[Applause]
they call her the mother mount of
Medicine such a big title for a mother
wife granddaughter friend but to our
family
she’s just Henny I’m Veronica Robinson
healthcare advocate granddaughter of
Lawrence Lakes and I’m David let’s not
so many titles of ironic because I’m
good but I’m also the grandchild of
Henrietta Lacks and for many of you who
may not know the story in 1951 Johns
Hopkins was looking for a way to have
human cells is this outside the human
body and it were taking samples from
anybody who would come to the hospital
but after a week or so all themselves
would die at the same time Henrietta had
noticed a lump in her service and she
had went to Johns Hopkins to be treated
John Hawkins would wonder a few
hospitals that would treat African
Americans back then when she went to
John Hopkins
they took our sample her cells our hair
cells did something that no cells are
dead before they thrive they survived
they multiply and they lived
indefinitely this led to doctors having
a standard cell the test occurs in
medication or in single cell which led
to countless discoveries well the
consequences of past medical mistrust
has become our cultural mistrust causing
us to be uncertain about receiving
treatment
I remember in our family there were so
many stories about going to the
caregiver like if you went to John
Hopkins you remember some of those
stories oh yes our grandfather will tell
us they’re dumb don’t walk past John I
was at night this can I chew out the
gram and do this firmness and the other
thing you know that led to a think I was
like the guy gave us some mistrust was
when they took the sales in 1951 it
would be 20 long years before the family
would even know of him we had a sale
resistance again this is also foster
error of mistrust and fear how do we
take back our stories how do we bridge
the gap for those fears there
where do we go from here we are no
longer the conversation on the table we
now sit at the table to advocate for
people who look like ourselves you know
we think that healthcare has come such a
long way from the times where people
were mistreated or the Tuskegee syphilis
study or Thomas Jefferson and smallpox
Henrietta Lacks but in 2013 something
happens yes when you sequence a cell
you’re essentially getting the blueprint
of the body and so a sequence Henrietta
cell again without notifying the family
or even making us aware of it we like
here we go again the same history is
repeating itself but this time he did
something that they didn’t do last time
they removed the sequence and dr.
Francis Collins the top man at the NIH
along with his own genetic counselor
came and sat down with the last family
and dr. Collins and he’s explained to us
the human genome is blue from their body
each of us have our genome and it makes
us different and then he listed like
certain sequences that humans have he
would like this sequence that Henrietta
has right here means she can absorb
caffeine very well this sequence right
here means that she has like a human her
green eyes
and then he liked this sequence right
here it means she’s resistant to
baldness I’m like but it has falsely the
first time that the medical community
had reached out to the patients what can
we do to change the narrative because
we’ve also we’ve been in a era of fear
mistrust so he’s like okay let’s see
what happens that we could work with the
NIH what would happen because there’s a
famine X family member you know mr. Lee
proud of everything that the HeLa cell
has done so we’re hoping that the human
genome would do the same thing of every
other legs so we formed the partnership
NIH excuse me
as well as Johns Hopkins and so many
other communities because it’s important
for us to not only be as a patient on
the table whether you African American
woman in the end what up but we also
need to be at the table so we can make
our decisions be informed but I want to
take it a step farther and say that we
need to also own the table so this will
help Society
that we have over the medical community
because there’s not a person out here
who’s not directly or indirectly it’s
gonna be fat affected by disease if you
want to have a disease itself or you
won’t be taking care of somebody who is
affected by disease and it’s time that
everybody has a voice at the table so as
people families or medical professions
whatever career you’re in how do we
leave the past the past and build a
brighter future advance and
biotechnology and our communities the
communities we live we serve we advocate
in our families within well like David
said in order to make an informed
decision we have to be educated you have
to receive as much education much
knowledge as possible
and take it back to your families to
your community so that they too can make
a great decision well basically I say we
always have somebody that goes to the
doctor because like I said when you come
and you’re in a weakened state you need
somebody to advocate for you somebody go
with you so you’ll make an informed
decision you don’t want to make a
decision out of fear or rush because I’m
sick I need somebody to take care of me
we need researchers we need the medical
community we need to allow allowable
them so often you know we don’t realize
how these topics of research come up
often in our families I know it comes up
often in my family and not just because
of my great grandmother I remember going
to the envier receiving my permit for
the first time after all this happens
and my family and my grandfather’s like
hey if you pass your permit I went with
my cousin Josh F both of you if you guys
passed your permit whoever passes I’ll
pay for your permit and we’re both like
okay my grandfather don’t like spending
money so he didn’t expect us to both get
our permit and we both passed so they
called josh number first and then they
immediately called mine and he came he
saw the lady I’ll pay for my
granddaughter said I’d do my grandson
and it was the first time since
everything happened with my
great-grandmother that I was faced with
that question she said would you like to
be a donor
and I sit there and I had to think but
now I’m educated so I can make a great
decision right so I was eager to tell
her yes and she was excited she’s like
okay well you’ll have to take in donate
a dollar to get it on your ID and that’s
such a great thing and my grandfather
comes back over and she tells him how
much mine’s cost and he’s like why is
hers a dollar more than he is is it
because she’s a girl and she said no
your granddaughter she’s going to be a
donor and he said girl you can give them
my dollar and your stuff too so when
those conversations come up in your
families and you began to sit there and
you think about what it is to be a
participant in research you have to
remember that in order for us to go
further like the HeLa cells advancing
science biotechnology by 60 plus years
we want to advance it further it’s
definitely important to continue those
conversations because our stories are
your stories thank you guys anyone who
playing the story thank you [Music]
they call her the mother mount of
