Are Genetics the Key to Personalized Healthcare?

by · March 11, 20149 comments

There was one session that really stood out for me at #SXSW this year. Anne Wojcicki, CEO of 23 and Me addressed all of the controversy surrounding their genome mapping product head on. 23andMe.com takes the saliva from their customers and maps a slice of their DNA. They map everything from your ancestry, your drug response, your disease risk to your inherited conditions and traits. And they do it for a price that is shockingly low, $99.

This has made getting a DNA profile affordable for the masses, but it has also caused controversy. This resulted in the FDA forcing 23 and Me to stop providing health related genetic tests.  The FDA’s concern primarily surrounds what consumers will do with the information when they receive it. How would you handle finding out that you have a genetic marker for cancer, for example? It seems that the FDA thinks we might just jump off a cliff or undergo unnecessary medical treatment. While the debate over the FDA’s involvement is interesting, what I found more interesting is the debate on commercializing preventative healthcare and who owns our data.

Do you have a right to your genetic data?

Anne Wojcicki at #SXSW 201423 and Me argues that consumers should own their data. They should have access to their genetic profile and be able to use it to inform healthcare decisions made with their physician. This conversation expands beyond just having access to your genetic profile, but also into who owns your normal medical records. Have you ever tried to get a copy of your medical record from your doctor’s office? They don’t make it easy and many charge you for it. As consumers, I believe we should own all of our health care data and it shouldn’t be difficult to get access to it. And I would argue we have a right to know what’s in our DNA and what our risk factors for disease are. Even further, while I think disclaimers on the health assessment reports 23 and Me provides make sense, multiple people in the room said they wanted to see what their health assessment would look like and were upset that they were being prevented from getting access. There was a frustration that the FDA ceased the service rather than forcing proper disclosures.

Could understanding your DNA improve your health?

Anne told amazing stories of customers who found out they had allergies that were affecting their quality or life and people who had dangerous risk factors for clotting and adverse reactions to anesthesia, but she also told stories of people who found out they had genetic markers for cancer. Understanding our risk factors, allergies and how we will respond to drug therapy could allow our physicians to truly personalize our health care options. Today, doctors use the approach of testing how we respond to medications and there is a lot of guess work in medicine. Our genetic profile could unlock the mystery of what we will and won’t respond to before we put unnecessary drugs in our system. This was very compelling to me. The reality is that many of us could have underlying conditions that are virtually symptomless that we may never know we have. Knowledge is power. The more we know about our bodies, the more we can work towards living a healthier lifestyle.

Could mapping genomes cure diseases faster?

23andME and the Future of GeneticsThere is a tremendous advantage for the medical community in having access to the hundreds of thousands of genetic profiles 23 and Me has created. Their database of over 600k genomes has the potential to shorten research timelines on diseases that are crippling our country. They essentially have the power to leverage big data to cure disease. Anne told the story of how long it takes to conduct research on a theory for the role a genetic marker has in disease and disease prevention. Typically, this type of research would take years, but they have been able to get answers in weeks. Anne told a story about a specific marker that researchers thought related to prostate cancer. Within a couple of weeks 23 and Me was able to eliminate that marker as a possibility. Consider how much research funding was saved as a result of being able to get the answer quickly. Their database and databases like theirs could have a tremendous impact on the ability to find and research viable cures for diseases.

I’m certainly not a physician or a scientist, but as a consumer I want to have access to my data, I want to own my data, and I want to allow organizations like 23 and Me to use my data to push research farther, faster. Consumers have long been in the passenger seat of their healthcare. While we have access to all types of data and information on diseases and disease prevention, we haven’t had access to the unique story our DNA provides and how it can inform our healthcare choices. I’d argue it’s time for us to take a driver’s seat in our health care and allow our physician’s to be in the passenger seat. Ultimately, no one cares more about our health than us. While I’m not a proponent of self-diagnosing and not working side by side with a physician, I do believe that we can make better decisions together. And I believe DNA mapping may be the first step in truly personalized healthcare that can drive better patient outcomes. I sure wish the FDA would get out of 23 and Me’s way, so we could make more informed healthcare decisions. One of the most powerful statements Anne said was, “Who makes money off of me not being sick?” No one. But there sure are a lot of companies who make money off of illness.

