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How Much Are Your Genes Worth? | Velislava Petrova | TEDxLancasterU


can I ask you to just to look around you
can you look at the person next to you
look at me we are amazing aren’t we each
one of us is made of 37 trillion cells
if not more in each one of those cells
is few micrometers in size but actually
holds around 3 meters of a thread that
holds a set of instructions in these set
of instructions tell each one of our
cell where to go who to interact with
who not to interact with how to behave
and very often how long to live and all
of these set of instructions are
actually encoded in only four letters a
GT and C four letters that come in
different combinations unique for every
single one of them that we are born with
and live for the rest of our lives
think of it as a genetic barcode that we
each one
one of us has and every cell of our body
be it a skin cell or kidney cell or a
liver cell has exactly the same barcode
but that’s completely different thing
following complete different types of
these instructions that are encoded it’s
a piece of thread and all the this
barcode that each one of us has is
called a genome and this thread that
holds it it’s the DNA even for me as a
scientist this whole idea of us starting
from a single cell that is able to have
all the information needed to create an
entire body able to move talk smile from
and live with it with allow us to live
with it for the rest of our life has
always been very fascinating and decided
how does it actually happen exactly the
same question relate to one of the
biggest scientific collaborations in
biology driven by the curiosity of
scientists trying to understand how this
the string of different letters allows
us to perform different function most
specifically they were interested in
reading everything or
in our piece of string every single
letter in our genome and all of these
letters are 3.2 billion letters that
make us who we are quite a challenging
an interesting question you have to
agree in fact in order to perform this
study it took the collaborative effort
of thousands of scientists in more than
20 Institute in six countries around the
world this project called the human
genome project was took around 13 years
to complete and cost around 3 billion
pounds and it’s one of the few projects
actually was completed before it was
scheduled and what this told us is that
by collaborating and such a great scale
we can actually derive information about
how the way we were born and the way we
are able to live our lives but more
importantly this Human Genome Project
opened the doors to entirely new field
the field of genomics now we are a lot
better at reading genomes in fact at the
moment we are able to read thousand
genomes and we’ve had also 10,000
genomes and the most recently we
actually have the ten a hundred thousand
genome project in the technology that
enables us to actually read the genomes
has also transformed from these benchtop
versions that take an entire big room
lab require very elaborate lab facility
and very skilled stuff that can has to
work on it in order to read human
genomes – this version of it that takes
the space of my pocket and only by
loading your part of your DNA here and
waiting for around an hour you can get a
life readout of your genome and after
you’ve read it you can put his mistake
and take you back into your pocket so
you have to agree that reading genomes
is no longer a challenge and it seems
that is a task that is becoming easier
and easier to perform as of last year
we’ve had around 5 million G
sequence and these changes to the with
the projection expecting that by 2020
this figure will will change to 200
million genomes and even if you don’t
have the kind of little and very techie
device that I just showed you it’s very
easy to just spit in a tube and send it
to a company just the one shown here
23andme on many other companies that
provide a similar genetic testing and to
give you some form of important
information about you as how likely to
be addicted to caffeine or to smoking
some information about your hive write
about your ancestry or about your eye
color all of these piece of important
information that maybe you didn’t
realize you wanted to know but you tell
you about or if it’s not about you it
could be about your pet because this
could also be done for your pet but in
order before we actually start
sequencing everyone around it’s it’s
important to start thinking of what is
actually the information hidden within
our genome and what we could use it for
so using information about your genome
can have a huge impact on research as in
these cases where we could try to map
the different differences in our genome
in our genetic barcode how likely are to
get a certain disease or not and in this
case if you have more of the letter C
you’re more likely to be in the category
of people who have heart disease than
those who don’t have the letter C and
the same approach has been applied to
multiple other diseases like Alzheimer’s
celiac disease schizophrenia even breast
cancer and mind you that no genetic test
can tell you whether you would
definitely get a disease or not it’s
never a guarantee but it’s an estimate
of the risk that you might have
depending on your genetics that with
interaction of the environments you live
in might put you at greater risk
relative to others at having a certain
disease and while knowing this doesn’t
