Issue link: http://cp.revolio.com/i/2624
19 www.hplusmagazine.com Steve Jobs' recent liver transplant provides an example of how open source medicine can save a life. In 2004, Steve Jobs announced that he had been treated for a rare form of pancreatic cancer called islet cell neuroendocrine tumor, which is curable — if removed quickly — through surgery. In an Apple memo, Jobs declared that the tumor had been successfully removed, and no further treatment was required. However, the rare, slow-growing tumor has a high rate of metastasis: 75% of patients will experience the spread of the disease, most often to the liver. Chemotherapy is not usually an effective treatment if the disease has spread to multiple parts of the liver, and a transplant is often recommended. Using the same intellect that made iPhone apps accessible in one touch (as opposed to having to find them in a folder three levels down like competitive smartphones), Jobs applied open source medicine to take the most direct route to life-saving treatment. According to the United Network for Organ Sharing, in 2006 the national median waiting time for a liver transplant was 306 days. In Tennessee, it is 48 days. There are no residency requirements to receive transplanted organs in Tennessee, so California Steve became Tennessee Steve in order to get the transplant, which was performed successfully. To get on the waiting list in another region, a patient must get a referral, and travel to the region's transplant centers for an evaluation. Steve Jobs was first on the list almost immediately after signing up, indicating the power of open source medical knowledge used as wisely as Jobs has Apple designers apply usability data. Information is empowering, and more informed patients can make more informed choices. If one person can use a little bit of medical information to so effectively save one life, how can a lot of us benefit from a lot of medical information so that many of us can live much longer? Let's look at a notoriously tangled mass of information: the human genome. The sequencing of the genome in 2003 promised wild advances in medical science. The benefits were supposed to be enormous. Knowledge of the genome would revolutionize health, galvanizing the field of personalized medicine. And in many ways, it has. But most of us are unfamiliar with how to reap the rewards from our tax investment in this research. The steps toward personalized medicine are many, and enormous amounts of data must be parsed before we can make it a reality. So it's 2015 and you decided to shell out and get your genome sequenced. You get a huge .txt file, with a bunch of characters. You have no idea where each gene begins or ends, and there's no way to make sense of it all. The letters go on for miles, and the so-called color code makes it even more confusing. To make genome data useful, we need a user-friendly database that tells us the sort of things we'd want to know while looking at genome data. Which string of ATCG's will tell us that we have an increased risk of skin cancer? What are our options for avoiding illness in the future? Are there any gene therapies available? These questions may only be addressable on a massive scale, with data being constantly refined and analyzed by thousands of users in an open source fashion. Open source medicine is an emerging movement with this very goal in mind. Concerned, talented individuals can work collaboratively to understand the knowledge held in genome data — humans working together to decode the meaning behind their very DNA. Once empowered with information, individuals can also choose to pursue genetic enhancement. Imagine the power of an open source movement driving the bioinformatics of aging. How many hours would you devote to extending your own lifespan? If you could log in tomorrow to MitoSENS, and spend some time helping catalog genetic damage caused by free radicals, or modeling lysosomal storage diseases, thus potentially extending the lives of millions, would you? We must look past the unprocessed data and see the information that is directly and immediately relevant to our lives, our health, and our longevity. The time may be right for a movement in open source medicine. Start benefiting from your knowledge today. Wikipedia is proof that reputation and a sense of contribution are sufficient to motivate many. But Wikipedia's secret is an easy, intuitive interface that allows us to comfortably input data. The creation of an interface that allows us to easily and readily work with medical data would be a huge leap forward towards open source medicine. And excellent interfaces are Steve Jobs' specialty. Afterword: A few days after writing this article, I set up an Open Source Medicine Group on Facebook and in three days it had more members than Obama's healthcare group that had been up for a year. Alex Lightman is the Executive Director of Humanity + (the organization) and CTO of FutureMax, a merchant bank. He is the author of Brave New Unwired World, the first book on 4G wireless. Parijata Mackey is the Chief Science Officer of Humanity + and a senior at University of Chicago, where she studies and teaches synthetic biology and computer science. They welcome h+ readers to friend them and join their Open Source Medicine group on Facebook. Imagine the power of an open source movement driving the bioinformatics of aging. how many hours would you devote to extending your own lifespan?