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"Information is empowering": 23andMe CEO on the future of genomics

The Human Genome Project, completed in 2003, single-handedly transformed science and medicine. Thanks to DNA sequencing technology we are learning more about human health than ever before, gaining insight into complex diseases and unlocking mysteries about human evolution and ancestry.

Anne Wojcicki, founder and CEO of 23andMe, is one of the pioneers in the booming genomics industry. Wojcicki's company was the first to bring genetic testing to the home frontier with her direct-to-consumer DNA testing kits. While 23andMe has run into its fair share of challenges, the company seeks to empower the public and change the way we think about our health and genetic makeup.

For $99, a 23andMe genetic test promises to reveal ancestral information and raw, unprocessed DNA data. The company says it is also capable of analyzing a person's risk of some 250 conditions and diseases; however, since 2013, the FDA has barred the company from offering DNA tests for health purposes.

CBS News spoke with Wojcicki about how genomics will continue to shape research and medicine. This interview has been condensed and edited.

For those who aren't familiar with your company, can you tell us a little about its purpose?

If you look at our mission statement it's about making sure that the genome is accessible, understandable and that individuals can benefit from the human genome. We fought hard to enable the low-cost, direct-access for a consumer. The next big phase is really about benefiting from the human genome. The reason why we started this company was the research component and the fundamental belief that by really understanding the human genome we will be able to make significant improvements in quality of life, have a novel approach to therapeutics and eventually understand and detect diseases earlier.

Are you continuing to publish your research in major academic journals?

We definitely continue to publish and we will definitely continue to do research. We recognize very clearly that the genome is new and that it's important for us to understand what the impact is on the individual who is getting this data, and how can we actually best deliver that information. That's one thing that we pride ourselves on -- really being experts in understanding how to communicate complicated genetic information.

23andMe CEO Anne Wojcicki talks genetic testing, her company's goals 05:02

Scientists completed the Human Genome Project in 2003. How far do you think we've come since then and what have we learned?

I think we're just scratching the surface. One of the most exciting aspects of 23andMe is that we're enabling you to watch a revolution unfold live during your lifetime, and I think that the decoding of the genome, in my opinion, is the most fascinating discovery of our lifetime and you get to be part of it.

What do you say to the person who questions the value of personal information that genomic testing can provide?

I think there's a lot of misunderstanding about genetic information and what you can and cannot learn. One of the things we try to do is educate individuals that knowing information is empowering. If you know that you're at higher risk for something, you can eventually screen better or you can eventually change your lifestyle so that will enable you to delay or prevent the onset of a condition.

You may not know your complete family history but the reality is everyone has something, and as you get older you start to worry about these things more. Health is not sort of like a 6-month project. Health is a lifetime accumulation of behaviors. We can inspire people to be conscious and as healthy as possible for as long as possible in their life.

Your company hit a roadblock in 2013 when the U.S. Food and Drug Administration required you to halt marketing and sales of your saliva tests for health information. Do you have any updates on when your company may earn FDA approval?

We've been granted authority to market the Bloom test [screening for a rare genetic disorder]. I think there's still a long road ahead, in terms of paving the way for other kinds of direct-to-consumer tests. But I think it's a really promising signal. The world is changing. The digital world is generally converging with health care. CMS (Center for Medicare and Medicaid Services) announced reimbursements for telemedicine. I think that FDA has been incredibly engaged. We've hired a great team here and I think they have formed a great dialogue with the FDA. Hopefully we'll continue to work with them on how we can bring more tests back.

It doesn't sound like it will happen all at once. You don't think you'll get approval for your entire test that analyzes a range of medical conditions?

I think one of the greatest things that has come out of this entire FDA process is this sense that you need just a little patience. It's really fun to drive change fast, and I'm definitely an impatient person. There's a better process for driving change, especially in health care where it's a regulated industry.

When we got our original FDA letter [barring use of the tests for health screening] we sat down with an advisor to embrace this 10-year vision for how direct-to-consumer could become mainstream. I think it was really an important moment, and so I recognize it's going to take a little time to prove how consumers can, in fact, understand this information. I feel that more than anything the FDA has given us an opportunity to prove that this is feasible.

President Obama recently announced his Precision Medicine Initiative to research personalized treatments for cancer and other diseases. Do you see that as a step in the right direction?

I think it's an incredible initiative. The idea that this should be a very different initiative and defined by consumer engagement is super exciting to me. I think 23andMe has helped lead this idea that consumers should be a partner in research and not just a human subject behind a wall. Hopefully this will be an initiative that does return the data back to the individual and has consumers engaged and participating actively and defining the research and results.

Many people are anxious about their personal data being out in the open. Should we worry that our DNA information could potentially be available to strangers?

It's a real personal choice at this point. Some people choose to be more public about any kinds of conditions than others. I think that the idea of people wanting to steal your genome remains a little bit in the world of science fiction. It's a new technology and it's new science that people are becoming familiar with. It's critical for us to do everything we can to enable the privacy level that people want. Some people don't want to share this with everyone and some people want to share it with as many people as possible.

The cost of genomic sequencing continues to drop significantly. Will that help it gain wider acceptance?

As you get to a truly below a thousand dollar genome there's just more and more reason to start integrating it then and come up with practices to use it. There's a lot of education work for the world to do about basic genetic information. As much as I think that the price is a driver for acceptance we've also reached a point where we actually need to put more of a focus on the education or we're not going to see rapid adoption.

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