from one another,that's really interesting
actually seeing how the actualclinical aspect of HIV care was
translated into a public healthoutreach in ways that a lot of
people maybe didn't know about.
So that's really cool.

Speaker 6 (12:20):
Yeah, and this is as part of this.
In 2018, in all healthdepartments, cdc began requiring
the use of HIV genetic sequencedata, which are generally
ordered in the clinical contextto monitor drug resistance, the
potential emergence of drugresistance in a patient and CDC
standpoint was usingphylogenetic analysis to monitor

(12:41):
the growth of emergingtransmission clusters of HIV.
This is what actually broughtme to thinking about pathogen
genomics and pathogenphylogenetics.
I was initially interested inthe digitization of health
systems and how that facilitateddifferent uses of data such as

(13:01):
this, and how that facilitateddifferent uses of data such as
this.

Speaker 5 (13:05):
I had a question about this.
So do you think this kind ofreorientation has?
Has it increased the peoplethat were retaining in care?
Because I know and I know thisbecause this is just in my
dissertation, we were justtalking about it, so I just
found the stat so the CDC saysthat for every 100 people living
with HIV in the United States,only 54 are retained within the
care system and about 66 achieveviral suppression, which is

(13:29):
certainly, with as wealthy of acountry as we are, we could do
better.
So do you think that it changedlike how we're maintaining
people in care and like thelevel of care that people were
receiving?

Speaker 6 (13:39):
Yeah, so this is actually quite a fraught
question.
So this is sort of where Ithink we can think about where
the science and the publichealth practice meet politics in
this regard, because what Idiscovered when I was doing my
research is that these programsand the reorientation of the US
National HIV-AIDS Strategy so itwas the first National HIV-AIDS

(13:59):
Strategy for the United Statescame out in 2010.
It was this big moment and ithas been updated since then.
But if we situate ourselves inthe period of the mid-2010s,
there was a great deal ofoptimism around technology
digital technology generally tosolve social problems which has
really waned in recent yearsright this sort of what we call

(14:20):
an STS techno-optimism rightaround digital technologies to
solve social problems.
There's a great deal more ofsocietal skepticism of that.
But if we position ourselves inthe 2010s, you had a few things
going on in regard to HIV,because you had the convergence
of a very optimistic sort ofcivil society liberal

(14:41):
progressive coalition that hadcoalesced around Obama.
You had the digitization of thehealth system, being able to
use data in new ways to linkpeople to care, and then, at
this time, you also had theemergence of treatment as
prevention.
So this was a moment of hugeoptimism that maybe we can use
data in new ways and this newknowledge about HIV transmission

(15:02):
to end the epidemic by bringingpeople into care, whether the
programs have worked generally,what the evaluation papers in
this space has found and thisprogram initially it was called
Data to Care and it's stillcalled that when the technical
literature and the people who dothis if you want to look up
these programs, that's whatthey'll be called, the
evaluation literature hasgenerally found that it's very

(15:22):
expensive to conduct theseinvestigations to bring people
into care and relink them.
Their effectiveness is debatedbut in partly because a lot of
it is done using cost-benefitanalyses for bringing people
back into care, have been ofthis other process that was
mixed up in HIV in this time,which was the integration, right

(15:46):
of care, prevention andsurveillance, where they really
put a lot of effort in.
I'm thinking about a group inWashington and Seattle, for
example, to try and keep peopleretained in care after a
successful relinkageintervention, and it was just
really hard and a lot of peopleended up still falling out of
care, not being able to beretained, because people were
having trouble remaining in care.

(16:06):
In the United States we don'thave a health care system that's
designed to keep people in care.
We have a very bad health caresystem, but also you're
generally talking, these arefolks who are having a hard time
in other ways too, maybe withhousing, food security, things
like this substance use, thingslike this substance use.
But in any case, I'm going toanswer your question.

(16:30):
But it's a long way around thebarn, because what happened was
there was all this optimismaround moving HIV toward a
treatment as prevention paradigm, and then things really changed
after 2016 and into 2017.
So you had HIV.
Civil society was really onboard with these uses of data
and then there was a switch thathappened sometime between 2017
and 2018, when actually thatcoincided with the use of

(16:54):
molecular HIV data or HIVgenetic sequence data in these
programs, doing this clustermodeling.
So at this time, the organizednetworks of people living with
HIV and others in civil societythere had been a switchover from
the Obama to the Trumpadministration began to really
voice a different set ofconcerns around privacy,

(17:21):
concerns, confidentiality,concerns around criminalization,
because, for example, hivgenetic sequence data and
phylogenetic analysis can beused potentially to infer who
may have infected whom in a dataset.
So there's a lot of concernaround this and then this led to
a real backlash during thisperiod to these programs.

(17:41):
That was led by segments of HIVcivil society, which is ongoing
to this day, in fact, and I'vewritten a couple of papers
tracking this controversy.
And to answer your question, doI think that these programs have
worked?
I think that we're still atlike less than 70%, certainly
probably around 65%, viralsuppression in this country.
I would say probably not at apopulation level, but also even

(18:05):
if we look at theirimplementation.
Their evidence of effectivenessis very much debated and I
always like to say, if that, ifsomeone could walk down the
street and get into care easily,there wouldn't necessarily be
the need for all of theseprograms and advanced data uses.
But that's not the healthcaresystem we have.
So they remain an object of alot of controversy.

Speaker 3 (18:24):
Yeah, Stephen.
I was wondering can you give ussome examples how pathogen
genomics and pathogenphylogenetics is in their life
or where they run into thisduring their life?
For people that probably don'tknow exactly what this is, Can
you give some very 30,000 feetexamples?

Speaker 6 (18:43):
Yeah, sure.
So where an everyday personmight run into pathogen genomics
, there might be a couple ofdifferent ways.
If you're a person living withHIV and you, for example, are
having problems keeping yourviral load suppressed with your
care provider, your careprovider might order a drug
resistance test for you.
That is, the provider orderingan HIV genetic sequence Because

(19:06):
HIV is a reportable condition topublic health.
Right, it goes to public healthso that they can use it in
surveillance programs and alsoin prevention outreach programs.
The data that the lab generatewill be reported back to the
provider and to public health.
In the clinical context, thesedata can then determine okay,
this patient or this person ishaving trouble remaining virally

(19:30):
suppressed because they have akind of HIV that's resistant to
this particular medication, sowe're going to change their
medication.
The guidelines change aroundthis with some frequency.
So what providers do?
It's generally in line with theguidelines, but the guidelines
change a lot.
They're like updated every year.
So a lot of providers willorder an HIV genotype test or a

(19:52):
drug resistance test for ourpatient upon enrolling or
re-enrolling in care.
And so an everyday person whois not living with HIV.

