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<div class="rich-text">(Program not available for streaming.) A slew of businesses now offer to test your DNA and assess your risk of getting cancer, heart disease, and other illnesses. But can genetic testing provide accurate predictions of conditions with complex genetic underpinnings? On another front, researchers at Harvard have launched the Personal Genome Project, enlisting thousands of people to make their DNA sequences and other personal information public on the Internet. The aim is to improve medical research, but what are the risks?
</div>

Many people are paying to have their DNA tested. Others are sharing their genomes on the Internet. Are they crazy?

Massachusetts General Hospital

Harvard Medical School

Harvard University

Navigenics

<div class="rich-text">Many people are paying to have their DNA tested. Others are sharing their genomes on the Internet. Are they crazy?</div>

Public Genomes

Body & Brain

<div class="rich-text"><h3>
 Public Genomes
</h3>

 PBS Airdate: August 18, 2009



 NEIL
DeGRASSE TYSON:
 
 Hi, I'm Neil
deGrasse Tyson, your host of NOVA scienceNOW.


 It
seems like every week, scientists uncover more secrets of our D.N.A., revealing
how our genetic code can help shape and influence our lives. And for some, this
is scary, raising fears that insurance companies or employers might see our
genetic profile and hold it against us.


 (As
Bureaucrat): Well, Mr. deGrasse Tyson, I've seen your genetic profile, and it's
not pretty. In fact, you're much too much of a genetic risk for us.


 But some say that knowing our genetic risk for
disease will actually lead us to longer, healthier lives.


 (As
Doctor): Well, Neil, I've reviewed your genome. Here are my recommendations.
And we've prepared a bottle of vitamins specially for you.


 Well, thank you!


 (As
Doctor): Live long and prosper.


 So what can genetic testing actually tell us
about our chances for a long and healthy life? And will that knowledge help us
or hurt us?


 It's
 
 Time Magazine
 
 's invention of the
year. No, it's not the electric car or the bionic hand. It's not even Hulu.
It's the personal D.N.A. test.


 A
bunch of new companies are claiming they can read your D.N.A. and tell you all
kinds of things about yourself. And it seems everybody wants to know what might
be hidden in their genes. Larry King, the founders of Google, supermodel Naomi
Campbell, and Ivanka Trump...they've all signed up to get their D.N.A. done.


 But
what can these tests really tell you about you?


 To
find out, I got one of the tests. There was just one thing I needed to do.


 Spit.



 ELISSA
LEVIN
 
 (Navigenics, Inc.): You have agreed to provide us with a saliva sample,
and...



 NEIL
DeGRASSE TYSON:
 
 Spit?



 ELISSA
LEVIN:
 
 Spit,
correct.



 NEIL
DeGRASSE TYSON:
 
 All I had to do was
spit into a tube and send it to a lab in California, where they extracted my
D.N.A.


 D.N.A.
is made of long strings of four chemicals, best known by their initials, A, C,
G and T. The six billion letters in a human genome encode the instructions for
building our bodies and keeping them running.


 Everybody's
D.N.A. is mostly the same. Here and there, a letter or more will be different.



 DIETRICH
STEPHAN
 
 (Navigenics, Inc.): Those subtle variations are what make you and I
unique and different. But, it's also what predisposes individuals, subtly, to
these common diseases.



 NEIL
DeGRASSE TYSON:
 
 This lab compared
the letters of my D.N.A. to the letters of people who have some common
diseases, and then predicted my chances of my getting sick.


 That
would tell me I'm at a higher risk than the population, on average?


 They
said I had less than a 5 percent chance of getting Alzheimer's disease, but
more than a 25 percent chance of getting diabetes or having a heart attack in
my lifetime.


 I
wondered what all these percentages really meant. So I asked my friend, Steven
Pinker, Harvard professor of psychology. He had taken the test and got back an
even longer list.


 Here's
one of my favorites.



 STEVE
PINKER:
 
 ...said I
have a gene that gives me double the risk of baldness. My risk, based on this
single gene, would be 80 percent.



 NEIL
DeGRASSE TYSON:
 
 An 80 percent
chance of being bald? Steve's got more hair than your average rock star.



 STEVE
PINKER:
 
 Oh, I get
stopped all the time with, "Gee, you look like Jimmy Page...," and Robert Plant
and Roger Daltry.



 NEIL
DeGRASSE TYSON:
 
 He was even
featured on mulletlovers.com as the...



