From park bench to lab bench - What kind of future are we designing? | Ruha Benjamin | TEDxBaltimore

Summary

The speaker explores the concept of 'discriminatory design' in public spaces and scientific research, highlighting how design choices can exclude certain individuals. Examples include benches with armrests to deter loitering and the use of brain scans to predict criminal behavior. The talk emphasizes the need for inclusive design and the importance of considering diverse perspectives in scientific research to avoid perpetuating social inequalities.

Takeaways

• 🌞 The speaker contrasts their experience of seeking sunlight in the Northeast with their time in warmer climates, highlighting the importance of public spaces for relaxation.
• 🛋️ The concept of 'discriminatory design' is introduced through the example of benches with armrests, which are designed to prevent loitering and reflect broader social values.
• 🌍 Discriminatory design is a global phenomenon, with examples ranging from single-occupancy benches in Helsinki to caged benches in France and metered benches that require payment to sit.
• 💺 The metered bench, created by a German artist, is used by cities worldwide to deter 'bench hogging,' illustrating how public spaces are increasingly privatized.
• 🏛️ The speaker critiques the ethos of prioritizing 'customers' over 'people' in public life, arguing that this approach can lead to the exclusion of certain groups.
• 🔬 Discriminatory design in biotechnology and medical research is a concern, as it can perpetuate social inequalities if not carefully considered.
• 🧬 The story of Siobhan, an African-American egg donor, illustrates how discriminatory design in medical research can have serious health consequences for individuals.
• 🧠 Neuroscience's focus on studying impulsivity in incarcerated individuals is questioned, as it may reinforce existing prejudices and societal issues rather than addressing root causes.
• 🔍 The pursuit of genetic markers for violence, as seen after the Newtown school shooting, is criticized for potentially stigmatizing the mentally ill and avoiding broader social issues like gun control.
• 🌟 The legacy of Henrietta Lacks and the use of her cells (HeLa cells) in medical research raises ethical questions about consent, privacy, and the inclusion of marginalized voices in scientific advancement.
• 🔄 The speaker advocates for a more inclusive approach to design, suggesting that we need to consult a diverse range of voices to create a future that is equitable and considers the social and environmental impacts on all.

Q & A

What is the main issue the speaker is addressing regarding public benches?

The speaker is addressing the issue of discriminatory design in public benches, which are designed to deter certain behaviors or groups of people, such as loiterers or homeless individuals, from using them.

What are the examples of discriminatory design mentioned in the script?

Examples include single occupancy benches in Helsinki, caged benches in France, and metered benches where one has to pay to sit and avoid spikes.

Why does the speaker believe that the interests of the most affluent should not govern decisions affecting everyone?

The speaker argues that the interests of the most affluent should not govern decisions because it can lead to the reproduction of existing social inequalities and neglect of the needs and concerns of potentially harmed groups.

What is the significance of the term 'discriminatory design' in the context of the script?

In the context of the script, 'discriminatory design' refers to the intentional design of public spaces or technologies to exclude or disadvantage certain groups of people, often based on their social or economic status.

How does the speaker relate the concept of discriminatory design to biotechnology and medical research?

The speaker relates discriminatory design to biotechnology and medical research by suggesting that the questions researchers ask, the places they look for answers, and the people they consult can all perpetuate social inequalities if not carefully considered.

What is the story of Siobhan mentioned in the script, and what does it illustrate?

Siobhan is a young woman who responded to an ad for African-American egg donors, underwent a procedure that led to health complications, and was later asked to donate her eggs to stem cell research. Her story illustrates how discriminatory design in medical research can lead to negative outcomes for individuals who are not adequately consulted or considered in the research process.

What is the speaker's critique of using brain scans to study impulsivity among incarcerated individuals?

The speaker critiques the use of brain scans to study impulsivity among incarcerated individuals as it targets an already subordinate population and risks reinforcing existing prejudices and profiling policies, rather than addressing the root causes of criminal behavior.

How does the speaker connect the study of genetics and violence to discriminatory design?

The speaker connects the study of genetics and violence to discriminatory design by pointing out that focusing on the genetic predispositions of mass killers distracts from broader social and environmental factors contributing to violence, such as gun control and mental health support.

What is the significance of Henrietta Lacks' story in the context of the speaker's discussion on discriminatory design?

Henrietta Lacks' story is significant because it highlights the historical exploitation of marginalized individuals in medical research and the importance of including their voices and consent in the design of medical studies and practices.

What is the speaker's vision for the future of biotechnology and medical research?

