About | HeinOnline Law Journal Library | HeinOnline Law Journal Library | HeinOnline

14 Drexel L. Rev. 207 (2022)
Protecting Consumers and Regulating Data: The Need for Comprehensive Federal Oversight of the Direct-to-Consumer Genetic Testing Industry

handle is hein.journals/drexel14 and id is 215 raw text is: PROTECTING CONSUMERS AND REGULATING DATA:
THE NEED FOR COMPREHENSIVE FEDERAL
OVERSIGHT OF THE DIRECT-TO-CONSUMER GENETIC
TESTING INDUSTRY
Kevin C. Gilligan*
ABSTRACT
The Direct-to-Consumer (DTC) genetic testing market is a massive
biotechnology industry. Millions of people take at-home genetic tests
for many reasons, ranging from pure curiosity to learning about a
person's genetic predispositions for diseases. This industry is one of
many great accomplishments of modern science because it sequences a
person's genome and provides useful results to that person. The
cornerstone of the DTC genetic testing industry is data collection. But
this is not normal data collection. This is data collection of peoples'
genomes. Genetic information is immutable information, and as such,
it must be safeguarded. However, current laws largely do not regulate
this industry in regard to securing and sharing genetic data. And self-
regulation of an industry dealing with precious data could prove
harmful to people who use this industry.
Databases get breached, and information gets stolen. But instead -of
having one's credit card number stolen, a person whose data is stolen
from a genetic testing database may have his or her entire genome
stolen. Even worse, that data in the wrong hands can do unthinkable
harm. This Note explains how this industry trades genetic data like
any other commodity, and how current laws do not regulate the DTC
genetic testing industry to an appropriate extent. It then argues that
this industry must be regulated to protect its consumers. This Note
proposes a federal law with a two-part solution. First, customers who
* J.D. Candidate, 2022, Drexel University Thomas R. Kline School of Law. I would like to
thank Professor Robert Field for all the helpful insights, critiques, and encouragement. I would
also like to thank my parents for always supporting me in all that I do. Without them, none of
this would be possible.

207

What Is HeinOnline?

HeinOnline is a subscription-based resource containing thousands of academic and legal journals from inception; complete coverage of government documents such as U.S. Statutes at Large, U.S. Code, Federal Register, Code of Federal Regulations, U.S. Reports, and much more. Documents are image-based, fully searchable PDFs with the authority of print combined with the accessibility of a user-friendly and powerful database. For more information, request a quote or trial for your organization below.



Short-term subscription options include 24 hours, 48 hours, or 1 week to HeinOnline.

Contact us for annual subscription options:

Already a HeinOnline Subscriber?

profiles profiles most