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Lauren Arora Hutchinson: I'm
Lauren Arora Hutchinson, and
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this is playing god? presents...
Today, a story about uncertainty
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in medicine, that dissonant
feeling it creates, and how
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sometimes you have to make a
decision, even when you don't
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have all the answers.
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Loren Ludwig: My mom often says,
or you know, people say, they're
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like, "oh, it's a little out of
tune. Nobody minds. It's only
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you." It's like, no, no, really,
it doesn't- the whole point is
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the beauty. Like, like, no, I'm
not going to play out of tune.
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It's- yes, it's inconvenient
that I have to stop in tune for
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sure.
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Lauren Arora Hutchinson: Brought
to us by our senior producer
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correspondent...
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Simon Adler: No inconvenience at
all.
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Lauren Arora Hutchinson: Simon
Adler.
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Simon Adler: So yeah, so a
couple months back now, I took
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the train down to Baltimore to
sit down with this guy.
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Loren Ludwig: I'm Loren Ludwig,
and I think the first line of
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the bio that I usually circulate
says I am a musician and music
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researcher based in Baltimore.
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Simon Adler: Loren is in his
40s. He is often sporting either
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a beanie or a hoodie, and that
day, like most, he had with him
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this kind of rare string
instrument, his viola da gamba.
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Kind of looks like a cello,
except with six or seven strings
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instead of four, and it is a
considerably older instrument
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than the cello. And for Loren,
at least, well, it just grabbed
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him from a very young age.
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Loren Ludwig: It had, it had,
you know, all of the recipes for
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fascination. It's other, and it
exists in some complicated
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relationship to the things that
exist now. And it's also, yeah,
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it's just such wonderful music.
So I found somebody to study
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with...
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and eventually
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...went to Oberlin Conservatory
out in Ohio to learn as much as
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I could learn about playing old
music on old instruments.
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Simon Adler: Right.
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Simon Adler: And I mean, this
instrument, it kind of became
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his life until that is two
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Loren Ludwig: colonoscopy
changed from 50 to 45.
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Simon Adler: Okay.
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Loren Ludwig: So I had this
colonoscopy and...
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Simon Adler: ...goes off without
a hitch, no big deal. And you
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know, then a couple weeks later,
he's at a music festival out in
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Texas when he gets an email...
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Loren Ludwig: ...saying that
there was a MyChart message for
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me,
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Simon Adler: the results?
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Loren Ludwig: I was not
expecting- I was expecting that
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I would get results, but wasn't
worried about the results.
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Loren Ludwig: So followed the
links to this. You know, it was
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a pathologist report and under
the diagnosis section was just a
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couple of sentences that said
adenocarcinoma and tubular
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adenoma. These words that I
didn't really know, but I know
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carcinoma feels like a word that
I've seen before. So, I
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immediately Googled
adenocarcinoma and was reading
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about it, and you know was
saying to myself like, "oh well,
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shit, this is clearly cancer,
and to the extent that I'm able
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to live past this, the next
months are definitely going to
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be like figuring this out."
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Simon Adler: Now, the process of
figuring this out, well, it was
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not at all what Loren imagined.
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Loren Ludwig: I totally expected
a different thing than I
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encountered. I had in my head
that, well, this is a scary and
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uncertain thing, and maybe I'm
going to die, but there will be
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this team of experts that are
going to help me understand how
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to think about it and how to
feel about it and what I need to
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do. And, there are indeed many
experts that helped me survive,
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but they also created a
terrifying mystery...
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Simon Adler: ...because he found
himself ultimately forced to
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make a decision that he did not
know how to make, a decision
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clouded by
Load full transcript
uncertainty that even
some of the best doctors in the
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world couldn't dispel for him,
but before he could even get to
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that decision...
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Loren Ludwig: I started to try
to reach somebody that could
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explain to me what the situation
was.
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Simon Adler: ...well, he had to
navigate the American medical
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system.
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Loren Ludwig: And I mean, you
know how hard it is to reach a
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doctor under under the best of
circumstances.
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Simon Adler: When he tried to
get in touch with the guy who
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did the colonoscopy, he
discovered that that guy had
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like disappeared
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Loren Ludwig: Yeah, I was never
able to get in touch with him,
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and my primary care doctor, she
was unreachable, and so I went
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through these weeks of not-not
being able to answer what seemed
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to me to be some straightforward
questions...
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Simon Adler: ...like how serious
is this? What are the survival
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rates?
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Loren Ludwig: What is even this
thing? How do I even say this
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word so that I can have a
conversation with somebody about
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it? I was-I was so confused
about so many things, like not
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just seeing that I was confused
and that I didn't even quite
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understand what I was confused
about. I'm calling different
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people. I'm just trying to talk
to people. Like somebody must
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have the knowledge I need.