have to necessarily save your life it
can lead to lifestyle changes that can
increase your transfer
like in the case of Angelina Jolie and
if you’re one of those who thought that
it’s just an advertising campaign I’ll
just put her situation in today’s
perspective to you if someone told you
that by entering into this plane you
have 80% higher chance to die that the
passenger next to you would you get in
the plane I personally wouldn’t but if
we go back from Hollywood to our story
here now the ability to link genes to
diseases and then to lifestyle changes
actually can have a huge impact on
health care as we will rise of
personalized medicine and personalized
medicine is this ability to make
decisions about your health based on
your own genetic barcode a completely
personalized therapy and indeed
companies like this one california-based
human longevity one have already
capitalized on this by sequencing your
genome and performing a range of other
tests in order to design a specific
healthcare profile for you then the
follow-up for up to two years that
allows you to have a monitoring of every
single stage of development of disease
or a way to predict development of
disease only in return of $25,000 which
you have to agree to cheaper than most
medical bills in US and if you don’t
want to go all the way to California in
fact you can do this in Europe if you
attend or visit one of those so-called
medical wellness hotel that’s a very
specific to Switzerland where you can
have again your genome sequence or parts
of your genome sequence and instead of
having personalized healthcare you can
actually have a personalized diet
personalized fitness routine and even
personalized skin care but genetics
doesn’t have to be all about health care
and tracking diseases in fact as shown
recently our genes can be useful to
track criminals as with the case with
this Golden State killer who was happily
hiding for more than 40 years committed
more than 50 crimes
and could not be found by the police
until they use his DNA in fact not just
his DNA but the DNA of millions of other
individuals who’ve decided to freely
upload their own genetic information on
a website called ancestry.com and by
tracking people who are related the
level of relatedness they have to him
they could track where he lives
and by identifying the state where he
lives they could find where he was and
let’s catch him but if you’re not a
policeman were for FBI what else can you
use your genome for well you can use
your genome to navigate through the
supermarket space and decide what
product products to add or not to your
grocery list knowing that you might not
like them like in the case of Marmite
your genes apparently can tell you
whether you’d like the taste or not so
if you really dislike it just blame your
genes but in addition to your food
choices something very important to
everyone here I’m sure it’ll be this
your genes can tell you which direction
to swipe on the next dating app like
this dating up here firmer that enables
you to use your genetic information and
genetic information of everyone else who
decided to be part of this app in order
to create perfect matches of people who
are more likely to build a successful
relationship together so you don’t have
to pick your match only by looking at a
picture but also by in their genes so I
ask myself and I guess you ask yourself
if genomics can help us to feel
healthier to eat better to have better
relationships why don’t you all sequence
our genomes why don’t you order our
sequencing kids now in fact maybe some
of you have already started doing that
or at least downloading the Fermor app
but it’s important at this stage to
actually step back and think about once
we now that we know what our genome is
now that we know what information it
carries and how useful it can be who do
you want to share it with does it matter
who we share it with unless you’ve lived
in a cave
over the past month you’ve probably been
flooded with Namur number of emails
telling you about the changes in privacy
policy to websites and lists that you
probably don’t remember you’ve even
subscribed to and all of this was
actually triggered by a single cloud of
data leakage that made people realize
that their clicks are actually worth a
lot more than a life when in the wrong
hands and the same applies to your
genome your genomes worth changes
dramatically
depending on whose hands it is in and
who do we share it with so if we want to
use our genome for research and to
identify diseases it could be extremely
valuable because our ability to map this
relationship between genomes diseases
and lifestyle changes is actually hugely
dependent on the number of people whose
genomes we are able to read it’s a power
of statistic the power of numbers there
where the more people we sequence the
more people we have genome information
from the better we are at being able to
predict what genes and drive disease and
because this relationship between genes
of disease is actually the base of
personalized medicine directly this
influences our ability to have these
personalized plans and you can actually
submit your and donate your genome on
database like this one Personal Genome
Project where your data will be anything
back but your data will be used for
research and you can track where does it
actually go and what kind of research is
it used for
but it sets another question that in
addition to medical care and and
probably research which most of you
