Bioethics & Racism

April 04, 2024

Information

April 3, 2024

Bioethics & Racism

Sponsored by the Program for Biomedical Ethics

Carlo Botrugno, PhD

Researcher at Department of Legal Sciences, University of Florence

Coordinator of the Research Unit on Everyday Bioethics and Ethics of Science

L'Altro Diritto Inter-university Research Centre

ID11543

To CiteDCA Citation Guide

00:00Welcome to the Program for Biomedical
00:03Ethics Evening Ethics Seminar
00:05series and tonight we have a
00:06special guest which you knew about,
00:08which is why you've come out all the way.
00:10From University of Florence we
00:12have Professor Carlo Boccuno.
00:14Professor Boccuno received his education,
00:17two bachelor's degrees and a master's degree,
00:20as well as his PhD in Law from
00:22the University of Bologna,
00:24and he's now in the faculty at Florence.
00:26He has expertise in a number
00:29areas related to bioethics.
00:30Bioethics and technology is certainly
00:32one area and I think we're going
00:34to get some teaching on that
00:35tomorrow for the medical students.
00:37And this evening we're going to
00:39talk about bioethics and racism.
00:40Carlo has recently published an
00:42important book on the subject
00:44and was kind enough to to come
00:46here to speak to us on this.
00:48So Carlo,
00:48I welcome you and we look forward to this
00:50just to remind you folks how it works.
00:52So you know,
00:53so no one feels bad when it happens.
00:55Here's how it happens,
00:57is Carlo's going to speak for a while and
00:59then we'll have a question and answer.
01:01I encourage you to ask whatever
01:02you want and the folks who are
01:03listening in on Zoom through the
01:05question and answer function on Zoom,
01:06you can send your questions as well.
01:08And Karen or someone will bring
01:09those up to me here and we'll ask.
01:11We'll answer some of those.
01:12I'll ask some of those to Carlo.
01:13And then at 6:30,
01:14we will have a hard stop to
01:16get you guys home.
01:17My understanding is exactly 628.
01:19It's going to stop raining,
01:21so you'll have a nice dry trip home again.
01:25Thank you for coming,
01:26Professor Bacciono.
01:34Good evening, everybody.
01:35Thank you so much.
01:37Such a pleasure for me to be
01:40here to have this opportunity to
01:42share my research work with you.
01:44And of course thank you so much for
01:48Professor Mercurio to invite me to
01:50the to the program for biomedical
01:52ethics and yet paediatrics program
01:55seminar and thanks Also special
01:58thanks to to Karen Cobb contributed
02:01a lot to to to manage my my problem.
02:05Every aspects related to to the organization.
02:09I thought this was closer.
02:12Also special thanks to anyone else
02:14who is involved in the program and
02:16contributed to the organization of this.
02:18And lastly to Bonnie Kaplan,
02:23a very kind person who I've been in
02:25contact with for several years and she
02:28introduced me in the university and I was.
02:32I was so lucky for her that and
02:35finally I met her in person after some
02:38work we have done together remotely.
02:43So let's go for it.
02:51This, this topic is something on which I
02:54would like to say I am particularly committed
02:57to because I I think we as scientists,
03:01we have this kind of responsibility to engage
03:03of course with very controversial issues,
03:06but also to try to to improve things,
03:11the tree for change, to improve things
03:14as they are and given by ethics.
03:17Medical ethics,
03:18ever since their creation have been
03:21rooted in social justice.
03:23I'm trying to do.
03:25I'm doing an effort to to frame this
03:28discourse off by ethics and racism
03:30in a social justice perspective
03:33and where this work come from me
03:37particularly I always worked on in
03:40the past with migrations and human
03:43rights particularly I was working on
03:45the implication of police control
03:48and bordering on on human rights
03:50and and right to health of migrants
03:53over there in the Mediterranean Sea.
03:56I guess you know something about that
03:59critical situation we have and but it
04:01was particularly during the COVID-19
04:03that I was struck by the fact that
04:06several major institution in the field
04:09of by ethics and medical ethics from
04:11United States and Canada have released
04:14kind of statements and declarations
04:16about the interplay of COVID-19 racism,
04:21inequalities and and and police violence.
04:27And of course this was triggered by the
04:30the killing of George Floyd on May 2020
04:35by the Minnesota Police Department.
04:37So I don't know for, as I say,
04:39for me this is a very important subject.
04:41So maybe it can sound a
04:44little bit emphatic to you,
04:46but I think it was a kind of
04:47turning point in in by ethics.
04:49Because for the first time ever,
04:51by ethics, the major institution,
04:54by the by ethics in the world,
04:56I have a knowledge that
04:57they didn't do enough.
04:58They have not been committed
05:00enough to eradicate racism from,
05:02from medicine,
05:03from biethics,
05:04and therefore from society at large.
05:07And so I started from there to take the this,
05:13the relation between biethics
05:16and racism seriously.
05:17So I started to wonder whether
05:20Biethics is effective against racism
05:22and discrimination in healthcare,
05:25whether Bioethics is aware of
05:26all the faces that racism and
05:29discrimination assume today is the
05:31training of bioethicists and health
05:32abrasion are the way to fight them?
05:35Is the production of knowledge in
05:37bioethics free from racist stereotypes,
05:39notions, classification, categories?
05:41Or to some extent it just
05:45contributes to their conservation?
05:47So we did this book after a very
05:51interesting seminar series we had
05:55in the University of Florence.
05:58People from speakers,
05:59scholars from several parts of the world
06:02contributed and from several disciplines.
06:04So there were sociologists,
06:07medical anthropologists,
06:08physician, legal scholar,
06:09philosopher, and so on.
06:11So we just put this together.
06:12But the following the talk,
06:15the the things I'm going to say
06:17are partially taken from the
06:19book and partially from something
06:21else that I'm working on.
06:22So it's something like let's
06:24say work in progress.
06:25So your your feedback is
06:27very welcome at the end.
06:29So let's start very easily.
06:32What racism? What racism is a prejudice,
06:36discrimination, or antagonism directed
06:38against a person or people on the basis
06:41of their membership in a particular
06:43racial or ethnic group, typically one
06:45that is a minority or marginalized.
06:48We talk about a little bit of even
06:51the language that we that is using the
06:55definition and what is the impact,
06:57the effect of racism.
06:58Enough care, of course it never got
07:01negatively effects service accessibility,
07:03but also the efficacy of care,
07:05therefore leading to severe inequalities.
07:11Of course all of you are aware that the
07:16COVID-19 has been a very unfortunately
07:18a lab for understanding more of the
07:22mechanism that are involved in the in this,
07:26in the creation of inequalities and
07:29disadvantages for to some population group.
07:32Here you can see of course again
07:34this discourse of the minorities,
07:37African Americans and Latinos.
07:40But generally speaking we can say that
07:42people who have low social economic status
07:46ever had more increasing increases the
07:49risk of dying from the COVID-19 virus,
07:53increases risk risk of being infected
07:57and more difficulties in dealing just
08:01with the socio economic consequence
08:03of of COVID-19 and with all the
08:07troubles it it causes to to all of us.
08:10So to take this issue seriously,
08:14let me use again this term.
08:17I started to work on on an analysis
08:19that is developed around three
08:22different levels Despite they are
08:24very interrelated but we are going
08:27to to examinate them separately.
08:30So the first level is the level of practices.
08:34Practices, the point of care,
08:36so everyday practices,
08:38those practices implemented
08:39by clinicians and and everyone
08:41related to to healthcare delivery.
08:44Then we have the institutional
08:45level or policies, lower regulation,
08:47provision,
08:48any other things and then the knowledge gear,
08:52the knowledge field which is in
08:54my point of view is currently the
08:57most important to to deal with And
09:00to each of these level correspond
09:03to a different kind of racism.
09:07So at the level of practices
09:09we have medical racism.
09:10At the level of policies we
09:12have institutional racism.
09:13At the level of knowledge
09:16we have epistemic racism.
09:18So I'm going to start with
09:20the first practices.
09:21The word practice comes from
09:24the Ancient Greek practice.
09:26Was ancient 3 used to refer
09:29to action still somehow,
09:30but most importantly today
09:32refer to behaviours,
09:33so behaviour which are usually carried out
09:36in a specific context by a group of people.
09:40So we know that it's really common to
09:42to refer to the professional field.
09:44So the practices of clinician,
09:47the practices of nurses and so on.
09:49By Ephesus,
09:50why not?
09:51So practices today may be seen as
09:53habits or else the result of the mutual
09:56interaction between material and
09:58non material factors that contribute
10:00to shape our professional culture.
10:02So it is related also to the identity,
10:05to the collective and individual identity.
10:08And why are practices important?
10:10Let's take some examples of practices
10:13that can that turn into medical racism.
10:16Professional for instance,
10:18refusing to assistant patients
10:20professional who dedicate less intentions,
10:22less time,
10:23less concentration or showing just less
10:27availability towards some patients.
10:29Professional who treat worse or
10:31dis attend standard of care when
10:33caring for some patients.
10:34Professional who questions some
10:37patients regarding their lifestyles,
10:39habits, choices in the field of health.
10:42And this we can refer to a very well
10:44known mechanism in the psychology
10:46field as blaming the victim mean.
10:49So you're charging the person who
10:51is suffering of the of the of
10:53the situation is
10:54they are suffering.
