The Language of Difference: Increasing Equity and Inclusion in How We Categorize Patients

April 04, 2023

March 29, 2023

Mildred K. Cho, PhD

Professor (Research), Pediatrics, Center for Biomedical Ethics , Stanford University

Professor (Research), Medicine, Primary Care and Population Health , Stanford University

Associate Director, Stanford Center for Biomedical Ethics

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ID: 9798
To Cite: DCA Citation Guide

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00:02Well, welcome everyone to tonight's
00:05webinar from the program from the
00:08Yale Program for Biomedical Ethics.
00:13I'm doctor Jack Hughes,
00:15and I will be your host tonight.
00:20I, along with my colleague Sarah Hall,
00:22am an associate director of the
00:26Program for Biomedical Ethics, our.
00:32The our our usual host and the director
00:36of the Program for Biomedical Ethics,
00:39Doctor Mark Mercurio, is out of
00:41town and will not be here tonight.
00:44But we are pleased tonight to hear
00:48from Professor Milger Cho from
00:50Stanford University, who will talk to
00:53us about the language of difference,
00:56inclusiveness and equity. In the,
01:02excuse me, increasing equity and
01:06inclusion in how we categorize patients.
01:10So before I introduce Doctor Cho,
01:14I want to tell you,
01:14I want to say a few words about
01:17the program for biomedical ethics
01:19and and also about how we're going
01:22to conduct tonight's program.
01:24The program for Biomedical Ethics,
01:26as many of you are aware,
01:28brings speakers on a variety of
01:31topics in biomedical ethics on
01:34at least once or twice a month.
01:37And let me tell you about our
01:42a couple of upcoming sessions,
01:44one of which will be
01:50let me see, I have it down here.
01:54Yes, Professor Jen Miller from Yale
01:56will be talking to us about equity and
02:00biomedical research on April the 19th.
02:05We will be sponsoring a day long
02:09seminar on ethics of the heart justice
02:13considerations in in heart failure.
02:15That will be on May 11th and that is
02:19organized by my colleague Dr. Sarah Fall.
02:23So,
02:26so in tonight's session,
02:31Professor Cho will speak for approximately
02:3745 minutes and after which she will
02:42receive questions and comments.
02:44Please put your your comments
02:46and questions into the chat
02:48function and I will read those to.
02:52Professor Cho at the time. So
02:59Professor Cho is professor of
03:01Pediatrics and medicine at Stanford,
03:04and she's the director of the Stanford
03:07Center for Biomedical Ethics.
03:09She's also the principal investigator of
03:12the Stanford Center for Integration of
03:16Research on Genetics and Ethics. And she is.
03:24She is in addition to the director,
03:29she's she is professor, and she is the
03:38her major areas of interest are the ethical
03:41and social issues raised by new technologies
03:44such as genetic testing, gene therapy,
03:47pharmacogenetics and gene patents.
03:50She also studies how academic industry ties
03:54affect the conduct of biomedical research.
03:58She was an undergraduate at MIT,
04:01obtained her PhD at Stanford.
04:05And then did a health policy
04:07fellowship at the University of
04:08California at the San Francisco.
04:10She has been at Stanford
04:11for the past several years.
04:13She is highly regarded as a mentor.
04:16She is a productive author and researcher.
04:20And we are delighted to have her
04:23here tonight to talk to us about
04:25the language of difference,
04:26increasing equity and inclusion
04:29in how we categorize patients.
04:32Professor Cho.
04:34It the the floor is yours.
04:36Thank you very much.
04:37Thank you. Thank you, doctor.
04:57So thank you very much for inviting
05:01me to join your group today.
05:04I'm going to be talking a little bit
05:06about the topic that I is not really
05:09the focus of my main areas of research,
05:11but it's one that I think is important to.
05:18Addressed for bioethicists as well As for
05:22biomedical scientists and clinicians. So
05:32I hope you're able to see my slides here.
05:40They look great. OK, good.
05:47So what I'll be talking about today
05:51stems from some work that I've
05:54done on what we call DEI efforts,
05:58diversity, equity and inclusion
06:01efforts at Stanford and elsewhere.
06:03And as many of you know,
06:05these types of efforts are now
06:08pervasive in biomedical research
06:11at at medical institutions and.
06:15Some of these efforts are aimed
06:17at increasing diversity of human
06:20participants in research as well
06:22as in the research workforce.
06:26The political and social forces
06:28driving some of these efforts have been
06:31comprehensively studied by sociologists
06:33such as Steven Epstein and others,
06:36but an under examined issue in DEI is the
06:40language and the concept of human difference.
06:43Not just as an exercise
06:45in political correctness,
06:47but in looking at DEI as an
06:49ethical issue more broadly.
06:51So what I hope to do is to show
06:54why we need to critically examine
06:56what we mean by diversity,
06:58including how we measure it,
07:00and that we must take care to ensure
07:02that the language we use to concepts of
07:07difference are scientifically accurate.
07:10Clinically useful and not morally offensive.
07:21So I'll argue that these
07:24issues are ethical issues.
07:26So what I'm showing you today is a part
07:29of a national academies of sciences,
07:32engineering and Medicine report on
07:34the use of population descriptors in
07:37genetics and genomics research that
07:39was just released earlier this month.
07:41And it provides recommendations for
07:43the use of categories such as race,
07:45ethnicity and ancestry,
07:46which are built on a framework of
07:49ethical principles which you can
07:50see here in the middle of respect,
07:53beneficence, equity and justice,
07:56as well as scientific values of validity,
07:59responsibility,
07:59transparency and replicability.
08:01So although this report was intended
08:05for genetic research communities.
08:08The principles apply to research
08:10relevant to humans more generally,
08:11and also to categories of human
08:13difference other than race,
08:15ethnicity, and ancestry.
08:22So how I got started into
08:24some of these issues,
08:26looking at some of these issues,
08:29was because of my role on.
08:35On the editorial board of a journal
08:37called Genetics and Medicine and
08:40on a committee for this journal
08:42that was called the Idea Committee,
08:44the Inclusion, Diversity,
08:46equity and Access Committee.
08:48As chair of this committee,
08:50the EDITORINCHIEF asked us to reexamine
08:54the publications that have been put
08:57out by the the journal over time.
09:01For to look for possible offensive
09:05terminology and to think about what
09:07we should do about it as a journal.
09:10And I know that many other journals,
09:11professional societies,
09:13publishers and others have
09:15been doing similar things,
09:18and in particular journals have been
09:24out. Have been issuing guidelines
09:26on language such as the American
09:30Psychological Association which
09:32you can see up on top has a style
09:34guide and a major section of the
09:36Style guide is called Bias free
09:38language and it has very extensive
09:41resources and recommendations for
09:43the for language to be used in
09:47publications of the society.
09:50On the bottom right,
09:52you can see that there have been
09:54publications and guidance issued by
09:57biomedical journals such as JAMA.
09:59In particular,
10:00this one was an updated guidance focusing
10:03on reporting of race and ethnicity
10:06in medical and science journals.
10:08So what our journal was doing was
10:10part of sort of a much larger movement.
10:18So that was how it started, sort of.
10:21Where we got to was publication
10:23of an article called words Matter,
10:26the language of difference in Human Genetics.
10:28And I'll be telling you about that
10:31paper through the rest of this talk.
10:34And I want to acknowledge my
10:35coauthors who some of whom are
10:37members of the Idea Committee,
10:39with me, in particular,
10:41Laura du Galassio and, you know,
10:44Laura du Galassio.