might agree could be useful to use your
genome for who else should we share our
genome with should we share it with
insurance companies that can decide on
our insurance plan based on our
predisposition to disease should we
share it with retail companies who can
decide what to advertise to us based on
what are we likely to like or not or
should policemen have the ability to
mine through our genome every time they
have a criminal case interesting
questions
but all of these questions would have an
answer if every one of you decides what
to do with their genome and this ability
to make the decision often is difficult
for people because of not knowing what
they can do with it do you know this
Cambridge based startup company actually
provides some form of solution trying to
bridge the gap between people giving
their in genetic information knowing
what’s useful and what they do is to let
everyone who has any form of genetic
information from any form of kit or test
that they’ve used to upload on their
website and actually track what cut not
only what kind of research context has
been used for but to benefit yes
financially from every time their
research is used their genome is used
for someone’s commercial interest and
that’s when it becomes interesting and
even more interesting or probably a step
further into sci-fi is this new company
that just received 50 million I think
funding to try to introduce blockchain
into all of these genomic transactions
so they want to build something that is
reminiscent of Wall Street of genomics
where you use your 3.2 billion starting
capital of nucleotides or letters and
then you decide what to invest them with
what would be the most profitable
investment what do you get back and
where do you reinvest it genomics is a
billion-dollar industry that is based on
people’s desire to share something
that’s their own and that’s where the
fallacy lies that’s their own you’re not
an owner of your genome in fact you
share huge proportion with it with your
relatives
whether it’s first-degree relatives or
second-degree relatives so any decisions
you make about your genome can actually
impact on their decisions what they want
to know and not know about their genomes
and equally any decisions they make
about their genomes have an impact on
it’s weird a very important stage now to
try to decide what do we do with
this information that we can so easily
get and it can become so affordable to
all of us because the cost of sequencing
a genome had changed from 3 billion
pounds of the human genome project to
just under a thousand pound now so
practically everyone could afford
surgeons they should do it but it’s
important to know that the core
importance of our information can change
dramatically depending on how do we
decide to use it now it’s very easy to
for current misuse to impact on the way
that we do research in the future and to
introduce a form of restrictive
regulation that would prevent the
development of potentially very useful
therapies and in the core of this is
fear
people’s opinion very often swing
between extreme excitement when
something new and sexy comes to extreme
fear and stigma when something sounds
that it’s reaching in some way the
privacy fake news as shown in this
science paper actually spread a lot
faster than any scientific discovery so
it’s a lot easier to for fake news to
reach people for scientific discoveries
and misinterpretation of data have had
huge impact on people’s lives with with
losing people’s lives and actually
injured having stigma and hosting a
shade of doubt and disbelief on entire
fields we should make sure that we don’t
allow for this to happen with genomics
we’re at a stage where we could decide
how our genetic data that we generate
now can be used in the future let’s make
sure that the data that we generate now
makes the best use not only for us but
for others as well because unlike any
other form of personal data here it’s an
extremely complex relationship of shared
privacy shared ownership and very
difficult data protection because unlike
being able to encrypt your conversation
to protect them and put a tape on your
webcam so no one can see you sharing a
genetic data actually happens all the
time just like now so being able to
protect it actually requires a lot more
thought but there’s no time for fear
earth we’re also having the opportunity
that this field is relatively new so the
old legislation at ethical concerns have
to be implemented at the beginning of
every project that involves this kind of
study and our own responsibilities as
people who own at least partially our
genome is that we make sure that we use
it for good and prevent it from misuse
because we might not be the sole owners
of our genome but we’re the guardians of
our genome and the way we decide to use
it now and how proactive aware and
wanting to know more and interested we
are now can actually impact the worth of
our genome not only the worth of our
genome but the worth of the genomes of
everyone else around us so important in
this time where information is so easy
to acquire is not the knowledge but the
illusion of knowledge and we should make
sure that we don’t live in an illusion
of knowledge but stay informed about our
own genome and it’s worth so now that
you know what the worth of your genome
is please make sure that you made the
right investment because actually future
doesn’t start tomorrow but today thank
you [Applause]
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