What Personalized Medicine is to Me

Charles Mueller

I hate our current medical system and I hate that industry runs it. I hate it because the medical field and medical industry all abide by a central dogma that “the answer to failures of a biological system (the human body) is a pill.” No. The answer to biological system failures is a biological system solution. It is learning how to manipulate your entire biological system and not just the one part you are concerned about. It is about learning to use the body’s systems to fix itself.

This is our fundamental problem with understanding disease. We subscribe to the belief that a diseased liver is an isolated problem and all you need to focus on is the liver. We forget the body is connected and we do not even explore solutions that might involve unorthodox approaches that manipulate entire systems rather than organs. We need a new dogma in medicine and the idea of personalized medicine might be just what we need.

There is a lot of talk right now about personalized (or precision) medicine after the President revealed his Precision Medicine Initiative. I think this initiative fails to recognize what personalized medicine really is and what is needed to make it real.

To me, personalized medicine is understanding how all the cells of the body communicate and respond to changes in the environment. The question though is how do you figure this out?

The first step is to identify the key metrics you need to understand the connectivity of the body’s systems. Once you figure this out, the next step is to monitor these in groups of people. Why groups of people? We cannot perform all of the controlled human experiments that would help us understand the body as a system because they would be morally and ethically wrong. So instead, it is about acknowledging that everyone makes choices that cause changes in their body. Your life is one giant experiment. Many people are probably similar to you and make similar choices. Many are similar at the biological level and make different choices. People are running around experimenting on themselves all of the time and nobody is asking them to come in so we can take some measurements and figure out what they are doing to themselves. This is the key. Let people be themselves and use Big Data analytics on the massive amount of data that is created from monitoring them. Monitor what the best available science tells us is important, group people into categories based on their metrics and life choices, and then figure out how different choices within a group result in health endpoints.

This is how collective monitoring results in personalized medicine. With such an approach, you will begin to really understand the system level of the body and how it responds to different life choices and the mechanisms for how those life choices alter human health.  Then it is just a matter of looking at you and what you have done to make highly informed predictions about the future of your health. You cannot just study one person in detail for the same reason that you cannot study one bacterial cell and say now you know everything that that strain does.

The President’s Precision Medicine Initiative plays into the existing dogma that I loathe. It fails to see the forest for the trees. It is primed to use Big Data analytics on personal data, like genetics, to identify which pill works best for you. There is reason they chose the word precision rather than personal. “Personal” would imply a new dogma, one that really focused on you and not one that focused on the precise pill for you.

The New ADD: Attention Deficit Drivers

Charles Mueller

What do a bullet fired from a gun, and a car with a distracted driver behind the wheel have in common? They are both metallic objects traveling at high speeds with the potential to kill anything in their path. When you drive distracted you are basically turning your car into a massive stray bullet. Think about that. If you are traveling at 55 mph and you take your eyes off the road for 5 seconds, then you will have just driven the length of a football field essentially blind. It’s dangerous and irresponsible. We need better laws and rules to discourage distracted driving.

When people think about distracted driving, most people think about texting. I’m guilty of this and everyone I know is too, despite the fact we’ve all heard horror stories about what can happen when people text and drive. One of the more publicized ones is about teenager Liz Marks, a former model who in her own words uses her cell phone “…every second, every minute, every hour”. Liz Marks was distracted by an incoming text from her mother and slammed into the back of a stopped tow truck while she was trying to read it.  Liz survived the crash, but she is no longer a model for beauty, she’s a model for not texting and driving. She is blind in one eye, cannot smell, is partially deaf, and has a scar down the left side of her face forever reminding her of that tragic day.

Distracted Driving

The sad part is Liz’s story isn’t unique. In 2012 alone, there were an estimated 421,000 people injured (and 3,328 killed) in motor vehicle crashes involving a distracted driver. The DOT describes distracted driving as any activity that is not focused on driving the car; this implies texting, talking, eating, drinking, grooming, adjusting the radio, or even using the GPS. People have been eating, drinking and listening to the radio in cars for more than half a century so distracted driving isn’t new. If it is not new, then why is it so much more of a problem today?

In stories like Liz’s, the main culprit wasn’t so much the phone as it was her instinct to check her phone as soon as it buzzed. When Liz described what her phone meant to her she said, “If I didn’t have it (her phone) I would freak out because I couldn’t connect with my friends”. Thanks to companies like Facebook, social life has never been more important to most than it is today and our phones are direct access into this world.  When we can connect to so many people, so rapidly, it means we are constantly pressuring ourselves to be “available”; we continuously feel the need to check-in. Maybe that is why since the year 2000, according to the National Center for Biotechnology Information, human beings average attention span dropped from 12 seconds to 8 seconds (one second shorter than a goldfish).