10:46Who is also a molecular pathologist
10:50and laboratory geneticist,
10:52as well as Inna Amarillo,
10:54who also runs a clinical genetics laboratory.
10:57Kevin Mintz,
10:57who is not a member of the committee
11:00but Disability Rights Scholar who
11:03also works on issues of disability
11:06as they intersect with genetics.
11:09Robin Bennett and Kyle Brothers,
11:11who are members of the committee.
11:13Robin is a genetic counselor.
11:16Who has been working on guidelines for
11:18terminology for the National Society of
11:21Genetic Counselors for almost 30 years now,
11:24and Kyle Brothers,
11:25who is a pediatrician and also
11:30an LC scholar who is works
11:32on the committee with me.
11:37So some of the premises of this paper are
11:42that in biomedical research and medicine.
11:45Language that defines the boundaries
11:46of human difference is pervasive.
11:48In fact, some of this language is critical,
11:52and the concepts behind them are
11:54critical to conducting biomedical
11:56research and to clinical practice.
12:01But the use of these categories
12:04in research and clinical practice
12:06does reify those boundaries.
12:08And the classification schemes that
12:11they imply confer power and privilege
12:14to some and marginalize others,
12:17which was very well described in the
12:20seminal book by Jeff Bakker and Susan
12:23Lee star called Sorting Things Out.
12:27And these classification schemes can
12:29also lead to poor health outcomes,
12:37so. Let's ask ourselves some questions
12:41about categorizing difference,
12:43because these categories
12:45do make a difference.
12:47What do we mean by diversity?
12:49Why do we classify according to certain
12:52features of difference and not others?
12:56An important part of biomedical
12:59research and clinical practice
13:00is creating and classifying.
13:03According to these categories of difference,
13:05in order to delineate,
13:07delineate normal from abnormal,
13:09pathogenic, from non pathogenic,
13:11and other features which are necessary
13:14to identify correlates of disease.
13:17However, we know that classification
13:19schemes privilege some, marginalize others,
13:21and confer power and control to those
13:25who devise the classification schemes.
13:28So what I'll discuss today is why
13:30it's important to ask questions about.
13:32Why we are categorizing diversity and
13:35how those categories are derived and why?
13:38These are also ethical questions
13:40and what I'm showing here is one
13:46example of a categorization in the
13:49international classifications of
13:52diseases which has a category that is
13:56called struck by Orca initial encounter.
14:05So one major reason that the application
14:08of the categories medically harmful for is,
14:17for example, an example of how they can be
14:20medically harmful is through the practice,
14:23for example, of race norming or
14:26that these categories can lead to
14:29discrimination and access to services.
14:32Another way these categories can be
14:34harmful is if they're morally offensive by
14:37reinforcing injustice and showing disrespect.
14:40The categories in the labels used to
14:42describe them are often value laden
14:44and often assigned by people who not
14:47do not belong to those categories.
14:49Finally, when categories that are used
14:51or derived from social or political
14:54purposes are used in clinical practice or
14:57biomedical research for different purposes,
14:59they can be harmful
15:01because they're inaccurate.
15:02And lead to inappropriate aggregation
15:04or disaggregation of data and
15:07eventually health disparities.
15:09I'll discuss several different
15:11types of classification and the
15:14language used to describe them,
15:16including disability and severity of disease,
15:20sex and gender, and race and ethnicity.
15:23And I think this may be a good time to
15:26give people a trigger warning that I will
15:29be using terms that are considered slurs.
15:31Throughout this talk,
15:33because they're commonly used in
15:35medical and scientific parlance today,
15:38and it's necessary to identify them in
15:40order to call them out as inappropriate
15:43and also to present alternative language.
15:45And I say this also knowing that from my
15:50role as on the editorial board of a journal,
15:52a scientific journal that every day.
15:57I am asked to look at manuscripts
15:59that are submitted to the journal that
16:02still continue to use terminology
16:04that are considered slurs.
16:08So I think it's important to start
16:11a conversation about educating,
16:15educating various communities
16:16about how and why these are
16:19considered inappropriate now.
16:26So let's start with the concept of disability
16:29and looking at some definitions of it.
16:32The first one is from the ADA,
16:35which defines a person with a disability
16:39as a person who has a physical or
16:42mental impairment that substantially
16:43limits one or more major life activity.
16:47The second one comes from the CDC,
16:48which defines disability as any
16:50condition of the body or mind.
16:53That makes it more difficult for
16:54the person with the condition to
16:56do certain activities and interact
16:58with the world around them.
17:00So you can perhaps imagine how these
17:02definitions have an element of subjectivity,
17:04but also that they focus on biological and
17:08physical characteristics of individuals.
17:15The Who published an international
17:17classification of functioning,
17:19disability and Health to give some
17:21help to the concepts of function,
17:23activity and participation levels,
17:25and perhaps to reduce some subjectivity.
17:29More importantly,
17:30the ICF implicitly acknowledges the
17:32role of environmental conditions in
17:35essentially creating disability by raising
17:38barriers to activity and participation.
17:41Thus, it acknowledges that
17:43disability is not just a biological
17:45characteristic of an individual,
17:46but includes a component of
17:48interaction with the environment,
17:50an idea that is central to
17:51the disability critique.
17:58So because biomedical researchers
18:00play a big role in defining
18:02categories of disability and disease,
18:04and because these definitions
18:06are value laden, it's the job.
18:08Of researchers and bioethicists as
18:11well to take a thoughtful approach
18:14and guard against and combat ableism
18:17in the act of classification.
18:19Ableism is discrimination against
18:21and stereotyping of whole groups of
18:23people based on incorrect assumptions
18:25that people with typical or normal
18:28abilities are superior to those with
18:30disabilities and that the disabled state
18:33is undesirable and something to be fixed.
18:37Unfortunately, ableist tendencies
18:39are deeply embedded in our
18:41society and in science as well.
18:44Most of you have heard about the
18:48$1927.00 versus Bell decision by
18:51the US Supreme Court in which the
18:54court upheld a Virginia statute that
18:56provided for the sterilization for
18:59of people considered genetically
19:00unfit and paved the way for laws.
19:04That were similar to that in 30 States
19:06and leading to an estimated 65,000
19:08Americans being sterilized without consent.
19:12It's the categorization of Carrie
19:14Buck as being genetically unfit
19:18based on being labeled as
19:21feebleminded and promiscuous
19:24that was central to this case,
19:27and this alleged promiscuity
19:29led her to having a child.
19:32And then the famous quote 3
19:34generations of imbeciles are enough.
19:39However, there was no evidence for
19:42this family's feeblemindedness.
19:44Carrie Buck was known to be an
19:45avid reader of the newspaper,
19:47and her school record in fact indicated
19:49that she was not feebleminded.
19:51Carrie's daughter Vivian was at
19:53worst A/B student in school,
19:55and even on the honor roll one year
19:57Carrie's socalled promiscuity was actually.
20:00The relabeling of her rape
20:03by Clarence Garland,
20:04a relative of her foster parents,
20:07however, Harry Laughlin,
20:08director of the Eugenics Record office
20:10at Cold Spring Harbor Laboratory,
20:11was the scientific expert who
20:13nonetheless opined that Carrie Buck
20:15should be sterilized based on the
20:17assessment that she was feebleminded.
20:19Those categorizations that were key
20:21to allowing infringement of critical
20:23individual rights and liberties
20:25were absolutely not evidence based
20:27and were but were protected by a
20:30veneer of scientific authority.
