♪ ♪ NARRATOR:
A family secret exposed. DANI SHAPIRO:
If my father wasn't
my biological father, who was? Something very, very important
was kept from me. NARRATOR:
A hidden legacy... ...revealed. TYQUINE GOLDEN:
Somewhere in slavery that 20%
might've been integrated with our DNA, and that might not have been
voluntary. NARRATOR:
A life-threatening illness... ...prevented. JESSICA ALGAZI:
They quite possibly
saved my life. NARRATOR:
And a decades-old murder
finally solved. CHELSEA RUSTAD:
Without my DNA, it would have been dead
in the water. NARRATOR:
Just a few of the millions
of stories launched by one of
the most popular and promising new technologies-- consumer DNA testing. With a swab, or a bit of spit, some 30 million of us
have turned over our most personal information hoping to discover what's hidden inside us. But what do the tests
really deliver? Spain, Portugal... Norway?! NARRATOR:
How good is the science? And how are the tests
changing our lives? JUNE SMITH:
I just couldn't believe it. I was on the phone
with my older sister. NARRATOR:
In search of clues... "The Secrets in Our DNA," right now, on "NOVA"! ♪ ♪ NARRATOR:
It's a promise many of us just can't resist. Send in your DNA and unlock
secrets about family... ...ancestry... ...and even health. It's rare that something
comes along that is truly new. And this is something
that's truly new. NARRATOR:
But just how reliable are consumer DNA tests, and their scientific-looking
ancestry percentages? ♪ ♪ Should we worry about
our privacy? What are the unforeseen
consequences when we reveal the "Secrets in Our DNA"? ♪ ♪ In the suburbs
of Olympia, Washington, one woman finds out
just how unpredictable those consequences can be. Chelsea Rustad,
who works as an I.T. specialist, is an avid family historian. In 2015, she takes a test
with the biggest of the direct-to-consumer
companies-- AncestryDNA. RUSTAD:
People end up doing it oftentimes because,
"I just wanna learn about my ancestral background." But then something else pops up
that they really were not expecting at all, and that's exactly what this was
for me. NARRATOR:
The test results suggest that Chelsea is mostly
of Norwegian and German ancestry. Then, because she's also curious
to find new relatives, she downloads her raw file
from Ancestry, and uploads it to a free website
called GEDmatch. It's a place where anyone can search for matches no matter
what company they tested with. GEDmatch shows Chelsea
everyone else on the site who shares DNA with her. RUSTAD:
It's kind of humbling and interesting to see
those interconnections, to realize the sheer number
of people that we share some percentage of DNA with
and don't even realize it. NARRATOR:
On GEDmatch, Chelsea sees
an aunt whom she knows, but no new close relatives. (clicks) She logs off, and doesn't check
the site again. (birds twittering) Three years go by. And then, on the evening
of May 17, 2018, Chelsea gets some unexpected
visitors. RUSTAD:
I look through the peephole and see that there are two cops
waiting outside there. And when I opened the door,
they introduced themselves as investigators who are looking
into a homicide that was a cold case
from 31 years ago. NARRATOR:
They've come to her door
as a result of that DNA file she posted on GEDmatch. To her amazement,
they tell her that her DNA has led them to a suspect. ♪ ♪ It was just really a lot
to take in and really shocking. Every step of what
they explained to me is a horror story. ♪ ♪ (leaves and branches rustling) NARRATOR:
Chelsea's hopeful search
for relatives has taken a dark turn-- into the hunt for a killer. Someone she's related to. Though her story is unusual,
it shows that consumer DNA companies
can fulfill one of their biggest promises extremely well:
connecting us to our relatives. ♪ ♪ Direct-to-consumer, or DTC DNA testing, is a billion-dollar business made possible by the simple
rules of heredity. CECE MOORE:
We inherit our DNA from both of our parents. 50% from mom, 50% from dad. And they inherit it
from their parents. And their parents, of course,
inherited it from their parents. NARRATOR:
Our parents each contribute
about 50% to our DNA. And the same is true for them
and their parents. So the amount of DNA we inherit
from any ancestor drops by half with each
preceding generation. We also share DNA with anyone
who shares a common ancestor with us: siblings,
half-siblings, first cousins, second cousins and so on. ♪ ♪ The way that the DTCs determine
those relationships is by comparing people's DNA. The amount that is shared
is measured in a unit called centimorgans. The more centimorgans
two people share, the closer they are related. And the fewer centimorgans