10:56And what are the proxies of medical
10:59racism or the factor that contribute
11:01to to to shape that that phenomena.
11:04Phenotypical traits of course,
11:06such as skin pigmentation or other
11:08physical connotation which are conferred
11:10the value of marker of a specific group.
11:13Then we have again socio economic
11:16factors like education, employment,
11:18gender, sex, orientation, so on.
11:22Also the legal status is a is a proxy
11:25of medical racism membership over
11:27the terminal cultural or religious
11:30group where these notions are being
11:33essentialized or being exasperate.
11:36So there are there we the the black,
11:40the white, the the yellow and whatever else.
11:44And what is the impact of medical arrests?
11:46Of course we know inequalities,
11:48lack of service, access,
11:50discrimination, suffering,
11:51health complication and death.
11:53I would like to stress this because
11:55we must remember that racism,
11:57medical racism kills also an example from
12:02Brazil country to which I'm particularly
12:05related to is I'm I've been living there,
12:09I work a lot over there also because of
12:13racism is a is a big issue over there.
12:17So this report The colour of pain,
12:19racial inequalities in prayer,
12:21birth birth care in Brazil reported.
12:24I mean it's like this evidence
12:27is really common knowledge.
12:30If we compare white women to black women
12:33were informed about pregnancy risk.
12:35White women 80% Black women 66
12:39attended prayer birth screening.
12:41White women 84,
12:43Black women 69% Black women
12:46have doubled risk of dying from
12:49pregnancy birth complications.
12:5254 of the maternal death all over
12:55the Brazil of the country occurs
12:58among black women aged 1529.
13:03And when we talk about medical racism
13:05we have to we have to consider that
13:08this is just there's a big iceberg
13:10effect because only a small a really
13:12small part of this racist episode
13:15are brought to the surface and and
13:17for a a series of factor first of
13:20all the asymmetric power relations
13:22between professional and pensions that
13:24discourage of course they spoke to be
13:27reported Of course the bureaucratic
13:29health system contribute to to to buff
13:31to the to the power relations to the
13:34power relations and also to hiding
13:36the medical racism patient condition.
13:39Of course when we cannot forget is
13:41a is a condition of suffering and
13:43vulnerability and also there is patients
13:47send sometimes or often are ashamed
13:49or fear negative repercussion if they
13:52report this episode and lastly but
13:55not I mean it's it's just important
13:58to consider that sometimes medical
14:01anthropologists have really showed that
14:04this with with the with the qualitative
14:08studies that this people sometimes or
14:10very often just incorporate racially
14:13and just they just believe it's it's
14:16a normal it's their normal standard
14:18of care even if they are discriminated
14:20and racialized and treated worse they
14:22just believe it's normal for them.
14:24So there's there's also this factor but RES
14:28is medical risk is not just affect patients.
14:31There are evidence reporting race or
14:34ethnic or country based discriminatory
14:36attitudes from patients toward
14:38healthcare professional as well
14:41as any other job related abuse or
14:44career disadvantages associated with
14:45belonging to a rationalized group.
14:48From from a professional point of view.
14:51Even in this case,
14:53those healthcare professional could
14:54be brought to to hide the racist
14:58episodes concerning them,
14:59especially if they are in a position of
15:02less qualified or they are particularly
15:05exposed for for some reasons.
15:07An example again from Brazil was
15:09reported on this news.
15:11CNN Brazil,
15:14a nurse reported that she entered
15:15in the room where the passion was
15:18waiting for her and find the woman
15:20who started to yell desperately.
15:22She say, and now my son, she's she's black.
15:25And the son replied, don't worry mom,
15:27she's wearing gloves,
15:31the level of policies.
15:33So I'm a legal scholar, I don't want
15:35to bother you with with definition,
15:37but just very easily saying they
15:40consist of regulatory strategies which
15:43supposedly are pursuing one or more
15:45objective on behalf of the public good.
15:48So the adoption of healthcare
15:50policies can have several variety
15:52of effects on the ground of racism.
15:54And they tried to figure out
15:56what those efforts could be on
15:58the basis of the policies,
15:59the structure of the policy.
16:00So basically I distinguish
16:02it three kind of policies,
16:05directly discriminatory policies,
16:08indirectly discriminatory policies
16:09and the affirmative actions.
16:13What are the the aim of directly
16:17discriminatory policies?
16:17They want to create an imbalance.
16:19So they introduce a privilege for some people
16:22group and leave the other disadvantage.
16:23If we apply this in the healthcare,
16:26this can happen when certain
16:28term people group are conferred,
16:30incentives to service access or
16:32some other are restricted from
16:34plain access based on one or more
16:37features characterized in the group.
16:39From Russia point of view of course.
16:41So in any case the result is
16:43creating a disparity of treatment
16:45among these people groups.
16:47So one can ask oh how it's possible,
16:49Carla to have this in in 2020
16:52in democracies like Italy,
16:54United States or what else.
16:56Unfortunately,
16:56it's very easy and I I brought an example
17:00from my country despite IA little bit.
17:03Not not even a little bit.
17:05I'm totally ashamed.
17:07Because of that,
17:09during COVID-19 our government
17:11had this brilliant idea of using
17:14commercial ships to forcibly
17:17quarantine undocumented migrants.
17:19So at first they put newly arrived
17:24undocumented migrants and they liked so much.
17:26The idea that in the second phase
17:29of that they started to put also
17:31those people doesn't those migrants,
17:33not just undocumented,
17:34that were already on Italian soil,
17:37that were found to be COVID-19 positive.
17:40So they put together people who
17:43were certainly COVID-19 positive
17:45with people who came from a region
17:47of the world where in that moment
17:49COVID-19 was not a problem at all.
17:52Of course this was very criticised because
17:57totally inhuman.
17:58I wrote several times that
18:00it was pure deportation.
18:02It makes it made no sense from an
18:05epidemiological point of view.
18:06The condition over there were really bad.
18:10There are three people died
18:13directly during the during the
18:16quarantine and other severe health
18:18complication after the end of that
18:25and this somehow echoes the condition
18:28where migrants in Italy and also in
18:31other places in Europe are forced to.
18:33So these are the so-called identification
18:36centres for undocumented migrants.
18:38I always refuse to call it that way because
18:42to me this are just detention centre.
18:45It's it's maybe worse than than
18:48our prisons and as you can see,
18:50this is this picture I've been
18:51taken in Rome several years ago.
18:53So you can see this is completely unrelated
18:56to to any taking care of these people.
18:58So this situation where you probably
19:01enter with a good health condition
19:04and you go out and you leave it sick.
19:10And over the last 20 year or more,
19:14there have been a proliferation,
19:15there's been a proliferation of 0
19:19tolerance policies aimed to to restrict
19:22healthcare access to to migrants,
19:25particularly to undocumented migrants,
19:28for instance.
19:29Again in Italy,
19:3115 years ago,
19:33the government approved the
19:35law which which included
19:42an obligation for healthcare professional
19:45to report undocumented migrants who
19:47presented themselves at point of care.
19:49So basically they could not,
19:51according to the to this provision,
19:52they could not attend them but
19:54just report them to the police.
19:56This provision, this rule was never applied.
20:01Let me say, I mean 99% was never applied.
20:05There were many campaign,
20:06there were huge protests.
20:08And at the end,
20:10the Constitutional Court after
20:11couple of years said this was not
20:14compatible with our basic values,
20:18the constitution, basic principle.
20:20But the deterrence effect was produced
20:23anyway because many undocumented migrants
20:26fear to access the the healthcare services,
20:29even emergency care services just
20:31because they were feared to be reported.
20:33So anyway even it was completely
20:37non legal as a law they produce the
20:40the the effort they want to do now
20:44indirectly discriminatory policies.
20:46Here of course the prejudicial
20:49effect is created in undirected
20:51manner and can be the case of some
20:55policies that are seen benefits to
20:57for to people who for instance who
21:00are who maintain residency for some
21:02time and again here this can be
21:05correct on formal on a formal ground,
21:08but you are excluding some
21:10people group again,
21:11for instance migrants who have no residency,
21:14homeless people or any other people who some
21:17for some reason doesn't have those criteria.
21:21Colour blind policies this,
21:24this,
21:24this can be controversial.
21:26Of course colour blind policies can be seen.
21:28In my point of view,
21:28they are indirectly discriminatory
21:30at least in so far they do not waive
21:33the impact of social stratification
21:35and just pretend the all people
21:37group are provided with the same
21:39opportunities of FEMA direction.
21:43We know very well this tool is created
21:46is a is a aim to to compensate an
21:49imbalance when we apply in healthcare.
21:52They can result for instance in
21:54some waivers mechanism or target
21:56problem to strengthen in service
21:59accessibility for some people.
22:00Group scholars have identified
22:03two different perspective of
22:05affirmative actions in healthcare.
22:07So we can have a weak and
22:09a strong perspective.
22:10A weak is when you just look at some
22:14resourcing some some resources to to improve.
22:17So you put more resources on
22:20primary care services,
22:21hoping that the underserved
22:23will benefit from that.
22:25And the strong perspective is when
22:28you prioritise the underserved and
22:30then you take care for all the other,
22:35the knowledge level.
22:37I consider knowledge from a
22:39known essentialist perspective,
22:41which means that knowledge,
22:43also medical knowledge and bioethics.
