Diagnosing Barriers to the Realization of the Promises of Big Clinical Data: An Evaluation of Clarity in Health Data Collaborations
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In the era of “big data,” researchers manage high-volume, high-variety, and high velocity data sets, which are increasingly available to the general public. This paper explores the human rights implications of data-driven health care, focusing on the rights of persons who either live with disabilities or may be perceived as having an elevated risk of developing a disability in the future. Access to high-quality data at reasonable cost can help governments to fulfill the right to health, which is well established in international human rights law. The data revolution has also empowered individuals to take greater control over their own health and to monitor their governments’ compliance with human rights treaties, including the Convention on the Rights of Persons with Disabilities (CRPD). Yet big data can also inadvertently promote discrimination and violations of privacy. In theory, governments should ensure confidentiality and respect for the privacy of individuals’ health data. In practice, it is difficult to prevent data miners from using re-identification techniques to link anonymized health information with non-medical open data. It is therefore important to enact antidiscrimination legislation that prohibits not only discrimination on the ground of existing, past, and imputed disabilities but also discrimination on the ground of a disability that may develop in the future. Governments may also need to take a proactive approach and require employers, insurance companies and other private actors to disclose whether they are using re-identification processes or purchasing health-related data from data brokers.
Abstract
In the era of “big data,” researchers manage high-volume, high-variety, and high velocity data sets, which are increasingly available to the general public. This paper explores the human rights implications of data-driven health care, focusing on the rights of persons who either live with disabilities or may be perceived as having an elevated risk of developing a disability in the future. Access to high-quality data at reasonable cost can help governments to fulfill the right to health, which is well established in international human rights law. The data revolution has also empowered individuals to take greater control over their own health and to monitor their governments’ compliance with human rights treaties, including the Convention on the Rights of Persons with Disabilities (CRPD). Yet big data can also inadvertently promote discrimination and violations of privacy. In theory, governments should ensure confidentiality and respect for the privacy of individuals’ health data. In practice, it is difficult to prevent data miners from using re-identification techniques to link anonymized health information with non-medical open data. It is therefore important to enact antidiscrimination legislation that prohibits not only discrimination on the ground of existing, past, and imputed disabilities but also discrimination on the ground of a disability that may develop in the future. Governments may also need to take a proactive approach and require employers, insurance companies and other private actors to disclose whether they are using re-identification processes or purchasing health-related data from data brokers.
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