Medicine such a big title for a mother
wife granddaughter friend but to our
family
she’s just Henny I’m Veronica Robinson
healthcare advocate granddaughter of
Lawrence Lakes and I’m David let’s not
so many titles of ironic because I’m
good but I’m also the grandchild of
Henrietta Lacks and for many of you who
may not know the story in 1951 Johns
Hopkins was looking for a way to have
human cells is this outside the human
body and it were taking samples from
anybody who would come to the hospital
but after a week or so all themselves
would die at the same time Henrietta had
noticed a lump in her service and she
had went to Johns Hopkins to be treated
John Hawkins would wonder a few
hospitals that would treat African
Americans back then when she went to
John Hopkins
they took our sample her cells our hair
cells did something that no cells are
dead before they thrive they survived
they multiply and they lived
indefinitely this led to doctors having
a standard cell the test occurs in
medication or in single cell which led
to countless discoveries well the
consequences of past medical mistrust
has become our cultural mistrust causing
us to be uncertain about receiving
treatment
I remember in our family there were so
many stories about going to the
caregiver like if you went to John
Hopkins you remember some of those
stories oh yes our grandfather will tell
us they’re dumb don’t walk past John I
was at night this can I chew out the
gram and do this firmness and the other
thing you know that led to a think I was
like the guy gave us some mistrust was
when they took the sales in 1951 it
would be 20 long years before the family
would even know of him we had a sale
resistance again this is also foster
error of mistrust and fear how do we
take back our stories how do we bridge
the gap for those fears there
where do we go from here we are no
longer the conversation on the table we
now sit at the table to advocate for
people who look like ourselves you know
we think that healthcare has come such a
long way from the times where people
were mistreated or the Tuskegee syphilis
study or Thomas Jefferson and smallpox
Henrietta Lacks but in 2013 something
happens yes when you sequence a cell
you’re essentially getting the blueprint
of the body and so a sequence Henrietta
cell again without notifying the family
or even making us aware of it we like
here we go again the same history is
repeating itself but this time he did
something that they didn’t do last time
they removed the sequence and dr.
Francis Collins the top man at the NIH
along with his own genetic counselor
came and sat down with the last family
and dr. Collins and he’s explained to us
the human genome is blue from their body
each of us have our genome and it makes
us different and then he listed like
certain sequences that humans have he
would like this sequence that Henrietta
has right here means she can absorb
caffeine very well this sequence right
here means that she has like a human her
green eyes
and then he liked this sequence right
here it means she’s resistant to
baldness I’m like but it has falsely the
first time that the medical community
had reached out to the patients what can
we do to change the narrative because
we’ve also we’ve been in a era of fear
mistrust so he’s like okay let’s see
what happens that we could work with the
NIH what would happen because there’s a
famine X family member you know mr. Lee
proud of everything that the HeLa cell
has done so we’re hoping that the human
genome would do the same thing of every
other legs so we formed the partnership
NIH excuse me
as well as Johns Hopkins and so many
other communities because it’s important
for us to not only be as a patient on
the table whether you African American
woman in the end what up but we also
need to be at the table so we can make
our decisions be informed but I want to
take it a step farther and say that we
need to also own the table so this will
help Society
that we have over the medical community
because there’s not a person out here
who’s not directly or indirectly it’s
gonna be fat affected by disease if you
want to have a disease itself or you
won’t be taking care of somebody who is
affected by disease and it’s time that
everybody has a voice at the table so as
people families or medical professions
whatever career you’re in how do we
leave the past the past and build a
brighter future advance and
biotechnology and our communities the
communities we live we serve we advocate
in our families within well like David
said in order to make an informed
decision we have to be educated you have
to receive as much education much
knowledge as possible
and take it back to your families to
your community so that they too can make
a great decision well basically I say we
always have somebody that goes to the
doctor because like I said when you come
and you’re in a weakened state you need
somebody to advocate for you somebody go
with you so you’ll make an informed
decision you don’t want to make a
decision out of fear or rush because I’m
sick I need somebody to take care of me
we need researchers we need the medical
community we need to allow allowable
them so often you know we don’t realize
how these topics of research come up
often in our families I know it comes up
often in my family and not just because
of my great grandmother I remember going
to the envier receiving my permit for
the first time after all this happens
and my family and my grandfather’s like
hey if you pass your permit I went with
my cousin Josh F both of you if you guys
passed your permit whoever passes I’ll
pay for your permit and we’re both like
okay my grandfather don’t like spending
money so he didn’t expect us to both get
our permit and we both passed so they
called josh number first and then they
immediately called mine and he came he
saw the lady I’ll pay for my
granddaughter said I’d do my grandson
and it was the first time since
everything happened with my
great-grandmother that I was faced with
that question she said would you like to
be a donor
and I sit there and I had to think but
now I’m educated so I can make a great
decision right so I was eager to tell
her yes and she was excited she’s like
okay well you’ll have to take in donate
a dollar to get it on your ID and that’s
such a great thing and my grandfather
comes back over and she tells him how
much mine’s cost and he’s like why is
hers a dollar more than he is is it
because she’s a girl and she said no
your granddaughter she’s going to be a
donor and he said girl you can give them
my dollar and your stuff too so when
those conversations come up in your
families and you began to sit there and
you think about what it is to be a
participant in research you have to
remember that in order for us to go
further like the HeLa cells advancing
science biotechnology by 60 plus years
we want to advance it further it’s
definitely important to continue those
conversations because our stories are
your stories thank you guys anyone who
playing the story thank you [Music]
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