Think about what this means. Without any distractions in the car, human beings today are more dangerous on the road than they were 15 years ago simply because we can’t focus on the road for as long as we used to. There is science that backs this claim and shows that people with attention problems are at a higher risk of car crashes than those that are not.  Furthermore, the latest neuroscience is helping us understand why. When we look at the brains of distracted drivers we see that they are literally disengaging their brain from the task of driving; this is the same as saying that when we are distracted and driving we may as well be sitting in the passenger seat with cruise control on.

I know this sounds crazy, but Liz Marks is lucky. She is lucky to be alive and lucky she ran into a tow truck, and not a crosswalk full of people. She knows this and is a now huge advocate against texting and driving. Her words to the world are, “If you get a text, don’t look at it. It’s not worth it.” Her story is powerful and her message is strong, but it’s not going to stop people from texting and driving unfortunately. What we need are federal regulations and laws that make the consequences of certain acts of distracted driving, like texting, on par with the consequences of drinking and driving. This seems logical since the evidence suggests the risks are the same. We should also make it a requirement to incorporate some sort of distracted driving test into the process of obtaining a state issued drivers license. We require a vision test in order to get a drivers license, and if you are impaired we stamp your license to let the world know. Driving while distracted is the same as driving blind, so why aren’t we testing for this?

Liz Marks story tells it all.  It’s time we focus our attention on keeping ourselves safe.  Don’t get distracted by the side issues. The science is clear and we need a federal policy to protect our citizens from the dangers of distracted driving.

Not Vaccinating Your Kid is Like Killing Your Neighbor’s Kid

Mike Swetnam

Vaccinations save kids! The science is so clear that it should not be discussed. Those that say there is any risk to vaccinations are like the people in the 1600’s who said the world is flat. It looks flat, but science has proven it is not. Even if I show a picture from space to these people, they will think the world is flat. The people who think that vaccinations are tied to autism or whatever are Flat-Worlders who do not see the great advantage that science has brought us. They do not appreciate the science of medicine that allows us all to live decades longer than those who thought the world was flat. They do not see the clear evidence that all of society is protected when you vaccinate your kid. The scientific picture is clear. Vaccinations save lives.

They save the lives of the children vaccinated, but they also save the lives of the kids too young to be vaccinated.

There was another report of half a dozen 6 month olds (too young for the vaccinations) getting measles. They might die. They got this disease, that was almost eradicated, because you did not vaccinate your kid. You, the parents who believed the witchcraft story of vaccinations being the cause of autism, not only risked the life of your child but you risked the life of even younger and more helpless infants.

You should be ashamed.

Let’s Make It Personal

Brian Barnett

We need to take a national investment in the health of our nation seriously. The President’s new Precision Medicine Initiative needs to coordinate with the existing BRAIN Initiative, develop a technology roadmap, and boost its funding in order to make good on the promise of personalized medical treatments for all. A piecemeal approach, with modest investment in personalized medicine and an even smaller, separate investment in understanding the brain, are completely insufficient means to achieving success.

The listed investments for the Precision Medicine Initiative are focused on administrative and infrastructural processes, which are only one piece of puzzle. These infrastructure investments are just as applicable to the BRAIN Initiative because neuroscience research is facing its own issues in data acquisition and interoperability. Serious coordination between these two Initiatives will make big data biology a reality.

Achieving personalized medicine and unlocking the mysteries of the brain will absolutely require new tools. Infrastructure is important, but these systems alone will not lead to success. Data sharing is no substitute for new research tools and technologies. We need improvements in genetic analysis and high resolution imaging technologies if we want to improve our level of care for our loved ones. A roadmap for the research directions of these Initiatives will provide insight into the kinds of technologies that can be developed and then enable even more successful research.

With the right investment, the Precision Medicine Initiative and the BRAIN Initiative will be great pathways to our better future. The President’s proposed 2016 budget puts only 1% of all discretionary spending into science funding. A total investment that matches America’s previous national investment successes (including the Apollo program and the National Nanotechnology Initiative) would require at least $4 billion per year. This is 20 times more than what we are currently investing in each field of neuroscience and personalized medicine. The time is now to build on these initiatives and to ensure their success. Coordinating the BRAIN Initiative and the Precision Medicine Initiative, developing impactful new technologies, and investing heavily in neuroscience and biology are the only way to deliver personalized medicine to each of us.

