Of Alzheimer’s and Net Neutrality / by Dan Weingrod

It’s hard enough to create viable analogies to explain the Web let alone the Net Neutrality debate, but the recent breakthrough inAlzheimer’s research might just do.

Earlier this week newspapers across the globe headlined an immense breakthrough in Alzheimer’s research. A spinal fluid test was shown to be potentially “100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer’s disease.” This stupendous breakthrough in a field that has generally seen slow research gains came seemingly out of the blue. One of the most critical reasons for this sudden breakthrough was detailed in a follow-up article that was published yesterday.

In 2003, a number of scientists involved in Alzheimer’s research pushed for a total and open sharing of data between all researchers, universities, corporations and other groups involved in serious Alzheimer’s research. Traditionally each of these groups holds on to their own data and keeps it as un-normalized information that is shared internally. Why? Because the potential for huge profits were too astronomical to share. As it became clear that this was not working researchers realized there had to be a different way.  As one researcher put it: “we wanted to get out of what I called 19th-century drug development” and the sharing of data was key to making that happen. By sharing data openly among all groups, from largest to smallest, capitalists to non-profits, the opportunity was created to blend innovation, technique and insights together to reach this result and others to come.

So what’s the analogy to the net neutrality debate? In their legislative framework addressing net neutrality Google and Verizon proposed maintaining an open internet while prioritizing some traffic on the Web through “fast lanes” in return for additional payment. While this was galling enough to net neutrality advocates, the proposal rubbed salt into the wound by leaving out the rapidly growing wireless market. In addition, the framework also discussed the unspecified “additional online services” that would be outside the regulation of this framework. All in all, the proposal hinted at the idea that some traffic would ultimately receive better, and faster, treatment than other traffic.

So let’s consider what might have happened if this framework had been, even philosophically, applied to Alzheimer’s research. Instead of the unprecedented open sharing of data we might have seen data from corporations or large universities take precedence over the data from the smaller less funded research groups. Smaller, more agile labs or researchers might have seen their data sit on the back burner. How many ideas would have been lost in this process? How much slower would the process have been if researchers working with “fast lane” data had to wait or even backtrack once “slow lane” data arrived? I think it is clear that any prioritization of data or outside control by a bandwidth provider could have significantly disrupted the results of the research.To be clear most of the Web content in the “fast lanes” of the Google-Verizon framework is far more prosaic than medical research data. It’s not like getting e-mail or an old episode of “Lost” at high speed is as critical as gaining insight into an inscrutable, brain ravaging disease. But innovation online takes many forms and has many applications. By putting a premium on one packet of data over another, and especially in the world of wireless, we risk going back to “19th-century thinking” of another sort  and losing the openness that has made the Web the agent for positive change that it is today.