20:31While this Supreme Court case
20:33perpetrated many moral injuries,
20:35I think it's also an example,
20:37albeit perhaps an extreme example,
20:39of how categorization is misused
20:41to great harm.
20:48A different way that values are
20:50embedded in categories is in the
20:52terminology used to describe them.
20:54Efforts by disability rights
20:56groups and people with lived
20:58experience with disabilities,
20:59as well as their families,
21:00have led the way towards greater
21:03inclusivity of language to signal
21:05respect and trustworthiness.
21:06There's evidence that for
21:08those with disabilities,
21:09lack of inclusivity and respect are
21:12ongoing barriers to receiving healthcare,
21:15so these signals are more than symbolic.
21:19Some specific actions that have
21:21been taken include the passing of
21:23Rosa's law in the United States,
21:24which changes references to mental
21:26retardation of federal law to
21:28intellectual disability and changing
21:30mentally ******** to individual
21:32with an intellectual disability
21:35taking a first person approach.
21:37Families in the European fragile X
21:41network have also recently led the
21:44charge to rename the FM R1 gene.
21:49To the fragile X messenger ribonuclear
21:52ribonuclear protein 1 gene.
21:56However,
21:57in order to make good on the
21:59principles of respect and beneficence,
22:01it's important to look to disability
22:04communities to understand when and
22:06for whom taking the first person
22:08approach is or is not preferred.
22:10For example, many,
22:11but not all individuals who are
22:13deaf or who live with autism
22:15spectrum disorder prefer being
22:16referred to as deaf or autistic,
22:18symbolizing that they consider
22:20themselves part of a distinct cultural
22:22group or have a distinct identity
22:24on the basis of their disabilities.
22:26However,
22:27this begs the question about whether,
22:29when,
22:29and how researchers and
22:31clinical professionals should be
22:34categorizing conditions people for
22:36research and clinical purposes.
22:38And categories for new for scientific
22:41purse should also be used for medical,
22:43social policy and political purposes.
22:50So moving on here to another example
22:54of categorization of severity of
22:58disease, I'll show you a recent
23:02example which is the product
23:04of value based decisions.
23:06In this case, decisions made by
23:08clinicians and criticized not only
23:10for the categories themselves,
23:11but for the process by
23:14which they were generated.
23:15So in this example,
23:17I'm showing you here an article which
23:21represents guidelines for carrier
23:24genetic carrier screening issued by the
23:27American College of Medical Genetics.
23:30And these guidelines were meant to
23:33address equitable distribution of
23:34the benefits of genetic screening.
23:36These guidelines expanded the
23:38populations that were recommended to
23:40get genetic screening for conditions
23:42that are have been associated with
23:47specific population subpopulation.
23:50So prior to this update,
23:53genetic screening guidelines
23:54recommended that cystic fibrosis
23:56screening be offered to those
23:58of Northern European ancestry or
24:00sickle cell disease be offered
24:02to those of African ancestry,
24:04for example.
24:05So the update recognized that these
24:08populations are not accurately
24:09respective of who is likely to be
24:12a carrier of the associated genes,
24:14so the recommendations were no longer
24:16limited to specific populations,
24:20however well-intentioned,
24:21these guidelines were criticized
24:23in part because of how categories
24:26of disease severity were
24:28defined in these guidelines.
24:31Disease severity is typically a key
24:33factor in public health screening criteria,
24:36as well as disease prevalence,
24:38analytic validity,
24:39availability of treatment for
24:41diagnostic or reproductive options.
24:47You can see some of the categories of
24:50disease severity used in these guidelines
24:52on the right side of the screen here,
24:54including categories called profound,
24:57severe, and moderate.
25:01In a blog late last year,
25:03the genetic counselors Katie Stoll
25:05and Robert Resta highlighted the
25:08categories of disease severity and
25:11noted that it's concerning that
25:13the study puts conditions that
25:14are associated with intellectual
25:16disability in the same group as
25:18those that are associated with death
25:20and infancy or early childhood.
25:22Also, if we look across the lifespan.
25:25Many if not most of us will experience
25:28some features that could be counted
25:31in the severe and or moderate buckets.
25:34So importantly,
25:34stolen Resta went on to critique how
25:37the categories of disease severity
25:40were just were actually derived being
25:43based on a single limited survey of
25:46healthcare providers that was conducted
25:48by the company called Council,
25:50now called Myriad Genetics because
25:53they were bought by Myriad.
25:56And this survey was limited to 192
26:00genetic counselors and physicians,
26:02and did not include those with lived
26:04experience with the conditions
26:05included on the ACMG panel.
26:13So let's look at some recent examples
26:15of changes to language describing
26:17categories of sex and gender in
26:20clinical documents, such as laboratory
26:22requisition forms and reports.
26:25Part of the rationale for these
26:27suggested changes in language is
26:29that the pathologization of these
26:31characteristics and identities of
26:33these groups adds to the stigma,
26:35harassment, violence,
26:36and healthcare inequities
26:37these groups already face.
26:39With very poor health outcomes
26:41and leads to lack of trust in the
26:43healthcare system as a whole.
26:47These changes to category names
26:49represent a major shift that's.
26:51Can signal respect for gender and
26:53sex and sex minority communities and
26:56trustworthiness of healthcare providers,
26:59but more work needs to be done to fully
27:01and adopt inclusive language throughout
27:03the research and healthcare enterprises.
27:11Other medical professional groups
27:13working with patient advocates have
27:15also instituted changes to language
27:17describing sex and gender minorities
27:20to make categorization more expansive
27:22and more inclusive of differences.
27:24In particular, terms that imply
27:26that only cisgendered individuals
27:28are normal while others are
27:30abnormal have been discontinued.
27:32Again, this inclusivity is not just symbolic.
27:35It facilitates the collection of clinically
27:38relevant biological and social data,
27:40as well as signaling respect,
27:42trustworthiness and affirmation
27:44of a diverse identity,
27:46and conclude to increase clinic visits
27:49and seeking access to care according to.
27:54A large number of empirical
27:56studies that have documented this.
28:02There's another example from the
28:03National Society of Genetic Counselors,
28:05which last year changed its standardized
28:08pedigree nomenclature in response
28:10to quote a growing awareness of the
28:13nonbinary nature of sex and gender,
28:15as well as respect for the importance
28:18in clinical settings of a person's
28:21selfidentified gender and sexuality.
28:23And this this article explicitly cites
28:27evidence linking patients access to health
28:31records with better health outcome.
28:34You can see in this diagram.
28:36Or maybe, maybe you can't,
28:37but I hope you can see that there are
28:40there's some new nomenclature symbols
28:42which now includes a diamond shaped symbol
28:46at the bottom row there in addition to
28:49the previously used squares and circles.
28:52And note that symbols represent
28:54gender identity as opposed to
28:56phenotypic gender and not sex.
28:58The nomenclature also relies heavily on
29:01annotation to add details of chromosome,
29:03complement and family relationships
29:05that are relevant to clinical
29:07interpretation of the pedigree,
29:09such as adoption, the use of donor gametes,
29:12or gender affirming surgeries.
29:16So this represents a major shift
29:18and I think a move towards.
29:21Both being more respectful
29:23of patients identities,
29:25but also seeking to be more
29:29clinically and scientifically
29:31accurate in capturing data in
29:34and interactions with patients.
29:41So move on to categories
29:43of race and ethnicity.