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Simon Adler: And when he
eventually did find that person,
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well, unfortunately, it only
made the uncertainty worse. The
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doctor explained to him that
yes, they'd found a small amount
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of cancer in his colon, and it
was possible that that cancer
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had made it to his lymph nodes.
In which case, he was in serious
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trouble. However, it was also
possible that the cancer had not
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reached his lymph nodes, that
they had cut all of it out
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during the colonoscopy, and that
he was currently cancer-free and
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totally fine. But which of those
two is true...
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Loren Ludwig: ...was simply not
knowable without taking out a
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foot and a half of my colon to
see whether there's cancer in
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the lymph nodes.
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Simon Adler: And so, is that the
big decision point here? It's
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like, do I get this thing cut
out? Do I have them take out how
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how much of it was it?
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Loren Ludwig: Yeah, like a kind
of a foot and a half. So it came
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down to this question of, like,
okay, there's some number that
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we can assign to the likelihood
that the cancer has made it into
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the lymph nodes, and there's
some...
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Simon Adler: Probability.
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Loren Ludwig: ...some
probability, exactly, but
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everybody's got different ideas
of the numbers. So I'm getting
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ten percent, fifteen percent,
five percent, forty percent.
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Simon Adler: On top of that,
they're hitting him with how
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long he'll likely live if it's
reached the lymph nodes.
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Loren Ludwig: Numbers like less
than two years, less than a
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year, five years.
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Simon Adler: And on top of
that...
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Loren Ludwig: When I would talk
to clinicians about this
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surgery, the thing they wanted
to talk about first was the
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risks, and they were like,
"doing the surgery has some
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risks associated with it." And
so how do I, how do I make a
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decision? Like, I don't have an
equation for that.
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Simon Adler: Right, it sounds
like in an attempt to penetrate
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the uncertainty, they went to
math, and not straightforward
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math, but relational
probabilities.
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Simon Adler: ...that now you
need to have a math PhD. Are you
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Loren Ludwig: Right, yeah.
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a math guy? Like?
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Loren Ludwig: No, no, no,
assuredly not.
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Loren Ludwig: And and um, I'm
not. I'll never be an expert in
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Simon Adler: Okay.
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that stuff. And so, this was one
of those things of like, just
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how do I make a decision so that
I'll continue to be alive?
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Sounds dramatic to say it, but
the the stakes were pretty clear
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in terms of figuring that out as
a kind of life or death
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question. And again, I don't
want to be overly dramatic, but
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that's what it felt like. It
felt like there's-I need to I
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need to know the answer to this,
and the experience of not
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Gail Geller: thing before before
I retire, the one thing I wanted
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knowing the answer and not
knowing how to think about what
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the answer might be, plus not
trusting or having confidence
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that that the the medical
establishment was like taking
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care of it and asking the right
questions and coordinating with
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each other was a-was a uniquely
terrible experience.
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to do is just have a course for
medical students, called like I
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don't know 101." You know, just
like practice saying those
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words. I don't know.
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Simon Adler: So this is Gail.
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Gail Geller: Gail Geller. I have
been on the faculty at Johns
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Hopkins for 35 years in the
School of Medicine and the
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Berman Institute of Bioethics.
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Simon Adler: She has spent her
career studying uncertainty, and
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she says that the various forms
of it that Loren faced with his
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diagnosis, about what his
doctors were thinking, about how
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he was even feeling, well, those
have just become hallmarks of
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medicine today.
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Gail Geller: In medical
practice, in medical education,
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yes.
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Simon Adler: Well, and so to ask
perhaps a stupid question, like,
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what actually is uncertainty?
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Gail Geller: Well, at the risk
of, I mean, I don't want to
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sound too academic about this,
but...
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Simon Adler: I'll reel you back
in if it gets too academic.
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Gail Geller: Well, no, I mean,
so, so there's this idea that
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uncertainty is an umbrella term
for risk and ambiguity.
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Simon Adler: Okay.
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Gail Geller: So when you're
talking about risk, you're
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talking about situations where
the probabilities are known,
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whereas you know ambiguity
arises in situations where the
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probabilities are unknown.
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Simon Adler: So this is the
known unknowns, unknown
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unknowns. Is that Rumsfeld? Was
that Donald Rumsfeld's thing?
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Gail Geller: Yeah, yeah.
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Simon Adler: Okay.
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Gail Geller: So those are two
very, very distinct forms of
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uncertainty.
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Simon Adler: Neither of which,
she says, really used to be all
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that present in medicine.
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Gail Geller: In the early days
when you know basically all we
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had was antibiotics for
infection, the doctor was the
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expert, and that doctor, mostly
men, but he or once in a blue
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moon, she would know what was
needed to be known.
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Simon Adler: We knew less.