Speaker 4 (20:01):
where they might run into this, it's hard to actually
say Would you say it couldpotentially be used in, like the
analysis of bacteria, let's sayan antibiotic resistance when
it comes down to it, used allthe time.

Speaker 5 (20:13):
Yes.
To see what antibiotic yourparticular infection might be
susceptible to, especially ifthey're concerned.
You have an antibioticresistant infection, used all
the time.

Speaker 6 (20:21):
Yes, and this is where I was going to go, which
was in media coverage, is whereI think people might see some of
this.
So if they're hearing, forexample, about the emergence of
antimicrobial resistant orantibiotic resistant, let's say,
gonorrhea is, there are wavesof media discourse about this
almost every year.
Cdc has been warning about thecoming pan-resistant gonorrhea

(20:44):
since the 1970s.
That has its own fascinatinghistory, but also, for example,
in the H5N1, avian flu is beingcovered in the media a lot right
now, when the news articles arebasically talking about how
pathogens, how bacteria orviruses, mutate and acquire new
characteristics.

(21:04):
This is pathogen genomics inuse.

Speaker 4 (21:07):
And so yeah.

Speaker 6 (21:08):
So they will be framed in the media often as
like the potential emergence ofa super bug or a species
crossover, for example.
I know that's of big interesthere in infectious science, but
these are media discourses thathappen that I think most people
would be familiar with and also,I would say, linking it back to
HIV the public communication ofemerging HIV clusters that have

(21:33):
been identified throughphylogenetic analysis.
Public health departments willoften work with local media to
communicate about these.
One very well-known example isScott County, indiana, in 2015,
where there were several hundrednew cases of HIV because of
very distinct practices ofneedle sharing that were going

(21:56):
on in that community.
But now the health departmentwants to communicate about
growing HIV clusters.
So if you're hearing this termHIV clusters, this is probably a
reference to phylogeneticsbeing used in public health
practice growing HIV clusters.
So if you're hearing this termHIV clusters, this is probably a
reference to phylogeneticsbeing used in public health
practice.

Speaker 3 (22:08):
Steven, I'm going to throw you a curve ball right.
This is a One Health podcast,so are you aware of any
relevance in veterinary medicine, animal medicine or
environmental sciences where,like pathogen, genomics plays a
role, or whether this is beingdiscussed, or is this a purely
human topic?

Speaker 6 (22:29):
No, so pathogen genomics are very much used in
One Health.
One Health is not my area, myprimary area.
I will be very clear in saying,however, there is one project I
have waiting in the wings thatI need to pursue further, which
intersects a lot with One Health, with One Health meaning the
whole thing human-animalenvironment, right, and this is
the concept of a resistome.

(22:49):
Which is this very interestingconcept that essentially is a
conceptual abstraction used todescribe the drug resistance
profile of all of the bugs thatmight be in a particular area
and they so.
The technology generally ismetagenomic sequencing

(23:10):
sequencing everything inside ofa sample to see what's there.
You can generate whatscientists who are working in
this area call a resistomeprofile, which will give you the
resistance profile of all thebugs in that sample.
What I find very interestingabout this concept is that it
scales in these sort ofincredible ways, and so one is.

(23:32):
For example, and when I firstbecame aware of the concept is
there was a paper about thespecific resistome profiles for
bacterial antimicrobialresistance among men who have
sex with men who were takingPrEP for HIV, which is an HIV
prophylactic medication.
In the paper, they had donethroat swabs and determined that

(23:56):
gay men who were taking PrEPhad a distinct resistome profile
in their oropharynxes this iswhen I first came across this
term in their oropharynxes.
This is when I first cameacross this term.
However, the term resistome isalso used, for example, to
describe in other papers I'veseen, like an entire region
where there's like maybe a lotof agriculture accounting for,
like water samples fromagricultural runoff, sampling

(24:18):
from animals and maybe peoplethere, or like a city block.
So there are some papers wherethey would have gone around a
city block, swabbing varioussurfaces and then sequencing it
all to come up with a resistome,and so that is the closest to
One Health that I think my workhas gotten on.
That's a project I want topursue, but I haven't quite yet.

Speaker 3 (24:37):
And antimicrobial resistance is such a big topic
in One Health right, because wehave the overuse in human
medicine, but we also have theoveruse in veterinary medicine,
so your resistome projects isprobably extremely irrelevant
and from my perspective.
Also coming back to theveterinary medicine right, the
phylogenetics is often used as apublic health response to fight

(24:59):
highly transmissible animaldiseases.
Right, like we see this nowwith avian influenza, where they
track where did this come fromthis virus, what migratory bird
brought this to thisagricultural farm or to this,
and they can trace it and theycan almost like trace the
history of where it came fromand what farm got infected next,

(25:20):
and so on.
But I think it's way lesscontroversial than it is in
human disease.
Would you agree or disagree?

Speaker 6 (25:26):
I would agree, but I would also say even making some
of the claims that you're makingthere right.
So, like this idea that you canuse pathogen phylogenetics in
the H5N1 avian influenza contextto track which bird or which
flock brought this strain ofH5N1, and strain might be the

(25:47):
wrong word to use but thissubtype, let's say, of H5N1 to
another area, you're makingtransmission, what are called
transmission directionalityinferences, when you're doing
that right, and one of thethings I'm interested in in
pathogen phylogenetics is wheremaking these kinds of inferences
becomes acceptable and when itis problematized it's not
acceptable.
Yeah, that's fair, yeah, so inHIV, for example, and programs

(26:09):
that have been rolled out in theUnited States.
There's a lot of concern aboutinferring who may have infected
whom and inferringdirectionality.
Cdc says they don't do that.
Activists claim if you'remapping clusters and doing
investigations based on thecombination of the phylogenetic
data and the behavioral data,how can you not be doing that?
And this is the heart of thecontroversy?
But right, if you're talkingabout birds or, honestly, if

(26:33):
you're talking about otherpathogens, for example TB, in
certain contexts for TBaffecting humans, those
directionality inferences aremade and they're much less
controversial.
So it depends a lot by pathogenand context.

Speaker 5 (26:48):
And I think also depends who you're talking.
To A vet, that might not be acontroversial statement to say
here's the farm where itoriginated, but to a farmer who
owns that farm, who then mightbe responsible for everyone
around them in a radius to havetheir flocks potentially
destroyed to prevent the spreadof avian flu.
That might be a very sensitivetopic and that definitely

(27:08):
happens in the United States andwe've certainly seen that where
entire flocks have been culledand, as someone who grew up on a
farm, there's strong concernsabout biosecurity.
But also, who is the sourcezero of something like that
happening, because it can bedevastating for that particular
community.
So, yeah, I think it alldepends on who you're asking, on
whether or not it's considered.