29:45Why do we use race and ethnicity
29:47as categories in biomedical
29:49research and clinical care?
29:51In part, it's based on the assumption
29:53that people of different races or
29:56ancestries have different Physiology.
29:58However, this is potentially dangerous.
30:00It's led to practices such as race
30:03norming that I mentioned before,
30:05that have been criticized because of
30:08their inaccuracy and the potential to
30:10lead to under diagnosis and treatment,
30:13or under under treatment or
30:15withholding of benefits from
30:17already disadvantaged groups.
30:21Another example of how this can
30:23be this thinking is dangerous is
30:26from the infamous study based on
30:29assumptions of differences between
30:30blacks and whites in their Physiology
30:33of response to infectious disease,
30:35which you've probably heard of
30:37the socalled Tuskegee study of
30:39untreated syphilis in the ***** male.
30:49But I and dozens of others have argued
30:51that using social categories of race and
30:53ethnicity are as proxies for biological
30:55characteristics such as Physiology
30:57or genetics or correlates of disease,
31:00is extremely inexact at best,
31:02and does not comport with evidence.
31:05As a very simple example,
31:08clinicians are taught to think of
31:09sickle cell disease as a disease
31:11of blacks or African Americans.
31:13But the highest rates of sickle cell
31:15disease are in some areas of Africa,
31:17but also include India, Sicily,
31:19Greece and southern Turkey.
31:21And on the African continent,
31:23the prevalence of sickle cell
31:25trait in specific areas ranges
31:27from less than 1% to 45%.
31:29So typological thinking can be
31:31very misleading when applied to
31:34clinical care in some situations.
31:42However, until very recently,
31:44there's been little challenge
31:46in biomedicine to the very idea
31:48of the category of race itself.
31:49For example, in its recently updated
31:522021 guidance on the use of racial
31:55and ethnic terms in publications,
31:57JAMA recommended replacing the
31:59term Caucasian with white.
32:02Only stating that it quote is
32:04technically specific to people from
32:06the Caucasus region in Eurasia and
32:09thus should not be used except when
32:11referring to people from this region.
32:14However, the guidance does not refer
32:16to the fact that Caucasian was at one
32:19point one of two categories of humans
32:21that were and this the Caucasian
32:23group was considered white skinned and
32:25beautiful in contrast to the other
32:28category that was considered Mongolian.
32:30Who were devoid of virtue or later.
32:34Caucasian was one of five
32:36categories of human races which
32:38represented God's original creation,
32:40in contrast to the other four
32:42which were considered degenerate
32:44versions of the original human form,
32:53so also in 2021.
32:56My colleagues on the Idea Committee of
32:59the Journal of Genetics and Medicine,
33:01Kyle Brothers and Robin Bennett and
33:03I proposed principles supporting
33:05anti racism in publication of Human
33:07Genetics and Genetics research
33:09which were went a little further but
33:13beyond previous recommendations.
33:16And addressed appropriate and
33:18inappropriate uses of entire categories
33:21of race and genetic ancestry.
33:23And you can see in a couple of the
33:25principles out of the 8 principles
33:27that we described in this article
33:31that we tried to make distinctions
33:34between the use of race as a social
33:39political category and genetic
33:43ancestry as well as ethnicity.
33:55So the recent guidance of the
33:57national academies that I mentioned
33:59previously on the use of population
34:01descriptors goes even further.
34:03It's more specific,
34:04outlining particular types of genetic
34:08research and where categories of race,
34:11ethnicity, ancestry,
34:12indigeneity or geography should not be used
34:16because they offer no scientific benefit,
34:19yet can cause social harm,
34:21this report cites.
34:23Many tones of evidence of such harm,
34:28and so it's.
34:29I highly recommend reading it if you
34:31would like to use it as such a resource,
34:33but I'll also show you some some other
34:37examples that we had described in our
34:40article as well as in other venues.
34:46So here is an example that shows the way
34:49that shows that the way we group people
34:52into categories shapes what we learn about
34:54the groups and potentially causes harm.
34:57In a retrospective analysis of over
35:0085,000 patients tested for COVID-19
35:02in the New York City Public Hospital
35:05system in spring of 2020,
35:07researchers analyzed COVID-19 outcomes of
35:10Asian ethnic subgroups compared to Asians.
35:13Overall, the.
35:17And other racial groups shown
35:19in in various colors here,
35:22so I'm not telling you which
35:24ones they are yet,
35:25but the researchers found that there
35:27were differences between groups
35:29of patients classified as white,
35:31black, Hispanic, and Asian.
35:32But they also found that the
35:35use of the Asian category masked
35:38important differences in mortality.
35:40So in this chart.
35:42The group that was called White is
35:45indicated here in orange on the left,
35:49showing a larger number of negative
35:53outcomes than the other groups shown
35:56in green, yellow, purple, and blue,
36:02and those other categories were
36:06representing these other other groups.
36:10Black, Hispanic and Asian
36:13in purple, respectively.
36:17But what's what is being shown in the
36:21bar that is in red is the rates of
36:24death in patients classified as Chinese,
36:27which are included in the purple bar.
36:30But when you separate them
36:33out into their own category,
36:35the death rates go up much higher.
36:46In another example, a US study of
36:49over 6 million patient records,
36:52researchers found similar differences
36:53between Asian subgroups and also
36:55between Hispanic subgroups,
36:57which included people who indicated
36:59they were of Puerto Rican,
37:01Mexican, Cuban, South American,
37:03or Central American origin.
37:06For example, they found that the
37:08prevalence of chronic liver disease
37:09was almost three times higher than.
37:11For Mexican patients compared to
37:13patients of Cuban ancestry, however,
37:16there were also significant differences
37:18based on whether you patients
37:20were US born versus foreign born.
37:22So cancer prevalence was twice as
37:24high among those who were US born than
37:26those who were born outside the US,
37:28thus confirming the immigration paradox.
37:31These studies,
37:31and many others like them suggest
37:33that race and ethnicity categories
37:35can mask health differences.
37:36And also indicate other variables,
37:38such as immigration or socioeconomic status,
37:41that might be more relevant but
37:43often not collected or analyzed.
37:46But does the routine routinized use
37:48of entrenched categories distract
37:50from the search for the most relevant
37:52category for the most relevant categories?
37:56So
38:00here I'll switch to another example,
38:02an old one, that shows how the entire
38:05category of race is conceptually
38:07bereft for scientific purposes.
38:09In this case, because it's conflated
38:11with ethnicity, intellectual ability,
38:14and physical appearance.
38:16So some of you may have may be familiar
38:20with paper that was published in 1866,
38:23the original paper describing
38:26what is now called Down syndrome,
38:29and in this paper Langdon proposed a
38:33classification of the feebleminded.
38:35By arranging them around
38:37various ethnic standards,
38:38and that's a quote in the paper.
38:40And the paper goes on to say,
38:42the number of idiots who arrange themselves
38:45around the Mongolian type is so great,
38:47and they present such a close resemblance
38:49to one another in mental power,
38:51that I shall describe an idiot
38:53Member of this racial division.
38:56So you can see the the conflation
38:58of all these different concepts
39:01here in these sentences.
39:06In the 1950s, it was recognized
39:08that this inaccurate conflation of
39:10race with the condition associated
39:12with variations of cognitive and
39:14learning abilities was inappropriate
39:15and led to the replacement of the
39:18term ********* with Down syndrome.
39:21Although this terminology arose centuries
39:24ago and was also replaced decades ago,
39:28it still persists in medical
39:30terminology to the present day.
