Hi, I’m Adriene Hill, and Welcome back to
Crash Course, Statistics.
Today we’re going to step back from sampling
and regressions to talk about the impact of
all that statistical gathering.
We’ve seen that the interpretation of this
information can have real lasting effects
on our society, but its collection can also
have lasting effects on the subjects.
The process of gathering and applying statistics can affect real people’s lives which means
there’s an responsibility to gather and
use this data ethically.
Today we’ll discuss 5 stories.
Four of them are real and all of them can
help us learn where collecting data can go
wrong, and how we can help prevent these things
from happening again.
INTRO
Our first story begins in 1822 when a young
fur-trapper named Alexis St. Martin got shot
in the stomach when another trapper’s gun
accidentally went off.
The wound was serious but a local army Doctor,
William Beaumont was able to stabilize St.
Martin through a series of presumably painful
anesthetic free surgeries.
But Dr. Beaumont couldn’t close the wound,
which left a small hole--called a gastric
fistula--that allowed access to the stomach.
St. Martin was out of a job since it’s hard
to be an active fur trapper with a hole in
your stomach.
So, he signed a contract to become a servant
to Dr. Beaumont.
In addition to traditional chores, St. Martin
participated in all sorts of experiments at
the whim of the doctor.
Beaumont used the gastric fistula to study
how the body digested food.
He made huge strides in the field, including
exploring the influence of mental disturbance
on the process of digestion and correcting
the long held belief that the stomach digested
food by grinding it up.
When, in 1838, the two finally parted ways,
Beaumont spent the last 15 years of his life
pleading with St. Martin to come back.
Unsurprisingly, St. Martin declined.
Without this strange situation, the field
of gastroenterology may have progressed more slowly. 
In fact St. Martin’s fistula was an inspiration
to Pavlov who used fistulas in dogs during
his famous classical condition experiments.
But all this progress came at a cost--to St.
Martin but also to those dogs.
One of the most important ethical considerations
in research is whether humans who participate
are able to feasibly say “no”.
People with little power, resources, or money
can be coerced into participating in experiments
that they’re uncomfortable with.
Most research institutions have a committee,
called the Institutional Review Board-- IRB--which
oversees all the research at that institution
to make sure that it’s ethical.
“Voluntariness” is one of the most important
things that they check for.
This prohibits people with undue power or
influence over us from asking that we participate
in a research study.
For example your boss or professor is limited
in how they can ask you to participate in
a research study because you might feel that
you have no choice--you have to participate
otherwise this they might fire you or give
you a failing grade.
Ethical research needs to be voluntary--at
least in humans.
Animal rights activists argue that since animals
cannot volunteer for a study, we shouldn’t
use them.
In addition to their voluntary participation,
subjects should also know what will happen
to them during the study.
This was not the case in 1932 when the Tuskegee
Institute began a 40 year long study on over
600 black men.
Under the guise of free medical care, the
men were secretly enrolled in a study to observe
the long term progression of Syphilis.
Over 300 of the men enrolled had the disease,
but Researchers failed to treat them with
anything but fake or innocuous medicines like
aspirin even after it became clear that penicillin
was a highly effective treatment for the disease.
Late stage symptoms of Syphilis include serious
neurological and cardiovascular problems,
yet The Institute allowed the study to go
on.
Some wives and kids also contracted syphilis.
In 1972 public outrage caused the study to
close down when news of the unethical conditions
was leaked to the media.
In 1951, at the same time the Tuskegee study
was running a poor tobacco farmer named Henrietta
Lacks went to Johns Hopkins Hospital in Maryland
and had cells from a tumor collected without
her knowledge or consent.
These cells were used to grow a new cell line--called
the HeLa line--which scientists use to do
in vitro experiments.
The cells’ ability to thrive and multiply
outside her body made the cell line useful
to researchers.
It is still used for medical research today,
lending itself to cancer and AIDS research
as well as immunology studies like the one
that led Jonas Salk to discover the Polio
Vaccine.
And in 1955 HeLa cells were the first human
cells to be successfully cloned.
Overtime, the cell line and discoveries it
facilitated became extremely lucrative for researchers.
But Lacks and her family...didn’t receive
any financial benefit.
These studies emphasize the need for informed
consent.
Subjects have the right to not only receive
all the facts relevant to their decision to
participate, they have the right to understand
them.
Many institutions require that information
must be presented clearly and in a way that’s
appropriate for the subjects’ comprehension
level.
Even children--whose parents are legally allowed
to consent for them, must get an age-appropriate
explanation of what will happen in the study.
This is incredibly important because it respects
the dignity and autonomy of the subject, allowing
them to stop research procedures at any time.