The speaker envisions a future of biotechnology and medical research that is inclusive, considers the voices of those who are potentially harmed, and actively works to address social inequalities rather than perpetuating them.

Outlines

00:00

🌞 Discrimination in Public Design

The speaker discusses their experience with public benches designed to prevent loitering, highlighting the global phenomenon of discriminatory design. They mention examples from Helsinki, France, and a metered bench in Germany, which are intended to deter 'bench hogging.' The speaker argues that such designs reflect a societal preference for customers over people, and that this approach avoids addressing the root causes of social issues like homelessness. The speaker suggests that discriminatory design in public spaces is symptomatic of a broader issue where technological fixes are used to manage social problems rather than solving them.

05:02

🧬 Ethical Concerns in Biotechnologies

The speaker challenges the notion that the customer is always right, particularly when the interests of the affluent influence decisions that affect everyone. They advocate for considering the perspectives of those who might be harmed by new biotechnologies. The speaker shares the story of Siobhan, who suffered from ovarian hyperstimulation syndrome after donating eggs for stem cell research. The narrative illustrates how the design of clinical research can lead to adverse outcomes for participants, emphasizing the need to include the voices of those affected in the decision-making process to prevent the reproduction of social inequalities in biotechnological advancements.

10:05

🧠 Neuroscience and Discriminatory Design

The speaker critiques the application of neuroscience in predicting criminal behavior, particularly in the context of studying impulsivity among incarcerated individuals. They argue that this approach tends to locate the problem within 'problem people' rather than addressing systemic issues. The speaker points out the potential for such research to exacerbate existing prejudices and profiling policies, particularly against black and Latino youth. They suggest that scientific research should be more inclusive and consider the broader social and environmental factors that contribute to societal challenges.

15:06

🔬 Genetics, Violence, and Social Responsibility

The speaker discusses the ethical implications of genetic research into violence, especially in the wake of mass shootings. They express concern over the focus on finding genetic predispositions for violence in individuals, which can lead to stigmatization and a neglect of broader social and political factors. The speaker uses the example of the New Town shooting to highlight how such research might divert attention from issues like gun control and mental health support. They emphasize the importance of considering the social and environmental context in scientific research and the need for a more inclusive and socially responsible approach to scientific inquiry.

20:08

🌟 Redesigning the Future with Inclusivity

The speaker concludes with a call to action for a more inclusive approach to design and research, using the story of Henrietta Lacks and the HeLa cells as a case study. They recount how Lacks' cells were used without her or her family's consent, leading to ethical debates and eventually a more collaborative relationship between the scientific community and the Lacks family. The speaker suggests that the future of science and technology should be shaped by a diverse group of stakeholders to ensure a more equitable and representative outcome. They advocate for a future that values sociality and inclusivity, rather than a sterile and exclusive vision of progress.

Keywords

💡Discriminatory Design

Discriminatory design refers to the intentional or unintentional creation of spaces, policies, or technologies that exclude or disadvantage certain groups of people. In the video, this concept is explored through examples such as benches with armrests to deter loitering, which can exclude homeless individuals from resting. The video argues that such designs reflect and reinforce social inequalities rather than addressing the underlying issues that lead to these behaviors.

💡Privatization of Public Life

Privatization of public life is the process by which public spaces and services are increasingly controlled by private entities, often with the aim of maximizing profit or efficiency. The video discusses how this can lead to the exclusion of certain individuals, such as the 'metered bench' example where people must pay to sit, reflecting a prioritization of customers over the general public.

💡Benches as Social Commentary

In the video, benches are used as a metaphor for how public spaces are designed to either include or exclude certain members of society. The various types of benches mentioned, such as single occupancy, caged, and metered benches, serve as examples of how design choices can reflect societal values and priorities, often excluding those deemed as 'loitering' or 'undesirable'.

💡Technological Fixes for Social Crises

The video critiques the tendency to use technology as a quick fix for complex social issues, such as homelessness or crime, rather than addressing the root causes. This is exemplified by the 'metered bench' which uses a technological solution (paying to sit) to manage what is fundamentally a social issue (public space availability).

💡Egg Donation and Stem Cell Research

The video discusses the case of Siobhan, who experienced negative health consequences after donating eggs for stem cell research. This example is used to highlight how certain medical practices can disproportionately affect vulnerable populations and how the design of clinical research can lead to discriminatory outcomes, such as not tracking the long-term health of egg donors.