22:45Knowledge is a cultural product or as
22:48the ultimate outcome of a social process.
22:50That's a social shaping of knowledge
22:52in which there are involved actors,
22:54material and non material factors,
22:57institutions, procedures that
22:58that are socially recognised as
23:01sources of knowledge production.
23:04This perspective can be very
23:05helpful when we consider
23:08race and dress season in
23:11in medicine and by ethics.
23:13What what is the point of departure?
23:15I guess all of you are very well known,
23:17very well aware of this.
23:21There's a huge literature,
23:23just knowledge in that
23:25race is a social construct.
23:28But then behind this definition,
23:32behind this orientation,
23:34there are several possible perspectives.
23:37So the first one is from from this colour.
23:41But this is quite quite common position.
23:44Race is a socially assigned identity
23:46that only partially reveals scientific
23:48information about the person.
23:50It's not the reliable proxy
23:53for biological difference.
23:54And as global mixture mixture
23:57increases the the real ability of
24:00categorising people by self reported
24:02or perceived race just means
24:07so this according to this position
24:10race was in the past a reliable
24:13source partially but it was and now
24:16as global at mixture increases come
24:19past to be less and less reliable.
24:22But there are other position just say
24:25race was never accurate in the past,
24:28was never reliable as a source of of
24:31representing human biological variation.
24:33It remains inaccurate when referring
24:36to to to contemporary population.
24:39It is was a position statement
24:41by the American Association
24:43of Physical Anthropologist.
24:45But it's very common.
24:47Geneticists generally agree that
24:49genetic variation between races do
24:51not own a meaningful attribute.
24:53So scholarship just converging the
24:55fact that sometimes Eiger genetic
24:57variation can be found within the
25:00rational group than between them
25:04anyway it is commonly for the
25:07gene violence can be predictive
25:09of heritable health risk.
25:11Medical literature is is
25:14reproduces all the time.
25:16This idea and in the United States
25:18and particularly the race has
25:21acquired an impressive power as
25:23a notion and because also because
25:25in the 2001 the US National
25:27Institute of Health has required
25:28a collection of race ethnicity
25:31for clinical trial submission but
25:33also the FDA in 2016 has adopted
25:36a guidance on collecting race and
25:39ethnicity data and clinical trials.
25:41So you see those are the I guess
25:44you all of you or most of you
25:47know already this five Russia
25:49groups American Indian ASCAR,
25:51Alaska Native ASEAN,
25:52Black or African American,
25:54Native Hawaiian or and other
25:56Pacific Islander and white and
25:58then to ethnic group Hispanic or
26:01Latino and not Hispanic or Latino.
26:05On the top of that there are prestigious
26:07journals such as the Journal of
26:09American Medical Association that
26:11adopted even recently guidance on the
26:13reporting or raise it and ethnicity.
26:15So we have several ways of
26:19considering that and this is I
26:22would say somehow hot topic.
26:24This is a a representation of
26:26of this project they all of us
26:29research project which is unique
26:31as you can read in the in the blue
26:34lines because in its diversity
26:36represent the 77% of participants
26:38from community that historical
26:40are underrepresented in medical
26:42research and 46% from individual
26:45underrepresented rationally and
26:47ethnically but very few days after.
26:51There has been some as well to that
26:54that over the the the unease that
26:56raises this controversial depiction
26:58or raises the EDA itself that raises
27:00can be graphically represented
27:02as they did with this project.
27:06If we look and this into the ambiguity
27:09we could talk for four hours of course
27:13but just to to to understand the this
27:16ambivalence that we can find in in the
27:19medical literature the this I took this
27:22statement from the American Society of
27:25Human Genetics which at the same time
27:28stigmatises the idea of racial purity.
27:31So the the attempt of connecting
27:34genetics to Russia supremacy.
27:35But it also recognised the existence
27:38of correlational structure
27:40among race based group.
27:42So you can read there out for there are
27:45clear observable correlation between
27:46variation in the human genome and
27:49how individuals identified by race.
27:51The studio of Human Genetics challenge
27:54the traditional concept of different races
27:56of human as biologically separate indeed.
27:59So it's really contradictory.
28:02They say Russia purity doesn't exist
28:05but there are correlational structure
28:07so it's a idea that is not really
28:13it's not easy to understand.
28:14Also would say it's the sounds
28:16of me completely contradictory.
28:18So reflect the the the problem
28:22of race as a social construct
28:25being translated into into the
28:27biological into the genetic.
28:29And here we have
28:32an example of where this effort of seeking
28:37for the difference on the on the racial
28:40basis lead to the race tailored medicine.
28:43Here I just put an extract of this drugs
28:48that were supposed to to be effective
28:51for some people group are not based
28:54on race and ethnic and ethnicity.
28:56And then before was discovered that it was
28:59this idea was just flawed by the by the
29:03the the categorizing the racial grouping,
29:07how a racial group can be confounding.
29:09For instance, African Americans have found
29:12to be higher rates of obesity than whites.
29:15But there can be many potential
29:17reasons for explaining this.
29:18For instance the apart from the
29:21from the underlying biology,
29:23local environment availability of of
29:25healthy food option and food preferences.
29:29And this echoes the fact that in
29:31Africa the rates of basically are much
29:34lower than what is reported in the
29:36African Americans in the United States.
29:39So this really reminds of the so-called
29:42Thomas theorem or or what has been defined
29:45after the self fulfilling prophecy.
29:48We are looking so much,
29:49we are seeking so much the difference
29:53in the body that at the end we
29:55are creating that different.
29:57We are we are posing the condition
29:59that make that difference real
30:01if if probably there is not
30:06and to summarize what has been fought
30:09up to now in the medical literature,
30:12what the then says race,
30:14ethnicity, ancestry.
30:15This categories as population descriptors
30:18are using sometimes as distinct are
30:21used sometimes interchangeably.
30:23Geneticists have shown to be unable
30:25to clearly this defining and therefore
30:27distinguishing the notion of race,
30:29ethnicity and ancestry.
30:31And scholars expressed divergent orientation
30:34about the use of race and its derivatives.
30:37For instance, sometimes they some some
30:39scholars say they use is acceptable for
30:42other is acceptable to certain condition,
30:44for others is never acceptable.
30:47The use of this category has been
30:49found to be depending on contextual
30:51factors such as researchers,
30:52objectives, data sets, the research,
30:55social culture,
30:56environment and so on and also racial
31:00categorisation and is also have to
31:02face the problem of the self perception
31:05of race and the social identity.
31:08So the the most of the of the of
31:10the collecting of data is based
31:13on the self perception.
31:15So people declare how do they
31:17feel about race and colour.
31:19So this could be really difficult from from,
31:24I mean it's quite far from being
31:27accurate because this could be
31:29related to psychosocial factor,
31:31collective and individual identity.
31:33So it's not really easy to to deal with.
31:38I try to represent all those factors
31:41that are involved in this in what I
31:44call the biology session of the social.
31:46So the point of departure here is the
31:48use of race as a population descriptor,
31:51because we need that because there are
31:54minorities, people under 7 and so on.
31:57So we are trying to serve them better,
32:00to include them.
32:00So we need the race, ethnicity and so on.
32:04But this causes a rigid fixation
32:06of human feature and there's as a
32:09side effect the underestimation of
32:11inter individual heterogeneity and
32:14also it brings to crystallifying
32:16verifying the social differences.
32:19Not not just the differences,
32:20but just also what is,
32:23what can be explainable in social
32:26terms and therefore leading to
32:28renouncing to alternative explication.
32:31We have seen this brought to Race Taylor.
32:33The medicine is a way for commercial
32:37company to create this brand,
32:39this rush to to Race Taylor the
32:42drugs therefore leading to biasing
32:44diagnostic process and treatment which
32:46results in a big factor of medical
32:49inaccuracy and what it turns to be
32:52again care and health inequalities and
32:56therefore social injustice and abuse.
32:59Or as a main side effect of strengthening
33:03racism and therefore we need more and
33:05more race as a population descriptor
33:06because we want to deal with that,
33:09we want to compensate somehow this problem.
33:11So I don't know,
33:13maybe some to you as a paradox,
33:16but I'm trying to figure out on on
33:19this on the theoretical level how this
33:22all these factors interrelate each
33:25other and now they're all by ethics.
33:27To conclude what can by ethics do for
33:30each of this level and the the level
33:33of practices of course we need for
33:36racism in anti racism aware by ethicists.
33:39So by ethics scholar,
33:40I think must commit to terrific
33:43their categories, of course,
33:45to put in discussion their identities
33:47and question the practices, the view,
33:49the theories they learn and and
33:51what they've been socialised
33:53to for guide their careers.
33:55Also there is the clinical
33:58committees can can play a role here.
34:01Decomposition should guarantee the
34:03presence of member who are expert
34:06in racism and discrimination or
34:09belong to rationalized group possibly
34:11and also being expert of this.
34:13Another solution is to create ad hoc
34:16committees for racial issue issues
34:18which happens in the United States.
34:21I've seen several example of this.
34:23So they can intervene whenever those
34:25situation need to be addressed
34:27at the level of policies we have.
34:29In many countries we have
34:31national bioethic committees.
34:33They their role can can be really
34:35diverse and somehow they have just an
34:38advisory role to the government on issue
34:41that are related to healthcare policies.