Speaker 3 (27:26):
But I think this brings back then the question of
science literacy, though.
Do the farmers understand whycertain decisions were made
based on phylogenetics or not,because often the veterinary
health response is so strong andthere's this response of
culling instead of not what wenormally do with humans, right?
Do they understand what wasimplemented based on, maybe,
right?
Do they understand what wasimplemented based on, maybe some

(27:47):
sequencing?

Speaker 5 (27:48):
Yeah, I think farmers understand what happened.
But I think when you're sayingthere's this like line of
transmission, then you alwayshave someone who might be at
fault potentially.

Speaker 6 (27:57):
And I think that's what's sensitive more than like.

Speaker 5 (27:59):
yes, certainly, people can lose their
livelihoods and there's entireissues with that, and that's an
interesting conversation withinthe ag community.
But I think the idea of here'swhere this originated in this
local area, at this farm orsomething that's what's more
sensitive.

Speaker 6 (28:11):
Have there been culls of like flocks based on
phylogenetic studies?

Speaker 5 (28:17):
Based on phylogenetic studies?
I'm not sure based onphylogenetic studies, but
certainly if it's found in alocal area.
So, like I grew up on a farm,and certainly if you had avian
flu, everyone around you who haspoultry, their flocks will be
cold.
So there's still thisassignment of fall.
I don't know that it's everbeen down to phylogenetics.
I've never gotten into it orhad to deal with it.

(28:37):
I'm like a person.

Speaker 3 (28:38):
I think it's just more based on epidemic.
Radius.
Yeah.

Speaker 5 (28:42):
Like location.

Speaker 6 (28:43):
To connect this back to the conversation about HIV.
The fundamental question in thecontroversy about HIV
phylogenetics there are thesespecific issues, right there's
is directionality being inferred.
Can directionality,epistemologically speaking,
methodologically speaking, everin fact be definitively inferred
?
That kind of thing, thesequestions exist, but they are

(29:05):
specific manifestations of adeeper, underlying issue, which
is the introduction of pathogengenomics and, in the HIV context
, specifically pathogenphylogenetics to inform public
health action for reasons otherthan surveillance, but to inform
actual outreach to people, tolink them to care.

(29:27):
Does adding these technologiesin some way fundamentally
transform the work of publichealth and what public health
agencies are doing in mappingclusters, or is it an additional
tool that is in the publichealth toolkit that informs
routine practice?

Speaker 4 (29:46):
And I think that's a really good segue into our next
question that we have for you,dr Moldrum, which is you've
written about the role of mediain bringing pathogen genomics
into the public eye.
But, as you've previouslystated, there is still a gap
that persists in using thisinformation to better the public
health when it comes down to it, and also better the care for
the people who do have thesediseases and these infections.

(30:10):
How would you recommend that webridge this gap?

Speaker 6 (30:15):
Yeah, that's a really big question and so for me, my
studies in pathogen genomics,pathogen phylogenetics, have
been in three areas.
Right, I've looked at HIV inthe United States and the
introduction of molecular HIVsurveillance is what it's called
in public health right Intoroutine practice along with
using that in cluster response.
I've looked at media coverageof controversies are about

(30:38):
pathogen genomics in SARS-CoV-2,particularly some of the early
controversies around claimsabout evolution of SARS-CoV-2
toward greater transmissibility.
So for our listeners you'veprobably heard of things like
the Delta variant and theOmicron variant and all of the
Omicron sub-variants.
I've written about those andthe media politics of those, but

(30:58):
also of earlier controversieseven before the COVID-19
pandemic declaration and intuberculosis in Botswana.
And in global health policyfollowing, the World Health
Organization has recentlyrecommended that all countries
with capacity implement aversion of sequencing called
targeted next generationsequencing, targeted sequencing

(31:20):
to identify TB, drug resistanceand for use in routine
surveillance.
And I've thought about thistechnology and this technology
has been my entry point to thinkabout these issues in a number
of different contexts and so I'dsay that, to answer your
question, each context has beenextremely different.
Right, for HIV, I think thatthe use of HIV phylogenetics and

(31:44):
cluster detection and responsemethods in public health and
whether or not that is going tobecome something that's
acceptable to the community ofstakeholders is something that's
fundamentally unsettled.
We can talk about the politicaleconomy of pathogen genomics,
which is something that reallyinterests me, which is basically
what are the political andeconomic drivers of health
departments investing in thesetechnologies in the first place?

(32:07):
You know what the COVID-19pandemic did.
Is it really accelerated therate of adoption of sequencing
technologies across the world?
So you had large global healthfunders really sending
sequencing machines toministries of health around the
world along with reagents aroundthe world, along with reagents

(32:28):
and saying sequence COVIDuploaded into GIS aid and other
repositories so that we canunderstand patterns of
SARS-CoV-2 evolution globally.
Huge increase in the sequencingcapacity around the world,
which we can talk about later inthe podcast.
But that's played a huge rolein understanding the emergence
of different variants and alsothe reformulation of vaccines.
I'm a little less convinced thatmedia stories about every

(32:49):
single SARS-CoV-2 sub-variant ofsub-variant are helpful.
But what I also think is thatand have observed and written
about, is that the wide uptakeand use of genomic discourses to
describe the evolution ofSARS-CoV-2 have been fundamental
to public discourse about theCOVID-19 pandemic and I think,

(33:13):
have induced changes in howpeople relate to pathogens
generally.
I was in this really weirdposition at the start of the
COVID-19 pandemic where I hadbeen writing about HIV
phylogenetics I've been writingabout pathogen phylogenetics in
the HIV context and so I knewabout the technology and how it
could be used and found myselffascinated by early

(33:35):
controversies around SARS-CoV-2and then writing about them,
where scientists were havingdebates in public forums, for
example, and forums like webforums, sometimes papers, but in
those early days they wereoften fighting with each other
online about whether or notSARS-CoV-2 was evolving to be
more transmissible, and then tosee this actually become like a

(33:57):
major orienting media discourseabout the pandemic itself and so
like within the span of a fewmonths.
I was someone who studiedsomething that was this sort of
very obscure thing that no onereally knew anything about
unless they were really in thefield, to something that my
relatives were talking aboutuptake of media discourses about
pathogen evolution that havebeen enabled by the increasing

(34:31):
infrastructural capacity of theglobal health system to sequence
and analyze pathogen data.

Speaker 4 (34:35):
Yeah, and I can imagine too, just like being
able to execute a large publichealth response really does vary
, like you're saying, on what ispertinent to the public at the
time.
So I can imagine it can befrustrating at times too when
you have all this data and allthis information on variants and
viruses and bacteria and a lotof different pathogens that

(34:59):
could be really beneficial butthat it maybe seems like the
public doesn't really care abouttoo much at the time being, and
so I guess the battle there islike bridging that gap between
the interest and the actual data.
That's there too.