The Vaccination Decision Is Already Made

Kathy Goodson

There is no room for debate on vaccination. The scientific validity of the measles vaccine is not in question. The best available science clearly and firmly states that vaccinations are safe, and more importantly, necessary to save lives. Measles, Mumps, and Rubella (MMR) vaccinations should be mandatory to preserve the health and safety of the masses for the benefit of society.

The Centers for Disease Control and Prevention and U.S. Department of Health and Human Services set the stage for vaccination requirements; however, the messages they communicate are not always clear. There should be no veil of secrecy behind whether and why a vaccination is recommended or required. Vaccinations for a disease are required if the disease possesses the potential for outbreak. U.S. citizens are required to have MMR vaccination, but you may currently seek a waiver for exemption. However, becoming a legal U.S. immigrant makes the same requirement without exception. This is not a clear message. The ramification of not being vaccinated against MMR needs to be effectively communicated and reinforced to all U.S. citizens. The key message to U.S. citizens is that vaccination is necessary to preserve our current way of life.

Americans have been flooded by information regarding a relationship between autistic disorders and vaccines. The 1998 study linking autism to vaccines has been retracted and its author has lost his medical license. In addition, the World Health Organization does not recognize an association between MMR vaccine and autism. However, the fuel given to the vaccination debate has been limitless. Celebrities, political figures, and American families have thrown up their arms and have said no to vaccination. Even in the face of legitimate countering scientific evidence, the argument against vaccination because of autism remains rampant. The great debate of parents vs. the state, government, etc. in regard to children and medicine is not a new one. History has given us plenty of examples of parents refusing medical treatments to their children. Parents have denied their permission for blood transfusions and chemotherapy treatments for cancer. The response by the government has always been of the common thread to do what is best for the child. We have passenger laws for children to make sure they are safe for the child. We have online privacy laws to protect the personal information of minors. All of these laws, like a requirement for vaccination without exemption, make the population safer from the actions of one individual. The end goal is always safety of the population.

Childhood vaccinations are absolutely requirements for public health and public safety. Time and time again, they have proven to be the most successful (and cost effective) tools of disease prevention. In order to protect sustained containment of a disease, there has to be a critical mass of the population vaccinated against the disease. In the case of the measles, this value is between 84 and 94 percent. The national rate of vaccination is 92 percent; however, the point is moot because regional demographics for measles vaccination vary widely. This variation becomes significantly relevant when factoring in the American rate of travel. Falling below the critical mass or herd immunity of vaccinations opens the U.S. to a resurfacing of diseases once thought of as gone forever. It puts everyone at risk.

In 2014, we had a record year of measles cases in comparison to the decade prior. Is this a big deal? The answer is yes. Imagine continuous cases of exposure events like the recent at Disney. Resurfacing of any endemic threat of disease that we thought once conquered would severely affect our entire population. Vaccines are necessary for saving lives. People still die from diseases such as the measles, and even those who do get vaccinated may contract the disease upon exposure. Forgoing vaccination exposes not only a single person, but also countless others. Decision makers, the public, and the media all have a life or death stake in the policy of vaccination. Incomplete MMR vaccination is an extreme public health and public safety issue, and should be treated as such.

Ignorance+Stupidity=Defeat

Ignorance+Stupidity=Defeat

Mike Swetnam

President Obama’s commitment to close Guantanamo is both stupid and based on ignorance. Let me explain.

First, Ignorance. Many claim that we need to close Guantanamo because it is a primary recruiting tool for Al Qaeda. This is totally false and clearly the argument of the ignorant who have never read any of the AQ recruiting posters or studied AQ. Just the opposite is true.

Al Qaeda’s main recruiting message has always been that the west and the USA in particular are the great Satan because we allow women to drive, read, go to school, and vote. They say we are the great Satan because we do not base our law on Sharia law. Their message is that we are the great Satan because we provide human rights based on humanity not on an Islamic theocracy.

Their recruiting message is that we are the great Satan not because we deny human rights at places like Guantanamo but because we guarantee human rights! Human rights they are opposed to.

Further, AQ’s main recruiting message also includes the idea that young Muslims can defeat this great Satan (the USA) because he/we will give up just as we did in Viet Nam and just as the Soviets did in Afghanistan. So by closing Guantanamo we will actually be proving that their recruiting message is correct! We will be, in one sense, giving up.

The existence of Guantanamo is not a recruiting aid to AQ, but closing it clearly will be.

Stupidity. It is stupid to call Guantanamo a prison in the context of USA prisons. It is a POW camp not a prison. The Al Qaeda fighters/Generals held there are not “detainees”, or prisoners, they are POWs. The prisoners are not US citizens they are the leaders and generals of a faction that we are at WAR with. It is stupid to not acknowledge the great danger of releasing the remaining Guantanamo POWs while we are still at war.