 STEVE
PINKER:
 
 ...stud
mullet.



 NEIL
DeGRASSE TYSON:
 
 So what's up? The
invention of the year, a personal D.N.A. test telling Steve Pinker he should be
bald?



 STEVE
PINKER:
 
 What does
it mean that I have an 80 percent risk of baldness? I clearly have a zero
percent risk of baldness.



 NEIL
DeGRASSE TYSON:
 
 And if that seems
so wrong, what about the disease risks I was given?


 Well,
a lot of experts say they're about as accurate as Steve's baldness prediction.



 RUDY
TANZI:
 
 The fact that they're telling people "percent chance"
of getting a disease in their life, right now, it's laughable.



 NEIL
DeGRASSE TYSON:
 
 We know that a few
diseases, like sickle cell anemia and Huntington's disease, are caused by one
faulty gene, and D.N.A. tests do a good job predicting them. But many
geneticists, like Rudy Tanzi, say that for most common illnesses, the tests
still aren't very useful for prediction.



 RUDY
TANZI:
 
 I don't think it's possible, no matter how much
money you spent right now, with any direct D.N.A. service, to get any reliable
information about your risk for the most common age-related diseases.



 NEIL
DeGRASSE TYSON:
 
 But why not? Why
can't common diseases like cancer and diabetes be predicted by looking at your
D.N.A.?


 Well,
here's the problem:


 There's
six billion letters in your D.N.A. Strings of these letters can make up a gene.
Altogether you have maybe 20,000 genes that tell your cells how to build
different proteins, like collagen for your skin or hemoglobin for your blood.
Some genes make switches that can turn other genes on or off. Inside our cells,
every second, thousands of genes are interacting with one another.


 We've
now mapped the human genome, so we have a pretty good list of all the different
genes. But we don't know how they all work together. It's kind of like a
supermarket with thousands of different ingredients. Just as it takes a bunch
of different ingredients from the shelves to make a cake, it takes groups of
many human genes, all working together, to produce a human trait, like
baldness. And it takes another big group to produce a complex illness like
heart disease.



 STEVE
PINKER:
 
 We know
that the recipe for D.N.A. sequences into flesh and blood is extraordinarily
complex. You have one gene that might affect the expression of a second gene,
which might modulate the expression of a third gene.



 DAVID
ALTSHULER
 
 (Massachusetts General Hospital): When we say diabetes, or heart attack, or cancer,
or asthma are genetic, we mean that there are a lot of genes, they each have
often small effects that add up, that lifestyle and environment matter, and a
big dose of random chance.



 NEIL
DeGRASSE TYSON:
 
 If the recipes for
common diseases are this complicated, can we ever figure them out? Can knowing
our D.N.A. ever help us understand disease?


 George
Church thinks it can. George has launched the Personal Genome Project to gather
the evidence to answer all kinds of questions about how our bodies work.


 It
might reveal why a guy like Steve, who has a gene that's supposed to make him a
good jumper and sprinter, is just as lousy at basketball as George, who lacks
that gene.


 More
importantly, the project aims to collect enough D.N.A. data to uncover the
true, complex causes of disease.


 But
first, George needs to convince volunteers to give him their D.N.A.



 GEORGE
M. CHURCH
 
 (Harvard Medical School): We have ten that have actually been through the
full experience.



 NEIL
DeGRASSE TYSON:
 
 Are you one of the
ten?



 GEORGE
CHURCH:
 
 I'm one of the ten. Steve's one of
the...



 NEIL
DeGRASSE TYSON:
 
 He's one of the
ten?



 GEORGE
CHURCH:
 
 Steve's one of the ten, yeah. Right.



 NEIL
DeGRASSE TYSON:
 
 So you're telling
me our whole understanding of the human race now cues off of the two of you?



 GEORGE
CHURCH:
 
 I, I, I think we need a lot more,
a lot more than that.



 NEIL
DeGRASSE TYSON:
 
 When he says a lot
more, he means a lot more. He wants to sift through the D.N.A. of 100,000
people.


 He
might need that many because genetic diseases can involve so many different
ingredients, it might take a huge study to reveal them all. And if we're going
to decipher the complete recipe for disease, then participants like Steve need
to share much more than their D.N.A.