Speaker 5 (35:13):
I do think it's interesting.
I worked as a contact tracer inNew York.
I just graduated with my degreein infectious disease biology
Again, something everyone waslike why do you study this, what
do you know about?
And then the pandemic happened.
And then suddenly everyone wascalling me, and when I was a
contact tracer in New York state, so we certainly collected data
on what variants we were seeingin populations.
But we would, of course, callpeople and then do contact

(35:34):
tracing and people wanted toknow what variant they had and
we and it's just not somethingthat would populate for us Like
we collected on a an aggregatelevel but not on an individual
level.
We weren't like oh, like, youhave Omicron or whatever, and so
I think that it is interestingthat people were relating to it
in that way that they wanted toknow, like what particular

(35:55):
variant they had basicallygotten infected with.
So it was very wild.

Speaker 4 (35:59):
That's really cool, and I think that it also shows
how, even if you don't have astrong science background,
people really are invested intheir health, and I think
they're becoming more and moreinvested in their own personal
health, and so I think that thisis hopefully a promising
direction for pathogenomics andpathogen phylogenetics too,
because if people want to knowmore about what's happening to

(36:20):
them or what they're susceptibleto, hopefully you guys can step
in and play that role.

Speaker 6 (36:23):
Well, just to follow directly on something that
Camille said and yeah, I totallyagree, I think this is where
science and technology studiesis really useful, because it's
like people, because there wasthe possibility of having public
discourse about different kindsof variants, that was enabled
by the underlying public healthinfrastructure changing.
They were then able to ask youthis question, but actually,

(36:46):
infrastructurally, for you todeliver that information then
was not actually possible.
There were no best practices.
Laboratory infrastructure wasset up to receive this
information but not to deliverit back to patients because it
wasn't set up that way, it wasonly for our purposes as a
public health agency.

Speaker 5 (37:03):
But you're right, yeah, it was not set up to
basically deliver that topatients.

Speaker 6 (37:07):
Yes, and we have different identifications with
pathogens happening at multipledifferent levels of the public
health infrastructure as peopleinteract with it, which is
capacitated by new uses oftechnology that then acquire
what we can think of as like apublic life, right In the media
ecosystem around the pathogen.

Speaker 3 (37:27):
So I vividly remember that time early in the pandemic
or like when things weresequenced, and I think often
what was discussed in the mediawere like the bad sides of
phylogenetics, right Like wherelike a new variant was
discovered in South Africa andit was claimed as the South
African variant and flights werebanned from South Africa.

Speaker 6 (37:44):
That was Omicron.
Yes, Omicron.

Speaker 3 (37:46):
So do you think there's also a positive side to
ramping up the sequencingcapabilities, and so you were
really into this or you're stillinto this?
What were the benefits ofuploading all of the data you
think?

Speaker 6 (38:02):
Yeah, totally.
These are conversations, right?
We have in STS all the time,right.
So we are.
You want to be critical oftechnology, but also accounting
for more than just in the fullsense of critique, right?
Not in the sense of justpointing out the bad, but in
really understanding somethingin its full, rich complexity, by
generating empirical accountsof how technologies are actually

(38:24):
used, how they produce certainkinds of users, and then how
they generate representations ofthe organism or the problem
that they are intended togenerate, and then how those
acquire a material life, right?
So we're always trying to dothis in STS.
And there's a phrase intechnology studies I always
forget the actual person whosaid it, but it's a truism in

(38:46):
critical studies of technology,or something that you say in
your STS-101 lectures which isthat technology is neither good
nor bad, nor is it neutral,right?
Technology, whether it's doinggood things or bad things in the
world, is dependent on who'susing them and why and in what
contexts.
And, for example, in the HIVcontext, phylogenetics were

(39:08):
central in validating theundetectable equals
untransmissible paradigm,because in the partner and
opposites attract studies whichwere the name of the studies
that showed this there werepeople who became HIV positive
during those studies.
These were studies designed totell if HIV viral suppression
actually was effective atpreventing transmission.

(39:31):
Several people in the studiesdid seroconvert.
However, through phylogeneticanalysis they were able to
determine that it did not comefrom their primary partner.
And so because the strains weredissimilar from each other that
had gotten it from anotherpartner.
So this is an example of apositive use of phylogenetics.
Like I said in regard toSARS-CoV-2, the reactions to the

(39:54):
discovery of the Omicronvariant in Botswana and South
Africa closing of the borders,stopping of the flights is
absolutely unconscionable right.
However, tracking the emergenceand spread of variants globally
was very important to pandemicmanagement and then also
reformulation of vaccine.
So there was a lot of mediadiscourse around the first major

(40:15):
reformulation of the vaccine,which was called the bivalent
vaccine, and phylogenetics helpand have helped for a long time,
for example in flu help.
Public health agencies and,like the industry partners that
they work with, determine whatkind of vaccine reformulations
or formulas will be important toroll out that year for flu and
now in the case of likeSARS-CoV-2.

(40:37):
So like it's not good, nor isit bad, I think that we have to
pay attention to specific usesof the technology.
Dennis.

Speaker 5 (40:44):
So I guess my follow-up question to that is is
then, can we use it better,like for good?
And so, in particular context,my question is really about like
HIV surveillance, and I'msomeone who works in a lab where
we study HIV.
We study the neuro effects ofHIV, which can be myriad and
really deleterious for people,and so in I don't know that a

(41:04):
lot of people know this outsideof the HIV research field, but
basically the recommendation isthat everyone get HIV tested
like at least once in their life.
Certainly, if you're in what'sconsidered like a high risk
group and that varies dependingon like where you are
geographically on what high riskis they recommend you get
tested more often?
What are your thoughts onincluding something like HIV
testing as part of what's anormal like CBC panel as a way

(41:28):
to help people just be informedof their health and a CBC panel?
Christina can probably explainit better, but basically, if
you're getting blood work doneat like your annual visit or for
anything, you go to the ER orsomething, you're getting blood
work.
That's what they're running.
They're checking all yourvalues just to make sure
everything's looking normal.
What are your thoughts on likeincluding something like that?
So it's not something you haveto opt into, because I think

(41:49):
there's a stigma to opting intoit, right and so if it's just
run as, like this is normal,let's just do this.
Does that help destigmatize itor does that cause more problems
, or is it both?