💡Impulsivity and Neuroscience

Impulsivity is a psychological concept referring to the tendency to act without thinking about the consequences. In the context of the video, it is discussed in relation to neuroscience research that aims to predict criminal behavior through brain scans. The video critiques this approach for potentially reinforcing stereotypes and stigmatizing certain groups, such as incarcerated individuals, rather than addressing broader social issues.

💡Genetics of Violence

The video touches on the controversial topic of studying the genetic basis for violent behavior, particularly in the wake of mass shootings. It raises concerns about the ethical implications of such research, the potential for stigmatizing individuals with mental illnesses, and the danger of diverting attention away from societal factors that contribute to violence.

💡Henrietta Lacks

Henrietta Lacks was a woman whose cancer cells were taken without her consent and became the first immortal human cell line, known as HeLa cells. The video uses her story to discuss issues of consent, privacy, and the ethical treatment of individuals in medical research. It also highlights the importance of including diverse voices in the design of research to avoid discriminatory practices.

💡Social Inequalities in Biotechnologies

The video argues that the development of new biotechnologies can inadvertently reproduce existing social inequalities if not carefully considered. It suggests that the voices of those who might be harmed by new technologies should be included in the decision-making process to prevent the perpetuation of discrimination.

💡Designing Differently

Designing differently is a call to action in the video for creating more inclusive and equitable designs in public spaces, medical research, and technology. It emphasizes the need to consult with a diverse range of stakeholders and consider the broader social and environmental impacts of design decisions.

Highlights

The speaker discusses the prevalence of discriminatory design in public spaces, such as benches with armrests to deter loitering.

Examples of discriminatory design are found globally, including single occupancy benches in Helsinki and caged benches in France.

The concept of metered benches that require payment to sit is introduced, highlighting the privatization of public life.

Discriminatory design is linked to the broader issue of creating technological fixes for social crises rather than addressing root causes.

The importance of considering who is missing at the lab bench when making important decisions in biotechnology is emphasized.

The speaker argues against the notion that the customer is always right, suggesting that the affluent should not govern decisions affecting everyone.

The story of Siobhan, who suffered from ovarian hyperstimulation syndrome after donating eggs, is used to illustrate discriminatory design in medical research.

The lack of tracking the health of egg donors is highlighted as a significant oversight in medical research ethics.

The speaker critiques the use of brain scans to study impulsivity in incarcerated individuals, suggesting it targets already marginalized populations.

The potential for scientific research to reinforce existing prejudices and policing policies is discussed.

The genetics of violence is questioned as a field of study, with concerns about stigmatizing the mentally ill.

The story of Henrietta Lacks is recounted to discuss the historical context of medical research and privacy concerns.

The aftermath of Henrietta Lacks' story and the current involvement of her family in research decisions is highlighted.

The speaker calls for a future where progress is defined by inclusivity and the consideration of multiple perspectives.

The importance of consulting a diverse range of voices in the design of technology and research is emphasized.

The concept of 'getting our hands dirty' in creating a more inclusive material and social world is introduced as a call to action.

Transcripts

[Music]

