Artificial intelligence researchers promise a revolution in medical affairs: personalized comparisons of treatment effectiveness, rapid processing of data, and new insights in the drug and device fields (both for development and prescribing). Growing attention to the social determinants of health also portends new insights on the ways that our social lives, housing, transport, eating and drinking habits, and sleeping patterns affect our health. However, like the pharmakon of critical theory, data analysis here is not merely cure, but poison: a way of identifying the vulnerable, subjecting them to old and new forms of discrimination.
These harsh realities suggest the need for a new deal for data: rising access to health-inflected information for medical researchers, coupled with restrictions on the ability of non-medical entities to access such data, or inferences based on it. Revisiting my 2013 article “Grand Bargains for Big Data,” I will explore the commercial practices and public values that imperil fair health data practices. Ivan Ascher’s concept of a “Portfolio Society” helps us understand the high stakes of developing data infrastructures that can read our body’s data trails as clues to future health status. The pursuit of health data justice will entail important new restrictions on the collection, analysis, and use of data by those outside the health care system.The pursuit of health data justice will entail important new restrictions on the collection, analysis, and use of data by those outside the health care system.
Frank Pasquale, Professor, University of Maryland, is an expert on the law of artificial intelligence, algorithms, and machine learning. Pasquale frequently presents on the ethical, legal, and social implications of information technology. His book, The Black Box Society: The Secret Algorithms that Control Money and Information (Harvard University Press, 2015), develops a social theory of reputation, search, and finance, and offers pragmatic reforms to improve the information economy. Pasquale has advised business and government leaders in the health care, internet, and finance industries. Pasquale has been recognized as one of the leaders of a global movement for “algorithmic accountability.” In media and communication studies, he has developed a comprehensive legal analysis of barriers to (and opportunities for) regulation of internet platforms.
PLACE: Treasury Theatre, Lower Plaza, 1 Macarthur Street, East Melbourne, 3002