Who wants to be a Google guinea pig?
An interesting exchange of articles published on Re/Code reflecting the views of James Temple and Dan Munro, respectively in favor and against taking part in Google’s ambitious health survey, reveals many of the hopes and concerns that this interface between technology and health will raise in the future, or to be more accurate, that are already being raised.
The survey, which is part of a series of initiatives under the Google X umbrella (along with the self-driving car, a neuronal network for computerized vision and speech recognition, internet access via balloons, Google Glass, the internet of things, and the acquisition of Makani Power to develop affordable wind energy) which aims to establish a baseline to define the variables that characterize a healthy person. To do this, the company has asked for 175 volunteers in the United States, a figure that will be increased to some 400 by year’s end, making up a proportional sample ages, racial groups, habits, and from a range of areas, all with the goal of submitting them to diagnostic testing that includes urine, blood, and genetic analysis (a complete sequence, not the marker detection offered by the likes of 23andMe). The study is longitudinal, and will run for 10 years or possibly longer.
Having established a base line of parameters that define a healthy person, the idea is to then be able to work on the early detection of diseases. This is, in principle, a worthy goal, and is a project sure to generate a lot of enthusiasm given its potential to change the lives of many people, and surely one that few people would have any doubts about participating in. The arguments supporting the initiative run very much along those lines: inspiring; likely to make a major contribution to the benefit of humankind; offering reasonable guarantees of privacy, and carried out transparently.
The arguments against the scheme are not that different: in the first place, the Genetic Information Non-discrimination Act (GINA) was approved in 2008 to protect people from discrimination on the grounds of their genetic makeup, but it is full of loopholes, and doesn’t apply to life insurance, health, or motor insurance, or to companies with less than 15 employees. The project’s transparency, once the information has been digitalized, could mean that information about participants is circulated freely. In just whose hands is the information? Google is a reasonably responsible organization, but its interests shift and fluctuate, and it has repeatedly cancelled projects in the past without providing any explanation, such as Google Health, for example; it also lost a lawsuit with the US government after it benefited from the sale of drugs on its platform that came with few or no guarantees.
According to Munro, healthcare in the United States is problematic, but a solution is unlikely to come from a company that has a history of launching ambitious projects seemingly aimed to boost its corporate image and that tend to be formulated ambiguously over the long term.
Whatever Munro says, Google will surely have no problem finding up to 400 volunteers. But in itself, that means little: these people are acting altruistically, out of curiosity or their own interests, and face the risk of discrimination down the line when they try to access certain services. This is a complex matter. In Spain, a pioneer in blood and organ donation, I am sure that there would be no shortage of volunteers to take part in such a scheme. And what about you? Would you be willing to take part in Google’s health survey?
(En español, aquí)