so I've spent a lot of my life in warm

climates and now that I'm in the

Northeast I feel like I spend a lot of

time just chasing

Sunshine um on a recent trip to

California I was sitting on a bench

and

um the slides aren't

on give me one second while we queue

up sitting on this bench in California

on a recent trip um for that few minutes

before moving on with the business of

the trip I just wanted to lay down for a

few minutes and soak in some sunshine

and I quickly realized that I couldn't

lay down on the bench something was

wrong with the bench

whoever had designed the bench decided

to put armrests on it and while I don't

think it was created to give me trouble

I'm pretty sure that the armrests were

put there to deter loiterers from laying

down on the bench and with a little

digging what I realized was

actually this idea of discriminatory

design is a global

phenomenon I found single occupancy

benches in

Helsinki um I came across caged

benches in

France and I

think the most poignant example for me

has been the metered

bench where you actually have to pay to

sit down otherwise the spikes won't go

down

all right so single

occupancy

caged and the spike to metered bench

right and so you know this was created

by a German artist to actually get us

thinking about this issue of the

privatization of public life but it's

actually been taken up by cities in a

number of places in the world to

actually deter what they consider bench

hogging

one US Government rep said with respect

to loiters at bus

stops they're not our customers and our

customers come

first and I think this statement

actually captures the ethos of many

policies that govern public life where

we the customer not we the people come

first I think at the heart of

discriminatory design is this idea that

we can create technological fixes for

social

crises whether the crisis have to do

with housing or Health Care Public

Safety or

education rather than dealing with the

underlying conditions we create

short-term responses that often get the

issue out of sight out of

mind and these respons too often locate

the problem inside kinds of

people like the so-called loer rather

than deal squarely with the political

and economic conditions that create the

need to sleep on a park bench in the

first

place so if we think broadly with this

idea of discriminatory

design just as a park bench reflects

particular social

values so too is the lab bench and

medical research imbued with a range of

values so with respect to the

biotechnology re Revolution the kinds of

questions that researchers

ask where they go looking for the

answers and who they consult along the

way are all crucial for us to consider

another way to think about this is that

is to ask whose voices are

missing at the lab

bench as important decisions are being

made because I think without careful

consideration of this we really risk

reproducing existing social inequalities

whether it has to do with race or gender

class disability

nationality we unw wittingly design it

into new

biotechnologies and so what I want to

suggest to you is that the customer is

not always

right that is to say that the interests

and the concerns of the most affluent

among us should not

unduly govern the decisions that affect

everyone in fact I would say that we

have to act ly seek the input of those

who are potentially harmed by new

biotechnologies and so with that what I

want to do now is just switch gears a

little bit and Share three stories of

discriminatory design with you as a way

for us to begin to think about how we

might design

differently the first story is about a

young woman named

Siobhan now Siobhan was 28 years old at

the time that she uh responded to an ad

in her local paper for African-American

egg

donors and when she got to the

infertility Clinic what she what she

said was that among all those gathered

she she was the only one that seemed to

be asking a lot of questions and this

seemed to annoy the clinic

staff even so she decided to undergo the

procedure and eventually the the

receiving coup decided that they no

longer needed her eggs and it's at this

point that the clinic staff asked her

whether she would like to donate them to

stem cell research and she agreed to do

it and it's at this point that her story

takes a turn for the worst because the

drugs needed to stimulate her ovaries

create made them swell as the ex-ray

shows she uh got a condition called

ovarian hypers stimulation syndrome

which is actually very

common she accured huge medical bills

that took over a year and a half to

repay her own fertility was compromised

in the

process in 2008 she became pregnant and

miscarried so Siobhan's contribution to

stem cell research stands uneasily

against her experience as a

patient even so if we look carefully at

each part of the story it would be very

hard to pinpoint one person or one thing

to

blame that is the scientific Boogeyman

of old are not what we're talking about

when we're talking about discriminatory

design and if that's what we're looking

for we'll Overlook the very subtle ways

in which it's built into the everyday

architecture of work a day medicine and

Science and so if we think back to the

questions that Siobhan was asking when

she first got to the clinic we'll see

that it's actually through the design of

this clinical and research encounter

that makes her experience take a turn

for the

worse had the Siobhan of the world been

consulted it's likely that the

medication that is routinely used to

stimulate ovaries in this way would be

more efficacious or not used at all

right and so we have to think about

what's prioritized as of now there is no

mandate to keep track of the short and

long-term health of egged

donors so we can't even tell a young

woman when she comes to the

clinic with much confidence what the

likelihood of particular things happen

happening because no one is keeping

track no one is forced to keep

track so now let's move to the second

story of discriminatory design which

takes us to the field of

Neuroscience and here we find a growing

interest in studying

impulsivity and using brain scans to

study impulsivity like many

well-intentioned scientists who want to

use their training to address a problem

we see this happen

but if you recall there are many ways to

approach a problem right and too often

the approach is to locate it inside

problem

people and so in this case we have a

group a team of researchers who are

studying impulsivity among those who are

incarcerated and what they say is that

parole boards are faced with difficult

decisions every day and they have to do

a kind of risk assessment and try TR to

determine if someone is likely to commit

a crime again and so what this team says

is that what if we could predict it

right a kind of Minority Report 2.0 yeah

in response though there are a number of

scientists who question this right who

are saying that in

fact the use of brain scans in this way

uh is already targeting uh a already

subordinate population and so when I

heard this I thought impulsivity you

