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Big Data, Health Care, and International Human Rights Norms

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.  On one hand, the right to the highest attainable standard of health is well established in international human rights law and access to high-quality data at reasonable cost can help governments to fulfill this right.  Big data can also empower 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).  But open 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.

 

Carole J. Petersen
– Professor, William S. Richardson School of Law and Matsunaga Institute for Peace
– University of Hawaii, United States

 

  • Background
    Carole J. Petersen is a Professor of Law in the William S. Richardson School of Law and Graduate Chair in the Matsunaga Institute for Peace at the University of Hawaii at Manoa. Professor Petersen teaches courses on gender and law, dispute resolution, human rights, and international law. From 2007-2016, she served as the Director of the Matsunaga Institute for Peace and Conflict Resolution.  From 1991 to 2006, Professor Petersen taught in the Faculty of Law at the University of Hong Kong, where she also served, from 2001-2004, as Director of the Centre for Comparative and Public Law. Professor Petersen holds a BA in Economics from the University of Chicago, a JD from Harvard Law School, and a Postgraduate Diploma in the Law of the People’s Republic of China from the University of Hong Kong.
  • Education
    – University of Chicago, Bachelor of Arts, with honors in economics, June 1981
    – Harvard Law School, Juris Doctor, cum laude, June 1984
    – University of Hong Kong, Postgraduate Diploma in the Law of the People’s Republic of China, with distinction, June 1994
  • Selected Publications
    Academic Freedom and Critical Speech in Hong Kong: China’s Response to Occupy Central and the Future of ‘One Country, Two Systems,’ 42 North Carolina Journal of International Law 665-727 (2017) (co-authored with Alvin Y. H. Cheung).
    Promoting the Rights of Older Persons: Addressing Adult Guardianship and Substituted Decision-Making in Health Care, 10(1) Asia Pacific Journal of Health Law, Policy & Ethics 41-70 (2016).
    International Law and the Rights of Gay Men in Former British Colonies: Comparing Hong Kong and Singapore, 46 Hong Kong Law Journal 109-129 (2016).
    Eradication of Child Sex Trafficking: the International Perspective, in Katherine Lynch and Anne Scully-Hill (eds), International Perspectives on Disputes About Children and Child Protection, Volume II, pp. 103-33 (Chinese University of Hong Kong Press 2015).
    Sex Work, Migration, and the United States Trafficking in Persons Report:  Promoting Rights or Missing Opportunities for Advocacy? 25 Indiana International & Comparative Law Review 115 (2015).
    Reproductive Justice, Public Policy, and Abortion on the Basis of Fetal Impairment: Lessons from International Human Rights Law and the Potential Impact of the Convention on the Rights of Persons with Disabilities, 28 Journal of Law and Health 121 (2015).
    Equal Opportunities Law Reform in Hong Kong: The Impact of International Norms and Civil Society Advocacy, in Michael Tilbury, Simon N.M. Young, and Ludwig Ng (eds.), Reforming Law Reform: Perspectives on Law Reform Processes in Hong Kong and Beyond (HKU Press, 2014) (co-authored with Kelley Loper).
    The Convention on the Rights of Persons with Disabilities: Using International Law to Promote Social and Economic Development in the Asia Pacific, 35(2) University of Hawaiʻi Law Review (2013).
    Sexual Orientation and Gender Identity in Hong Kong: A Case for the Strategic Use of Human Rights Treaties and the International Reporting Process, 14(2) Asian-Pacific Law & Policy Journal 28-83 (2013).
    Preserving Traditions or Breaking the Mold? A Comparative Study of the Impact of Transnational Human Rights Processes in the People’s Republic of China and the Hong Kong Special Administrative Region, in Kyriaki Topidi and Lauren Fielder, eds., Transnational Legal Processes and Human Rights (Ashgate Publishing Ltd. 2013).