they share, the more distantly related
they are. NARRATOR:
But with the DTCs,
a relationship to someone can't always be determined
just by counting centimorgans. Because the numbers fall
within ranges. You might share the same number
with a cousin, and a great-uncle,
for example. Just because you have an amount
of shared DNA doesn't mean you actually know for sure what
that person's relationship is, it's just a probability-- a spectrum of possible
relationships. NARRATOR:
June Smith lives in New Jersey,
not far from Philadelphia. In 2018,
she takes a consumer DNA test, hoping to solve
a longstanding mystery. She's spent years searching for
her roots. When June was 16,
growing up in Philadelphia, the woman she knew as her mother
revealed a secret. She said, "Your mother
was a white woman," and I said, "A white woman?" which was totally shocking
to me. Her biological mother's name
was Ann D'Amico. June has never learned
the identity of her father. When June takes her test with AncestryDNA,
she checks the box asking to be linked
to any customers with whom she shares DNA. Though she knows Ann has died, there's someone else
she desperately wants to find. While digging into Ann's
life story, June learned that she'd given birth
to another biracial daughter, who had a different father. A girl named Joan Moser, June's older half-sister. I set out to search for her. And I would go on websites,
I would do all kind of people searches
looking for Joan Moser. But we could never come up
with her. NARRATOR:
One day, June receives a message
on her Ancestry page, telling her she has a new match with a close relative-- a woman named Sigrid Gilchrist. She'd also grown up
in Philadelphia, the only child of a Black couple active in the civil rights
movement. But at 16, Sigrid learned
a long-hidden truth from her mother. She told me I was adopted. That my mother was Italian
and my father was Black. It was crushing. I had no idea. NARRATOR:
In the years that followed, Sigrid never connected with any of her
biological relatives. Until, by pure chance,
right around the time that June tests with Ancestry,
Sigrid does too. Ancestry reports that
the two women, who share 1,641 centimorgans,
may be first cousins. But June can't help wondering: might Sigrid be someone
even closer? The two women agree to talk on the phone. She said, "I have three
questions to ask you." I said, "Okay." I said, "Were you adopted?" She said, "I was." I said, "Are you biracial?" She said, "I am." I said, "Would your birth mother
name happen to be Ann D'Amico?" I said, "Yes, that was her name,
my biological mother." She said, "Are you Joan Moser?" And then I said, "That was the
name on my birth certificate." I said, "Oh my God,
you're my sister. You're not my cousin." We cried and I just couldn't
believe it. I was on the phone
with my older sister. Yes. JOHNSON:
It was just like we've known
each other forever. One-on-one spirit feeling
that you can't describe. ♪ ♪ SMITH:
Finding my sister gave me a sense of belonging. It gave me a sense of saying, "Hey, you know,
we got the same blood." But I do see... Looks like me.
...you. Yes.
Mm-hmm. Look at the chin.
Yeah. I can tell. It's good having
an older sister. I don't like being older,
but it's okay. (laughing):
I love having
a younger sister. She understands. Yeah, yeah. ♪ ♪ NARRATOR:
People like Sigrid and June can be connected by the DTCs thanks to an amazing
recent discovery about DNA. We've known for a long time
that the DNA molecule, which we carry in almost
every cell in our body, contains the code that directs
our lives. The code is carried in chemical
building blocks called bases. Known as A, C, G and T, they form pairs to create
the familiar ladder-like structure of DNA. It takes a whopping three
billion of those base pairs to make up our complete genome. But since 2003, when scientists first read
through all of those base pairs, they've discovered
a surprising fact about more than 99% of them. If you look at
any two people, the vast, vast majority of their
DNA is exactly the same. Because all of the things
that keep you alive, I mean, all of that has to be
the same, it can't change. Otherwise it doesn't work. ♪ ♪ NARRATOR:
But there are places in our DNA
that do vary. Some of them are called single nucleotide polymorphisms,
or SNPs. They're spots where most of us
have one kind of base pair but some of us have another. So instead of trying to identify
all three billion of a customer's base pairs, the DTCs do something that's cheaper and faster. They only check out
a customer's SNPs. Usually about 700,000 of them. And comparing people's SNPs
is an efficient way to see if they're related. Because when their SNPs