Things were simpler, and so, in
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a sense, there was just less
uncertainty. But then, that
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really changed with one moment.
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Gail Geller: I think yes.
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Simon Adler: Okay.
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Gail Geller: I'm not sure
whether I'm identifying that
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because it happens to coincide
so beautifully with my career.
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Which I mean, you know...
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Simon Adler: Every philosopher
believes that they're the last
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philosopher. They are at the end
of the Hegelian arc, so it's
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fine. You're-you're amongst a
great tradition of people here.
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Gail Geller: So I would say the
Human Genome Project.
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Archive: We are here to
celebrate the completion of the
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first survey of the entire human
genome.
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Simon Adler: Okay.
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Gail Geller: 1990 is when the
Human Genome Project was
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started...
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Simon Adler: This massive effort
to map every A, C, T, or G of
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our genetic code.
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Gail Geller: ...and the people
who were working in genetics
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Archive: It will revolutionize
the diagnosis, prevention, and
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were so confident.
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treatment of most, if not all,
human diseases.
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Gail Geller: ...that genetics
was going to be the answer to
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everything...
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Archive: Alzheimer's,
Parkinson's, diabetes, and
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cancer.
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Gail Geller: ...all the unknown
questions we've had, and it's
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answered some questions, but has
raised so many more.
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Simon Adler: Like, take for
example, she says before the
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Human Genome Project...
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Gail Geller: ...you were either
well or you were sick.
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Simon Adler: You were presenting
with the problem or you weren't.
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Gail Geller: Yeah.
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Simon Adler: Whereas after,
there was this third totally new
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category:
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Gail Geller: the at-risk patient
that's neither sick nor well,
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but may be sick or living with a
risk factor and may not ever
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develop that condition...
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Simon Adler: ...putting both
patients and doctors in a really
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difficult spot...
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Gail Geller: ...because doctors
have this massive amount of
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information they have to
understand themselves,
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communicate to their patients at
the same time that the patients
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are coming in with, you know,
demanding more information about
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their risk, and so you know,
medical school has to evolve.
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You know, medical school has to
become more and more about
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teaching you a way of thinking
and how to find the information
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that you need, not this sort of
we have all the information and
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you just need to memorize it.
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Simon Adler: But if uncertainty
in medicine can be seen as a
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problem, she says, it can also
be seen weirdly as progress.
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Look at Loren's situation, she
says, yes, it was full of
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uncertainty, and yes, it was
miserable. But the very presence
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of that uncertainty was a
consequence of our
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ever-expanding knowledge. Like
he could only be uncertain about
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what he should do because we
knew that he should get screened
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at 45, and because we know how
to biopsy polyps, and because we
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know how to remove 18 inches of
your colon without automatically
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killing you, and in that way,
she says, the uncertainty he
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faced, as painful as it was, it
is a feature of the system we've
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built, not a bug.
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Gail Geller: Absolutely,
absolutely.
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Simon Adler: I love this
argument you've laid out that
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there was this explosive growth
in knowledge that led to truly
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more uncertainty when it came to
medical diagnoses: if only
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because we knew more, there were
now more questions to ask. And,
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you are advocating for a
different approach inside the
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medical system that could
alleviate some of the tension
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that that uncertainty has
caused, but what we haven't
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discussed yet is the sort of
larger medical infrastructure,
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the demands on doctors to see
patients in 15 minutes, and how
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do you fit these ideas of yours
into that without demanding the
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whole thing be rebuilt from the
bottom up?
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Gail Geller: Yeah, I've thought
a lot about this...
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Simon Adler: I'm sure you have.
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Gail Geller: ...because it you
know that question's been asked
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a lot, and...
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Simon Adler: You're telling me
I'm not original?
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Gail Geller: No, no, no. You
have been amazingly original.
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You know, I sort of cringe when
I hear the excuse, and you know,
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because because I've heard it my
entire career, you know that
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that we don't have time, and I
don't mean to be unempathic. I
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think doctors are overwhelmed,
overworked, all of that, but but
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I don't- I think we have to
support them in understanding
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that it doesn't it doesn't have
to take a lot of time. It has to
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take a lot of letting go. There
was a dean, I believe it was a
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dean of- at Harvard, who gave a
lecture at some medical
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education conference, and he
said, "you know, I do, I do the
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orientation for students every
year." And he said, "I start the
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orientation with, you know,
welcome to medical school. I'm
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here to tell you that 50% of
what you're about to learn isn't
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true, and furthermore, I can't
tell you what 50%
that is." You
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know the the simple- it's not
simple actually, it's kind of
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profound in a way, to start the
whole process with the idea that
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we are in this great exploration
together. And-and frankly, to
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me, that's the kind of ideal
doctor. It's the doctor who
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says, "yes, we will learn as
much as we can about what's
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knowable. We'll get to the
answer if the answer is knowable
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today, and we'll play with all
the rest."