34:44But the point is that they bring
34:46together expert usually the
34:48the most prestigious aspect,
34:50the most prestigious voices available
34:52in that country with several background
34:55and should have a a minimal level
34:58of independence from the government.
35:00And we can use their scientific,
35:02scientific authority to intervene,
35:04sometimes before the adoption of
35:07certain policies or after the
35:09enactment to to to to revise that
35:12and suggest more acceptable revision
35:14of those policies and rules.
35:16Again,
35:17the level of policies we know the
35:22ethical duty of care for the sick was
35:24at the foundation of the the modern medicine.
35:27And by disregarding those provisions
35:30I made the example of Italian Spain
35:34professional or just disregarded those
35:37obligation to report undocumented migrants.
35:40They just create a room where opened the way
35:43for common morality and disregarded law.
35:46It was a it was a Italian law.
35:48I mean it was not just the recommendations
35:51in some guideline so they were forced to,
35:53but they disregarded.
35:54So these are part of the way for
35:56the bioethics in action,
35:57so out by ethics can be implemented
35:59and brought to the to the practice
36:01not just in the hospital but also
36:03outside in north of the clinical.
36:05So the medical,
36:08the knowledge I consider those statements,
36:11those declaration I showed the
36:14at the beginning very important
36:17somehow turning point.
36:19But this is this must be
36:21just a starting point.
36:23There's a nice research of
36:25several years ago we showed that,
36:28for instance in the editorial
36:30boards of the major bioethics and
36:33medical ethics journal,
36:34people coming from countries with
36:37the low Human Development Index were
36:41underrepresented in those journals.
36:44So this explain why by ethics
36:47sometimes is more concentrated
36:48most focused on some problem.
36:50It does score say why by ethics pays
36:53more attention to esoteric ethical
36:56problem facing wealthy nation that
36:58it does to issues such as poverty,
37:01hunger and health inequities
37:02that are global in nature.
37:07And also there is something interesting
37:09happening in the debate on the epistemic
37:13racism around the whiteness in by ethics.
37:15I guess you read something about where.
37:18But whiteness does not simply stand for being
37:20white or being non white or being black.
37:23Whiteness is more about it's
37:25not about the skin colour,
37:27but first and foremost about
37:29the dominant cultural norms and
37:30ideologies that shape our knowledge.
37:33Relevant to both healthcare and
37:35bioethics is produced and whiteness
37:37could be understood as a marker
37:39of location or position within a
37:41social and here racial hierarchy to
37:43which privilege and power attach
37:45from which they are regarded.
37:47I think this is again the starting
37:51point We it's good to have this
37:53criticism in the in the production
37:55of knowledge relevant in by ethics.
37:58And we could move from these small
38:02steps to try to to change things and to
38:07innovate and trying to eradicate racism
38:10from our discipline from by ethics.
38:13Thank you so much.
38:13Thank you so much.
38:26See if we can make this work out perfect.
38:30Here you go Carlo.
38:31I'm going to take the
38:34questions from the audience.
38:35I'll I'll take the prerogative
38:38of the first question also.
38:40There was there there was AI have a
38:43couple questions but I'll just take
38:45one to start off with.
38:47I think there's something to be gained by
38:51bringing somebody from a very different
38:53culture in a very different country
38:55to come here and talk about racism.
38:57It's a little bit of the
38:58perspective of distance.
38:59Do you know what I mean?
39:00And you talk about use terms like
39:03African American and and I think
39:06you speak and George Floyd example,
39:08you speak very much to
39:09the American experience.
39:11How do you see a difference between racism
39:15in the United States and racism in Italy?
39:18Are the same issues occurring in Italy
39:19to a greater extent, to a lesser extent,
39:22within within medical care and bioethics?
39:25Do you see these as similar problems,
39:27or is there an interesting difference? They
39:30reply or collect these
39:31microphones. I should,
39:31I should tell you, these are tricky.
39:33You got to like, hold them right
39:34like this and get them like
39:34you're a rock star, which you are.
39:40So no, it's not.
39:45Oh, yes, it's working.
39:47Thanks for the question.
39:49It's very interesting.
39:50And I can say that we are completely
39:54unaware of the problem in Italy,
39:56which is really sad.
39:59And that episode or those episodes that
40:02I reported about the the boats or the
40:06policies really are a proof of that.
40:09We we really believe that we
40:11Italians are not racist at all.
40:13What we are, the only difference
40:16with countries like United States
40:18or France or Germany is that we do
40:21not have a big history of migration.
40:24So we are we are going to have.
40:27So we are learning how to be racist slowly.
40:31Why?
40:32Other countries already know how to do that.
40:36For us, putting those people in those
40:38boats were not a racist measure,
40:40was just for the good of them.
40:43But of course it was a deportation.
40:46As I say,
40:47we are going to have more critical
40:50awareness about racism when we'll have
40:52a third and 4th generation of migrants.
40:54So people with a mixture,
40:56but still in Italy resist
40:58this idea of the Italian.
41:00Unfortunately, this is completely,
41:03this is completely crazy.
41:05When will you think that Italy is not,
41:08but the mix of cultures is not by the
41:11mix of culture always being like this
41:13and intersecting people from from
41:15several region, from the Middle East,
41:18from Africa, from the north.
41:20So this is purely crazy.
41:23So it's something that made me suffer,
41:26make me suffer quite a lot.
41:28Why here in the United States
41:30there's a big huge debate about this,
41:32about this.
41:33There's a it's a very controversial issue.
41:36The same I can tell about the Brazil.
41:40In Brazil they are really committed
41:42to to to making things changing.
41:45They have for instance a Ministry
41:50of Racial Equality.
41:52So they are doing biggest effort to
41:56to fight racism and enough care is a
41:59really it's a big problem as those
42:02news that I included just show.
42:04Thank
42:05you. Questions from the
42:06audience or comments. Well,
42:11I have a question. Please wait.
42:13We actually, if you wait one second
42:15for everybody to wait for the
42:17microphone so that everybody can
42:18hear you including the folks on
42:19Zoom and you're a rock star too.
42:20So you got to hold that nice and close.
42:23So my my question is there,
42:25there's overt racism,
42:27there's covert racism and then
42:29and there's this whole idea
42:30that race is a social construct.
42:33How come that doesn't get any movement
42:35because it is a social construct,
42:37you know, And so I'm wondering about that.
42:40How come, like where does that stand?
42:42It's moving that forward because you create,
42:44you know, you have a lot
42:46of impoverished people.
42:47They're of color because of the
42:49history of the United States.
42:50So they have high rates of disease.
42:52They have food desert,
42:52they have all those things.
42:53So they have diabetes,
42:54but it's not because they're black,
42:56it's because they've been
42:58denied any type of services
43:01for hundreds of years or historically. So
43:04how does when do people
43:06look at that, those aspects?
43:10Yeah it's there's a work of several
43:14people As for instance those those
43:17scholars that have highlighted
43:19how bioethics and medical ethics,
43:21the major bioethics and medical
43:24ethics journal, why do they focus
43:26on some problems and not on other?
43:30Because maybe the editorial boards are
43:33made of people coming from certain
43:37geographical region, certain group,
43:39certain elites sometimes also
43:42certain universities and not other.
43:45So this create of course a bias in the
43:49production of knowledge in bioethics.
43:52There is a very well known
43:57physician in Italy whose
43:59name is Giovanni Bellinguer,
44:01who create this idea of the everyday
44:04by ethics and the frontier by ethics.
44:07I named my research group Everyday by
44:09Ethics just because he pointed out of
44:11the the need that we have to focus more
44:14on factors that have been disregarded
44:16in the in the mainstream by ethics,
44:19such as social determinants of
44:21health inequalities, service,
44:23access, primary care and so on.
44:26So of course we do not under we do not.
44:29I do not underestimate the importance
44:31of frontiers advances discovery.
44:33I working on telemedicine
44:35and artificial intelligence.
44:37So this is best proof.
44:40But we have also to retrieve the
44:43importance of those elements that have
44:46been at the at the establishment.
44:48They have been the roof of bioethics.
44:50Bioethics emerged as a as a field that
44:54interplay of fields that try to St.
44:59for introduce social justice for people
45:01who have been denied justice at all.
45:04So we must remember the origin of bioethics
45:07and try to retrieve a little bit of that.
45:09I don't know if I answer it sometimes,
45:14you know in bioethics sometimes
45:16what we what we aspire to is to
45:19answer the difficult questions.
45:21So one and I'm interested in
45:24you're saying this the one point
45:25of viewing this could be this is
45:27not really a bioethics question.
45:29It's an important question for our society.
45:32It's important question for our
45:34profession whether we should do
45:35our best to provide equitable
45:36health care to everybody.
45:38But this is not you know a tremendous
45:40puzzle in the way that we puzzle over
45:43some very difficult you know some people
45:45would say this isn't a hard question.
45:46It's a hard question to
45:52just to solve in practical terms,
45:54but the idea of treating people fairly,
45:57the idea of getting health care to everybody,
45:59regardless of whether they're poor,
46:00rich or poor or black or white,
46:02these aren't.
46:02I would say these aren't really
46:05difficult ethical puzzles.
46:06These are difficult,
46:06practical problems in our society.
46:08But, but I can relate to the bioethicists
46:11who say that you know this is
46:13absolutely important and you know the
46:15the the various agencies in Congress
46:17and the public should be doing this.