match up, all the DNA in between the SNPs
is usually identical too. And matching DNA segments are the telltale signs
of a family relationship. BOLNICK:
By looking at the amount
of shared DNA, direct-to-consumer tests can
give a quite accurate picture of relationships between
individuals. NARRATOR:
FamilyTreeDNA in Houston is one
of the four biggest DTCs. Like many of them,
the lynchpin of its operation is its technology
for reading SNPs. And this is it: a small piece
of glass called a SNP chip. It contains hundreds of
thousands of tiny beads. Each one holds a short piece
of DNA called a probe. And we put an individual's DNA
on the chip, and the part of
an individual's DNA that matches the little probe, they will bind together. NARRATOR:
Once bound,
the identity of the SNP is revealed by a
fluorescent dye. For example, if you have an A,
you'll see green. If you have a G, you'll see red. (machinery whirring) NARRATOR:
The SNP data enables the lab
to see how much DNA is shared by customers who've opted for
family matching. The company website shows them
their list of matches. BORMANS:
It will show everyone
that you're related to, and the estimated relationship. ♪ ♪ NARRATOR:
But sometimes, that match list
can reveal a painful truth. ♪ ♪ This anonymity and taking these
secrets to the grave, with the advent of DNA testing,
it really doesn't exist anymore. NARRATOR:
That's what Dani Shapiro
was shocked to discover. A novelist and memoirist, she's written about growing up
in an Orthodox Jewish family in New Jersey, and about her parents,
Irene and Paul. I was very, very bonded
with my dad-- much more so than with my mom. He worked on the floor of the
New York Stock Exchange. And I would meet him for lunch
sometimes. And he would come out
and he would just like fling his arms open, just like, (voice breaking):
"Hiya darling,"
give me this huge hug. It's going to make me cry. I loved my father. NARRATOR:
From childhood on, this Jewish daughter
draws comments. SHAPIRO:
"You don't look Jewish." "You can't possibly be Jewish." "There's no way you're Jewish." "Did your mother have an affair
with a Swedish milkman?" "Shapiro your married name?" I could go on. NARRATOR:
One day in 2016, her husband,
Michael Maren, decides to take a DNA test
from Ancestry. Without thinking about it much,
Dani decides to take one too. She knows that both of her
parents are of Ashkenazi, or eastern European Jewish,
descent. Several weeks later
they get their results. SHAPIRO:
We open them,
and he's like, "Huh. "According to this,
you're about 50-50, "Eastern European Ashkenazi "and the rest is all
Western European-- French, Irish, English,
Swedish, German." My only response was, "Oh, well
they must've made a mistake." It was only a few days later,
my husband came in and he said,
"You have a first cousin "on your Ancestry.com page. "A first cousin who
we don't know, we don't, we don't know this
first cousin." NARRATOR:
In search of clues,
Dani turns to someone she's sure is a blood relative. SHAPIRO:
I have a much older half-sister from a first marriage
of my dad's. I recalled that a number of years ago
she had done I think 23andMe. And I sent her an email
and I said, "Do you have your results from,
from the DNA test you did?" And she did
and she sent them to me. NARRATOR:
Dani gives the half-sister's
file to her husband. Using GEDmatch, he checks to see
how much DNA she and Dani share and discovers the truth. He said, "You're not sisters." And I said,
"Not, not half-sisters?" 'Cause that's what we were. And he said,
"No kind of sisters. You're not related." ♪ ♪ And so that was the moment
for me when all of the pieces began to just click into place
where I thought, "Well, if he's not one of our
fathers, he's not my father." ♪ ♪ Something very, very important
was kept from me. And it felt to me like
my identity was... um... in pieces. NARRATOR:
Her parents are both deceased. But she remembers her mother
once saying she had a hard time getting pregnant, and mentioning a fertility
clinic in Philadelphia. Dani and her husband track down
the first cousin who popped up on Ancestry. His uncle turns out to be
Dani's biological father. A retired doctor, he'd gone to
medical school in Philadelphia, and had been a sperm donor
at the clinic. She searches the internet, and sees a video of him
giving a talk. SHAPIRO:
I knew what I was seeing. And I remember getting up
and walking into the bathroom, and looking at my face
in the mirror for the first time after seeing him, and understanding my face
for the first time in my life. NARRATOR:
Dani feels compelled
to write a new book about family, identity,
and her own experience. Its title: "Inheritance." My book is dedicated