Speaker 6 (41:58):
This is a great question.
I'm going to take it in twoparts, so the first on
criminalization.
I hate to be the bearer of badnews, although it's important to
raise awareness about this, butHIV criminalization is still a
very live issue in the UnitedStates, and it varies a lot
state by state.
There are some states that havelaws on the books that have
very outdated information, suchas that spit and bodily fluids

(42:21):
that do not transmit HIV cancause HIV transmission.
There are some states that HIVtransmission isn't criminalized,
but even allegations of, forexample, non-disclosure of one's
HIV status, even if it was avery low risk event, for example
if condoms were used peoplehave been criminalized.
Based on this, I reallyrecommend Trevor Hoppe's book

(42:43):
Punishing Disease, hiv and theCriminalization of Sickness, and
also Alexander McClellan's newbook Criminalized Lives, which
is about the experiences ofpeople who've experienced HIV
criminalization in Canada and sothat.
HIV criminalization is still avery live issue.
Hiv decriminalization movement,hiv justice movement.

(43:10):
That has gotten some states toreform the HIV criminalization
laws to require something likemalicious intent malicious
intent without consent and so tomake their HIV criminalization
statutes very narrow.
But there are other states thathave very broad and sweeping
HIV criminalization.

Speaker 5 (43:23):
I did not know that.
I guess I'd only ever focusedon the federal level.
But that totally makes sense.
That in the United Statesyou've got to look at the state
laws.
Oh my gosh, that is wild tothink.
We are in 2025 and there'sstill criminalization.
It was 2010 that wedecriminalized giving visas to
people who were coming to theUnited States that were HIV
positive.

Speaker 6 (43:41):
So 2010, which is very recent remembered that it
was like a.
That was when the obamaadministration was doing a lot
around hiv around that time, sothat would have been right right
, right also around the time ofthe launch of the first national
hiv aid strategy in 2010, whichis talk about having a
non-functional health caresystem in this country.
We did not have a national hivaid strategy until 2010 that is

(44:04):
insane yeah, that's been almost30 years into the epidemic right
.

Speaker 4 (44:07):
Wow, when we talk about criminalization of HIV.
I personally don't have a lotof knowledge on this.
Are we literally talking about?
You can be like put in thepenitentiary for things that
have to do with HIV and if youare someone who's HIV positive,
yes, and so this operates at acouple of different levels there
are.

Speaker 6 (44:27):
One level is we can talk about HIV and
criminalization being likepopulations and groups of people
who tend to be criminalizedtend to be more associated with
HIV.
So sex workers, transgenderwomen, gay and bisexual men,
people who use substances theseare people who tend to be
criminalized in other ways andwho also tend to have higher

(44:48):
rates of HIV.
So there's that.
But then there are actualspecific HIV criminalization
statutes, and so the WilliamsInstitute at UCLA has really
good reports about this.
For example, I remember thisreport came out when I was doing
my fieldwork in Atlanta aboutHIV criminalization in Georgia.
It's like outside of theAtlanta metro area, 10% of

(45:12):
people living with HIV haveexperienced some kind of
criminalization directly relatedto their HIV, and so this
doesn't mean that they had tohave transmitted HIV to someone,
but it could, for example, bethat they spat on a police
officer when they were beingarrested and it like got added
on as something like resistingarrest.

(45:32):
Another charge, and then thatwould be added to their charge
as a kind of enhancement.
And then there is HIVcriminalization, where there is
alleged nondisclosure ortransmission of HIV, and again
this varies a lot from state tostate and country to country and
the HIV Justice Network is theorganization that kind of
globally tracks and drivesconversations around HIV

(45:53):
criminalization reform.
Wow, yeah, and if you want toknow more about that you can
check out the website of theWilliams Institute has some good
reports there at UCLA, or, theCenter for HIV Law and Policy
maintains like a compendium oflaws, like they have a profile
of every state's HIVcriminalization laws.
I mean to connect this to thesecond part of your question and

(46:15):
to bridge it, I would say, alsoto phylogenetics, this idea
that you can use phylogeneticanalysis, which is a different
question than should HIV testingbe part of routine blood panels
when someone comes in for aprimary care or ER visit?
The fear that HIV phylogeneticscould be used to infer, even
with a degree of uncertainty,who may have infected whom in a

(46:36):
transmission cluster was a realand remains a real source of
fear, because HIVcriminalization laws do remain
on the books.
Now I will give public healthcredit.
Public health is very good atprotecting and safeguarding data
.
This would be taken for grantedfor people who work in the
public health space in any way,but the data that we're talking

(46:57):
about, that are reported topublic health as part of routine
care for people living with HIV.
This is done without consent,which is a longstanding practice
in public health because theseare routine reportable
infectious diseases.

Speaker 4 (47:10):
Actually going to be my next question, but that does
also apply to all reportableinfectious diseases, not just
HIV.

Speaker 5 (47:16):
Correct, so anything that is reportable is yes, it's
just given.

Speaker 6 (47:20):
Correct, and this is connected to your question about
testing.
Hiv data in the United Stateshave a very specific history

(47:50):
where, since data about HIV werefirst being collected or aids
before they identified thecausative agent HIV beginning in
the early 1980s, hiv data havebeen an object of political
contestation by advocates andpeople living with HIV that have
made them a special class ofdata in the public health system
.
Because initially, in the earlyyears and still, but
particularly, in the early years, having a positive HIV
diagnosis was so likely toresult in things like housing
discrimination, jobdiscrimination, there were no
effective treatments, and sothere were these fights.
That happened at the federallevel, but then also each kind

(48:13):
of state has its own story abouthow this played out in each
state.
Because of the US system offederalism, states have a lot of
say in terms of the actual dataelements that they collect and
how they do it, about whether ornot HIV tests would be
connected to people's first andlast names, or if they would be
connected to people's first andlast names, or if they would be
de-identified.
If anonymous testing shouldeven be possible, and then also
this applied to HIV testing,should there have to be specific

(48:36):
consent to receive an HIV testrather than what is called
routine opt-out.
And so, to give the big picture, these fights have happened at
regular intervals in the 40 plusyears of the HIV AIDS epidemic.
But when effective treatmentsfor HIV became available in 1996
, and then more and more widelyavailable after that, the

(48:57):
ethical case for names based HIVreporting became stronger and
stronger it was.
Basically we know, if we canhave a better epidemiological
picture of who is acquiring HIV,who's living with HIV, who is
out of care, we can then havebetter surveillance data more
complete and accuratesurveillance data and better

(49:20):
serve people living with HIV.
And the privacy concerns beganto be positioned lower than the
kind of public health benefitbecause people were living
longer lives.
There was a real, substantialbenefit to getting people
connected to care, and so thisprocess of the transition to
names-based reporting wascompleted in 2008.