39:33My my colleague Laura du Glazio alerted
39:36me several months ago to the idea,
39:38or to the fact that a quote from the
39:41original Langdon down article was
39:43very unproblematically presented in
39:44the header of the entry for twice
39:47semi 21 in the medical textbook
39:49Smith's recognizable patterns of human
39:52malformation in last year's edition,
39:54which is the newest edition.
39:57However, the underlying concepts
39:59are harmful in healthcare,
40:00especially when the categories they
40:02represent are assumed to represent
40:05clinical clinically relevant groupings.
40:14Furthermore, the underlying
40:15assumption of racial typologies is
40:18delineating pure or distinct and non
40:21overlapping groups also causes both
40:23scientifical and ethical damage.
40:25In this article, the authors call
40:27out the category of multiracial.
40:30Being used as the justification
40:32for removing data relevant to
40:34those individuals in the name of
40:37quality control in a database,
40:39which is a common practice.
40:41This does unnecessarily unnecessary
40:43violence to both the scientific
40:46analysis and as well leaves out a
40:49growing population from research.
40:57So how should biomedical researchers?
41:01And clinicians be more inclusive, respectful,
41:04and accurate in their description and
41:06categorization of human difference.
41:08There are many ongoing efforts,
41:10many of which I've mentioned here today,
41:15with specific recommendations on language
41:19study design and reporting in journals,
41:21but also on considerations for
41:24data collection and analysis.
41:27I shows some of the recent.
41:30Guidelines and resources here.
41:32A common theme in these recommendations
41:35about race and ethnicity is that
41:37it should be not it should not
41:39be used as biological variables,
41:41but only as social variables, and that
41:46how race and ethnicity are ascertained
41:50should be accurately reported.
41:52Importantly, why race and ethnicity is
41:54used should be carefully considered
41:56rather than done unquestionably.
41:59You know, whether they or other
42:01variables such as education,
42:02economic status or environmental
42:04factors are actually the most important
42:07to answering the study question.
42:10The National Academies report also talks
42:13about transparency and reproducibility.
42:16However, I also believe that
42:19bioethicists have a role to play here,
42:22as well as scientists.
42:26The report also places responsibility
42:28on research institutions and recommends
42:30that they offer tools such as
42:32educational modules for inclusion in
42:34human research protection, training,
42:36education and fostering interdisciplinary
42:40collaborations between scientists and,
42:43for example, sociologists,
42:46anthropologists and others,
42:47and for and with facilitating
42:50community engagement,
42:51among other things.
42:55So I'll show I have some slides
42:58here which have other resources for
43:03recommendations on more inclusive
43:07language here based on sex and gender
43:12and on the next slide for disability.
43:24So I'll just finish here
43:27by raising some questions.
43:32And to say that to make our research
43:34more diverse, equitable and inclusive,
43:36these are questions that researchers
43:39and clinicians should ask about how
43:41we are defining human difference.
43:43So what is the evidence that racial,
43:46ethnic, sex, gender,
43:47or other differences are essential
43:49to the research question and
43:51relevant to clinical practice?
43:53And are there other types of
43:56difference that are being overlooked?
43:58What's the evidence that the differences
44:01are accurately measured or ascertained?
44:03Is the validity of the classification
44:06systems based on assumptions or evidence?
44:09Are the category labels respective,
44:12respectful, accurate, and derived
44:14from or reflective of community input?
44:18However, to the extent that
44:20categorization and language should be
44:22based on ethical principles of respect,
44:24beneficence, and justice.
44:26I submit that these are also questions
44:30for the bioethics community as well.
44:33I'll just leave you with a quote
44:36from Paul Starr which I thought
44:40was relevant to this
44:44and it's from it's from some
44:50writings that he he in which he.
44:55Put forth the concept of cultural
44:58authority and talk and spoke about
45:02how clinicians can use this cultural,
45:06cultural authority.
45:07And he says here that patients consult
45:10physicians not just for advice,
45:12but first of all to find
45:14out whether they are, quote,
45:15really sick and what their symptoms mean.
45:18Cultural authority in this
45:20context is antecedent to action.
45:22The authority to interpret
45:24signs and symptoms,
45:25to diagnose health or illness,
45:27to name diseases,
45:28and I emphasize that in bold myself,
45:32and to offer prognosis,
45:33is the foundation of any social
45:36authority the physician can assume.
45:38By shaping the patient's understanding
45:40of their own experience,
45:41physicians create the conditions under
45:44which their advice seems appropriate.
45:46And I thought that this quote
45:48seemed appropriate for.
45:49The issues that I hope we'll be
45:52talking about further for the rest
45:54of the for the rest of my time here.
45:58All right,
45:59wonderful. Thank you very much.
46:03And I will at first before I throw the
46:07session over for comments and questions,
46:10I have to correct a couple
46:12of statements I made earlier.
46:13First of all, put your questions and
46:17comments in the Q&amp;A, not in the chat.
46:21And second, the our next speaker,
46:26Jen Miller will appear.
46:28I don't I think I gave you the wrong date.
46:30She will, she will be here on April the 12th.
46:35So Doctor show, I want to ask what use
46:40the prerogative of the chair or the
46:43host to ask you do you have a sense of?
46:48With all these journals revising
46:52their policies,
46:53do you have a sense of how effective
46:58they've been or how well they've adhered
47:03to their own their own guidelines?
47:06And first of all,
47:08it sounds like many journals have have
47:11created their own sets of of guidelines.
47:14Do you have a sense?
47:15So I should.
47:16Make this a two-part question.
47:18What proportion of major journals
47:20do you think have instituted these
47:23kind of policies and second of all,
47:25how successful have they been
47:27in implementing those policies?
47:33I don't know how many journals,
47:35I haven't really looked specifically.
47:37I know that the the JAMA guidelines
47:39seem to be very influential,
47:41as well as the APA style guidelines.
47:44The APA has been working on those
47:45style guidelines for a long time,
47:47and they've added and and it's
47:48sort of a living document,
47:50so it's been revised.
47:53In many ways over over the years.
47:56So I think that other journals
47:58defer to that those style guidelines
48:00as as well as now to the the JAMA
48:03guidelines which originally came
48:04out many years ago and this up,
48:06this latest update was
48:08a significant revision.
48:12But I know that you know,
48:15having worked with some.
48:17Genetics journals nearly 20
48:19years ago where they did make
48:21recommendations on the use
48:23of terminology specifically
48:24around race and ethnicity
48:28that they know from their analysis after
48:32the guidelines were released that there
48:34was very little change in the publication,
48:36so there is going to require more.
48:45More concerted efforts at the level of,
48:50you know, the editorial staff in
48:53insisting on changes and 1st identifying
48:56which changes need to be made,
48:58which are not that easy. It's, you know,
49:03it's it's very it requires very
49:07close reading of of manuscripts to
49:11understand some of these subtle,
49:13subtle concepts.
49:16So I think there's there was some hope,
49:21I think I can speak for our journal,
49:23that we were waiting to see what the
49:26National Academies of Medicine had to say.
49:28And indeed they have a whole section
49:31of their report that is devoted to,
49:38devoted to specific measures
49:40that institutions should take.
49:43To implement the recommendations
49:46that that the academies have made.
49:50So I think it's going to
49:53require sort of multilayered,
49:56multilevel efforts,
49:58not just leaving it all to individual
50:01researchers or or individuals at all,
50:05and that institutions have to
50:08provide resources for education.