46:18But I don't think we'd get a room full
46:20of bioethicist agonizing of whether or
46:22not we should take care of the poor.
46:24I don't. I don't. I don't.
46:26It's for some of this stuff.
46:27I don't see it as a bioethical
46:29puzzle in the same way that I see
46:31so many of the other problems.
46:32And I what separates I think every
46:34day what was the other day every day
46:35Bioethics frontier frontier frontier.
46:38So so that the everyday bioethics
46:40almost seems to be like is it really
46:42bioethics or just common decency.
46:44I know it's a it's a biethics that just
46:47pointed out that the need to to work
46:49in this year for instance the this I
46:51this discourse on the epistemic crisis.
46:54It's really polemic it's
46:55really controversial.
46:56So we don't there there is no convergence
47:00of opinion on how to do that.
47:02For instance, let's take this
47:05idea of the inclusion.
47:06We need to include people from
47:09rationalised so-called minority
47:11group into the trials or not.
47:13Some people say we need to because
47:17this is an inclusion measure.
47:19So we are stripping for for that.
47:22This is for good of them.
47:23Some others saying this
47:25is predatory inclusion.
47:27You are including them just to
47:31keeping the the dominant mainstream,
47:34the views and norms that made
47:37by ethics or medical knowledge
47:39working in the way it works today.
47:42So that's a huge debate about
47:44these things and then sometimes
47:45we disregard or for instance our
47:48medical education is organized,
47:50our primary care service do
47:53respond to the need of people
47:55who have different needs.
47:57So this is not just a poor by ethics,
48:01the everyday by ethics.
48:02It's just that points out that they
48:05need to work more on some issues that
48:09of course are not really prestigious.
48:11Maybe such as frontier biethics,
48:13like no genetics or artificial
48:15intelligence or any other which is also
48:18related to the career of people in biethics.
48:21If you work on cutting edge you
48:24probably have more chances to get
48:27funding to to get position and everything.
48:30If you work on inequalities such
48:33inequalities just social
48:35justice So I don't know if I
48:38no I I appreciate your answer very much.
48:40Everyday bioethics I think maybe doesn't do
48:43justice that term doesn't do justice to the
48:45to the problems you're you're working on.
48:47I think that that certainly scope and scale
48:50they may be it may be far greater than the
48:53frontier bioethics you know that that you
48:55you're actually the A-Team not the B team.
48:57You know what I think Thank you so much.
48:59You need to make it sound that way.
49:00See, Doctor Hughes is ready to say something.
49:02So Mark points out that bioethicists
49:05would probably all agree that
49:08social determinants of health are
49:10a problem and should be solved.
49:12But it's But many of them will not
49:14consider that a moral dilemma.
49:17So how are we? I mean,
49:19I I believe it is, and I think most of us
49:21believe that it is a moral dilemma. And how
49:24do we get?
49:26Therefore, it seems to me
49:28it's worthwhile for bioethics
49:30to be to concern itself
49:32with this particular moral dilemma,
49:34which is enormous.
49:37How do we, how do we do that?
49:40And do you, do you agree that it's
49:43something that bioethicists have
49:44any ability to influence? Well, I
49:49do not have any special receipts for
49:51that, just just so the folks on
49:52Zoom can hear you. There you
49:53go. I do not have a special receipt for that,
49:57but let me say after the pandemic and after,
50:00for instance those declaration,
50:02I've seen something changing.
50:04I've seen more attention on on racial issues.
50:09There have been prestigious journals
50:12publishing special issues on that also.
50:15I mean the fact that I'm here,
50:17it it means something from Italy,
50:20from a small university, you know,
50:23So I see more and more this raising attention
50:28and they need to work more on this.
50:32Of course we need really to
50:34to to look at our ourselves,
50:37to dismantle some notions,
50:39some categorisation we have been used to.
50:42As I said before,
50:43we have been socialised to some theories.
50:46We have to revise that.
50:48So the idea of whiteness is really is
50:52really tricky like can works can can
50:55people black people saying that we they
51:01they are creating their own by ethics.
51:03The black by ethics is that worth to pursue
51:07as a as an attempt or it is another form
51:10of essentializing the debate and maybe
51:13another mistake and other things wrong.
51:15So starting to work on these issues
51:19from the level of practice through
51:21the level of policies and the level
51:24of the epistemic level I think is just
51:26the way to do that to to start to
51:29critically revise what we know how we do,
51:32how we put in practice.
51:34So me, I'm a legal scholar, so I do not
51:39have the the solution for all of this,
51:41but I think can contribute with our work.
51:44Critically with the critical
51:46revision all over this.
51:48I don't know if I answer your well,
51:50let me just ask a question
51:52that Mark can repeat that is,
51:53should bioethicists,
51:55should bioethicists advocate
51:57for a redistribution of wealth
52:01of wealth? It's
52:03going to get us on CNN.
52:04This is going to be good. Go ahead.
52:10Or Fox I don't know which maybe both.
52:14I have an answer but I'm going
52:15to I'm not going to give no
52:19I think there's more it's
52:21more political let's say so.
52:22So to not to blur too much the the
52:26what by ethics is you know so by ethics
52:29can do many things even at that level.
52:31The institutional level we have,
52:34we have some tools we have we can
52:36use our voices as those professional
52:39use it in those circumstances.
52:42National Committee of by Ethics
52:43they are very huge.
52:45They have people,
52:46people of power also in those committees.
52:48But I don't know what is here to
52:50experience in the United States,
52:52but in the Europe they are really
52:54considered as something to the margin.
52:56So they just consult consultants
52:58on from time to time from by by
53:00the government when they need to.
53:02So we can change this, we can change,
53:05we can make these people have a voice
53:09over things that are related to to the
53:13medical grounds so they can express,
53:16they can make some mandatory recommendations,
53:20some more binding guidelines and so on.
53:23So things can change and bioethics
53:26as a as a huge array of tools
53:29to to put in this practice.
53:31I the the the we're living
53:33in a capitalist society.
53:34I don't know if bioethics
53:35can do something with that.
53:37Well, you mentioned about the national
53:39committees and that's I mean in the
53:42United States there are there are
53:44national committees on bioethics
53:46within certain professions, right.
53:47So the American Medical Association has
53:49its own committee and we have a friend
53:51here who was very much involved in that.
53:53The American Academy of Pediatrics has a
53:55committee on Bioethics and they're raised.
53:56But in terms of a national committee,
53:58we had a presidential Commission for decades,
54:01which was, which was dissolved in
54:03the previous administration and which
54:06several people, myself included,
54:07have reached out to the current
54:09administration and say how about putting
54:10that back together, again, with no traction.
54:13So for whatever reason,
54:15the current administration.
54:16So, So we've been without, if you will,
54:19a National Commission on Bioethics,
54:20if that's what the President's
54:22Commission on Bioethics represented.
54:24We've been without that now for,
54:25I don't know, five years,
54:26six years, seven years,
54:27something on that order, unfortunately.
54:30Other questions or comments, Yes,
54:34please.
54:37Thank you. Thank you so much for your talk.
54:38I was just wondering if you could
54:41explain a little bit if a same
54:43categorization system is used in
54:45Italy because I'm one of the people
54:47who have issue with that system.
54:48Like even when going to the hospital or
54:51now add any application or things that
54:53oh like who are you like are you white,
54:55are you black without I even kind of
54:58really having subcategories because
55:01I know like always struggle with
55:03even identifying as men of which is
55:05Middle Eastern and North African and
55:07it's always but in that category.
55:09And I feel like that to some extent
55:11also impact the research that
55:13we do addressing like population
55:16health specifically in different
55:17communities and a group.
55:19So I was just wondering if similar
55:21system is used in Italy or other
55:22countries you might be aware
55:24of. Yeah. Well thanks for the question.
55:28I can say as I said before,
55:30we are quite well unaware about this problem.
55:33So this also reflects it to the to the
55:36medical organization feel and there are
55:40the top institution in the healthcare.
55:43So you go to Milan to I don't know
55:46if Rome let's say in couple 3,
55:49let's say 4 cities in Italy with big
55:53and with a resource available hospital.
55:56And you probably have those people that
56:00are prepared are culturally prepared.
56:02There are can be sociologists,
56:04anthropologists that are 10 people or
56:06are standing beside the physicians,
56:09so they are able to to
56:13I will I will not need to categorising
56:16but at least to identifying who are
56:18in front of, if they have needs,
56:21cultural and linguistic needs and so on.
56:24But generally we do not
56:25have a policy for this.
56:27It's just that all have money
56:29for paying those figures.
56:31So some those extra surplus
56:34of service can do that.
56:37In the other just pass anodized.
56:42Steve,
56:45I have a question about the relationship
56:47of kind of racism to wrongdoing.
56:53I take it that the people
56:54who put those people on those
56:56boats in Italy are racist,
56:58but they don't know they are right.
57:01I mean that and and we know
57:03lots of examples of that.
57:04There are people who are
57:05unaware that they're racist,
57:06and they need to be informed that
57:08the way that they're thinking is
57:10built on structures of racism.
57:11They need to.
57:12But there's another strand of theory.
57:14Think about Madison Powers or Ruth Faden.
57:16People talk about structural
57:18injustice and structural racism,
57:21which you mentioned.
57:22I think, I think you're thinking about
57:23this in your institution's category,
57:25where there can be racist
57:27outcomes and literally no one
57:29in the system who is a racist,
57:32Right.
