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Close look at 23andMe founder and what genetic testing means for adoptive parents

9:30 am by | 0 Comments

flickr-23andmeWhat began as an assignment to investigate and profile 23andMe Founder and CEO Anne Wojcicki took a personal turn for one adoptive parent and Fast Company contributor. In this article, a writer using the pseudonym Elizabeth Murphy examines her decision to get a spit-kit for herself and her daughter, a young child she adopted from Zimbabwe. Because of the nature of the adoption, Murphy knew virtually nothing her daughter’s medical history. Such tests could be help adoptive parents better understand or broach their children’s medical histories.

But my 5-year-old daughter, whom my husband and I adopted as a baby from Ethiopia, had started asking questions about her birth family that we couldn’t answer. Did we think they looked like her? Were her siblings fast like her? Where had her grandparents come from? With kindergarten fast approaching and with emotionally loaded projects such as constructing a family tree looming on the horizon, I thought maybe I could erase at least a few of the question marks. The same saliva that allows 23andMe to find genetic mutations that increase or decrease your odds of getting a disease also reveals a lot of data about your genealogical roots.

I went back and forth for a few days before deciding to get her tested. There’s something scary about asking for cold, hard, computer-driven data about someone you love. Did I really want to know? What would I do with the information? Would I change as a parent if I found out she was at risk for something scary, and would that change be helpful or harmful to her?

With analysis from 23andMe, she could at least understand some of her genetic make-up and health predispositions. Like Wojcicki, whose husband (soon-to-be ex) found he has a high risk of Parkinson’s from the test, Murphy decided knowing was worth the risk.

This weekend, kick up your heels and take the time to read this in-depth and inward look at how the insurance implications, privacy concerns, potential social connections and knowing your own genetic odds affect one family. She learns her daughter may develop Alzheimer’s as an adult. What should she do with the information?

When I tell Wojicki about my daughter’s (Alzheimer’s) status, her expression, alert and unemotional, doesn’t flicker. She tells her assistant to cancel a networking meeting with a Yale graduate. “The way to think about it is, half of the people don’t get it,” she says. “So if half the people aren’t getting it, why? What are they doing with their behavior?”

“People like your daughter are invisible to pharma,” Emily Drabant, a former Stanford neuroscientist who’s now 23andMe’s manager of business development and alliances, explains later. “The way these research studies are typically done is they bring in people with Alzheimer’s, give them a drug, and see what happens. Do they get better? Like a number of other brain diseases, the Alzheimer’s process starts before you start having symptoms, so the changes in your brain are happening before you are actually manifesting dementia. Most of pharma’s trials have failed, and the key takeaway is a) they may have been targeting the wrong molecule and b) they were intervening too late. So now what pharma wants to do is new trials in people who are at high risk, who are like 60 and e4 carriers. But what’s hard for pharma is this: How do you find people who don’t yet have Alzheimer’s and aren’t sick? They’re not going to a doctor. Well, we have 65,000 people in 23andMe who are e4 carriers, and we have 6,000 people in 23andMe who have the same genotype as your daughter’s.”

 

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Lindsey Alexander

By Lindsey Alexander

Lindsey Alexander is an Indiana-based freelance writer and editor covering the medical device industry. She earned a degree in journalism from Indiana University and a master's from Purdue.
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