(49:40):
And that really forms the basisfor all the programs that we've
talked about that identifypeople living with HIV who've
fallen out of care and bringthem back into care.
Part of those fights, which areagain very live and differ a lot
from state to state, is thequestion of routine opt-out HIV
testing or opt-in HIV testing,which that means do you need a

(50:02):
person or a patient's specificconsent to order an HIV test for
them, or can it just be part ofa regular test panel, maybe
with asking them hey, we'regoing to order this, do you want
to opt out?
I will say there has been amajor move toward routine opt
out for exactly the reasons thatyou're saying.
Let's destigmatize HIV, let'sexpand testing, let's

(50:24):
de-exceptionalize HIV and makeit like other tests that we run.
There's not 100% consensus onthat, though, and there are
still some advocacyorganizations that would prefer
opting in, and it varies a lotfrom state to state.
And then also, when statesimplement, for example, a
routine opt-out policy,oftentimes providers don't want

(50:44):
to implement it because they'reafraid of the consequences of
ordering HIV tests for patients,and so this is something that
you hear a lot about.
Again, this makes me thinkabout STS and how we think about
infrastructures, where, forexample, a health system you can
think about that as aninfrastructure sets a policy,
puts a policy in place thatthey're going to implement
routine opt-out HIV testing.

(51:04):
The policy is only as good asthose who are to implement it
right, and so you can actuallythen think about what's the
material life of a policy Is itimplemented or not, and why?
If you talk to people who areworking in health systems in the
US, where they're doing a lotof HIV testing, and particularly
in ERs, you will probably findif they've had an initiative

(51:25):
like this, there was someresistance to it and it's very
uneven across different healthsystems.

Speaker 4 (51:31):
Interesting.

Speaker 3 (51:32):
So Stephen you expressed your interest in I
think you called it thedirectionality of transmission
and where you draw the lineright If a transmission occurred
, proven by phylogenetics, fromA to B.
Right Like, where do you drawthe line?
What is acceptable, it's notacceptable?

(51:52):
And we spend quite a bit oftime talking about HIV and how
you can criminalize or you coulduse it in a bad way.
Right, if you say this camefrom you or from you.
So a lot of people here in thegnl work on the other end of
that spectrum.
Right where you want to findout the zoonotic spillover of a

(52:13):
disease.
Right, like from an animal to ahuman.
And the directionality is likethe goal.
Right, like you want to findout did it come from a mink or
did it come from a bat orsomething like that, where it's
very essential.
And then often we're like withour backs against the wall
because it's all and somethingthat happened in the past and we

(52:37):
are trying to put the cluestogether to see what happened in
the past and it's often just aninference.
But I'm curious can you talkmore about drawing the line
right, like we have on the verystrong side, the HIV
transmission?
You don't want to have thisdirectionality of who
transmitted to who, but then we,on the zoonotic spillover, we

(52:58):
must find out where it came from.
So when you, with your interestin transmission and the
directionality of it, wherewould you draw the line?

Speaker 6 (53:07):
Yeah, I'll take your question by drawing on one of my
favorite books, which is a bookcalled the Epistemology of the
Closet, by a literary theoristnamed Eve Sedgwick, and this is
one of the foundational works inthe field of queer theory,
which is another field where Iwork.
And she opens her book withseveral axioms or axiomatics.
One of them is that people aredifferent from each other in the

(53:29):
same way and this is like herstarting point for thinking
about the diversity of humansexuality, right in that context
and of human experience period,right, a very powerful, simple
notion to return to all the timePeople are different from each
other and people like differentthings.
Right To relate this to thediscussion we're having now.
Pathogens are extremelydifferent from each other.
Right To relate this to thediscussion we're having now.
Pathogens are extremelydifferent from each other, right

(53:50):
.
So even this term.
I had the problem with the termpathogen genomics for a while,
because it indicates it's a setof technologies, but it also, in
a way, reduces pathogens thatare very different from each
other, have differenttransmission modalities, affect
societies, people and, in thecase that you brought up Dennis,
animals in different ways.
It reduces everything to like,oh, a genetic sequence that can

(54:13):
be analyzed using a particularmethod.
It has a way of flattening allof this very rich difference
that actually shapes the worldthat we live in, and so this is
what I like to remind myself ofwhen we're thinking about the
use of this technology tounderstand different pathogens
and where this line could bedrawn on something like
directionality.

(54:33):
Right, I will say I don't takea strong of a normative position
, and STS is actually much lessthan a field like public health.
Ethics isn't necessarilyinterested in staking out very
strong normative arguments mostof the time.
But I will say in the HIV spacethere is not a consensus about
when directionality can or oughtnot be inferred.

(54:54):
There are proponents of usingphylogenetics to infer
directionality of transmission,and it's usually used with
qualifying language like theputative transmitter, the
putative recipient, or using thelanguage of inference, but it
will be paired with somethingWell, we ran our model and it
was correct 998 out of athousand times or something like

(55:16):
that.
So right.
And then there are people whowill say, no, you can actually
never definitively know, andthat's like a strong
epistemological claim thatactually have a colleague who's
a statistician, who often callshimself the party pooper on the
interdisciplinary phylogeneticsteam because he's always saying
no, you can't definitively inferdirectionality.
But in these other cases, inHIV, this is a highly

(55:37):
stigmatized lifelong infectionassociated with criminalization
and a whole other slew of healthdisparities that shape the
lives of people who are livingwith and affected by HIV.
But in other cases the stakeswould be quite different and
some of the examples that youwere talking about, dennis, you
would be talking about differentpathogens with different stakes

(55:58):
, and so I don't want to comedown strongly on making a
normative argument for oragainst directionality in any
and all cases.
But I would urge scientists whoare working in this space and
who are thinking about theethical dimensions of their work
and what the goals of theirwork are, the kind of language
that they're using and the kindof inferences that they are

(56:18):
making and the stakes for thepeople and the communities who
lie behind that data.
In a controversy over molecularHIV surveillance and cluster
response one of the clarioncalls from people living with
HIV that has been used inadvocacy but also in the
editorial a group of folks wrotein the American Journal of

(56:40):
Bioethics we are people, notclusters, which is that they
were saying.
The CDC says all that they'relooking at are data and that,
basically, this is benigninformation, and what people
living with HIV and HIV networkshave wanted to remind the
public health agencies is thosedata that you're working with
represent people.

Speaker 3 (57:00):
Right.

Speaker 6 (57:01):
And people with rich lives and experiences who might
object to what you're doing.
Some of them might not, but inany case, you need to do a
better job, remembering thatthere are people behind the data
and communities behind the datathat you're working with, and I
agree, and I think you couldeven argue the example that I
brought.

Speaker 3 (57:18):
There are also people behind the animals, right, like
we talked about, the farmers,right?
If you say this came from farmXYZ, right, and they lose their
livelihoods, or from farm X Y, z, right, and they lose their
livelihoods.
Or you say the zoonoticspillover might occur in the
country of blah, blah, blah, andthen now, all of a sudden,
exports are banned from this,and I think you always have to

(57:39):
be very cautious with yourstatements, absolutely.