57:33People are doing things that are
57:34set up institutionally in certain ways,
57:36and you end up with racially unequal
57:38outcomes and you don't have anyone
57:41you can point AT and say bad guy.
57:45So I wonder
57:45if you think that makes it easier or harder
57:50to address institutional problems of racism.
57:52Because on the one hand,
57:54there's no one to be mad at.
57:55There's no one to blame.
57:57At least often there are people
58:00to blame and to be mad at.
58:02But in some cases,
58:03and certainly in some theories
58:05of institutional racism,
58:06there's no one to blame.
58:08And so we don't have certain kinds of
58:11levers available to us for correcting things.
58:14But on the other hand,
58:15we can just sit back and look at
58:16the whole thing as like a data
58:17problem we need to make make better
58:20outcomes for people who fall
58:22into traditional categories that
58:24we're trying to abandon and we're
58:26trying to prevent reification of
58:29of the of the issues and so on.
58:31Anyway,
58:31I just wonder if you've thought
58:33about the relationship of
58:35blameworthiness to policy solutions.
58:38Yeah. Thank you so much for the question.
58:39Yeah, You, you, you touch a good point.
58:43I didn't include this distinction between
58:46structural racism and institutional racism.
58:50They are really related.
58:52Institutional racism contributes to
58:55structural racism which it refers the the
59:00the way society at large perpetrates racism.
59:04Of course it make it harder to to you
59:08don't have someone to point at when
59:11when you have a policy it's it's really
59:14difficult to say ah it's what was your
59:16fault your resist and everything because
59:18the process of the law making process
59:21it involves procedure actors and several
59:25things But yes there's an there's an
59:29expression we use a lot over there.
59:32We from a sociological point of view,
59:35the production of illegality say again for
59:39the production of illegality illegality.
59:41So the non legal we produce the non
59:45legal for people who for instance
59:50undocumented migrants,
59:51they just don't have the paper to entry.
59:55Many years before this was not any problem.
59:59Once you get in the on the county you
01:00:01ask for that paper and you can get it
01:00:04or not depending on where you are.
01:00:06Where you are from now is more and
01:00:09more being criminalized.
01:00:11So we had the crime of illegal state
01:00:14where the crime of illegal entry
01:00:17but it was it was produced.
01:00:20We choose to make that penally irrelevant.
01:00:24We choose to to include in that at in
01:00:28that scenario something which is illegal.
01:00:32For decades Europe has been planning for
01:00:35more and more migrants because we need them.
01:00:39And still it's true,
01:00:41we need a lot of migrants and you
01:00:43need a lot of migrants.
01:00:45I spoke, I spoke these days with
01:00:47a lot of Hispanic people.
01:00:49There's I didn't expect so
01:00:51many Hispanic people here,
01:00:52so many migrants.
01:00:54Why they are here,
01:00:56they're just not undocumented.
01:00:58They you are here because you need them.
01:01:01The society need them.
01:01:02So this is what we are doing.
01:01:04We are pushing back them with all the legal
01:01:07condition but the same time we filter,
01:01:10we select them.
01:01:11Those we that we need them are somehow
01:01:14past poor from from the through the
01:01:17system and the other are rejected.
01:01:20I don't know if
01:01:25Doug, you're home
01:01:30is this sounds
01:01:30great. Thank you for a great talk.
01:01:33And actually, I kind of want to piggyback
01:01:34off of that question a little bit.
01:01:36Sort of it's, it's a little bit of a
01:01:38different axis from sort of the individual
01:01:41versus institutional racism issue,
01:01:42but also sort of like the the explicit
01:01:45explicit versus implicit bias issue.
01:01:47Because I think that, you know, it's it,
01:01:50it can be tempting to sort of dichotomously
01:01:52categorized individuals as like,
01:01:54well, these individuals are racist
01:01:55and these individuals aren't racist.
01:01:57But actually, everyone harbors implicit bias,
01:01:59you know, whether that's in racism or
01:02:03sexism or assumptions about body size or
01:02:06poverty or or whatever it is harboring.
01:02:09Some degree of implicit bias
01:02:11is the human condition.
01:02:12And you know, a person who who assures
01:02:15that they are not biased in any
01:02:16way, I'm actually really worried
01:02:17that they're very biased and
01:02:18they're not even aware of it. So
01:02:20how, how do you think, what what
01:02:24do you think are the most effective
01:02:26strategies at at addressing
01:02:28and mitigating that implicit bias,
01:02:31which you know in in many ways helps
01:02:34to preserve institutional bias
01:02:37because of a lack of awareness of the
01:02:40structural problems that are in place.
01:02:41And I I know that's not
01:02:43an easy question but I'd.
01:02:44I'd love to hear your comments on that.
01:02:46That question will be better addressed
01:02:49to psychologists psychotherapists.
01:02:51No, But I get the point.
01:02:52It's it's not easy at all.
01:02:54I mean, me myself,
01:02:55even if my when I started to to work on this,
01:03:00I didn't want to become a researcher
01:03:01or professor or anything.
01:03:02I just wanted to understand what
01:03:04was happening in the Mediterranean
01:03:06Sea with those migrants dying on
01:03:08from the boat and everything you
01:03:11know So me myself I'm I'm driving
01:03:17but this idea this of just being
01:03:20good the the the most I can and
01:03:24let's say I'm not I I'm not myself.
01:03:27I do not consider myself a racist
01:03:30or or any other people who have
01:03:33a bias toward people who are not
01:03:36the same group of mine.
01:03:38But I know myself I'm I'm
01:03:40I have a bias racist bias.
01:03:43I have prejudice inside of
01:03:45me because all we have.
01:03:47So it's quite impossible we on the
01:03:51individual side in the middle ground
01:03:53to say OK from now on I'm getting
01:03:55rid of all of my prejudice and and
01:03:57change of course this is this in
01:04:00takes a work of decades education
01:04:03so many years it's it's a there's
01:04:08an episode I always think on that
01:04:10sometimes it happened to me when
01:04:13I touch someone on the street just
01:04:15by chance and is a very is a woman
01:04:21very well dressed and they say oh
01:04:24sorry oh there is not this this
01:04:26differentiation in English but OK I
01:04:28I used a very formal way to say sorry.
01:04:32Then I touch in the street someone
01:04:34who has some tissues selling stuff
01:04:37is a black person say oh how are you.
01:04:43So this is racism and it's me that
01:04:46I'm working on on racism by ethics.
01:04:50So of course I cannot I do not have
01:04:52the power to change everything of me.
01:04:54But yes I have the power to start
01:04:56wondering about what I'm doing
01:04:58wrong at the individual.
01:05:01Perhaps that you know that
01:05:03it falls under the category
01:05:04of the perfect is the enemy of the good.
01:05:07Which is to say that if we say well
01:05:09so the goal is to have absolutely
01:05:12no bigotry racism in in ourselves
01:05:14and in our society then we say,
01:05:17well therefore I don't want to acknowledge
01:05:19that I carry any of these problems.
01:05:22So maybe the it's as as what you
01:05:23would come and maybe just say, OK,
01:05:25so we've all got some problems on some level.
01:05:26So maybe the the first goal should
01:05:29should not be to make society that's
01:05:31perfect because recognizing that we're
01:05:33not going to get there very soon.
01:05:35So then we just kind of pretend
01:05:37it's not a problem or some of us do
01:05:39sometimes rather than say all right so
01:05:40we recognize we've all got a problem
01:05:42on some level and OK, so be it.
01:05:44So that maybe the first goal is
01:05:46to recognize as you talk here with
01:05:48your own explanation,
01:05:49so recognize what is it about me,
01:05:51what is it about me?
01:05:51It's something about everybody.
01:05:53So what is it about me?
01:05:54And then maybe, you know,
01:05:56but as soon as we start telling ourselves
01:05:58that that you you have to be pure,
01:06:01that if everybody's everybody
01:06:02needs to be pure.
01:06:03So it it becomes very difficult
01:06:05for anyone to acknowledge that
01:06:07they're not when in fact nobody is.
01:06:09And so if we can start saying,
01:06:11yeah, actually it's there.
01:06:12So can I actually take a good
01:06:13hard look at what's there?
01:06:14And then maybe that begins to to
01:06:16fix things on an individual And
01:06:17then a structural level,
01:06:18if I could just take a good
01:06:19hard look at what's there.
01:06:21And that's easier to do if we
01:06:22acknowledge that we've all got a problem,
01:06:23that we've all got blemishes in this regard.
01:06:27Yes,
01:06:30yes, yes. Questions or comments,
01:06:35Sir? Oh, a long walk all
01:06:38the way around the room.
01:06:48Thanks. I'm, I'm really interested
01:06:50in this Catch 22 you talked about
01:06:52a little bit in your lecture,
01:06:54this idea that, you know race is
01:06:55a is a social construct, right?
01:06:58And yet we observe very real
01:07:00disparities across these,
01:07:01these racial categories.
01:07:03The categories are socially constructed,
01:07:05but there's nothing socially
01:07:06constructed about these disparities.
01:07:08There's nothing socially constructed
01:07:09about maternal mortality, for example.
01:07:14And yet to try to address those
01:07:15disparities, it seems like in doing
01:07:18so, we have to reify these racial
01:07:22categories that we all agree are,
01:07:24at least in this room, I hope
01:07:26are social constructs, right? So
01:07:29I just want to hear a little bit more
01:07:30about that inherent
01:07:31tension, if there's any solutions
01:07:33that have been proposed.