to my father. And sometimes someone will say
to me, "Which father"? And I'm like, "Are you kidding?" My mother wanted to
bear a child. And I think it must really
not have been easy for my father to have gotten to this place
where he was willing to genetically
replace himself. That's what that is. It's saying one of us is going
to be the biological parent of this child
and one of us is not. And no one's ever gonna know
except for us. ♪ ♪ NARRATOR:
Dani is far from alone. According to one estimate,
some one million people have discovered
from consumer DNA tests that the man who raised them is not their biological father. Or that they have a half-sibling
they never knew about. And there are even
darker secrets that sometimes come to light. In Washington State, in 2018, the secret that Chelsea Rustad's
DNA helps to reveal could be the key to cracking a 31-year-old
cold case. It's really upsetting,
very distressing to think about. Only a monster could do
such things to people. NARRATOR:
On November 18, 1987, two young Canadians-- Jay Cook, 20 years old, and his girlfriend,
Tanya van Cuylenborg, 18-- leave their hometown, a suburb
of Victoria, British Columbia, heading to Seattle, to run
an errand for Jay's dad. Six days later,
Tanya's partially clothed body is found by the side
of this road in Skagit County, Washington. She's been shot in the head. And there's evidence of rape. Two days after that,
some 65 miles away in Snohomish County,
beneath this bridge, hunters find Jay's body. He's been strangled with twine and dog collars... his head beaten with rocks. We had two young
totally innocent kids that got kidnapped
and brutally murdered. NARRATOR:
During the investigation,
police recover potentially precious evidence
from Tanya's body: the assailant's DNA. They will run it through
a lab procedure that is still the gold standard for proving
identity with DNA. It zeroes in on just 20 or so
places in the genome where a short string of letters,
for example G-A-T-A, just keeps on repeating. They're called
short tandem repeats, or STRs. And scientists can count the number of times they repeat. STEVEN ARMENTROUT:
And those counts vary
person to person just like the ridge lines
on a fingerprint. It's a very powerful technique
because with enough locations, you can do an identity match
with very high probability because of these slight
differences one person to the next. NARRATOR:
But like a crime scene
fingerprint, a crime scene STR profile
is only useful if it matches one that's already
in the possession of law enforcement. For decades,
the profile in this case doesn't match anyone known
to the police. The case goes cold. Until the day when
Chelsea Rustad uploads a DNA file to GEDmatch, where it becomes a clue that will eventually lead
the police to a major break in the case. (sirens blaring, radio chatter) Chelsea's experience
will make headlines. But most DNA test-takers
just want to know, "What are my roots?" A seemingly simple question
that often leads to its own set of mysteries. BESSIE LAWTON:
Don't open anything
until we ask you to. NARRATOR:
These 14 people are about
to experience DNA ancestry testing
for themselves. 'Cause there are so many kids
I'm growing up with who are all in
the same situation. We don't know our heritage. We could probably safely assume that our ancestors' ancestors
had something to do with like slavery
and things like that. But we don't really know
where we came from. NARRATOR:
Cherry Richardson is taking part
in a research study at West Chester University
in Pennsylvania. So we have a research protocol
by which we collect data for this particular project. NARRATOR:
The study is run by two
communications professors-- Bessie Lawton and Anita Foeman. The question they're asking is: how does DNA testing affect our
understanding of who we are? And also, our ability to understand what makes us
different? LAWTON:
And after we receive
the results, we bring you together... The whole idea is to listen
to each other and talk with one another... NARRATOR:
Anita was inspired to start
the project because of her experiences as a diversity trainer. FOEMAN:
I thought looking at our DNA was a really interesting way to
approach this whole conversation about race and diversity
in a way that was not going to make people defensive. And that has happened. We don't identify ourselves
with Africa. We just say we're Black. You know, we literally separated from that
which we came from. NARRATOR:
In a previous test
with Ancestry, Tyquine Golden was told his roots were 80% West African, and 20% British. They got everybody. NARRATOR:
In today's test
with FamilyTreeDNA, he hopes to learn more. My suspicions might lead me
