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Using Geographic Legacies to Cure Disease | Rebecca Richards Steed | TEDxSaltLakeCity


[Applause]

[Applause] so a few years ago I found myself

so a few years ago I found myself

so a few years ago I found myself sitting in a genetic counselors office

sitting in a genetic counselors office

sitting in a genetic counselors office helping a researcher diagram this

helping a researcher diagram this

helping a researcher diagram this beautiful little pedigree chart of my

beautiful little pedigree chart of my

beautiful little pedigree chart of my family and the misfortune and misery of

family and the misfortune and misery of

family and the misfortune and misery of the numerous cancer diagnoses that we

the numerous cancer diagnoses that we

the numerous cancer diagnoses that we had endured I had cancer and two years

had endured I had cancer and two years

had endured I had cancer and two years prior if I don’t cry my youngest brother

prior if I don’t cry my youngest brother

prior if I don’t cry my youngest brother died from cancer at age 23 and weeks

died from cancer at age 23 and weeks

died from cancer at age 23 and weeks before my diagnosis my uncle and my

before my diagnosis my uncle and my

before my diagnosis my uncle and my cousin’s little boy were both diagnosed

cousin’s little boy were both diagnosed

cousin’s little boy were both diagnosed with cancer I had just had a baby of

with cancer I had just had a baby of

with cancer I had just had a baby of course and I worried that I had just

course and I worried that I had just

course and I worried that I had just created this new beautiful little life

created this new beautiful little life

created this new beautiful little life that would one day have to face the fear

that would one day have to face the fear

that would one day have to face the fear and the pain of a cancer diagnosis of

and the pain of a cancer diagnosis of

and the pain of a cancer diagnosis of herself and at the time it seemed

herself and at the time it seemed

herself and at the time it seemed evident that my family had some kind of

evident that my family had some kind of

evident that my family had some kind of genetic condition or a predisposition

genetic condition or a predisposition

genetic condition or a predisposition for this disease and so I went to see

for this disease and so I went to see

for this disease and so I went to see this genetic counselor in hopes of

this genetic counselor in hopes of

this genetic counselor in hopes of gaining some insight understanding some

gaining some insight understanding some

gaining some insight understanding some answers possibly but also I was hoping

answers possibly but also I was hoping

answers possibly but also I was hoping that maybe my family’s experience could

that maybe my family’s experience could

that maybe my family’s experience could contribute to the understanding of this

contribute to the understanding of this

contribute to the understanding of this familial disease pattern and so as this

familial disease pattern and so as this

familial disease pattern and so as this researcher finished up this lovely

researcher finished up this lovely

researcher finished up this lovely little hand-drawn diagram of my pedigree

little hand-drawn diagram of my pedigree

little hand-drawn diagram of my pedigree chart the genetic counselor came in and

chart the genetic counselor came in and

chart the genetic counselor came in and he carefully looked at this chart and he

he carefully looked at this chart and he

he carefully looked at this chart and he was really quiet and you know that

was really quiet and you know that

was really quiet and you know that moment in the movies where it’s like the

moment in the movies where it’s like the

moment in the movies where it’s like the drum roll this is a dramatic moment you

drum roll this is a dramatic moment you

drum roll this is a dramatic moment you know that something big is about to

know that something big is about to

know that something big is about to happen and so I was really nervous

happen and so I was really nervous

happen and so I was really nervous and I thought okay prepare myself for

and I thought okay prepare myself for

and I thought okay prepare myself for this horrible answer and light more life

this horrible answer and light more life

this horrible answer and light more life changes that’s not exactly what happened