Speaker 5 (57:42):
Yeah, I think it can generate a lot of fear when you
talk about zoonotic spillovers,but I also think that sometimes
it's important to have thatinformation out there right,
especially if I think aboutCOVID and people's concerns
about a lab leak, versus therecognition that pathogens like
this do exist in animalpopulations and in the wild and
routinely are hitting humanpopulations that are naive to

(58:03):
them and have never experiencedthem.
And I think again, there'salways this kind of desire, I
think, by people to find who'sat fault, and that can be pretty
dangerous when you're talkingabout illness and something that
has dramatically alteredsomebody's life.

Speaker 6 (58:17):
This is not an uncommon story in HIV in terms
of people wanting to know whogave it to them right After a
recent infection.
I was just interviewing aprovider the other day for a
study that I'm doing, and thenshe is not the first provider
who I've talked to, who's peoplewho have had patients who've
come to them asking interestedin the technologies oh

(58:37):
interesting, Can you tell me whogave me HIV?
Or wanting just to know.
This person I was interviewingwas talking about actually a
patient who was aware of HIVphylogenetics who was saying, oh
, can you use this to tell mewho?
And she was like no, I can't.
And not that she couldn'tbecause she couldn't disclose
the information, but more it'snot possible to do so.
But this is a very common kindof thing that comes up when

(59:00):
people talk about new HIVdiagnosis, just like people want
to know where did it come from,how do they get it, and that's
not often the most productiveconversation to be having.
The productive conversation tobe having is remaining in care,
but also all of the communityinfrastructures and support
systems that exist for peopleliving with HIV at the community
level.
Focus on that rather than onthe assignation of blame is, I

(59:23):
think, one of the kind ofenduring messages that the HIV
justice movement repeats overand over.
Whenever you assign blame for,I think, the transmission of a
pathogen, you're moving in a baddirection.

Speaker 5 (59:37):
I totally agree, but I think we do see it on a large
level.
Like I can think about therhetoric that surrounded COVID,
there was definitely blameassigned on where it came from
right and that was a major partof public discourse that did not
do good things.
Yeah, I mean look at theOmicron variant example right.

Speaker 6 (59:53):
I mean you had the EU and the United States shutting
borders from Southern Africabecause that is where the
variant had been identified, butthen a few days later we found
it was already circulating inEurope and the United States,
completely unproductive, harmfulto economies and also punishing
African countries that had doneexactly what Global North

(01:00:13):
funders and scientific agencieshave asked them to do, which was
to invest in sequencinginfrastructures, then being
punished for investing inscience and sharing the data as
they were asked to.
That's a great example of whereassignation of blame was
occurring during the COVID-19pandemic in ways that were
hugely unproductive and harmfulto human health and trust within

(01:00:34):
the global health system andall sorts of things, all sorts
of problems from that.

Speaker 5 (01:00:38):
Yeah, yeah, absolutely Okay.
Could you talk to us a bitabout your work on TB and how
that is related to this publicdiscourse around pathogen
genomics, because I can thinkabout what I've seen in the news
.
A lot with TB is certainly thissort of rise of, like
multi-drug resistance with TBand that there's much more of

(01:00:58):
this fear that we may get to apoint where there are some TB
cases we can no longer treat.

Speaker 6 (01:01:05):
Yeah, there's a wonderful book by Bharat Venkat
called At the Limits of Cure.
It's an absolutely beautifulbook and he's a science and
technology studies scholar andan anthropologist and he uses
methods from anthropology andhistory, which his book is a
history of tuberculosis in India, but it's organized around the
idea of the looming potentialfuture where antibiotics no

(01:01:28):
longer work to control TB andIndia's path-breaking attempts
at TB elimination since theadvent of effective antibiotics
that can cure TB.
It's a book I recommend toeverybody who is thinking about
this topic, although it came outlike two or three years ago, so
my work on TB actually beganwhen I was a postdoctoral fellow

(01:01:48):
at the University of California, irvine, and so that's four or
five years ago at this point andit has been focused on the
views of stakeholders in TB andhealth system stakeholders in
Botswana, including TB survivorsin Botswana, which is a
Southern African country justnorth of South Africa with one

(01:02:08):
of the highest HIV prevalencerates in the world but actually
a very strong healthcare system.
Botswana has much higher ratesof retention in HIV care, for
example, than the United Statesand it's an upper middle income
country with a very stronghealthcare system relatively,
and so I got linked up with agroup that does TB whole genome

(01:02:30):
sequence phylogenetic studies inBotswana, mapping transmission
dynamics and the potentialemergence of drug resistance in
the capital city of Haberoni,and I wanted to work with these
folks to understand ifstakeholders in the country
supported the uses of thetechnology, and this was in 2021
.
We began collaborating.

(01:02:51):
We received NIH funding to do astudy where we interviewed 30
people and did four deliberativedialogues, basically asking
people in Botswana who eitherworked in the healthcare system
or were in civil society or werepeople who had survived TB
about what they thought aboutthe technology, and so we made a

(01:03:12):
video series that we'vepublished.
You can watch it if you'd like.
We have a publication in PLOSGlobal Public Health that told
the story of a family thatexperienced TB diagnoses and
contact tracing investigationsthat were informed by uses of TB
phylogenetics, and so one ofthe interesting findings from a
lot of this research is that,for example, two cases in the

(01:03:35):
same household that would beassumed to be in-household
transmission are oftentimesactually unlinked pairs.
Genomics has upended ourunderstanding of the context in
which TB is transmitted, but thehusband had drug-susceptible TB
and his wife, in this fictionalstory that we created using
animation software, actuallyended up having a

(01:03:56):
multi-drug-resistant TB and hadto go into a longer period of
isolation.
And it told these people'sstory and it told the story of
the ministers at the Ministry ofHealth who debated should we
publish these data about, forexample, transmission hotspots?
And I was going into thisresearch coming from the
American context.
Okay, I had not done much workin global health and I was

(01:04:17):
coming from being activelystudying this very intense
controversy around molecular HIVsurveillance and cluster
response, where the stakeholdersin the US were reacting against
HIV sequencing very stronglyand there was an active
controversy.
We in Botswana.
I didn't know what we wouldfind.
I expected that there mighthave been a lot of skepticism

(01:04:38):
about TB genomics and TBphylogenetics among stakeholders
in the country, but actuallywhat we found is that people
wanted it.
People wanted it to beimplemented yesterday, right
Like universally across oursample, and that was somewhat
surprising to me.
I went on to learn more aboutBotswana and the history of
post-colonial development of thestate there and the strong

(01:05:01):
healthcare system and it becameless surprising to me.
But what was interesting is wewere able to demonstrate through
that study that people inBotswana really wanted TB
sequencing in order to identifydrug-resistant TB there, but
then also for secondary uses toimprove surveillance and
research in the country.
And as we were analyzing andpublishing that data, some of

(01:05:22):
which we're still working onpublishing, the WHO in 2023
recommended the implementationof sequencing for TB drug
resistance diagnosis in anycountry that had capacity to do
it, and so that led to afollow-on study that we're doing
now where we're actuallydeveloping implementation
strategies for sequencing.