to say, somewhere in slavery, 20% might've came in and have
been integrated with our DNA. And that might not have been
voluntary. I think as an African American,
it's a tough thing to grapple with when you think
about the origin of your Caucasian,
or white ancestry, that often happened due to rape
and mistreatment. But it is part of your history. So you have to confront it
on some level and understand it. It's part of how you got here. I don't want to hide
from the truth. No matter how
bad it could be. NARRATOR:
Now it's time to collect DNA... LAWTON:
You can turn it around a little bit to capture more. NARRATOR:
...and ship the samples off
to Houston. So how do DTCs like
FamilyTreeDNA come up with a breakdown
of your ancestry? (machinery whirring) It's a process that also
centers around SNPs-- those places in our DNA that most frequently vary
between people. The company compares your SNPs with those of people in what
are called reference groups-- people alive today whose DNA
has been tested and who share patterns of SNPs that scientists have found to be typical for the region in which
they live. Those patterns are compiled into
a database. But how well does it represent
test-takers? FOEMAN:
They're telling you this is your background based on
our database. Well, if something's not
in their database, they can't tell you that it's in
your background. NARRATOR:
The DTCs have less data about people of African
and Asian descent than they do about people of European
descent. Most of the genetic testing
that has been done has been done on North Atlantic
Europeans. So our reference databases
are biased. (bird crowing) FOEMAN:
Why don't we all just
take a minute, and open your results, and take a look at the map
for the first time. NARRATOR:
FamilyTreeDNA has given
Nick Pasvanis, whose parents trace
their ancestors to Greece, Germany, England, and Scotland,
a detailed breakdown. PASVANIS:
I'm 45%
Southeastern European, which is about
what I expected. I've always felt like I was
just a general European mutt. And that's pretty much
what the map shows. RICHARDSON:
So, I was wondering
when I got it, like, if it would say if I was Black, and I am 94% West African, (chuckling):
so, yeah, I'm pretty Black. NARRATOR:
But Cherry Richardson's African
bubble provides little detail. Hana Wiessmann and Viola Wang, who were both born in China, have even bigger bubbles. WIESSMANN:
I mean, I have just these giant
bubbles, and they're like, "You're super Asian," like, I
kind of already knew that, so... Basically, people have huge
bubbles are considered "the minorities." And it's unfortunate because
it perpetuates a kind of Eurocentrism that has
tainted our scholarship. That is a foundation
for notions, false notions
of white supremacy. And it highlights
the disparities that are currently prevalent
throughout science and particularly in genetics. There's also 23% southeast with
Italy and Greece highlighted, which was never on our radar. NARRATOR:
But there's another problem with
the way DTCs calculate ancestry. MAN:
64% European... NARRATOR:
The DNA of people
who lived in a place long ago-- your ancestors-- may be different from the DNA
of the people in the reference groups
who live there today. That's because for centuries,
people, and their DNA, have been moving around
the globe. JACKSON:
You really have to get over
the hurdle of static thinking about human populations. That there are Irish genes,
and Italian genes, and, and Nigerian genes,
and Zimbabwean genes and that's just not the way
that human evolution works. Because static feeds into
the racist paradigm, feeds into the me versus you,
you know, us versus them. ♪ ♪ NARRATOR:
And yet it is true that certain SNP patterns are more prevalent
in some places than others. ♪ ♪ CUNNINGHAM:
There are several clues that can link you back to areas and specific regions
where your ancestors evolved. The companies are doing
the best they can with the data that they have. And that's why all the DNA
testing companies are trying to add more discrete populations
to their database, so that when they don't assign
your population perfectly, they're as close
as they possibly can be. NARRATOR:
Bessie and Anita are finding
that whatever their flaws, DNA ancestry tests, by making
people think about their roots, can help them to better
appreciate human diversity. ...the north of Africa,
Middle East, the western Europe,
but I was... LAWTON:
It makes people think of their stories in relation to
other people in the whole story of human migration. Most people have felt this to be
a positive experience. NARRATOR:
Tyquine Golden's results
from FamilyTreeDNA are very close to those he received
from Ancestry. GOLDEN:
Can't ignore it now.
