PBS Frontline did a moving story about ALS (Lou Gehrig’s disease). It followed Stephen Heywood’s 5 year, rapid descent into the physically paralyzing effects of the condition — the horror of the disease is that you maintain full mental capacity as your body’s muscles cease to work. This is the same disease that put Stephen Hawkin in his much-lampooned wheelchair and robot voice. There is no cure. There are very few treatments that help the symptoms and these solutions are mildly effective and are decades old.
The problem is that this is not a profitable disease to fix. The percentage of the population affected by ALS is very small and the cost of developing treatments is very high. Furthermore, the nature of the disease makes it an extremely difficult problem to solve. It’s just not a priority for large drug companies and medical research labs.
So when you get diagnosed with ALS, you get just a few years to learn how to navigate computer interfaces by head bobs or blowing through straws before you have to be hooked up to a respirator to remain alive.
Before motorized wheelchairs and feeding tubes, people would just die from this disease… buried alive in their own functionless bodies. The Frontline piece was very clear that technology and science innovation has helped the situation, but the methods of innovation are slowed by layers of regulation, and advances have not kept pace with rapidly destructive diseases like ALS. Sure, drugs may come out, but it’ll be years too late for you.
This is where hackers can help.
Hackers hold in common a belief that rules can and should be questioned. They have courage to break things in hopes to gain knowledge or to build something newer and better.
Stephen’s brother, Jamie Heywood, refused to sit still while his brother suffered from the effects of the disease. He started a guerilla laboratory and ALS foundation. With his brother as inspiration, he raised millions of dollars in funding to do fast and nimble research. He has no medical degree, but learned enough about biology and medicine to understand what he needed to pull together and to be conversant with medical professionals who could help the effort.
These rogue scientists operated within ethical and legal rules, but they turned their back on traditional and bureaucratic paths to cures. For example, rather than take a bottom up approach by studying and fabricating chemical compounds of drugs, they identified and tested fully manufactured drugs, already approved by the FDA, to see if they had any effect.
His approaches and lack of pedigree definitely makes the mainstream medical community very uncomfortable. Some scoff, some worry and consider Jamie dangerous, and many simply dismiss. Nevertheless, his sales skills are exceedingly good, and he’s clearly smart enough to hold his own. There is a scene in the story that would rile up any rogue thinker — Jamie is at a neuroscience conference and is approached by a detractor. They get into it. The doctor questions Jamie’s research, questions his methodology, and points out that he is circumventing “standard” research practices. So Jamie asks the doctor if he has ever questioned the rules. The guy then proceeds to let out what can only be described as an arrogant guffaw and tells Jamie that he “is SOOOO NAIVE.”
But why don’t people question their rules? Now, I admit, I AM naive when it comes to the medical profession. However, scientific developments happened, prolifically, in absence of the strict regulating rules for centuries. Where is the Thomas Edison of genetics, hacking away in his homemade genetic engineering lab in the garage? And when he does produce worldchanging innovations one after another, will he be laughed at? Will his ideas be celebrated, or will they be regulated away as unusual and therefore not worthy of commercialization simply because his research methods are not “approved”? Are the rules stacked against the garage hacker?
I think the rules are in place to protect corporate assets against lawsuits.
Hacking is about failing repeatedly until you get it right — for every brilliant moment, there are hundreds and thousands of just as spectacular failures. So, if our society behaves in a way that makes legal punishment the first response to failure, then we have a stifling effect that demotivates anybody from taking risks while innovating.
The hacker scientists at the Heywood ALS lab put it best: these victims of the disease are going to die in a few years anyway. What do they have to lose?
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