key: cord-0252449-y22w82u0
authors: Dickens, Amy
title: From Information to Valuable Asset: The Commercialization of Health Data as a Human Rights Issue
date: 2020-12-03
journal: Health Hum Rights
DOI: nan
sha: 8167bf5702c9d69bf8ff679dfad619a086d68adc
doc_id: 252449
cord_uid: y22w82u0

nan

N U M B E R 2 Health and Human Rights Journal billion by 2021, health data is no longer simply a source of information but a valuable asset used to generate intellectual property and economic profit. 4 The commercialization of health data: A problem for human rights Today, the scientific and commercial value of health data is captured predominantly by the tech giants, whose first-mover advantage, technical expertise, and wealth of resources enable them to dominate the market for data-driven innovation in health.

In recent years, these companies have sought to extract the commercial value of health data by collaborating with health care providers to develop new algorithmic technologies. This business model is exemplified by the controversial partnership between Google's DeepMind and the UK's National Health Service, in which DeepMind was given free access to 1.6 million patient records in exchange for developing a new clinical application to detect acute kidney injury. 5 The deal raised serious concerns around patient privacy, highlighting how the tech giants' access to health data risks infringing on civil and political rights, such as the right to privacy. 6 It also granted DeepMind exclusive property rights to any technologies developed through the collaboration, enabling the company to determine the price of such technologies and to control access to their health benefits. Commercial capture of the scientific and financial value of health data through partnerships such as these may restrict equitable access to data-driven technologies and their health benefits, thus infringing on the rights to science and health.

Unlike the tech giants, states are currently ill equipped to realize the value of patient data. Most health systems, particularly those in low-and middle-income states, do not have the financial or technological capacity to develop algorithmic technologies themselves. The private sector thus has an indispensable role to play in facilitating data-driven innovation. Yet the public sector also lacks the necessary commercial expertise to strike up effective deals with the tech giants. This is compounded by the difficulty of quantifying the true "value" of data, which makes it unclear as to whether states (and patients) are getting a fair return for providing access to patient records.

The commercialization of health data is thus a double-edged sword for human rights: while the development of data-driven technologies that could advance socioeconomic rights depends on the capabilities of tech giants, human rights are also threatened by these companies' involvement.

Realizing the potential of health data resources State signatories to the International Covenant on Economic, Social and Cultural Rights have an obligation to take steps to progressively realize the rights to science and health to the maximum of their available resources and to protect these rights from violations by third parties. 7 Furthermore, according to the Committee on Economic, Social and Cultural Rights' General Comment 25, states are required to "promote scientific research ... to create new medical applications and make them accessible and affordable to everyone." 8 If states are to harness the true value of health data to advance human rights, they must first recognize its potential to deliver scientific and economic benefits. To this end, they should strive to improve the availability of health data while ensuring appropriate protections. This requires that states invest in efforts to develop and maintain high-quality health data systems. Where resource-scarce countries face barriers to digitization, other states should provide international assistance. 9 States must also ensure that research collaborations with technology companies do not allow commercial actors to infringe on human rights, including the rights to science and health. To do so, they must challenge tech giants' monopoly ownership of algorithmic technologies and demand equitable benefits for the use of rights-holders' data. This requires that states consider alternative means to advance data-driven innovation, such as commercial models like profit-or IP-sharing a. dickens / viewpoint, big data, technology, artificial intelligence, and the right to health, 67-69

N U M B E R 2 Health and Human Rights Journal 69 agreements or more innovative data governance solutions like data trusts. In order to determine what constitutes a fair return for rights-holders, states should support efforts to develop novel methods of quantifying the value of health data and actively promote the participation of patients in data governance efforts. 10 For the commercialization of health data to advance human rights, states must use patient data to generate new innovations, while pushing back against the encroaching powers of the tech giants by laying claim to rights-holders' legitimate stake in the ownership of algorithmic technologies and protecting patient privacy. This urgent task reinforces the Committee on Economic, Social and Cultural Rights' call for states "to regulate the ownership and control of data according to human rights principles." 11 

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