(chuckles) The whole, like, Ireland and U.K. part
of the DNA. FOEMAN:
Let me ask,
do you think you're as authentically Black
as she is? I don't think it makes
a difference. FOEMAN:
They sat there and had a conversation
about race that was fun and exciting
and joining. And if that can happen more and more,
what are the possibilities? ♪ ♪ NARRATOR:
But as difficult
as determining ancestry may be, the toughest challenge
the DTCs are taking on may be assessing
our genetic disease risks. Because when it comes
to the accuracy of those tests,
the stakes couldn't be higher. We all face the risk
of developing life-threatening diseases. But some of us face a greater risk because of
variations in our genes-- that form the genetic code for making proteins, the critical molecules
that keep our bodies working. It is hard to believe that
a single letter change could affect a human being
so profoundly among this huge string
of three billion letters. But then you get those
critical places where if you've made
that specific change, the protein simply doesn't work
anymore. NARRATOR:
Several of the DTCs
now offer testing for genetic health risks. But how reliable are they? Most of those tests look only at selected SNPs and
ignore the rest of the genome, where other risks
23andMe's controversial teste: for breast cancer risk. It looks at two genes
called B-R-C-A, or "bra-ka" genes. They code for proteins
that control cell growth. But certain base pair variations derail the BRCA genes, and make some cancers--
such as pancreatic, prostate, and especially ovarian
and breast cancer-- more likely. Scientists have documented
close to 4,000 such variations. 23andMe sells a SNP test
that looks for three of them. They're among the variations
that put women at very high risk for breast cancer. Each can be reliably detected
by SNP testing. And each is ten times
more common in women who have Ashkenazi Jewish ancestry. Jessica Algazi, a 52-year-old
entertainment lawyer in Los Angeles, has three
Ashkenazi grandparents. In 2018, she takes the 23andMe
BRCA test, having no idea
it will change her life. One day, when she's playing
golf, she gets an email. ALGAZI:
I get the results
as I'm sitting on a golf course in a golf cart and I looked down
and like, "Oh my God, I can't believe this." NARRATOR:
23andMe reports that she has a BRCA 1 variation
that makes it highly likely she will develop ovarian
or breast cancer. A second test by a DNA lab that specializes in BRCA testing
confirms it. Although she is cancer-free
for now, she makes a decision. ALGAZI:
My gynecologist said, you know, "Jess, you got to do
something now. "You'll have your ovaries
and tubes removed and you need to have
a double mastectomy right away." And so, I'm just grateful that
I was able to find out in time to do something
before I got sick. I'm eternally grateful
to the folks at 23andMe for giving me that opportunity. They quite possibly
saved my life. NARRATOR:
But most women who have
BRCA variations don't have any of the three that 23andMe
tests for. Women like Pamela Munster. She happens to be an oncologist in San Francisco who specializes
in breast cancer. I have the BRCA1 gene... NARRATOR:
She has no Ashkenazi Jewish
ancestry. In 2010, Pamela takes 23andMe's
BRCA test herself. MUNSTER:
What I learned is that I didn't have much of
a breast cancer risk, and by 23andMe's reckon, my breast cancer risk
was actually quite low. NARRATOR:
But in 2012, Pamela is diagnosed
with breast cancer. MUNSTER:
And the way that my cancer
looked under the microscope, I had the sense that
this breast cancer was associated with a
BRCA mutation. NARRATOR:
To confirm her hunch,
Pamela has her DNA tested by what's known
as a clinical lab, the kind doctors use. They don't just look at
scattered SNPs. They look at every single
base pair in genes... A process known as sequencing. They go through the entire
BRCA gene. And they... remember, these are
like 80,000 base pairs. And they can tell you
is the letter there, is the letter not there. NARRATOR:
Pamela turns out to be right. She does have a BRCA2 mutation. But it's not any of the three
variants 23andMe tests for. It's one of the thousands
of others. If I just want to know
who I'm related to, 23andMe, Ancestry are very good tests. If you want to know,
do you carry a BRCA gene and are you at risk
for breast cancer? I think 23andMe
is not an ideal test. NARRATOR:
But 23andMe says that
its BRCA test has alerted some 3,000 people
to their cancer risk. And that choosing these
three variants makes sense, because they confer
such high risks. SHIRLEY WU:
What these variations mean
for someone's risks is very, very well understood. The studies that have shown
near, nearly half of people carrying one of these variants
don't realize it. So it's great for those people
who were not even thinking they were carrying that mutation to pick it up with
direct-to-consumer testing. It's not a good thing
if those people think they have been exhaustively
