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Transcript
Monday, Oct. 27, 2008
1. The Retail DNA Test
By Anita Hamilton
Before meeting with Anne Wojcicki, co-founder of a consumer gene-testing service
called 23andMe, I know just three things about her: she's pregnant, she's married
to Google's Sergey Brin, and she went to Yale. But after an hour chatting with her
in the small office she shares with co-founder Linda Avey at 23andMe's
headquarters in Mountain View, Calif., I know some things no Internet search could
reveal: coffee makes her giddy, she has a fondness for sequined shoes and freshbaked bread, and her unborn son has a 50% chance of inheriting a high risk for
Parkinson's disease.
Learning and sharing your genetic secrets are at the heart of 23andMe's
controversial new service — a $399 saliva test that estimates your predisposition
for more than 90 traits and conditions ranging from baldness to blindness. Although
23andMe isn't the only company selling DNA tests to the public, it does the best
job of making them accessible and affordable. The 600,000 genetic markers that
23andMe identifies and interprets for each customer are "the digital manifestation
of you," says Wojcicki (pronounced Wo-jis-key), 35, who majored in biology and was
previously a health-care investor. "It's all this information beyond what you can see
in the mirror."
We are at the beginning of a personal-genomics revolution that will transform not
only how we take care of ourselves but also what we mean by personal information.
In the past, only élite researchers had access to their genetic fingerprints, but now
personal genotyping is available to anyone who orders the service online and mails in
a spit sample. Not everything about how this information will be used is clear yet —
23andMe has stirred up debate about issues ranging from how meaningful the
results are to how to prevent genetic discrimination — but the curtain has been
pulled back, and it can never be closed again. And so for pioneering retail genomics,
23andMe's DNA-testing service is Time's 2008 Invention of the Year.
The 1997 film Gattaca depicted it as a futuristic nightmare, but humangenotyping has emerged instead as both a real business and a status symbol. Movie
mogul Harvey Weinstein says he is backing 23andMe not for its cinematic
possibilities but because "I think it is a good investment. This is strictly medical
and business-like." Google has chipped in almost half the $8.9 million in funding
raised by the firm, which counts Warren Buffett, Rupert Murdoch and Ivanka
Trump among its clients.
Weinstein isn't saying what his test told him, but Wojcicki and her famous husband
are perfectly willing to discuss their own genetic flaws. Most worrisome is a rare
mutation that gives Brin an estimated 20% to 80% chance of getting Parkinson's
disease. There's a 50% chance that the couple's child, due later this year, will
inherit that same gene. "I don't find this embarrassing in any way," says Brin, who
1
blogged about it in September. "I felt it was a lot of work and impractical to keep it
secret and I think in 10 years it will be commonplace to learn about your genome."
And yet while Wojcicki and Brin aren't worried about genetic privacy, others are.
In May, President George W. Bush signed a bill that makes it illegal for employers
and insurers to discriminate on the basis of genetic information. California and New
York tried to block the tests on the grounds that they were not properly licensed,
but have so far been unsuccessful. Others worry about how sharing one's genetic
data might affect close relatives who would prefer not to let a family history of
schizophrenia or Lou Gehrig's disease become public. And what if a potential mate
demands to see your genome before getting serious? Such hypotheticals are
endless. And some researchers argue that the tests are flawed. "The uncertainty is
too great," says Dr. Muin Khoury, director of the National Office of Public Health
Genomics at the Centers for Disease Control and Prevention, who argues that it is
wrong to charge people for access to such preliminary and incomplete data. Many
diseases stem from several different genes and are triggered by environmental
factors. Since less than a tenth of our 20,000 genes have been correlated with any
condition, it's impossible to nail down exactly what component is genetic. "A little
knowledge is a dangerous thing," says Dr. Alan Guttmacher of the National
Institutes of Health.
23andMe is unfazed by its detractors. "It's somewhat paternalistic to say people
shouldn't get these tests because 'we don't want people to misunderstand or get
upset,'" says board member Esther Dyson. There can be a psychological upside too:
some people decide to lead healthier lifestyles. Brin is currently funding Parkinson's
research. And not all customers' results are as troubling as his. Nate Guy, 19, of
Warrenton, Va., was relieved that though his uncle had died of prostate cancer, his
own risk for the disease was about average. He even posted a video about it on
YouTube. And unflattering findings can have a silver lining. "Now I have an excuse
for not remembering things, because my memory is probably genetically flawed,"
Guy says.
Wojcicki and Avey see themselves not just as businesswomen but also as social
entrepreneurs. With their customers' consent, they plan to amass everyone's
genetic footprint in a giant database that can be mined for clues to which mutations
make us susceptible to specific diseases and which drugs people are more likely to
respond to. "You're donating your genetic information," says Wojcicki. "We could
make great discoveries if we just had more information. We all carry this
information, and if we bring it together and democratize it, we could really change
health care."
2
DNA Testing Questions.
1. Who is Ann Wojcicki and what does her company, 23andMe, do?
2. How much does a 23and Me DNA test cost? Briefly describe how the testing is
done.
3. What does the author mean when she states “we are at the beginning of a personalgenomics revolution..”?
4. Wojcicki’s husband Sergey Brin carries a gene that puts him at risk for Parkinson’s
disease and there is 50% chance that their child will inherit this gene. Do you feel
that this couple should test their child’s DNA for this gene? Should they reveal the
test results to their child? If so, at what age should they reveal the results?
Explain you answers
5. What are some of the concerns about genetic testing, as mentioned by the author?
6. Go to: https://www.23andme.com/
How many traits does DNAandMe test for?
7. Under “FAQs” read How accurate is the data…. Evaluate how reliable the data is
that a customer would receive from 23andMe.
8. Do you think that a customer, who had not taken a biotechnology course, would be
able to understand how 23andMe data is collected and evaluated?
9. Look at the list of names on the scientific advisory board. What might this indicate
about the scientific authenticity of the work preformed at 23andMe?
10. When looking for specific genetic traits, as is often done be DNA testing firms,
entire genomes or even entire genes are not scanned. Explain why specific SNPs are
scanned for, rather than searching for entire genes.
11. What is the purpose of the Research Revolution? What disease would you like to
see more research devoted to?
12. Does DNA testing and interpretation account for the role of environmental factors
in gene expression. Use a specific example to explain your answer
13. Most of our traits are influenced by many genes and many proteins. Does DNA
testing account for this multifaceted influence. Please use an example to explain
your answer.
Extra Credit; Find and evaluate a DNA testing ad found on the Internet.
1. Information on how the genetic results are generated by the testing
2. Information on the reliability of the results sent to each customer
3. Information on the company- founders, investors, lab facilities, scientific staff
4. Information presented to each customer about how to understand the results sent
to them
5. Your analysis and conclusions about the reliability and validity of the results sent to
customers,
3