23andMe
If 23andMe has your genetic data, it’s selling a big part of you - Lily Hay Newman
image by: Brian Fey
HWN Suggests
Getting your genetic disease risks from 23andme is probably a terrible idea
The central problem is this: 23andMe aims to give you all the information you want about your genetic background, but they don’t want to be responsible if that knowledge actually impacts you. Are you upset by results that indicate you’re likely to spend the last years of your life dependent on a caretaker, shaking uncontrollably, and losing the ability to speak? Talk to someone else. You’re not 23andMe’s problem anymore. They’re happy to direct you towards the resources you need to find a doctor or genetic counselor to talk to, but beyond that? They’re out. We live in a world where basically anything can be ordered off of an approachable-looking app with little more than a finger swipe, but…
Resources
What Is 23andMe Doing With Your DNA?
In this conversation, Kara Swisher presses Wojcicki on the ethical, privacy and security questions intertwined with the 23andMe business model. They discuss what the rise of genetic testing might mean for today’s 2-year-olds and how the United States is faring in a “genetic information race” with China.
The Risks and Benefits of 23andMe DNA Analysis
Before you spit into that vial and mail it away, make sure you understand the risks of what you're about to undertake. This devil's bargain is about much more than learning about your genealogy and health traits. It could comprise your ability to get life, disability, or long term care insurance or severely affect the rates you pay for those services. It could also impact your genetic relatives, even though they did not personally undergo testing. 23andMe is not the only direct-to-consumer genetic testing service, but it is the largest company in the market. The company is a for-profit, publicly traded organization with major financial backing from pharmaceutical giants GlaxoSmithKline, Johnson & Johnson, and others. Those multi-billion-dollar drug companies obviously seek your valuable genetic data. When you sign up for the service, you are agreeing to sell 23andMe your genetic information so that they can re-sell that biological data to others. In addition to the ancestry benefits that 23andMe touts, consumers of DNA testing should understand possible medical, legal, and personal risks of getting such testing.
‘There are no serious safeguards’: can 23andMe be trusted with our DNA?
What’s next for 23andMe? Most people know the biotech company as a genetic testing service. Stories of people sending their cheek swabs off in the mail only to discover that a parent who raised them wasn’t their biological one have become a kind of millennial horror genre. Of course, most 23andMe experiences aren’t that dramatic: the company says more than 14 million people have used the service in hopes of learning more about their ancestry.
23andMe’s Fall From $6 Billion to Nearly $0
At the center of 23andMe’s DNA-testing business are two fundamental challenges. Customers only need to take the test once, and few test-takers get life-altering health results. Wojcicki’s most ambitious bet is developing drugs using 23andMe’s stockpile of more than 10 million DNA samples that test-takers have agreed may be used for research. But getting new drugs to market is expensive and takes years.
23andMe Is Under Fire. Its Founder Remains ‘Optimistic’
Wojcicki has saved 23andMe from the brink of failure before—notably after the US Food and Drug Administration ordered the company in 2013 to stop marketing its health risk assessments to customers until the business could validate them, which took several years. But a decade later, the challenges are bigger and the solutions less clear: 23andMe needs to rebuild trust after its data breach, convince customers that it is a subscriptions business, and find new investors and industry partners to support its forays into drug development.
23andMe had devastating news about my health. I wish a person had delivered it
Last summer, I thought it might be fun to have my DNA analyzed. Two companies, 23andMe and Ancestry.com, had popped up again and again in my social feeds, so I decided to join the party and see if I could blame my penchant for salty food on my genes. And as a journalist, I was just naturally curious.
23andMe Is Making the Big Bucks Off Customers’ Genetic Data
23andMe seems to be making its databases available for scientific research, which feels pretty comfortable and even laudable. But at eight years old, the company doesn’t exactly have an extensive track record. I reached out to 23andMe for information about any bioethical or institutional review mechanisms it may have, but the company hasn’t responded yet. It writes on its consent information page, “There is a very small chance that someone with access to the research data or results could expose personal information about you. 23andMe has policies and practices in place to minimize the chance of such an event.” If 23andMe has your genetic data, it’s selling a big part of you.
23andMe Rides Again: FDA Clears Genetic Tests To Predict Disease Risk
23andMe, a genetic testing startup that captured the national imagination a decade ago, appears to have fully emerged from the wilderness. The Food and Drug Administration has cleared the startup to market $199 genetic tests that will tell consumers not whether they have a condition like Parkinson's or Alzheimer's, but how likely they might be to get it.
23andMe Wants Its DNA Data to Be Less White
The company is offering free kits to researchers studying populations in Africa, Asia, and elsewhere—but the ethics are tricky.
23andMe Will Resume Giving Users Health Data
The new health-related information 23andMe will provide is called carrier status. That relates to whether people have genetic mutations that could lead to a disease in their offspring, presuming the other parent has a mutation in the same gene and the child inherits both mutated genes. There will be information on 36 diseases, including cystic fibrosis, sickle cell anemia and Tay-Sachs. Whether that information, which is of most interest to people planning to have babies, will be compelling is unclear, and there are separate carrier tests available through doctors from other laboratories. Ms. Wojcicki said 23andMe still hoped to gain F.D.A. approval to provide information on health risks, but she would not estimate how long it might take to win that approval.
A Day in the Life of Anne Wojcicki
The multi-tasking entrepreneur and CEO of 23andMe, the personal genomics company she co-founded in 2006, spends a lot of time on her feet.
Can Genetic Counselors Keep Up With 23andMe?
The rise of spit kits is leaving consumers with lots of data and few answers. Genetic counselors could help people understand these results, but there aren’t enough of them to go around.
The 23andMe data breach reveals the vulnerabilities of our interconnected data
On Oct. 6, news broke that 23andMe, the genomics company that collects genetic material from thousands of people for ancestry and genetic predisposition tests, had a massive data breach. But as it turns out, the company’s servers were not hacked. Rather, hackers targeted hundreds of individual user accounts — allegedly those that had repeated passwords. After gaining access to the accounts, hackers could leverage the “DNA relatives matches” function of 23andMe to get information about thousands of other people.
The rise and fall and rise again of 23andMe
Wojcicki's competitors give her credit for showing that there may be a business in gathering and selling genetic data. “I'm a big admirer of 23andme and what they've done for the entire industry in pioneering both consumer genetics and this difficult regulatory road,” says Mirza Cifric, chief executive of Veritas. 23andme is still the only company offering FDA-approved direct-to-consumer health tests and no competitors have indicated a willingness to go down that path.
What Did You Learn From 23andme?
When I was 41, I found 23andMe and joined right away. It was thrilling for me to be able to finally peer into my genetic history and see a story emerge that had never been revealed to me. When my results came in, I was like a kid at a birthday party. As I opened the Web page, these words greeted me and sent a chill down my spine:
Getting your genetic disease risks from 23andme is probably a terrible idea
Ignorance may really be bliss.
23andMe
23andMe's mission is to be the world's trusted source of personal genetic information.
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