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Simon Adler: Were there pieces
of music you were working on as
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this uncertainty was swirling?
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Loren Ludwig: You know, I
haven't- I haven't...
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Simon Adler: Again, Lauren
Ludvig.
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Loren Ludwig: ...there's-there's
one song actually that I was
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playing a lot at that point that
takes me to that place.
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Simon Adler: Can I hear you
playing?
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Loren Ludwig: Yeah, yeah.
That's-that's this great this
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great tune called Bonaparte
Crossing the Rhine of all
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things. Yeah, that that that was
a that was a thing... was kind
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of sitting there and playing
that tune and letting my mind
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wander and you know-
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Simon Adler: Where would your
mind wander as you were
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practicing that?
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Loren Ludwig: Well, you know, I
was trying to make this decision
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about this surgical
intervention, and because I
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didn't have the information, and
I didn't know how to think about
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it, and I didn't know what I
didn't know, and all of that,
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there was just a lot of
ruminating on it. Kind of what
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you know, sort of sometimes
maybe not in a great way of just
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kind of cycling. And when you
have a tune like that, kind of
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going underneath, and you're
yeah, you discover oh, I've just
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been playing this thing again
and again for ten minutes, and
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and I've been thinking about all
these things, you know.
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Simon Adler: What was the what
was the decision point? Was
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there a moment?
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Loren Ludwig: What I eventually
came away with was that the idea
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of discovering that the cancer
had made it into my lymph nodes,
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and I had chosen to not do the
procedure, that would be a very
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difficult conversation to have
with myself. So, I eventually
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got there. And the surgery was
fine. The several days in
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recovery didn't go well for a
number of frustrating reasons
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that are kind of along the lines
of I'm going to say like the
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institution not quite having
their act together in the places
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that they needed to at that
moment, and that was hard and
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frustrating and sucked actually.
But also I'm still alive. They
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didn't find any cancer in the
lymph nodes. I feel like I
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can't. I-I really have nothing
to complain about here.
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Simon Adler: What we're two
years out from this? May? We're
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coming up on two years.
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Loren Ludwig: Yeah, yeah.
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Simon Adler: You're still here,
and you're cancer free.
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Loren Ludwig: Cancer free, so
far as I know. Knock on wood.
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Simon Adler: Okay.
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Loren Ludwig: Yeah.
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Simon Adler: I'm very happy to
hear that.
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Loren Ludwig: Thank you.
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Simon Adler: But two years out,
I guess, what it- what meaning
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do you pull from all of this?
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Loren Ludwig: I think if I
hadn't been so distracted trying
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to dispel the uncertainty, like
if I'd known in advance that
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it's the uncert- it turtles all
the way down, it's uncertainty
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all the way down. There's not
really you don't really hit a
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bottom there, both like
institutionally and in relation
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to a particular patient, and in
relation to cancer and prognoses
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more more generally, that I
might have maybe next time when
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I'm dealing with something like
this, I won't be so distracted
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by the uncertainty part of it,
and somehow feeling like if I
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just cure the uncertainty, then
I can somehow make myself
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healthy again. It's like no, no.
There's going to be a ton of
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uncertainty. You're not going to
know it. You're not- you're just
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that- that is the cloud.
That's-that-that is what's hard
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about the whole thing, you know?
I basically look at this whole
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thing not as like, oh, I could
have known, but I just somehow
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couldn't access the information.
I look at it as like the
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uncertainty isn't that
dispellable in a lot of cases,
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and in fact, you still have to
make decisions and feel things,
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and don't get distracted by
trying to get yourself certainty
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because it's not actually going
to be available.
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Lauren Arora Hutchinson: Gut
Strings is an original
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production by the
Dracopoulos-Bloomberg iDeas Lab
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at the Johns Hopkins Berman
Institute of Bioethics. This
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00:22:55,035 --> 00:22:59,385
production is inspired by
Professor Gail Geller's 35 years
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of social and ethical research
on medical uncertainty. Special
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thanks to Loren Ludwig for
sharing his personal
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experiences. This was written
and produced by Simon Adler.
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Viola de Gamba musical
performance by Loren Ludwig. Our
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00:23:19,500 --> 00:23:23,430
executive producers are Lauren
Aurora Hutchinson and Tony
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Phillips. Sound engineering by
Alexander Overington. Production
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00:23:29,760 --> 00:23:35,025
assistance from Brian Ricker.
Our administrative coordinator
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is Leah Lord. This production
was funded by Johns Hopkins
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00:23:40,425 --> 00:23:44,505
Program in Arts, Humanities, and
Health, which is led by Gail
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Geller, Kamna Balhara, and Loren
Ludwig.