the counselor the only words that came

the counselor the only words that came out of his mouth where science can’t

out of his mouth where science can’t

out of his mouth where science can’t prove that your cancers are related at

prove that your cancers are related at

prove that your cancers are related at this time but make sure to come back

this time but make sure to come back

this time but make sure to come back when someone else and your family’s

when someone else and your family’s

when someone else and your family’s diagnosed with cancer and we’ll

diagnosed with cancer and we’ll

diagnosed with cancer and we’ll reevaluate your case okay okay okay I

reevaluate your case okay okay okay I

reevaluate your case okay okay okay I was stunned I was left in this

was stunned I was left in this

was stunned I was left in this counselor’s office with a box of tissues

counselor’s office with a box of tissues

counselor’s office with a box of tissues I was angry I experienced cognitive

I was angry I experienced cognitive

I was angry I experienced cognitive dissonance at its finest I did not

dissonance at its finest I did not

dissonance at its finest I did not believe this scientist that was supposed

believe this scientist that was supposed

believe this scientist that was supposed to have answers for me didn’t have

to have answers for me didn’t have

to have answers for me didn’t have answers but I am NOT a geneticist and so

answers but I am NOT a geneticist and so

answers but I am NOT a geneticist and so I remember going home that day very

I remember going home that day very

I remember going home that day very clearly and crying a lot and I did what

clearly and crying a lot and I did what

clearly and crying a lot and I did what I think most of us here do when we have

I think most of us here do when we have

I think most of us here do when we have these big questions and the answers that

these big questions and the answers that

these big questions and the answers that we are given are less than sufficient I

we are given are less than sufficient I

we are given are less than sufficient I fell back on what I knew I fell back on

fell back on what I knew I fell back on

fell back on what I knew I fell back on what I could understand I’m a geographer

what I could understand I’m a geographer

what I could understand I’m a geographer I have a background in anthropology and

I have a background in anthropology and

I have a background in anthropology and when my brother had died I dug into the

when my brother had died I dug into the

when my brother had died I dug into the literature I dug into the research to

literature I dug into the research to

literature I dug into the research to understand his disease and I found this

understand his disease and I found this

understand his disease and I found this geographic component environmental

geographic component environmental

geographic component environmental pollution exposure that could have

pollution exposure that could have

pollution exposure that could have potentially caused his disease and then

potentially caused his disease and then

potentially caused his disease and then his death but in my immediate family

his death but in my immediate family

his death but in my immediate family situation I couldn’t draw on what I knew

situation I couldn’t draw on what I knew

situation I couldn’t draw on what I knew me my uncle and my cousin’s little boy

me my uncle and my cousin’s little boy

me my uncle and my cousin’s little boy each of us had

each of us had

each of us had very different cancers none of which

very different cancers none of which

very different cancers none of which were brain cancer and in addition to

were brain cancer and in addition to

were brain cancer and in addition to that we had never lived anywhere near

that we had never lived anywhere near

that we had never lived anywhere near each other to experience a shared

each other to experience a shared

each other to experience a shared environmental pollution exposure and so

environmental pollution exposure and so

environmental pollution exposure and so I had to grapple with the really

I had to grapple with the really

I had to grapple with the really difficult idea that I was not seeing a

difficult idea that I was not seeing a

difficult idea that I was not seeing a familial disease pattern I was living

familial disease pattern I was living

familial disease pattern I was living some horrible random chance it did not

some horrible random chance it did not

some horrible random chance it did not sit well with me and so I did what I do

sit well with me and so I did what I do

sit well with me and so I did what I do I dug back into the research and I was

I dug back into the research and I was

I dug back into the research and I was heartened when I came across the works

heartened when I came across the works

heartened when I came across the works of a doctor Michael Skinner at

of a doctor Michael Skinner at

of a doctor Michael Skinner at Washington State University dr. Skinner

Washington State University dr. Skinner

Washington State University dr. Skinner studies how our genes interact with our

studies how our genes interact with our

studies how our genes interact with our environment dr. Skinner and scientists

environment dr. Skinner and scientists

environment dr. Skinner and scientists like him have found that indeed our

like him have found that indeed our

like him have found that indeed our genes based off of some environmental

genes based off of some environmental

genes based off of some environmental signal can switch on or off so to speak

signal can switch on or off so to speak

signal can switch on or off so to speak and under the right conditions

and under the right conditions

and under the right conditions if this exposure occurs before you have

if this exposure occurs before you have

if this exposure occurs before you have children there is a potential that you

children there is a potential that you

children there is a potential that you can pass that on through your genes to

can pass that on through your genes to

can pass that on through your genes to your kids and this includes disease let

your kids and this includes disease let

your kids and this includes disease let me give you one Geographic example that

me give you one Geographic example that

me give you one Geographic example that I think will help clarify what I’m

I think will help clarify what I’m

I think will help clarify what I’m saying here so in 1982 amazing

saying here so in 1982 amazing

saying here so in 1982 amazing scientists dr. Lars Olav bigram and a

scientists dr. Lars Olav bigram and a

scientists dr. Lars Olav bigram and a dr. Marcus Pembrey studied this small

dr. Marcus Pembrey studied this small

dr. Marcus Pembrey studied this small and remote village in Sweden that

and remote village in Sweden that

and remote village in Sweden that through the 19th century was known for

through the 19th century was known for

through the 19th century was known for going through severe feast and famine

going through severe feast and famine

going through severe feast and famine food conditions now the amazing thing

food conditions now the amazing thing

food conditions now the amazing thing about this little village in Sweden is

about this little village in Sweden is

about this little village in Sweden is that they kept meticulous records they

that they kept meticulous records they

that they kept meticulous records they were excellent record keepers they even

were excellent record keepers they even

were excellent record keepers they even recorded how much food was available for

recorded how much food was available for

recorded how much food was available for families through these times and so what

families through these times and so what

families through these times and so what these two scientists did after they had

these two scientists did after they had

these two scientists did after they had acquired their information they tracked

acquired their information they tracked

acquired their information they tracked down the descendents which were the

down the descendents which were the

down the descendents which were the grandchildren of those that live

grandchildren of those that live

grandchildren of those that live in this village and they compared the

in this village and they compared the

in this village and they compared the health and longevity of these grandkids

health and longevity of these grandkids

health and longevity of these grandkids to the food availability of their

to the food availability of their

to the food availability of their grandparents that lived in this village

grandparents that lived in this village

grandparents that lived in this village through these feast and famine times and

through these feast and famine times and

through these feast and famine times and what they found was remarkable it wasn’t