50:13And and and things like perhaps
50:17things like prior institutional
50:20review of publications to
50:22help people by people who have
50:25expertise in in in these areas
50:32to help people individual
50:34researchers who may not
50:38have that kind of expertise.
50:41You know, before everybody's educated
50:43and on the same page about these types
50:46of terminologies that are considered
50:48acceptable and not acceptable,
50:50that there's some resources that
50:52are provided by institutions.
50:55So you would put at least some
50:57more of the burden on the
51:00individual institutions and
51:01therefore on the authors rather
51:03than on the journals themselves,
51:05which is understood.
51:07The journals are certainly.
51:09Sufficiently burdened but is
51:11that am I interpreting your
51:12your statement correctly.
51:15So I think we have to kind of spread the
51:18efforts out because it's going to take,
51:21it's going to take this is a major
51:23these are major changes that that are in
51:25this report and that also that I think
51:30it's not just about race and
51:32ethnicity but other things you
51:34know if you think about how.
51:38You know laboratory reports are structured,
51:42it's going to take some major,
51:45major efforts to to align you know
51:51all are the majority of clinical
51:53laboratories so that they are they have
51:56some kind of similarities in how they
52:00are implementing inclusivity guidelines.
52:06Thank you.
52:08Now we have a what I consider a very
52:11good question from our colleague Dr.
52:13Chadi Tol Walker,
52:14who says Stanford published a language
52:17guide that was attacked and ridiculed
52:20in the media and eventually taken down.
52:23We at Yale and Doctor Tol Walker
52:26was instrumental in this effort,
52:28have developed an inclusive
52:29language guide for our community.
52:32Yale School of Medicine we have.
52:34We have it behind a firewall so
52:36that it's helpful to our community,
52:38but would like to release it more widely.
52:42Any tips for navigating potential criticism,
52:45especially that made in bad faith?
52:51Yeah, wow.
52:54Yeah, this is quite the subject of many,
52:56many faculty meetings, I think.
53:06I'm not sure I have any really
53:10effective tips for navigating criticism,
53:12but I do think that it it may be helpful to
53:21to provide more scaffolding so rather
53:25than just releasing a document.
53:28Which has no context, which doesn't
53:30have sort of the opportunity for
53:32discussion and explanation and
53:38providing context
53:42that it may be more helpful to have
53:50have the document be discussed
53:52it with the sort of in the
53:55environment of a more interactive.
53:58You know educational setting probably
54:02multiple educational settings.
54:04So that because these are
54:07pretty nuanced issues and
54:11and I think that's something that's
54:13an issue that was faced by these
54:15journals that we're putting out language
54:17guidelines is because you can't really.
54:19It's very hard to make sort of blanket
54:21statements about how you should use certain
54:23words and and not and you could see that
54:25in the National Academies report where.
54:27You know you can't make a rule
54:29and say you can't use race ever,
54:31because sometimes it you actually
54:33should be using race.
54:34For example, you can't study end of.
54:37So for example,
54:38the very reason why the government
54:41came up with the O MB categories
54:44of race and ethnicity back in the
54:4770s was in response to and so they
54:50could in order to make it possible
54:52to measure discrimination.
54:54And so you can't measure discrimination
54:56without social categories of race.
54:58So the problem comes in is when
55:01you're using categories that are
55:02mismatched with the uses, right?
55:04So if you're trying to capture biological,
55:08biological features and you're
55:10using social categories to do that,
55:12you're, you're,
55:13you're really going to have problems there.
55:16And that's where.
55:18But those are kind of nuanced
55:20issues that you can't really just.
55:21It's hard to just sort of make
55:24guidelines about and and also to to
55:27explain I think you know there are
55:30certain terms where it seems more
55:32obvious than others why they're
55:35considered offensive now but you'd
55:37be surprised.
55:38Some people really have no you know
55:41especially when you know a place
55:43like Yale or less like Stanford
55:45which has people coming from.
55:47A wide variety of cultures globally
55:50and different traditions and practices.
55:55You know, I think it it it means that
55:58these discussions have to give people
56:00space to ask questions and not feel like
56:03they're being criticized for asking
56:05questions because they don't understand.
56:09Thank you. I I will say that the
56:11that the Yale document actually it
56:14does attempt and I think it does
56:17reasonably well to provide context
56:20and to provide explanations the the
56:24the question and I can certainly
56:27understand the concern is that how,
56:30how are we going to get people to pay
56:33attention to the document and to actually.
56:37Incorporate the the context and the
56:41explanations and the history all of
56:44which is in there in a in a fairly
56:46succinct form but I think but it's
56:49it's a very nice job so far but yeah
56:53I'd love to see it actually sounds very
56:55well we will we will send
56:58it along absolutely.
56:59So that's that's that's very helpful.
57:03I I have to apologize once again.
57:06Apparently I have screwed up my,
57:09my, my dates so that I I this
57:14will take just a moment.
57:16But I said that doctor Doctor Miller
57:20would be appearing on April the 12th
57:23and it looks like she's actually
57:26going to be here on April the 19th.
57:28The Cardiology Ethics Symposium
57:30will be on Friday, may the 11th.
57:33It will be on Friday,
57:34may the 12th and that will be an all day
57:37session on the ethics of heart failure.
57:40So let let me proceed.
57:47Okay, so here's a a question from
57:50an anonymous attendee how can I I,
57:52a student at the Yale PA program
57:54physician associate program,
57:56enlist the help of the biomedical
57:59ethics department to ensure the legacy
58:03of unscientific categorizations at at
58:05Yale ends in our medical Ed curriculum?
58:09I have seen outdated genetics terminology,
58:13outdated guidelines,
58:15suggestions regarding regarding
58:17ACE inhibitors in black patients,
58:20and incorrect terms used for describing
58:24geographic anxiety and population difference.
58:27How do I enlist your help to
58:31update our curriculum so?
58:34This is, this is obviously a
58:36problem we have to deal with here,
58:39but do you have some
58:42suggestions for our students?
58:45Yeah, great question. Yes.
58:49I mean if if you were at Stanford,
58:51what would I tell you? I would say,
58:56you know, probably similarly at Yale
59:00there are now sort of a plethora of.
59:04Committees that are dealing with DEI
59:08or Jedi or idea or whatever acronym
59:12they want to use that are supposed
59:16to be dealing with these issues.
59:18And I would imagine there is a
59:22curriculum committee that is thinking
59:25about how to make the curriculum more
59:29inclusive and improve it in many ways.
59:32In terms of all kinds of related
59:37features or characteristics.
59:39So that's where I would go and to,
59:44you know, raise, raise these,
59:46these issues,
59:47I imagine that there are also
59:53efforts at the national level and I
59:57know that the one of the recommendations
60:00from the National Academies report.
01:00:02Was to form a clearinghouse of resources
01:00:08and also of you know guidelines and
01:00:12and that sort of thing, but also of
01:00:18things like curriculum changes and and
01:00:21educational modules that are being developed.
01:00:25So sort of a sharing, a locus of
01:00:29sharing of these kinds of materials.
01:00:32Although that's that report was just issued,
01:00:34I don't know of any such body right now,
01:00:39but I imagine that there
01:00:42will be some movement in that
01:00:44direction may be led by you know,
01:00:47a group like the double AMC, right,
01:00:49the American Academy of Medical Colleges,
01:00:54right. And I would add that we
01:00:57certainly have a structure.
01:01:00That is meant to deal with DEI here
01:01:03on the medical school campus and that
01:01:06should apply to the PA program as well.
