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NIH Sep 1, 2021 | R01
Consumer Protections for Genomics and Precision Health
Institution: PENNSYLVANIA STATE UNIVERSITY-UNIV PARK
FOA Number: PA-21-268
Abstract
PROJECT NARRATIVE Consumer protections are of rising importance to the sustainability of personal genomics and mobile health industries and realization of precision health, yet the extent of consumer protections available from the Federal Trade Commission (the primary federal agency in the United States responsible for ensuring online privacy and data security beyond medical settings, for the prevention of unfair and deceptive trade practices of companies that might not be governed by HIPAA, and for promoting innovation) are poorly characterized and have received surprisingly little ELSI research attention. This foundational knowledge is necessary for responsible policymaking; for legal epidemiology; for empirical ELSI research to better understand privacy, data protection, and nondiscrimination policies (and the influence of genetic exceptionalism and data essentialism on those policies); and for normative ELSI research that would develop policies to promote fairness and social justice (e.g., to adequately address public health risks of emerging vulnerable populations of data "rich" and "poor" individuals). To resolve this serious problem, this project aims to characterize the federal as well as state consumer protections for genomics and precision health through legal and policy research methods to identify and analyze the activities of the FTC and state Attorneys General in matters of direct-to-consumer personal genomic services and products; mobile health apps; and data broker services.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG011051Start Date:
Sep 1, 2021End Date:
Aug 31, 2022PROJECT TERMS:
Accountability, Address, Adopted, Advertising, Affect, American, American Samoa, Area, Attention, Attitude, Businesses, Cellular Phone, China, Clinical, commerce, consumer product, Custom, cyber security, Data, Data Aggregation, data privacy, data protection, Data Reporting, data security, Decision Making, development policy, District of Columbia, e-commerce, Economically Deprived Population, Electronic Health Record, employment, Ensure, Epidemiology, essentialism, ethical legal social implication, European Union, Evaluation, experience, federal policy, Foundations, Genetic, genetic discrimination, genetic information, genetic privacy, Genetic Risk, Genetic study, Genomics, Goals, Guam, Health, health data, health information technology, health insurance, health record, Health Technology, Healthcare, Home, Individual, Industry, innovation, interest, International, Internet, Knowledge, Laboratories, Laws, Lawyers, Legal, Link, Medical, Medical Device, Medicine, mHealth, mobile computing, Mobile Health Application, Monitor, multidisciplinary, National Human Genome Research Institute, Northern Mariana Islands, Patient Self-Report, Police, Policies, Policy Research, portability, precision health, precision medicine, preference, prevent, Prevention, Privacy, Privacy Act, privacy protection, programs, Public Health, public policy, Puerto Rico, Regulation, Research, Research Design, Research Methodology, research study, Risk, Science, Security, Services, social, Social Justice, social media, Societies, Source, Technology, Testing, traditional care, Transact, trend, United States, United States Federal Trade Commission, United States Virgin Islands, Vulnerable Populations, wearable sensor technology
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