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7 Things You Should Know About The Future Of Your Genetic Data

The Huffington Post The Huffington Post 6/11/2015 Alexander Howard

Over the last decade, more than a million people have spit in a vial, sent it to 23andMe and received a report on what their personal genetic information says about them. In the decade to come, many more may join them using the first consumer testing kit approved by the Food and Drug Administration.

On Oct. 21, 23andMe launched its new personalized DNA testing product. A week later it released a smartphone app that provides quick access to results and offers current customers the ability to contribute to research, if they choose. The moves come just under two years after the FDA told the startup to stop marketing its genetic testing product because it failed to demonstrate that the underlying science was valid.

As the Wall Street Journal reported, the FDA hasn't given 23andMe permission to claim that its $199 direct-to-consumer genetic test can show you your risks for breast cancer, Alzheimer’s disease or adverse drug reactions, as it once did. What has been approved is the company sending you a research report that shows if you're a carrier for 36 other rare diseases, provides information about your ancestry and offers insight into how your genes make you, well, you

The FDA's approval hasn't laid to rest concerns about what 23andMe will do with a huge database of genetic information. Some of these fears may be heightened by lucrative partnerships with pharmaceutical companies. In an interview with The Huffington Post, 23andMe co-founder and CEO Anne Wojcicki emphasized consumer choice regarding how genetic data would be used and answered a raft of other questions about privacy, data use and transparency in the biotech industry. 

Here's what Wojcicki told us about genetic testing today and what she sees coming in the future:

1. Genetic knowledge can empower consumers to make more informed health care decisions

Getting your personal genome could alert you to potential health risks for you or your children. In the future, some of these conditions may be treated or prevented with genome surgery. For instance, doctors just used an experimental genetic therapy to slow down cancer in a one-year old baby in London.

There's also the existential question of whether you want to know how likely you are to develop different diseases or disorders. Angelina Jolie's decision to have a double mastectomy after learning through a genetic test that she had an increased risk of breast cancer is a well-known example of someone taking action on what she learned. 

 

2. Potential benefits from personal genome testing will be paired with new privacy risks

Creating a digital record of your personal genome is a potentially risky endeavor.

People lose their mobile devices all the time, and we have huge challenges with passwords. Genetic information, like a digital representation of a fingerprint or iris scan, could be lost or stolen.

"We're really aggressive in terms of how we're protecting your privacy and also recognizing that people want to control their data," Wojcicki said. "Privacy is defined by the individual, in terms of who they want to share with and who they do not want to share with. It is our job to make sure that we are empowering them and respecting their privacy choices."

 

3. Huge databases of genetic material will be catnip for law enforcement agencies

Once digitized, your personal genome could be of interest to police and intelligence agencies. In October, Fusion News reported that law enforcement agencies have sought 23andMe data. Not long afterward, 23andMe published its first transparency report.

Wojcicki told HuffPost that the company has never had to hand over user data.

"We have always said that we will do everything we can to protect your privacy," she said. "If there is a subpoena, we will do everything we can do prevent [disclosure] that's legally acceptable. It's critical that people trust the company and believe in the privacy of their data. It's one of the reasons that we've said it's important for an individual to own their data instead of an insurance company owning their data, because then the control is your hands."

23andMe's policy is to delete the information of any user within 30 days of receiving a request.

 

4. Design is crucial to ensuring people understand their genetic results 

Wojcicki said that one of the biggest benefits of working with the FDA was an improvement in the company's products through months of iterative user testing. 

"Presentation of information in a slow, really clear format makes a huge difference for customers," she said.

23andMe says it has a comprehension rate of 90 percent or higher, meaning just about anyone should be able to read and understand the service's results.

 

5. Laws that protect consumers against discrimination are critical for the genomics industry 

A decade ago, if your personal genome showed that you were at high risk for developing a chronic disease or lethal disorder -- and insurers ever became aware of it -- getting life or health insurance could be a problem. In an age where data breaches and hacks have become commonplace, consumer genomic data leaks are sadly not as far-fetched a prospect as they once might have seemed.

An important provision in the Patient Protection and Affordable Care Act -- aka "Obamacare" --  is that Americans now cannot be denied insurance because of pre-existing health conditions. While people focus on subsidies or accountable care organizations or marketplaces, this provision will be incredibly important to consumer protection in the years ahead.

"I think in the United States, the Affordable Care Act and the Genetic Information Nondiscrimination Act made a big difference for consumers," said Wojcicki. "In most other countries around the world, where there's a single-payer system, there's not as many of these issues, because health care has universal access." 

People who live in countries without universal health care and non-discrimination laws on the books, however, may want to think twice about genomic testing, if and when these kinds of services become available locally. After its regulatory setback in the U.S., 23andMe turned its focus to international markets, beginning in Canada and the United Kingdom and considering Western Europe and southeastern Asia.

"Without a doubt, people are not going to be genotyped if they don't feel comfortable," Wojcicki said. "One thing that I've seen is that governments understand that we can't move forward with genetic technology and the genomic revolution if people are afraid of being genotyped."

 

6. Transparency is critical to the health of the biotech industry

23andMe's settlement with the FDA has put to rest many questions about the scientific accuracy of its tests. That isn't true elsewhere in the biotechnology industry.

Theranos, a Silicon Valley startup that achieved a stratospheric valuation based on the promise of a simpler blood test, built its business over the last decade without disclosing how, exactly, its core technology worked. In October, the Wall Street Journal reported that Theranos was not using that technology for all but one of its tests and had stopped collecting blood samples at the FDA's request. The ensuing fallout has called into question whether Theranos' test had been properly vetted by independent experts.

"As new technologies come out in health care, it's really important for everyone that there's transparency," Wojcicki said, when asked about the controversy. "When I look back on 23andMe and everything that we've done from day one, we've had white papers out there, we've been transparent with our customers, we want them to be engaged in the research."

"We fight really hard with our researchers to make sure that data is published in open-access journals," she added. "Transparency is really important for us. It's transparency that's going to enable our entire industry to move forward and adopt more consumer practices. Frankly, as more and more consumers are taking control of their health, they want that transparency."

7. Mobile health apps are only the beginning of the changes in health care

A look at 23andMe's new iOS app.

Within five years, Wojcicki predicts that many more consumers will have instant access to their own data, tests and on-demand health care wherever they are via their mobile devices.

"I think that health care is going to radically change from this episodic visit to a medical center -- to something that you engage with in a regular, frequent basis, as comfortably as going to the grocery store," she said. 

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