what they found was remarkable it wasn’t

what they found was remarkable it wasn’t magic but it was remarkable they could

magic but it was remarkable they could

magic but it was remarkable they could find a direct association a strong

find a direct association a strong

find a direct association a strong correlation between the amount of food

correlation between the amount of food

correlation between the amount of food their grandparents were able to consume

their grandparents were able to consume

their grandparents were able to consume before adolescence specifically

before adolescence specifically

before adolescence specifically grandparents that experienced more

grandparents that experienced more

grandparents that experienced more famine conditions before adolescents

famine conditions before adolescents

famine conditions before adolescents passed down genes that allowed their

passed down genes that allowed their

passed down genes that allowed their grandchildren to live longer healthier

grandchildren to live longer healthier

grandchildren to live longer healthier lives

lives

lives famine longer healthier lives okay

grandparents that feasted that had more

grandparents that feasted that had more food available to them actually had

food available to them actually had

food available to them actually had grandkids that lived shorter less

grandkids that lived shorter less

grandkids that lived shorter less healthy lives for me the light bulb had

healthy lives for me the light bulb had

healthy lives for me the light bulb had turned on and we know now that this is

turned on and we know now that this is

turned on and we know now that this is something called epigenetics we know

something called epigenetics we know

something called epigenetics we know that we have the ability that our genes

that we have the ability that our genes

that we have the ability that our genes have the ability to switch on and off

have the ability to switch on and off

have the ability to switch on and off based off of environmental exposures and

based off of environmental exposures and

based off of environmental exposures and that is what was being witnessed in this

that is what was being witnessed in this

that is what was being witnessed in this village for me for my family situation

village for me for my family situation

village for me for my family situation the light bulb had turned on and I had

the light bulb had turned on and I had

the light bulb had turned on and I had to ask myself okay having this new

to ask myself okay having this new

to ask myself okay having this new information even if it was just for me

information even if it was just for me

information even if it was just for me to cope with the situation if I could

to cope with the situation if I could

to cope with the situation if I could map my ancestors over space and time all

map my ancestors over space and time all

map my ancestors over space and time all the way down to me I could potentially

the way down to me I could potentially

the way down to me I could potentially deduce an environmental exposure that

deduce an environmental exposure that

deduce an environmental exposure that has caused my current familial disease

has caused my current familial disease

has caused my current familial disease pattern of cancer and this is something

pattern of cancer and this is something

pattern of cancer and this is something that I’m calling Geographic legacy and

that I’m calling Geographic legacy and

that I’m calling Geographic legacy and so today I am a PhD

so today I am a PhD

so today I am a PhD student in medical geography and that is

student in medical geography and that is

student in medical geography and that is a real thing not kidding and I take the

a real thing not kidding and I take the

a real thing not kidding and I take the datasets of historic environmental data

datasets of historic environmental data

datasets of historic environmental data and I combined that data with family

and I combined that data with family

and I combined that data with family pedigree data from the Utah population

pedigree data from the Utah population

pedigree data from the Utah population database housed at the Huntsman Cancer

database housed at the Huntsman Cancer

database housed at the Huntsman Cancer Research Institute I bring these pieces

Research Institute I bring these pieces

Research Institute I bring these pieces of information together and I recreate

of information together and I recreate

of information together and I recreate Geographic legacies of families in hopes

Geographic legacies of families in hopes

Geographic legacies of families in hopes of finding some association between

of finding some association between

of finding some association between these environmental exposures and our

these environmental exposures and our

these environmental exposures and our disease outcomes and families and so it

disease outcomes and families and so it

disease outcomes and families and so it is my hope that Geographic legacies

is my hope that Geographic legacies

is my hope that Geographic legacies become commonplace in our medical

become commonplace in our medical

become commonplace in our medical research but it is my dream that

research but it is my dream that

research but it is my dream that Geographic legacies become commonplace

Geographic legacies become commonplace

Geographic legacies become commonplace for all of us but for familial disease

for all of us but for familial disease

for all of us but for familial disease research so I know you’re all on the

research so I know you’re all on the

research so I know you’re all on the edge of your seats I want you to know

edge of your seats I want you to know

edge of your seats I want you to know that I’m cancer-free today thank you

my little girl turned eight just a

my little girl turned eight just a couple days ago and she’s healthy and

couple days ago and she’s healthy and

couple days ago and she’s healthy and happy but my uncle who suffers from

happy but my uncle who suffers from

happy but my uncle who suffers from multiple myeloma even today he is one of

multiple myeloma even today he is one of

multiple myeloma even today he is one of the longest living survivors of his

the longest living survivors of his

the longest living survivors of his cancer and so he is continually being

cancer and so he is continually being

cancer and so he is continually being studied for his longevity and my cousin

studied for his longevity and my cousin

studied for his longevity and my cousin who was just a little boy at the time of

who was just a little boy at the time of

who was just a little boy at the time of his diagnosis is here today in the

his diagnosis is here today in the

his diagnosis is here today in the audience and he is a teenager now and

audience and he is a teenager now and

audience and he is a teenager now and he’s healthy as well

he’s healthy as well

he’s healthy as well [Applause]

”

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