That incentivizes researchers to design studies
with more acceptable levels of risk.
In all three of those stories the research
procedures did not have any benefit to the
patients.
In 1947, the Nuremberg code was created in
order to establish guidelines for the ethical
treatment of human subjects.
One of the main tenets is beneficence, which
not only requires that researchers minimize
the potential for risk to subjects, but also
requires that the risk should be outweighed
by potential benefits to the patient and the
scientific community.
The Nuremberg code was created and implemented
after the second World War, during which horrifying
experiments were conducted on prisoners in
Nazi concentration camps.
The Nuremberg Code lays out ten principles
to which modern day studies still must adhere.
These 10 principles stand as the basis for
much of current research ethics and include
things like voluntariness, informed consent,
and beneficence.
But as we settle into the age of technology,
the application of these ethical principles
can become more cloudy.
Our last story here isn’t real but it illustrates
the complexities of research ethics in the
digital age.
In the seventh season of the hit show Parks
and Recreation, a giant internet corporation
comes to the small town of Pawnee, Indiana,
to offer free Wifi to the entire city.
Everyone gladly accepts, they like the free
service.
But when boxes of personalized gifts arrive
at every citizen’s doorstep, some become--understandably--concerned.
Because, the gifts are perfect, fitting the
exact interests of the recipient.
Someone who collects stuffed pigs dressed
as celebrities get “Hamuel L. Jackson”
and someone obsessed with politics get the
newest Joe Biden poetry collection.
These boxes are perfect for the people who
received them--eerily perfect.
So how did the internet company know what
each person would want?
It turns out that the free WiFi came with
a pretty high cost, privacy.
In exchange for the free WiFi the internet
company, Gryzzl, was collecting all data that
was transferred over their Network, this gets
called Data Mining.
And it may seem far-fetched, but it’s happening
right now.
Not the gift stuff.
The data mining.
Grocery stores track what we buy with our
rewards cards.
Netflix keeps track of everything we watch.
Amazon knows exactly what we buy - what we
look at.
And those Terms of Service Agreements we click
on without reading them when we download an
app or sign up for a social media account
they often include some kind of stipulation.
When we use “free” internet services we’re
agreeing to pay, not with money, but usually
our information.
Facebook and Google offer there services for
free in part because they’re profiting off
of our data.
They might be using it for research.
Or to customize our experience on their site
so that we buy or watch more stuff on Amazon
and Youtube.
They also use it to sell targeted ads, giving
advertisers the opportunity select exactly
the type of people who will see their ads.
And sometimes the way these ads are targeted
can be pretty unethical.
For example, companies discriminating based
on age by specifying that job ads should be
shown only to young people.
Data is being used in ways that affect every
facet of your life.
But, since we’re still in the beginning
stages of this huge influx of digital information,
we get to see the progression of ethics in
this area unfold in front of us.
The laws that will protect your data and privacy,
like the Nuremberg Code protects participants
in scientific experiments, are still being
written, and many of the same concepts are coming up.
For example, using the internet, Google, and
social media have become so entrenched in
some societies that it’s almost impossible
to hold a job without them.
If that’s the case, we need to ask whether
it’s ethical to require that users sign
over their right to privacy in order to use
them, or like in most clinical studies, would
that border on coercion?
We also need to ask whether companies that
use or sell our information be held to the
standard of “informed consent” which requires
agreements to be in language that’s simple
enough for the user to understand what they’re
agreeing to--even without a law degree.
Or, on the other hand whether they should
be exempt from this requirement if they only
use the data internally.
It possible to draw parallels between data
mining and the stories we talked about at
the beginning of this episode - though admittedly
not quite as harrowing.
Like Alexis St. Martin may have felt pressure
to stay with Dr. Beaumont because he couldn’t
work as a fur-trapper anymore, it can be argued--
to a much lesser degree -- that we use sites
like Google and Twitter because we feel that
there’s no other option as we try to remain
informed in our hyperconnected world.
And we might not be getting all the information
we need to consent in an understandable way,
similarly to how Henrietta Lacks was not informed
why her cells were being taken or what they’d
be used for.
These situations are obviously not exactly
the same, and we, as a society, need to decide
how to apply the principles of research ethics
in these new digital spaces.
As we move forward and gain the ability to
do things like sequence an entire genome in
days, rather than years, we open the door
for amazing advances in personalized medicine
that could save millions of lives.
But we also open the door for abuse of this
sensitive information.
The conversation about how to handle these
types of situations is still going on.
We’re are the ones who will decide what
is said.
And we’re going to be the subject of those
decisions. 
Thanks  for watching. I'll see you next time. 
