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28 Cornell J. L. & Pub. Pol'y 35 (2018-2019)
Who Knows What, and When: A Survey of the Privacy Policies Proffered by U.S. Direct-to-Consumer Genetic Testing Companies

handle is hein.journals/cjlpp28 and id is 43 raw text is: WHO KNOWS WHAT, AND WHEN?: A SURVEY OF THE PRIVACY POLICIES PROFFERED BY U.S. DIRECT-TO-CONSUMER GENETIC TESTING COMPANIES* James W. Hazel** & Christopher Slobogin*** Direct-to-consumer genetic testing (DTC-GT) companies have pro- liferated in the past several years. Based on an analysis of genetic mate- rial submitted by consumers, these companies offer a wide array of services, ranging from providing information about health and ancestry to identification of surreptitiously-gathered biological material sent in by suspicious spouses. Federal and state laws are ambiguous about the types of disclosures these companies must make about how the genetic information they obtain is collected, used, and shared. In an effort to assist in developing such laws, this Article reports a survey of the pri- vacy policies these companies purport to follow. It canvasses ninety DTC-GT companies operating in the United States and provides a de- tailed analysis of whether and to what extent those policies inform con- sumers about how their genetic information will be used and secured, with whom it will be shared, and a host of other issues. Using the Fed- eral Trade Commission's articulation of the Fair Information Practice Principles and the agency's proposed Privacy Framework as the base- line, we conclude that most policies fall well short of the ideal. INTRODUCTION ................................................. 36 I. THE LEGAL LANDSCAPE ............................... 39 II. RESEARCH DESIGN........................ .............. 45 A. Internet-Based Search Strategy .................... 45 B. Collection of Policy Documents ................... 45 C. Correspondence with DTC-GT Company Representatives ............................... 46 * The authors would like to thank Ellen Clayton, Bradley Malin and other members of the Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe) team at Vanderbilt for their feedback on this project. The authors would also like to thank Neil Greenwell and Nathan Townsend, law students at Vanderbilt University Law School, for their research assistance. This work was sponsored by GetPreCiSe through a grant from the National Human Genome Research Institute, National Institutes of Health (#RM1HGO09034). ** Center for Genetic Privacy & Identity in Community Settings, Vanderbilt University Medical Center. *** Milton Underwood Professor of Law, Vanderbilt University. 35

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