 GEORGE
CHURCH:
 
 To really make this valuable, we
can't just have D.N.A. We need to have their traits, as comprehensive a set of
traits as possible, so their medical characteristics, their physical
characteristics.



 NEIL
DeGRASSE TYSON:
 
 How about the
environment? Do you care about their environment?



 GEORGE
CHURCH:
 
 Environment is very important. We
want to capture that, too.



 NEIL
DeGRASSE TYSON:
 
 So it's a huge
questionnaire, then?


 You
name it, it's on George Church's questionnaire: past diseases, medications,
waist size, what you eat, what you smoke. Researchers want to know all of it,
because the recipes for disease include your environment and your behavior, in
addition to your genes.


 And
here's the kicker: George Church wants to put all that information on the
Internet.



 STEVE
PINKER:
 
 Someone
can, literally, Google my genome. This information will be visible to anyone
with an Internet connection, so a billion people will be able to look at my
genome.



 NEIL
DeGRASSE TYSON:
 
 Steve did opt to
keep a gene private, one that involved Alzheimer's Disease, but other than
that, his D.N.A. is out there.



 STEPHEN
COLBERT
 
 (
 
 The Colbert Report
 
 ,
2/11/09 Video Clip): Please welcome
Steven Pinker. Dr. Pinker.


 You
had your genome sequenced and then you put it on the Internet. Are you crazy? That's
like posting the Social Security number that God gave you.



 NEIL
DeGRASSE TYSON:
 
 Colbert is not the
only guy who thinks Steve Pinker's crazy.



 STEVE
PINKER:
 
 I think
there's a tremendous amount of fear and even paranoia about how our genetic
information could be used against us.



 NEIL
DeGRASSE TYSON:
 
 What happens if all
that info winds up in the wrong hands, say your health insurance company or
your employer?


 A
new law signed last year, GINA, protects only against some genetic
discrimination.



 RUDY
TANZI:
 
 Genetic information is not properly protected yet.



 NEIL
DeGRASSE TYSON:
 
 For example, health
insurers can't discriminate based on D.N.A., but life insurers can.



 RUDY
TANZI:
 
 Until I know for sure that someday there's
absolutely no discrimination, where there's a, let's say an amendment that one
cannot be discriminated against according to race, color, creed, and D.N.A.
sequence, until that day, I don't want my name associated with my D.N.A.
sequence.



 NEIL
DeGRASSE TYSON:
 
 Even beyond
discrimination there's another fear – genetic engineering –
creating super-babies. We've seen it played out in the movies.



 DOCTOR
(
 
 GATTACA
 


 Film Clip):
 
 You
want to give your child the best possible start. You have specified hazel eyes,
dark hair and, uh, fair skin. I've taken the liberty of eradicating any
potentially prejudicial conditions, premature baldness, myopia, alcoholism and
addictive susceptibility, propensity for violence, obesity. You could conceive
naturally a thousand times and never get such a result.



 NEIL
DeGRASSE TYSON:
 
 But Steven Pinker
is not worried about genetic engineering, because he's convinced the recipes of
life are tough to tinker with.



 STEVE
PINKER:
 
 There's
not going to be a stupidity gene or an intelligence gene. There will be
hundreds, maybe thousands of genes that, on average, might bump you up a little
bit, might bump you down a little bit, and perhaps do other things at the same
time.


 The
more you know about how genes really work, the less paranoid you're apt to be
about the prospects of personal genomics.



 NEIL
DeGRASSE TYSON:
 
 Steve and George,
who have pretty secure employment and decent resources, don't think they have
much to lose.


 And
more than 13,000 volunteers who've signed up for George's project may decide
that the risks of making their D.N.A. public are outweighed by the potential
benefit to humankind.



 DAVID
ALTSHULER:
 
 The more sequence we capture in
people with disease 'til it's complete, and different numbers of people in
different populations, we will, I am entirely confident, learn about disease
and human biology, and it will prove a very powerful approach to knowing
ourselves.


 On
Screen Text: Isolate
human D.N.A. in your kitchen in 4 easy steps, for real:


 Â½
cup water


 Â¼
tsp salt


 1
tsp of detergent


 Drop
of pineapple juice


 1
tsp baking soda


 Step
2: Rinse your mouth out with water and spit it into a cup.


 Step
3: Add them together.


 Step
4: Add a little alcohol. (drum roll please): D.N.A.!


 Don't
try this at home. For detailed instructions and more go to pbs.org.
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