tested because they have not. ♪ ♪ NARRATOR:
And there are also concerns about how test-takers' data
is used. In 2018, 23andMe agrees to share
anonymized information about millions of its customers with GlaxoSmithKline
to use in the development of new drugs. 23andMe says some 80% of its
customers have given consent for their data to be used
in research. Most have also filled in
health questionnaires, enabling valuable links
to be made between their genes, and their health histories. The potential of what you can do
with that information is just astounding. NARRATOR:
But while the possible rewards of the deal seem clear,
to some, it raises ethical questions. You're actually paying
your money to give your data to a company. And then it will be
capitalized on potentially without benefit
to you. When you're dealing with
such a new technology, I think the full implications
can't possibly be understood by consumers because things are
just too new. NARRATOR:
So how safe is the data of
23andMe's 12 million customers? JACQUIE HAGGARTY:
We do not sell data. We do not share your data
with any insurance company or any employer, hard stop,
without your consent. NARRATOR:
Federal law prohibits
most employers from using genetic data to make
workplace decisions. And prohibits health insurers
from using it to change or deny coverage. But disability
and life insurance companies are free to use it. While 23andMe and FamilyTreeDNA
talked with "NOVA" about these issues, AncestryDNA declined
to participate in this film. ♪ ♪ The risks inherent
in new technologies often become obvious only in hindsight. Chelsea Rustad could never
had predicted that her DNA test might lead the police
to a dangerous murder suspect. They found him using
a new investigative technique that springs directly from
the rise of consumer testing. It's called genetic genealogy. And before it was used
to solve crimes, it was used by people looking
for their birth parents. One of its pioneers
is a retired patent lawyer named Barbara Rae-Venter. RAE-VENTER:
I really backed into this whole thing. Because I was doing, uh...
unknown parentage type work with adoptees. For adoptees, DNA has been huge, because for them to try
and figure out who their birth relatives were
just using paper, very, very difficult. NARRATOR:
Barbara starts by connecting
the adoptee to the people in their DNA match list. Then by digging through records,
she finds more relatives. The goal: find an ancestor
who links everyone together and points directly
to the birth parent. In 2017, Barbara is asked
by investigators in California to try to solve
a different kind of mystery: one of the nation's
most notorious cold cases. The so-called
Golden State Killer was suspected of committing at least 13 murders
and more than 50 rapes during the 1970s and '80s. ♪ ♪ Police have long had his DNA, but they have no idea who he is. ♪ ♪ Barbara agrees to help. From the crime scene DNA,
a SNP profile is made, and then uploaded to GEDmatch. Using the relatives who pop up,
Barbara creates a family tree and eventually zeroes in on a man named Joseph DeAngelo. A one-time policeman, DeAngelo
had never been under suspicion. Police collect his DNA
and run an STR test. The result:
a perfect match with the DNA of the Golden State Killer. Murder in the first degree-- that charge, sir,
how do you plead? NARRATOR:
In June 2020,
Joseph DeAngelo pleads guilty to 13 counts of murder. Guilty. NARRATOR:
He is sentenced
to life in prison. At the time
of DeAngelo's arrest, Detective Jim Scharf
is amazed to learn what's been accomplished
using genetic genealogy. He quickly thinks about
Tanya and Jay. He reaches out
to a computer scientist he's been working with
in Virginia-- Steve Armentrout. So do I need to hardwire
the number in here or am I doing a calculation? NARRATOR:
Steve's company,
Parabon NanoLabs, has developed methods
and software for sifting through hundreds of thousands of SNPs. ARMENTROUT:
We first have to get DNA
from the crime scene into a format that can be used
for uploading. Jim gave us the okay
on a Thursday. On Friday, we were uploading to GEDmatch. NARRATOR:
Steve has teamed up with a genetic genealogist in California, CeCe Moore. MOORE:
On Saturday morning, I rolled out of bed
before I even put my contact in, and flipped open my laptop to
see if we had that match list. And we did. GEDmatch shows two people
who each share around 3% with the unknown suspect. So to have two people that
shared about 3% of their DNA or enough to be a second cousin
with the suspect did feel like getting struck
by lightning. Second cousins will share a set of great-grandparents, and that's not that far back
in the tree. In genealogy, I can almost always get back
to someone's great-grandparents. NARRATOR:
One of CeCe's two top matches
is Chelsea Rustad. The other is a cousin who's
never been publicly identified. They both share DNA
with the suspect. But don't share any
with each other. That meant that they represented