01:07:34I'm sure people a lot smarter
01:07:36than me have thought about this
01:07:38a lot longer than I have. Yeah,
01:07:42yeah. And you had in that one slide
01:07:43you had actually was you started
01:07:44out and you ended up at the base.
01:07:46So it was almost like a
01:07:48self perpetuating problem.
01:07:48Is that the only way to to fix the
01:07:50problem just made the problem worse.
01:07:52And then we start back at the beginning,
01:07:53you know what the slide I'm talking about,
01:07:54no, don't worry about it,
01:07:56just address it. But I got,
01:07:57I got the point was the biologization.
01:07:59Yeah, that's what you talked about.
01:08:01Yeah, the biologization of the social.
01:08:03Yeah, got great point actually. And
01:08:08so when we talk about race,
01:08:10there are several orientation of
01:08:13of course for decades there have
01:08:16been those racial naturalists,
01:08:18so people who think that race was natural
01:08:23or something that exists in nature.
01:08:27So this is not likely is
01:08:29not any more relevant.
01:08:30Then we have the race abolished abolitionist.
01:08:35So those people who believe
01:08:36that we just get get rid of race
01:08:39ethnicity than any other.
01:08:40And then we have race
01:08:44a medium level.
01:08:45So people who acknowledge that
01:08:47race is a social construct,
01:08:49but they also say that we have to,
01:08:52we cannot get rid of this notion
01:08:54because it's very useful for instance
01:08:56at the level of health policies,
01:08:59epidemiology and so on.
01:09:01Again, I want to take the example of Brazil.
01:09:05They have strong problem with racism
01:09:07in the society and and very strong
01:09:09problem with racism in healthcare,
01:09:11in medicine. So they adopted over the
01:09:14time a policy at which brought patients,
01:09:17bring patients to declare their they self
01:09:21declare race and colour to which they belong,
01:09:24to which they think they belong.
01:09:27So if you touch this policy they
01:09:30they are going to kill you because
01:09:33for them it was an achievement of
01:09:36decades they they fought for that.
01:09:38For them it's the best they could
01:09:41achieve in terms of policies.
01:09:43They are getting a lot of data about
01:09:45the inequalities the the suffering
01:09:48of black and brown people in Brazil.
01:09:50They're being underserved and everything
01:09:53those inequalities and etcetera etcetera.
01:09:56But it's true that the same time this
01:09:59contribute to reinforced the idea
01:10:01that race is is something biological
01:10:03it's something that is in the body.
01:10:06So how how can we do.
01:10:09I do not have the answer because
01:10:12let me say I think the the best
01:10:15will be with time passing to to
01:10:17shift to other tools and understand
01:10:20that they are just flawed.
01:10:22So maybe for now let's take guys of Brazil,
01:10:25they are necessary,
01:10:26maybe tomorrow will be not.
01:10:28But of course we still have to consider this.
01:10:32The trace is not in script in the body,
01:10:35it's just in the social structure.
01:10:37So when we consider,
01:10:39when we think about medical
01:10:41knowledge is the is the same.
01:10:42We are using something which is not in
01:10:45the body, which is not in the biology,
01:10:47which is not in the human genome.
01:10:49It's just something we brought into that.
01:10:51So there's a paradoxes.
01:10:53Yeah. It's a controversial.
01:10:55Yes.
01:10:56So.
01:10:56But as as Professor Mercury has said before,
01:11:00the first step is being aware of
01:11:02that because some people say no,
01:11:04it's not true.
01:11:05So first of all,
01:11:06let's work on this and say how
01:11:08we can dismantle this problem.
01:11:10One can one deal with that,
01:11:11that we can slowly overcome that and
01:11:14create new language for the studying
01:11:16the difference of the human biology,
01:11:18the human variation and everything.
01:11:20I don't know if I thank you.
01:11:24So some say that you know race was
01:11:28a bad idea the idea of categorizing
01:11:30human beings as being different races.
01:11:32But now that and then that led
01:11:34to a lot of injustice and and
01:11:37and now we we need that concept.
01:11:40I mean I've heard this argument made
01:11:41by by at least one individual whose
01:11:43work is in racial equality said
01:11:45now we need the concept to address
01:11:47those injustices that that concept
01:11:48created which does run the risk of
01:11:51of perpetuating again but but but
01:11:53that's at least one colleague's
01:11:56opinion who is who is teaching me
01:11:58about this that we that we need the
01:12:00concept to fix all the problems
01:12:01that were created by the concept.
01:12:03Yeah
01:12:03yeah it's it's it's exactly the the
01:12:06the policy that you have in Brazil and
01:12:08not not just in Brazil I mean can be
01:12:11also relevant for UK maybe UK policy.
01:12:13We do not have something like that in Italy.
01:12:16As I said, I don't know,
01:12:19maybe it is necessary in this phase
01:12:22because we do not have alternative,
01:12:24but maybe it's time to start
01:12:26to think about something else.
01:12:28And slowly putting aside that,
01:12:32in my opinion that will be really good
01:12:35to to get rid of any derivative of race,
01:12:39So race, ethnicity,
01:12:42because they are just flow with
01:12:44categories when you apply to
01:12:47the to the medical knowledge,
01:12:49to the scientific ground.
01:12:50Of course they are good social
01:12:52policy instrument, but they are not.
01:12:54For instance,
01:12:55at the genetical level,
01:12:56it has been found that location,
01:12:59geographical location can be a
01:13:01better proxy of ancestry.
01:13:03There's a lot of talking about
01:13:05ancestry in genetic as a relevant
01:13:09criteria, but geographical location
01:13:11that has been found to be better,
01:13:14more accurate than than ancestry
01:13:16and of course much more accurate
01:13:18than race and ethnicity.
01:13:20Because you have seen that we have
01:13:23overlapping definition of race and ethnicity.
01:13:25Sometimes you're being Hispanic,
01:13:27it is a race, sometimes it's ethnicity,
01:13:30it's a it's a variant.
01:13:32So there is no agreement on that.
01:13:35How can scientific
01:13:36accuracy proceed from that?
01:13:41Yes, Sir.
01:13:46Thanks. Great talk.
01:13:47So in the medical field we have
01:13:50a lot of race based kind of adjustments,
01:13:52you know, so this creatinine which
01:13:55has recently changed I think at YNHH,
01:13:58but that has been shown to disadvantaged
01:14:00people among like getting access to
01:14:02dialysis with respect to creatinine and
01:14:04access to renal transplant stuff like that.
01:14:06So I guess it's great that we know this,
01:14:09but I guess, but how do we de implement
01:14:11these sort of racist based policies
01:14:13that are so ingrained in some of our
01:14:16medical kind of predictive models?
01:14:19Thank you so much.
01:14:20That's also another good question.
01:14:22We are not ready,
01:14:23we're not ready at all for doing that.
01:14:25I've been also part of research project,
01:14:29international research project
01:14:30where this was an issue.
01:14:32I've been say, oh,
01:14:33we have to collect racial and
01:14:36ethnic data about cardiology,
01:14:38cardiological intervention say.
01:14:41Why are arts of people of different
01:14:46population groups supposed
01:14:47to work differently?
01:14:49Why we have to know if that was yellow,
01:14:54white, black.
01:14:56And if I say something else
01:14:58on a personal level,
01:15:00me severe started to to ask when you
01:15:05submit a paper which group you belong to
01:15:09and which ethnic can cut SO22 questions.
01:15:12I was really surprised oh wow.
01:15:14And now what I what I thinking
01:15:17which box I I go for because I I
01:15:19will not be able to say which is
01:15:22what is my race and what is my
01:15:25ethnicity and even what is my colour.
01:15:27I would not define myself as white.
01:15:30I've been considered as as brown
01:15:34in Germany and then consider it
01:15:36to be totally white in Brazil and
01:15:39in South of Italy.
01:15:42I I'm,
01:15:43I'm someone who comes from
01:15:44the Arabic in north of Italy.
01:15:47I'm I can pass for people from Syria.
01:15:50You know so this is
01:15:54totally unscientifically so medical
01:15:56knowledge is not ready for that.
01:16:00This move from Elsevier just mystify
01:16:03that we are going more and more toward
01:16:06this consolidation of the categories.
01:16:08But who defines these categories who
01:16:11defines if I am white or Middle East or
01:16:15or or anything else I do not know really.
01:16:17So also this is a process which which
01:16:22will require years, decades to change,
01:16:25but at at least we start to think
01:16:28that we are making something wrong.
01:16:31So maybe this is the first step,
01:16:33I would say, in in my humble position
01:16:35of a legal embryosis scholar.
01:16:40Thank you. Other comments or questions,
01:16:44this gentleman and then this lady here.
01:16:53Thank you. Yeah, terrific talk. So another
01:16:56something very surprising happened
01:16:58right over there at that hospital
01:17:00with regards to the COVID pandemic.
01:17:03You showed some data on the really
01:17:06horrific disparities about how COVID
01:17:08affected different groups of people.
01:17:11And this may get at a little bit
01:17:12of what Steve was talking about.
01:17:13Well, maybe we just need to
01:17:15improve outcomes in some way.