know not educational or employment

opportunities not family or housing

support as a predictor of whether

someone will commit a crime again right

brain sceds so while we're going around

scanning people why don't we set up

these scans up and down Wall Street you

know so like when Bankers are coming to

get their coffee on their lunch we can

figure out their rate of impulsivity

right it's not far-fetched to think that

poor decisions and financial crimes

right that were uh behind the global

economic crisis that have led to many

people being homeless had something to

do with

impulsivity but that's not the

population who's targeted that's not

where we train the scientific gaze

that's not the demographic who we locate

the problem in right and so we have to

think about even the definition of

pathology where we think the Menace to

Society is because there are many def de

demographics that avoid that label so we

think specifically about the Collision

of Neuroscience and criminology what we

know what we know is that many black and

Latino youth already face a version of

Minority Report when they wake up in the

morning and walk through their

day there's already assumption that they

have done something

wrong so add to this this line of

research in neuroscience and what you

have is the veneer of scientific

legitimacy layered on to already

existing prejudices and policing

profiling policies

right the third example of

discriminatory

design takes us to the field of

genetics in the aftermath of the New

Town Connecticut massacre and the close

to 100 school shootings since New Town

what we have is growing interest in

trying to understand the the genetics of

violence right looking for the reason

for these events in the DNA of mass

Killers so genotyping the shooter in

this

case right trying to find the reason in

the

person again well intentioned because

the idea is if we could predict whether

someone was going to do this look how

many lives we could

save look how many lives we could save

but in response there are many who

shudder in the scientific Community not

only because the science itself is

dubious that it's inconceivable really

that you would find similarities across

all these individuals but even

researchers speaking back to this

particular work say that it potentially

violates a number of personal Liberties

and that one Harvard geneticist says it

says more about us that we wish there

was something inside of these people to

explain it right it says something about

us and partly what it

says is that we haven't yet been will

willing to deal with the social and

political climate in which this is

happening and one element of that

environment is the

proliferation and accessibility of

firearms that we have

101 guns to every 100 people in this

country that there are over 30,000

firearm deaths every

year right and so what's key for us to

think about is not only does this line

of research potentially stigmatize

people who are mentally

ill who then we begin to think are all

potentially Mass murderers but it does

something even

bigger to those who avoid the

stigmatization it forces our view away

from the social and environmental

effects that that that impact all of us

right with dealing with this wider

environmental issues right and so as we

begin to think about how we might design

differently I think it's fitting that we

find ourselves in this

city right which has a rich and complex

history and one of the reasons is it was

home to someone who many consider as the

mother of modern medicine yeah Miss

Henrietta

LAX yeah and so let me briefly recap

Miss lax's story so that we can move our

thinking

along she was 31 years years old at the

time that she came to John's Hopkins

hospital because she had a cervical

tumor in

1951 and as she became more and more ill

and she went through radiation treatment

researchers took samples from her

cervix and they were astonished to find

that unlike cells they had been working

with before this was the first time that

they were able to actually have the

cells live indefinite ly in the

lab that is we call them

Immortal yeah and the reason why that

was so significant is because now they

could do research on a host of things

that they weren't able to do before

right on cancer on HIV hila cells hila

for Henrietta LAX were the basis of the

vaccine for

polio uh it was created a huge cell

Factory uh the first time cells could be

manufactured on an industrial scale

right sent to Labs all over the world

even sent into space so that we could

study the effects right and so while

miss LAX was buried in a you Family

Cemetery without a

tombstone her cells are

legendary there's almost no one you can

find in the Life Sciences who doesn't

know of them or hasn't work with them

right and despite the fact that her

story has become well known through a

well a a a a book that uh was a

bestseller on the New York Times list in

2013 German scientists after the book is

out after we realize that the family

didn't know how the cells were being

used for over 22 years this team decided

to publish the G Genome of Henrietta LAX

online for anyone to see for anyone to

download which without consulting the

family once again right so breaching

some privacy expectations and in the

aftermath of this the NIH and John's

Hopkins is actually now working very

closely with the family so much so the

two members of The Lax family sit on a

committee at the NIH so that anyone who

wants to use heila cells in their work

have to go through this committee right

and make sure that it is in line with uh

you know these new norms and

expectations this is just a small step

in designing the lab bench differently

in creating different Norms about who we

expect to be at the table and not just

on the table of medical research and so

as we move into the future one thing to

keep in mind is that there are multiple

Futures in front of us and where we end

up really is going to be shaped by who

we are Consulting who is participating

who is thought important to get us there

right it's very

possible if we only leave it to

technical experts that we will have a

future that is more unequal than our

present

right and this is really not just a

matter of some people moving ahead and

some people being left behind this is

about the very definition of progress

being questioned right because many

depictions of the future are one in

which we see a whitewashed reality a

sterile reality an artificially perfect

reality right in place of idealizing

sterility what I want to suggest is that

we work towards

sociality that we get our hands dirty in

trying to create a material and social

world that includes

everyone so coming full

circle the person who created this last

bench was inspired by the bahai n

pointed

star and what it does is it gives us a

glimpse into how we might reorient

ourselves towards our environment and

towards one another where we

incorporate the insights and the

experiences of people who see the world

from many different

angles with this model

I think that we can

redesign the lab bench

together thank

[Applause]

you