different branches of the suspect's family tree. I really lucked out. I found an obituary from a woman
who was carrying the surname that I had just seen in
the other match's family tree. So that told me we have a woman from this tree and a man from this tree
who have married. And hopefully had children. NARRATOR:
CeCe knows that if they did,
those children would carry a mix of DNA very similar
to that of the suspect. The couple had four children. We got really lucky that there
was only one male in this family because the genetic genealogy
was pointing at one person and only one person, and that was
William Earl Talbott II. ♪ ♪ NARRATOR:
At the time of the murders, Talbott lived a few miles
from the bridge where Jay Cook's body was found. Now, he is 55. A truck driver. The police follow him. They want his DNA to see if it matches the DNA from the crime scene. One day they get lucky. A drinking cup falls out
of his truck. Jim Scharf brings the cup to the Washington State Patrol
Crime Lab for STR testing. Lab supervisor Lisa Collins
asks him to wait. Soon, she returns. SCHARF:
Lisa turned and handed me
the report and said, "Jim, it's him. There's a match." And I couldn't believe it. My eyes teared up. I yelled out a scream. "This is wonderful. We finally got this guy." NARRATOR:
On May 17, 2018, William Earl Talbott II is arrested on a charge
of first degree murder for a 31-year-old crime. He's a man who was identified not because he took a DNA test, but because a relative did. Someone he'd never even met. In June 2019, the jury
delivers its verdict. JUROR:
We the jury find the defendant
William Earl Talbott II guilty of the crime
of first degree murder as charged in count one. NARRATOR:
Talbott is the first suspect
identified by genetic genealogy ever to be convicted by a jury. He is soon sentenced to two consecutive life terms
in prison. It has been reiterated to me so many times
by the investigators that they wouldn't have come
this far without my DNA. It would have been
dead in the water. NARRATOR:
Since Talbott's conviction,
the Parabon team has used genetic genealogy to identify more than a hundred
criminal suspects. But just being named
by a genealogist isn't enough to get a person arrested. SCHARF:
We have to get confirmation DNA using STR testing
before we have probable cause to make an arrest. NARRATOR:
Even so, to critics,
the use of genetic genealogy by law enforcement
raises privacy questions. NELSON:
Do we want to catch people who
have committed heinous crimes? Absolutely, yes. But what DNA profiles are being
trolled through? What failed attempts
to find suspects are we not hearing about and the data violations
and privacy violations that happen along the way? NARRATOR:
The genetic genealogy team
at Parabon says the fears are exaggerated. GREYTAK:
People have control over whether their DNA is used
in these investigations. Simply taking a DNA test
at 23andMe, at Ancestry, your DNA is in their
private database. NARRATOR:
But there's little regulation,
and policies vary. In 2019, FamilyTreeDNA
apologized for letting the FBI search its database
for people who share DNA with crime scene samples
without customers' permission. FamilyTreeDNA and GEDmatch both now say they only do so
with explicit permission. And another worry:
consumer DNA companies, like any that collect data,
are vulnerable to hackers. Yet the risks are clearly
not deterring everyone. No one is forcing anyone to take
a DNA test. If your paranoia,
and fear of Big Brother is greater than your interest in reading the medical
and history book written into your cells, then I
think that you should not test. ♪ ♪ There's beauty in, you know,
understanding where you're from, and then searching for that. NARRATOR:
The consumer DNA phenomenon is changing many people's lives by revealing the secrets
that lie hidden deep inside ourselves. But are its benefits worth
its cost and risks? Do I want to know that I'm at
risk for Alzheimer's when there's absolutely nothing
I can do about it? Maybe not. SHAPIRO:
With these DNA tests
as popular as they are, the chances are that everyone who has had
a secret of this nature kept from them
is gonna find out. Our hearts and our minds don't
know fully how to grapple with what we're being asked
to grapple with. LAWTON:
I think the surge in DNA testing
over the last 20 years has opened people's minds
to the possibility that they share more
with other people than what they thought they did. That 1% that makes us different is really just the beautiful
diversity in the natural world. And it's not that
one genotype or genome is better than another. It's just they're beautifully
different. The more we are tested, the more we see how connected
we are to each other. And perhaps, if we see that
we're connected to each other, we'll treat each other
a little bit better. ♪ ♪ ♪ ♪ ANNOUNCER:
To order this program on DVD,
visit ShopPBS or call 1-800-PLAY-PBS. Episodes of "NOVA" are available
with Passport. "NOVA" is also available
on Amazon Prime Video. ♪ ♪