Is it time to shift the balance of power in healthcare? Do you think the FDA needed to step in? Do you think you should own your data? Do you think DNA mapping is an important step in personalized healthcare? Leave a comment and join the conversation.

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About Nichole Kelly

Nichole Kelly

Nichole Kelly is the CEO of Social Media Explorer|SME Digital. She is also the author of How to Measure Social Media. Her team helps companies figure out where social media fits and then helps execute the recommended strategy across the “right” mix of social media channels. Do you want to rock the awesome with your digital marketing strategy? Contact Nichole

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  • Brendan MMcgroggan

    I had my DNA testing done by 23andMe and I absolutely enjoyed my results. It was fascinating to see everything mapped out for me, especially considering I did not have to go to a lab to have it done. I’ve read all the controversy about these tests and the FDA’s involvement and I still side with 23andMe.
    First of all, any doctor who would perform any drastic procedure for a patient that is purely based on a $99 test should probably not be a doctor at all. Second of all, people do indeed have a right to their genetic data without having to go to a government approved official to obtain it. Third of all, the FDA has taken a backseat plenty of times when it comes to the health and well being of the American public. Are they actually concerned about public health? Or are they just cherry picking their battles overall and this happens to be one of them?
    Lastly, and most importantly, I believe in the mission of 23andMe. I believe that mapping genomes over time will lead to the curing of more diseases. We’ve got to start somewhere and 23andMe decided to step up to the plate. To them and their supporters I say, thank you!

    • Nichole_Kelly

      Brendan – I agree 100%. I wonder if the FDA is truly concerned about our health. If they were, wouldn’t they shut down all of the companies that are doing this type of testing and not just 23 and Me’s health assessment portion of the report? I’m going to get mine done, but now I’m wondering, will my assessment tell me if I have allergies or is that considered part of the health assessment? Will it tell me if I have a cancer marker with at least enough detail to do research? Or will I get a raw data report and have to understand what those silly little letters and numbers mean? I’m not sure, but I will find out. Thanks so much for sharing your story Brendan!

      • Brendan MMcgroggan

        Thank you Nichole! I found that the 23andMe results were explained very well, particularly the health assessment. They show the average risk for certain diseases directly alongside each individual result. Based on my personal medical history, I found the results overall to be very accurate. Another bonus is that you can download the 23andMe app and access your results at any time.

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  • Matt

    Very fascinating. I cannot side with the FDA or any institution hindering a person from his/her own information. However, it is easy to see how such information could be misused and exploited. We’re just scratching the surface. Keep up the good work.

  • Ryan Squire

    Over and over I heard a theme from Austin that consumers are fed up with not having access to their data; and the companies that find a way to give people control and (gasp) involve people in the interpretation of that data are the clear winners (no matter what federal regulators think). I agree that if you get this information, you should be participating with a medical professional to interpret results (there’s more than just your genes… what you ingest, how much you sleep, your stress level), but I’d question how many physicians would consider themselves qualified to interpret the results of these tests as a basis for that conversation?

  • Devon Landman

    I agree when you say, “The more we know about our bodies, the more we can work towards living a healthier lifestyle.” It sounds like 23 and Me’s gene mapping will change the entire health care game. Unfortunately, I think since it saves so much money, physicians aren’t going to be for it. Another reason why I don’t think physicians will be an advocate of gene mapping is because it takes away a lot of their power. Like you said, consumers are typically in the “passenger seat,” whereas physicians are in the “driver seat.” With this new invention, we have more control over our health data and many other aspects, which affects how these doctors are going to view this.

    -Devon Landman
    Platform Magazine Editor/Writer

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