(01:05:42):
So it's been cool to go fromdeveloping and understanding
whether people would support itto actually now developing
strategies to assist with theimplementation.
And again, the benefit of thetechnology in the context of TB
is really to identify drugresistance.
So culturing TB samples toidentify if there's drug
resistance this is a processthat can take weeks or months.

(01:06:02):
That's like the gold standardof phenotypic drug sensitivity
testing.
Targeted sequencing canpotentially identify drug
resistance much faster in orderto inform treatment.

Speaker 3 (01:06:14):
If you compare this to HIV, is there the same blame
game with TB?
Are there questions like whogave me this multi-resistant TB,
or is this less the casecompared to HIV?

Speaker 6 (01:06:25):
What we found is that it's less the case.
There are still some of the sameethical concerns, but again, in
Botswana people tend to trustthe state a lot more than in the
US, just generally, and so theidea that the ministry will
safeguard the data and will useit well was very much part of
what our participants said.
But people did also wantengagement about the technology

(01:06:48):
and how it would be used, sowanted listening sessions,
wanted ministry to engage themedia if this were to move
forward and to stay informed.
The blame game and kind ofskepticism about the value of
the technology really did notmanifest.
And something that came up alot we were talking about the
economic impacts of a districtbeing labeled as having, let's

(01:07:09):
say, a high rate of MDR,multidrug-resistant TB.
There were concerns that thatcould harm businesses in that
area, and so participants hadrecommendations about how the
ministry could maybe mitigate orany harms that could come from
that, maybe just use the datainternally rather than
publishing it, and they wantedto be engaged about these issues
.
But it never manifested stop,no, this shouldn't be

(01:07:32):
implemented, whereas in the USthere's a much broader spread of
people, including people whoare in social movements, who
really just have called for amoratorium on uses of
phylogenetics in the HIV context.
There's actually an active callfor a moratorium from some
networks of people living withHIV.

Speaker 3 (01:07:50):
Why do you think there's the difference that you
outlined between Botswana andthe US?

Speaker 6 (01:07:55):
I think you can connect this to an earlier
discussion we were having aboutour healthcare system in the US.
I think that you could look atthe rates of HIV viral
suppression in the United States, which are below 70% I think
below 65% the lowest of anyhigh-income country.
People have good reason not totrust the healthcare system here
.
Hiv is a highly stigmatizeddisease that remains associated

(01:08:19):
with many social inequities.
People living with HIV are nottreated well in this society,
and the healthcare systemdoesn't treat people well here,
and so this leads to diminishedtrust in state institutions and
the healthcare system doesn'ttreat people well here, and so
this leads to diminished trustin state institutions.
And what's interesting is that,by the way that TB is handled by
public health in the UnitedStates, we're a very low
morbidity country in the US, touse the language of public

(01:08:41):
health when it comes to TB right, and so when there is a case of
TB, particularly DRdrug-resistant TB, public health
really, really, really makesthat a priority.
In the United States it hasbeen since the 1990s, quite
effectively using a molecularsurveillance system developed
for TB to map transmissionpatterns and to contact people

(01:09:01):
and get them into treatment.
But I would say things liketransmission inferences, are
used much more liberally andless problematically in a
particular way, where therereally is no analogous social

(01:09:32):
movement for other pathogens.
There are networks of peoplewho are TB survivors or affected
by TB, but they have nowherenear the political clout of the
HIV social movement, and so Ithink that we also have to look
again at the political economyof these diseases and why
certain practices areproblematized for some and not

(01:09:54):
others.

Speaker 3 (01:09:56):
I feel like we opened so many doors.
We asked so many good questions.
I feel like there needs to beat least three follow-up
episodes to this.
I know I'm going to go back tothis episode.
I'm going to listen to itmultiple times because I got me
thinking on a lot of differentsubjects that I've not really
thought about previously.
What do you think, Christina?

Speaker 4 (01:10:16):
I completely agree and it just has me turning a
bunch of questions over in myhead that if I asked right now,
this would be like a four hourpodcast.

Speaker 3 (01:10:24):
So, stephen, you have to come back.

Speaker 6 (01:10:26):
It would be my pleasure and thank you so much
for having me, and it's beengreat to see infectious science
really come into its own theselast couple of years.
Thanks for the great work thatyou're doing here at the GNL,
where we are right now in thisbeautiful recording studio in
the Galveston.

Speaker 5 (01:10:43):
It's much larger than a closet.
It was actually a closet.
Oh, it's much larger than acloset, it was actually a closet
.

Speaker 3 (01:10:49):
What was the name of the book that you recommended
with the axioms and the closets?
I recommended four books.

Speaker 6 (01:10:56):
Okay.
So one of them is by thesociologist Trevor Hoppe called
Punishing Disease, hiv and theCriminalization of Sickness,
which is a great book that isabout the history and effects of
HIV criminalization theconversion of what he calls
sickness into badness in theUnited States.
Alexander McClellan's new book,which just came out last year
he's a Canadian criminologistand a collaborator of mine

(01:11:19):
called Criminalized Lives theexperience of people who have
experienced HIV criminalizationin Canada.
I didn't get the titleperfectly right, but the first
is Criminalized Lives.
That's the name of the book Ialso recommended, yeah, eve
Sedgwick's Epistemology of theCloset in a kind of sideways way
, that's our book here in thecloset right.
Yeah, here in the closetEpistemology of the Closet yeah

(01:11:40):
and then finally, venkats At theLimits of Cure, which is about
the history of TB in India.

Speaker 3 (01:11:46):
It's such a beautiful title, we'll put that in the
show notes.
Yeah for sure, cool All right.

Speaker 4 (01:11:50):
Thank you so much for just taking the time out of
your schedule to come here.
We know you're a very busy man,so just thank you so much and
hopefully we can link up againand discuss these topics a
little bit deeper.

Speaker 5 (01:12:04):
And thanks everyone for tuning into this episode of
Infectious Science bit deeperand thanks everyone for tuning
into this episode of InfectiousScience.

Speaker 1 (01:12:13):
Thanks for listening to the Infectious Science
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Be sure to hit subscribe andvisit infectiousscienceorg to
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Speaker 2 (01:12:19):
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Speaker 1 (01:12:32):
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To get in touch, drop a line inthe comments section or send us
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Speaker 2 (01:12:37):
So we'll see you next time for a new episode, and in
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