01:17:17And what happened was that although
01:17:20the prevalence of COVID was much
01:17:22higher among African American and
01:17:24Hispanic groups and the underserved,
01:17:29the outcomes in the hospital were equal.
01:17:33So there was no disparity
01:17:34in mortality among patients
01:17:37with COVID looking at race or
01:17:41income level and so forth.
01:17:43And why was this? I mean,
01:17:45I don't have the answer, but I think
01:17:47one thing was that it was
01:17:49the disease was a new disease.
01:17:51It was treated with treatments that
01:17:53people weren't familiar with and didn't
01:17:55select or decide it was all algorithm,
01:17:58all driven by care pathways and algorithms.
01:18:02So it was really blind to any bias that a
01:18:06clinician may have that they might bring to
01:18:09other conditions that they've been treating.
01:18:11So it was, you know,
01:18:13it was something at the hospital
01:18:14was very proud of that unlike most
01:18:17places in this country,
01:18:19there was equality and outcomes
01:18:22with patients treated for COVID.
01:18:24And I think it gets at this notion about
01:18:27how perhaps to assemble those biases by
01:18:33some you know in this case a method that
01:18:38really just bypassed individual biases
01:18:40among treating physicians and nurses.
01:18:42I don't know if you have
01:18:44any thoughts on that.
01:18:47I haven't,
01:18:48I haven't thought much about
01:18:51that about the the bias in the
01:18:53in the medical knowledge that
01:18:55could bring to more inequalities.
01:18:57I just focusing on social factor,
01:19:00societal factor that bring
01:19:02some people to be cared or not.
01:19:05That bring some people to be more
01:19:09exposed to to the situation in which you
01:19:13can easily more easily get the virus.
01:19:16And then again situation in which
01:19:19you are it's more difficult for you
01:19:22to handle the infection to deal with
01:19:24that to deal with the consequence.
01:19:26So but yes it's also it can be also
01:19:29relevant if you have a flow with
01:19:32medical knowledge that brings to
01:19:35treat people according to race based
01:19:39notions and and can yeah of course can
01:19:42be a factor that increases the the,
01:19:45the extent of those inequalities
01:19:46we have seen.
01:19:47And absolutely yeah
01:19:52I have a question from Zoom and
01:19:53then I promise you so you're
01:19:55going to be the grand finale.
01:19:56Get ready get ready.
01:19:57Now I know you've had a chance to
01:19:59put it but if you'd like speak again
01:20:00I'd like you to but I have a question
01:20:02here which is a very interesting
01:20:04one about creating more categories.
01:20:06An attendee says one of the people who
01:20:08asked a question before identified as
01:20:12MENAA category that I believe
01:20:14falls under white non Hispanic
01:20:16and therefore becomes invisible.
01:20:18As a result, Arab Americans become
01:20:20an erased minority in the US.
01:20:22A minority that undoubtedly faces
01:20:24healthcare inequities and certain
01:20:25social determinants of health.
01:20:27Should medical scientists and clinicians
01:20:30advocate for a difference to be carved out?
01:20:33Would that do more harm than good?
01:20:35Should we create another category,
01:20:37or does that do more harm
01:20:38than good for doing what?
01:20:39Let me Middle Eastern and N
01:20:41Is that Middle Eastern?
01:20:42North African? Yes.
01:20:45Easier to read perhaps
01:20:46than to hear me read it
01:20:49so that there's there.
01:20:50But there are a number of people
01:20:51I think who when they read those
01:20:53categories they give us say,
01:20:54well none of those actually describe me.
01:20:56Yeah exactly As I was saying before this,
01:20:58this is a a tricky effect of you
01:21:03creating categories and then
01:21:05you're you're fixed setting in
01:21:07a rigid way the human features.
01:21:10And then there are a lot of this,
01:21:11this is a problem in clinical trial.
01:21:13I've been there have been
01:21:14also publication on this,
01:21:16people who do not are not represented,
01:21:18who do not feel represented in
01:21:20in none of those categories.
01:21:22So you are prevented from from being
01:21:25in that trial because you are not
01:21:27allowed to pick a box and say OK,
01:21:30I'm in that that will be the case of me.
01:21:33For instance is someone really asked me
01:21:36in a clinical trial what's your race?
01:21:39So should we make more categories?
01:21:40This is, that's the question. Should
01:21:41we. No, no, not more categories.
01:21:43We should create categories that are
01:21:46not based on racial derivatives.
01:21:49So free from from the national race.
01:21:53Just this is my so we can Also as I was
01:21:57saying to someone else, if you ask me,
01:22:00what is my race, my ethnicity?
01:22:01I do not have an Asper.
01:22:03If you ask me what is my lifestyle,
01:22:06my my choices in healthcare,
01:22:09I do have a a a perfect answer.
01:22:12So if race is a social construct
01:22:15and it's so difficult to to
01:22:18identify this category to to to to
01:22:20use it in a in a scientific way,
01:22:23why we cannot move to another criteria
01:22:27which is also rooted in the social?
01:22:29So race is social construct.
01:22:32You ask me what is my my lifestyle.
01:22:35It's my question it's it's also social
01:22:37so it's also rooted in the social.
01:22:39So why that and not this?
01:22:41It's the same so you don't we just
01:22:44have to Racine to give up with the
01:22:47idea that something in the body gives
01:22:50up the the perfect distinction of the
01:22:53human in in in different population group.
01:22:56But, but
01:22:57the counter argument to that
01:22:58was what I what I had mentioned
01:23:00before is that some say no,
01:23:02we need to use these.
01:23:02We need these categories
01:23:04because these categories,
01:23:05as bogus as they were when they were created,
01:23:07have created injustice for certain
01:23:09groups of individuals that were
01:23:11assigned to these categories.
01:23:12And so now we they claim and this
01:23:14is the argument that we need these
01:23:16categories to address those injustices.
01:23:19Yeah,
01:23:19the way the way the system work right now,
01:23:21the way medical knowledge works right now,
01:23:23of course we need it because
01:23:24it's the only way we have.
01:23:26So time is time is come to time has
01:23:29come to think to something else.
01:23:30I mean we can continue
01:23:32to use those categories,
01:23:34but could the same not,
01:23:35could the same not hold for
01:23:36people of Middle East or North
01:23:38African saying that that people
01:23:39put me in this box and as a result
01:23:42I've suffered some injustices.
01:23:43So does the creation of this
01:23:44box give me a mechanism to move
01:23:46away from those injustice? Yeah,
01:23:48but what's even create
01:23:49more and more categories?
01:23:50So we get the southern Italian,
01:23:52the southern Italian from Calabria,
01:23:53southern from the middle Italy.
01:23:56So I think the the proliferation of
01:23:59categories based on the idea race
01:24:01does not lead anywhere, any, anywhere.
01:24:06I appreciate it. And I
01:24:07promised the last question.
01:24:08Yeah, no, I think it was
01:24:10just on the same point.
01:24:11I mean I'm still grateful that I'm
01:24:13there is this box where it says other.
01:24:15So you're like they are
01:24:17recognising specifically that
01:24:18there is way too much about it.
01:24:21But I was actually on the
01:24:23comment on the implementation,
01:24:24all kind of these categories
01:24:26and like the criteria,
01:24:27but I just kind of repeating the
01:24:29same point that we cannot do that
01:24:31before we actually shift our kind
01:24:33of the whole system to word more
01:24:36of like patient equity and patient
01:24:38centered care and delivery of care.
01:24:41Because as mentioned like if you
01:24:43keep kind of creating categories,
01:24:45we're creating more issues
01:24:46that needs to be solved.
01:24:48However,
01:24:48it's still a huge issue kind of to deal with.
01:24:51And what from the other perspective I
01:24:54will say contradicting is that nowadays
01:24:56the majority of like research projects,
01:24:59for example actually addressing let's
01:25:02say chronic diseases among black
01:25:05Americans or African Americans individuals.
01:25:08This research will not be done without
01:25:11actually cauterizing them as that,
01:25:13but also from the other kind of perspectives,
01:25:16if we actually remove some of these
01:25:19categories in specific kind of conditions,
01:25:21we're removing the history of
01:25:23these populations as well.
01:25:25And also we're kind of discarding
01:25:28all kind of the inequities that
01:25:31they have faced throughout history.
01:25:33So there is always both side of
01:25:34the but I would definitely agree
01:25:36that there is no way to kind of
01:25:38de implement or even create more
01:25:40categories other than creating problems.
01:25:42But still we need solutions
01:25:44to actually do it.
01:25:46Just because we're not creating an
01:25:48additional category does not mean
01:25:50that these communities identity
01:25:52should also be discarded or even
01:25:54belong to another community.
01:25:56That is that they never felt
01:25:58kind of related to.
01:26:00I can take to work here with
01:26:03me on that stuff. Not really.
01:26:04You say the very good you said it properly.
01:26:08The more the fact that you create more
01:26:11and more category does not means the
01:26:13end of the other category because there
01:26:16will be always someone who doesn't.
01:26:19So this is not as I say medical knowledge.
01:26:22The way it works is not ready
01:26:24for getting rid of that.
01:26:26But the hope is that we altogether
01:26:29are going to raise the awareness
01:26:32on this problem of categorization
01:26:34and start to think of alternatives.
01:26:36The as as Professor Mcgrew say,
01:26:39the perfect is the enemy of the good.
01:26:40So slowly to improving this
01:26:42edition for the good.