01:01:09So and if that should be an Ave.
01:01:14for redress and if it's not,
01:01:17we have work to do. So thank you.
01:01:22Another question.
01:01:25Some people express frustration
01:01:27at the imperative to use precise
01:01:29language due to the perception that it
01:01:32changes so quickly and so frequently.
01:01:34Of course, the nature of language is
01:01:36that it is always changing and evolving,
01:01:39but this is some people's concern.
01:01:43Can you speak a bit more to this point?
01:01:48This is an issue that I talked about
01:01:50with my coauthors of the paper,
01:01:51knowing that as soon as it was
01:01:53published it was going to be outdated.
01:01:55But I think how we dealt with
01:01:58that or tried to reconcile this,
01:02:04you know, with our own
01:02:06publication, was that the act of
01:02:15keeping up with sort of. The the
01:02:20Times in terms of understanding
01:02:24both where language and categorization
01:02:29are doing scientific and clinical
01:02:33damage and and also where it is doing
01:02:40causing causing disrespect
01:02:45of various communities.
01:02:47Just the very act of of doing that
01:02:52is in itself a virtuous activity,
01:02:56so signaling trustworthiness and signaling
01:03:02open mindedness.
01:03:04And to some extent I think
01:03:07part of the frustration is
01:03:11due to the underlying sort of.
01:03:15Movement that is happening here,
01:03:17which is that it means sort of
01:03:22admitting that professional groups
01:03:25may not be the ones in power
01:03:29anymore and with the authority
01:03:32to make these decisions and and
01:03:35that some of that power has to be
01:03:38ceded to communities and patients,
01:03:44so. And so that means I think that this is,
01:03:50this is even though the language is changing
01:03:52and evolving and that's frustrating.
01:03:53I think the there's a bigger thing that's
01:03:57evolving underneath that fundamentally,
01:03:58which is a power shift.
01:04:04Thank you. Very good.
01:04:07I would like to just.
01:04:14Read a response from Doctor Paul Walker.
01:04:16He says thank you. That's how we're
01:04:19using it internally right now,
01:04:21contextualizing narrow educational
01:04:23slash research slash clinical
01:04:25settings to foster conversation.
01:04:28I've read some bad faith out of
01:04:32context criticism of the Stanford
01:04:34guy that I suspect deliberately
01:04:36ignored the context in the
01:04:38interest of sensationalism is that.
01:04:42Do you think that's the case or yeah,
01:04:45I I think that's that's true.
01:04:48But I think it does point out that
01:04:53even guidelines like this on language use
01:04:58are highly and should be highly contextual,
01:05:02right? I mean, you can use the exact
01:05:05same word in different setting. Right.
01:05:07And we're talking about usage in research,
01:05:10usage in patient doctor communications,
01:05:13in publications in the news in, you know,
01:05:17all these different settings and the exact
01:05:19same term can have different meanings
01:05:21in those different settings, right. So
01:05:26not to say that the criticism was,
01:05:30you know, I think the criticism was
01:05:32really in the interest of sensationalism
01:05:35as as as you mentioned and.
01:05:41But I think it is. That's why I think
01:05:44it's important to provide these types
01:05:47of recommendations in the with a very
01:05:51clear context alongside it. Well,
01:05:56I'm going to speculate that some
01:05:58of the some of the criticisms that.
01:06:01We we we might say we're not
01:06:05particularly reasoned or balanced
01:06:07or thoughtful perhaps. All right.
01:06:10We're part of a understandably
01:06:12human reaction to change.
01:06:14We don't like change.
01:06:16We don't like being even having
01:06:19it implied that we've been
01:06:20incorrect in what we've been
01:06:22doing for load these many years.
01:06:24And so I
01:06:28I, I sort of under, I think I understand.
01:06:32I when I've been, when when it's
01:06:34been brought to my own attention of
01:06:36something that I had not even considered.
01:06:39And my first reaction is defensive.
01:06:42And I want to, I want to argue.
01:06:46But but I have.
01:06:48I'm fortunately surrounded by colleagues
01:06:51who are are fair thinkers and reasonable
01:06:54people and have a calming influence.
01:06:56But so I I think I understand how.
01:07:00These, these reactions are
01:07:03generated and I wonder if it's not
01:07:05to a certain extent inevitable.
01:07:08And I guess that's what we're
01:07:10trying to minimize with all of this.
01:07:12I think it's also important that as part
01:07:14of the educational process that we've
01:07:16been talking about, and I'm sure that
01:07:21doctor tall Walker is, is is
01:07:24using these guidelines for that.
01:07:27You know, it's part of what can
01:07:30be helpful here I think is,
01:07:35you know, an understanding of how
01:07:38the language is not just, you know,
01:07:43it's not just political correctness that the
01:07:46language use has clinical impacts, right.
01:07:49And it has, it can have very
01:07:52negative clinical impacts and so.
01:07:54Part of what we tried to do in our paper
01:07:56is sort of cite some of the evidence,
01:07:57but we couldn't really cite all of it.
01:07:59But there is a lot of evidence out
01:08:02there that shows how that makes
01:08:04connections between language and
01:08:06categorization and actual harms.
01:08:08So I think that's important to convey that
01:08:11this isn't just sort of like an empty,
01:08:15you know, empty cry of wokeness, right?
01:08:18That there's actual people get hurt.
01:08:23Yes. And and it seems to me that when you,
01:08:27when you when you're able to provide
01:08:29examples they can be really compelling.
01:08:31Some of the examples you provided in
01:08:33in your talk just just now I think
01:08:37could be could be really compelling
01:08:39and maybe it it has something maybe
01:08:42the strategy has to be that it has
01:08:45to be introducing small amounts
01:08:48with very compelling narratives.
01:08:52In order to tone down these reactions,
01:08:57but I'm just speculating,
01:09:01Dr. Tall Walker has a further
01:09:04contribution to the PA student. The.
01:09:08And I will try, if I can figure it out,
01:09:10I'll try to figure out how to put
01:09:12this into the chat or the Q&amp;A.
01:09:14It's well actually if you look in the
01:09:18Q&amp;A, m.yale.ed U slash language and
01:09:22that's the website that the student
01:09:23can bring up to the PA curriculum group
01:09:26to help forward the conversation.
01:09:28So that's our local local problem here.
01:09:33Another question from our faculty.
01:09:39Hold on. In response to the question
01:09:42of how to deal with teaching faculty
01:09:45using inappropriate language,
01:09:47I would say the course directors
01:09:49try very hard to address these
01:09:51issues with individual faculty and
01:09:53also provide them with resources
01:09:55to update the language they use.
01:09:57So I agree. I think, I think we're,
01:10:01we're working on this, we're,
01:10:03we're trying to do better. So.
01:10:08And and and so my
01:10:14as part of what we've been been
01:10:18talking about this this whole idea of
01:10:22you know can you think of of the the
01:10:27larger strategy for how we implement
01:10:30these suggestions these these changes.
01:10:37Through academic medicine,
01:10:38but through medicine in general.
01:10:40And that's a very large question and I
01:10:42think you've partially addressed it so far.
01:10:44But if you have any thoughts about the,
01:10:47the grand strategy, if if you will.
01:10:53Yeah, I haven't really thought that
01:10:55much about sort of broader changes,
01:10:57how to sort of implement broader changes
01:11:00in medicine writ large that that's huge.
01:11:04I mean, obviously education.
