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95 Notre Dame L. Rev. 155 (2019-2020)
Going Rogue: Mobile Research Applications and the Right to Privacy

handle is hein.journals/tndl95 and id is 165 raw text is: GOING ROGUE: MOBILE RESEARCH APPLICATIONS AND THE RIGHT TO PRIVACY Stacey A. Tovino* INTRODUCTION Consider a hypothetical involving a woman with a progressive neurologi- cal condition) The woman, who wishes to advance the scientific understand- ing of her condition, volunteers to participate in a disease-progression research study led by an independent scientist.2 The research study requires each participant to download and use a mobile application (mobile app) that was designed by the independent scientist and that collects a number of data elements, including first and last name, date of birth, race, ethnicity, diagnosis, medications, family history, and real-time information regarding balance, gait, vision, cognition, and other measures of disease progression.3 © 2019 Stacey A. Tovino. Individuals and nonprofit institutions may reproduce and distribute copies of this Article in any format at or below cost, for educational purposes, so long as each copy identifies the author, provides a citation to the Notre Dame Law Review, and includes this provision in the copyright notice. * Judge Jack and Lulu Lehman Professor of Law, William S. Boyd School of Law, University of Nevada, Las Vegas; J.D., University of Houston Law Center; Ph.D., University of Texas Medical Branch. This Article is an outgrowth of my participation as a research author on a grant project (Addressing the Ethical, Legal, and Social Issues in Unregulated Health Research Using Mobile Devices) funded by the National Institutes of Health. I thank Principal Investigators Mark Rothstein and John Wilbanks for the opportunity to serve as a research author on this grant and to learn from their significant work on this topic. I also thank the participants of the Data Min(d)ing: Privacy and Our Digital Identities symposium held at the Federal Department of Health and Human Services in Washington, D.C., on October 22, 2018, for their comments and suggestions on the ideas presented in this Article. Finally, I thank Lena Rieke, Fellow, Wiener-Rogers Law Library, William S. Boyd School of Law, for her outstanding research assistance. 1 See generally Robin Ray & Anne Kavanagh, Principles for Nursing Practice: Parkinson's Disease, Multiple Sclerosis and Motor Neurone Disease, in LIVING WITH CHRONIC ILLNESS AND DIsAmi~iTv 301 (Esther Chang & Amanda Johnson eds., 3d ed. 2018) (discussing progres- sive neurological conditions). 2 See, e.g., Carrie Arnold, Going Rogue, SCIENCE (May 17, 2013), https://www.science mag.org/careers/2013/05/going-rogue (reporting the story of Ethan Perlstein, an inde- pendent scientist who engages in scientific research without affiliation to a university, phar- maceutical company, research institute, or government agency and without public funding). 3 See generally Sarah Moore et al., Consent Processes for Mobile App Mediated Research: Systematic Review, J. MED. INTERNET RES. MHEALTH & uHFALTH, Aug. 2017, at 3, https://

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