Bioethics & Racism

Transcript

• 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.