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?
23 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?
There 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.