It is equally stupid to pretend this war is ending. It is just getting started!

We have released all the low level guys already. Those were the ones we thought would not go back to fight against us, yet 30% did. We kept the ones that we were sure would go and fight against us. The remaining 150 are the leaders and generals of Al Qaeda!

The remaining 150 would certainly return to the war against the US. Most have said so, forcefully, to those guarding them in Guantanamo.  They would help lead the war against us. If that doesn’t convince you, note that 72 of the 150 are from Yemen which is currently one of the two most activity AQ terror centers in the world. These 72 where/are the leaders, founders and creators of Al Qaeda in the Arabian Peninsula (AQAP). It would be total stupidity to release the enemy’s generals while in the middle of the war!

Defeat. Human history is well stocked with examples of world wars fought over ideologies. The ideology of the Holy Roman Empire that spawned WWI. The ideology of Fascism that brought on WWII. And now the ideology of Sharia Law vs. human rights which has embroiled us all in what is surely WWIII.

Victory will demand the same clarity and resolve that triumphed in WWI and WWII. We would never have won WWII if we stopped after the Battle of the Bulge or Midway. Just so, we will not win over extremism today if we declare victory now. There is too much yet to do.

Closing Guantanamo would be ignorance added to stupidity. Any country or government that exercises Ignorance plus Stupidity will see Defeat.

The 28th Amendment: Part 1 – The World is Watching You

Charles Mueller

In the very near future, everything you do, everything you say, and everything you think will be monitored, studied, and analyzed in order to understand what makes you ‘tick’.

Look no further than the infamous story about how Target figured out a father’s teenage daughter was pregnant before he did. By closely monitoring this young girl’s spending habits, Target was able to predict this girl was pregnant and send her coupons for diapers. This ability is not malicious in any way, it is just a new kind of creepy. It becomes a little more creepy when you realize there currently are not any rules or laws in place to protect us from someone using this same type of personal data mining to try and do something like raise your health insurance premium because your shopping habits suggest you are eating unhealthy. How exactly are we going to ensure that these capabilities are only being used to enhance our society rather than take advantage of it? Our leaders today are not taking this issue seriously and it means that we need to take matters into our own hands. A good start may to be to push for a constitutional right to own the digital information we produce (our data) when we engage with the world through the Internet.

The Internet has revolutionized how marketers and advertisers communicate their messages to individuals and consumers. This has all been enabled by the exponential increase in data produced by individuals using digital technologies like smart phones. Our every move in the digital world is tracked and the data collected by what the marketing industry calls a 3rd party data company, such as Axciom; essentially a big data crunching machine that finds patterns that help marketers and advertisers understand what makes us do the things we do. Many of us have no idea we are opting in to this type of profiling nor do we care because often it is used to sell us things that we believe we want.

The digital technologies that make it all possible will continue to evolve and this type of individual targeting will become easier as more users wear their devices.  Big data is no longer just assisting marketers; it is defining how they approach their jobs. How will the world change when big data can be used to create targeted, personalized digital content in real-time? How far away is a future where my commute to work is so well analyzed by big data companies that they can generate and deliver messages at the most opportune times to get me to buy Starbucks coffee instead of Dunkin Donuts?

It will be an incredible power to be able to deliver an optimized message that makes an individual “act” in response to receiving that message. Who decides what messages are sent through all the various digital platforms that are becoming more ubiquitous in our lives? We have already seen the influence big data and social media can have on a presidential election. Will future presidents be elected because they literally raised the most money? Will access to my thoughts simply be granted to the highest bidder? Who is making sure those watching and studying my digital life are using that information for things that are in my best interest?

The role of the government is and has always been to protect its citizens’ rights. In the digital future, the most precious trait of the citizen may be their data. Ensuring that individuals have a constitutional right to own their data could be a way to protect consumers from potential practices of malicious real-time big data analysis. Data ownership will only make it easier to take advantage of the current methods that allow users to opt in or opt out of the powerful targeting mechanisms continually being developed. Having the power to share your data with certain companies could become a type of voting system; you share your data with companies who use it to enhance your experiences and deny it to those who do not.

The digital age is rapidly evolving and the agencies that historically advise Congress on issues regarding consumer protection still have not figured out how to properly respond. We need leaders who understand this and are willing to create policies that protect us. Establishing the ownership of digital data to the citizen is a potential step in the right direction. The 28th Amendment to the Constitution should state that we have the right to own our data.