by Gordon Hull
News this week of a planned asthma inhaler that connects to the Internet of Things. On the one hand, this seems like a pretty good use of the Internet: as you try out different medicines, they can learn precisely how well those medicines work, and work in genomics might even show that some medicines work better for some people and other medicines work better for others. All the data can all get amalgamated so that you can get an inhaler that works sooner. Some time ago, I suggested in a few posts that there are really two different kinds of biopolitics at work here – a mid-century public-health-oriented variety, which is being eclipsed by an individualizing, neoliberal version. The asthma inhaler shows that how we interpret big data will make a difference in which, a point which I want to make by way of the water crisis in Flint, Michigan (I’m not using the word ‘tragedy’ because ‘tragedy’ implies inevitability, and the problems in Flint were absolutely not inevitable). In Flint, we see the decay, if not active destruction, of a public health infrastructure under the weight of neoliberal policies.
On the public health front, the data from things like this inhaler might produce some important public health discoveries: what if the people of Flint turn out to have been breathing air so toxic that it is associated with a higher incidence of asthma? The answer to that question depends partly on who has access to the data. As Frank Pasquale has argued at length in the context of Pharma, for big data to make a meaningful public health impact, it is going to have to be de-siloed, and publicly accessible. The experience of Flint’s water supply is strong evidence that he is right, because it shows the disaster that neoliberalism can otherwise become as it individualizes and privatizes health information.
Data about Flint’s water wasn’t disclosed soon enough, and the makers of the asthma inhaler have no obligation to make their population-level data publicly accessible. There are also technical problems, in particular with the incompatibility of record systems, what Martin French refers to as gaps in the informatics practices of data entry and collection. Or, as Evelyn Ruppert reports of the British NHS – as socialized a medical system as you will ever see, and one that you would think would at least have standardized data:
Because these databases depend on diverse and complex socio-technical arrangements – of professionals, computers, software, forms, and all of the many actors involved in long chains of relations – their operation is highly variable and contingent, resulting in multiple actually operating systems in practice (118).
In other words, the public accessibility of complicated data isn’t going to be easy. Still, one sees the possibility of a moment of empowerment here: armed with data about lead poisoning or asthma rates, citizens would be in a better position to demand changes by their elected officials, via the ballot box or otherwise, and it would be harder for officials, undemocratically appointed, to keep their jobs by ignoring the data.
Michigan reminds us that just because public officials had access to that data doesn’t mean that they will use if appropriately: a lot of data needs to be in the commons, accessible to ordinary people and not just corporate and governmental agencies. If you think about the case being made against people in the Michigan government, all the way up to the governor, it looks like there was a sustained effort to cover up the data: GM immediately noticed the new water supply corroded automobile components, and was promptly rewarded with clean water. Yet somehow that information didn’t make an immediate difference for the people who had to drink this liquid that was able to corrode metal. If even half of what Michael Moore says (h/t Leiter) is true, then an air pollution disaster wouldn’t surprise me at all. If everyone’s asthma inhaler reported poor air quality, the less cynical part of me says it might make a difference, but only if average citizens were given access to the data provided by their own bodies.
Flint, again, shows the alternative to that bit of optimism: what you might get instead are neoliberal bureaucrats with no real accountability to anyone – including in their emergency powers the ability to completely ignore the city’s elected government – deciding that the cost of cleaning up the air is higher than the cost of treating resulting asthma, especially when the people who suffer most are poor and black. It’s pretty hard in the drinking water not to see a case of blatant racism, with the perverse outcome that when the (non-white) children of Flint start performing poorly at school, White Supremacy will have produced what it could then claim to be its own supporting evidence.
It’s also really hard not to think of Agamben’s claim that modernity at large is becoming a generalized state of exception, since it really was an “emergency” here that stopped democracy and allowed the bureaucrats to assume sovereignty. One also thinks about the initial Foucauldian distinction between those whose life is fostered versus those who are left to die. The people of Flint have been left to die by the SOE and accompanying austerity measures imposed by the governor’s office. The situation also comes very close to even Foucault’s definition of state racism, where one population is exposed to death so that another may “live.”
The sum of all of this is the transfer of individual responsibility for their decaying infrastructure onto the citizens of Flint. Don’t like the air or water where you are? Just move! It’s not my fault you stayed in a place you knew made your asthma worse. In that sense, what Deborah Lupton says of digital technologies more generally certainly will apply to big data and public health in cases like these:
What is particularly noticeable in the way in which digitized health promotion is employed in the majority of current programs is that most strategies render health states even more individualized, and draw attention away from the social determinants of health to a greater degree than ever before (5)
The potential privacy implications of the cloud-Inhaler are also pretty substantial, since medical information is, well, consequential, and only sort-of protected. The question of whether anonymized data in medical research and public health can be de-anonymized is up for debate. What is clear is that the 1998 Genetic Information Nondiscrimination Act (GINA) only protects insurance and employment uses of the data – but if Target wanted to send you ads based on it, they could. Genetic information could also be used in housing discrimination. Data leaks from the cloud all the time, HIPPA notwithstanding, as the Reuters article makes clear, and data brokers love to share information and combine it in interesting new ways. That, after all, is the point of big data, for better and for worse. In any case, as the report indicates, we are just at the beginning of the ability of the medical system to engage in heavy and potentially quite frightening health surveillance. Directed apporpriately, that surveillance has the potential to empower ordinary people against state-corporate interests. For the sorts of public health improvements that big data promises, we’re going to have to overcome a lot – and some of that is going to require public intervention against Pharma, the data companies, and corrupt neoliberal governments and their incessant declarations of “emergency” and “austerity.” Again, Lupton:
Given the often unbridled enthusiasm that is displayed in many accounts of the uses of digital technologies in the health promotion literature, it is paramount to investigate and identify the social and political issues that emerge, including the ramifications for social groups who are already socioeconomically disadvantaged, have disabilities or suffer poor health. Many of the technologies and approaches … intersect with each other, blurring the boundaries between healthcare delivery and self-care, self-initiated health promotion, corporate programs, consumer marketing, preventive medicine, health education and communication and community development (5)
This blurring of boundaries, and the general trend toward subsuming everything into individualized markets is textbook neoliberalism, and the people of Flint are living (and dying) in consequence of it when applied to mid-century public health infrastructures. Medical technologies like the cloud-inhaler have the potential to do a lot of good for public health, particularly in identifying and analyzing possible disease clusters, monitoring air quality and how that air quality affects people. But only if the right regulatory structure is in place. And there are powerful vested interests against developing such a structure, including state governments that would rather stick their heads in the sand and cut taxes on the rich.
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