01:11:06And the medical education process is,
01:11:09is is you know, an obvious target of efforts
01:11:19and there are I think there are some
01:11:23some resources that are aimed at sort
01:11:25of in the growing set of resources.
01:11:27I'm sorry I don't have them sort of
01:11:30off the tip of my tongue right now,
01:11:33but there are resources on sort of.
01:11:39For example, anti racism and
01:11:42anti ableism in medicine,
01:11:44how to institutionalize those,
01:11:50you know, that's that's a
01:11:51different story. I think
01:11:55in terms of research there
01:11:58are some leverage points.
01:12:00Some of which are mentioned in
01:12:02that National Academies report.
01:12:03And although the report really
01:12:05is focused on race and ethnicity,
01:12:07I think these leverage points are
01:12:10really valid for all research.
01:12:13So one of them is obviously
01:12:15through journal publication.
01:12:18Another one that they pointed
01:12:20to is research funders,
01:12:21and they provide a even a sort
01:12:25of checklist of things that
01:12:27research funders should ask.
01:12:29Before they provide funding to
01:12:32researchers to assure that they have
01:12:35gotten education on issues regarding racism,
01:12:40ableism, etcetera,
01:12:45as well as. Pretty specific
01:12:47questions they could be asking.
01:12:50Funders could be asking of researchers
01:12:53in in their in Grant proposal right
01:12:57in terms of study design and asking
01:13:00for methodological rigor in in
01:13:04their use and and even questioning.
01:13:07Do you need to use categories
01:13:09such as race altogether?
01:13:11Maybe you don't.
01:13:12Maybe it would be inappropriate.
01:13:16So there's there's lots of sort of
01:13:19levers that can be pushed there and
01:13:22and that there's institutionally some
01:13:24of the things they talked about were
01:13:28at the level of the IRB for example and
01:13:34you know although that might end up by.
01:13:40In the form of more requirements
01:13:43for training, like HIPAA training,
01:13:45you know, but that is one of
01:13:48the suggestions that they made.
01:13:50And, you know, requiring that
01:13:52there be some education before
01:13:55researchers are allowed to use
01:13:58samples from human subjects,
01:14:00or to access human subjects
01:14:02at all in their research.
01:14:09They also talked about
01:14:15I think there were there were other
01:14:17issues that were really institutional
01:14:21beyond education but you know there's
01:14:24there's sort of many different places
01:14:26pressure points that that where
01:14:32faculty for example at
01:14:34academic organizations.
01:14:39You know are are subject to pressure
01:14:42from from the institution and and the
01:14:46institution and can have requirements.
01:14:50The other one that I mentioned
01:14:52was you know review of protocols
01:14:54for example or maybe of articles
01:14:57and obviously they're these are
01:14:59probably going to come up against.
01:15:05Criticisms in terms of academic
01:15:07freedom and and so forth.
01:15:09But I think that there are
01:15:13some good ethical reasons why,
01:15:16at the very least,
01:15:19researchers should be asked
01:15:22to demonstrate some type of
01:15:24competency and knowledge about
01:15:29the use of categories for scientific reasons.
01:15:33I think that you know.
01:15:35The way that we use the categories
01:15:38of human difference that are related
01:15:40to social identities are used in ways
01:15:44that are very methodologically sloppy,
01:15:47and we would not allow other medical
01:15:51variables to be used in this way,
01:15:53right, if you think about when
01:15:55you're making measurements.
01:15:56Of things are certain things that are
01:15:58related to rigor and reproducibility.
01:16:00You know, when you measure a blood pressure,
01:16:02you need to know it's a blood pressure.
01:16:04And what is blood pressure?
01:16:06You have to have definitions of that,
01:16:09you know, and we don't treat these
01:16:11identity categories or these social
01:16:13categories in the same way at all.
01:16:17So you know, that's another,
01:16:19that's another issue.
01:16:23And then finally one of the things that.
01:16:25I've been talking about is including
01:16:29these issues in analysis of research
01:16:35ethics consultation cases. So
01:16:41I have a long list of things that
01:16:43I am now requiring our trainees
01:16:46who are trained getting training
01:16:48and research ethics consultation
01:16:50to read so that they can include
01:16:52these considerations as their.
01:16:54Reviewing protocols or study designs
01:16:58that are presented in the context
01:17:00of research ethics consultation.
01:17:05The the,
01:17:08the idea, or the the notion of
01:17:11requiring people to demonstrate some
01:17:14confidence in these matters before
01:17:17they can participate in in submitting
01:17:20research or submitting documents.
01:17:24Do you I I assume that runs the risk
01:17:27of generating resentment and people at,
01:17:31you know, doing the functory checklist,
01:17:34learning as little as possible to get
01:17:38by through the process of getting their
01:17:41grants submitted and funded and getting
01:17:45their documents reviewed and accepted.
01:17:48But, and that troubles me to an extent, but.
01:17:52On the other hand, once people understand
01:17:56what the what's the, what's required,
01:18:02we seem to adapt and it becomes
01:18:06part of part of what life is about.
01:18:09And so this would be part of what
01:18:11academic life would be about.
01:18:13Perhaps eventually we get to where this is
01:18:15part of what clinical practice is all about.
01:18:19And so maybe, at least initially,
01:18:22we don't care if people believe avidly in
01:18:25all the things that you've been advocating,
01:18:30but at least they can fake
01:18:32it until they make it.
01:18:34Now, does that sound just too cynical,
01:18:36or is is that a possible approach?
01:18:42Well, yeah, I think.
01:18:44Yeah, for some people they're, you know,
01:18:46these practices are very entrenched.
01:18:48When, you know,
01:18:49when somebody does a case presentation,
01:18:51what they, what do they start with?
01:18:52They start with, you know,
01:18:54this is a 35 year old black male with blah,
01:18:57blah, blah, blah blah.
01:18:58And without any sort of thought about,
01:19:00well, what is that?
01:19:01Why is that relevant?
01:19:02Is that relevant at all in this case,
01:19:04what does black mean?
01:19:05I mean that the National Academy
01:19:07report actually recommends not
01:19:09using the term black anymore.
01:19:11It also recommends not using
01:19:13the term white anymore because
01:19:15what does that even mean?
01:19:16What does that even mean in the context of,
01:19:19you know,
01:19:24well, I mean, we could go on for
01:19:25hours just about that question in
01:19:27and of itself, but we do a lot of
01:19:30things without thinking, right?
01:19:32And so I think just asking
01:19:34people to pause for a moment.
01:19:43And if that means that there has to
01:19:46be sort of educational requirements,
01:19:54you know, I think those are
01:19:56going to cause resentment,
01:19:57but also once if these kinds of issues
01:20:04get incorporated at levels like.
01:20:08At places like in the grant review process,
01:20:12in the paper review process,
01:20:16that means that they will be
01:20:18inevitable and people will have to
01:20:23do more than fake it.
01:20:27They they can't just talk to talk,
01:20:30they have to be.
01:20:31Eventually they will walk the walk,
01:20:34as you said in some circles.
01:20:37Well, this has been a
01:20:41delightful session and we really
01:20:44appreciate you joining us.
01:20:46Do you have any further remarks
01:20:49you'd like to conclude with?
01:20:55I don't think so.
01:20:58Just want to thank you for
01:21:01inviting me to see your group,
01:21:03even though I can't really see them.
01:21:05Yes, all right. Well,
01:21:06thank you so much. This has been,
01:21:09this has been terrific and we really
01:21:11appreciate you you joining us.
01:21:13So have have a good evening.
01:21:16Thank you.