Although the United States will not conduct its next presidential election for another fifteen months, the race for the White House begins in earnest tomorrow in Iowa with the Ames Straw Poll. As the coverage of straw polls, campaign ads and political positioning shifts into high gear, it may not be a coincidence that the issue of surreptitious genetic testing is also back in the news.
The legal and ethical uncertainty surrounding surreptitious genetic testing—which can be broadly defined as any genetic test performed without the knowledge and/or consent of the individual tested—first piqued the public′s interest shortly after the 2008 election thanks to an editorial by Bob Green and George Annas in The New England Journal of Medicine. Green and Annas worried that “persons or groups opposing a candidate [and] hoping to harm his or her chances for election” would obtain and release genetic information without consent, a form of “genetic McCarthyism.” This would not be very difficult, the authors concluded, since “sufficient DNA for amplification and analysis can be obtained from loose hairs, coffee cups, discarded utensils, or even a handshake.”
Nearly three years later, surreptitious genetic testing is back in the news thanks in large part to an in-depth article by Eriq Gardner in the current issue of the ABA Journal. Gardner′s piece examines the practice of surreptitious genetic testing, provides a compelling anecdote from a confessed “DNA thief” and highlights many of the privacy concerns associated with the practice.
The confusing legal landscape of surreptitious genetic testing was covered in detail by the Genomics Law Report late last year, and again early this year following the introduction of legislative proposals in Massachusetts, Vermont and California, each of which would have enhanced individuals′ rights in their DNA samples and data. But Gardner′s piece has drawn new attention to the topic from several law and privacy publications, including The Wall Street Journal′s Law Blog, and also prompted a regular Genomics Law Report reader to dig up another piece of proposed state legislation, this time from Texas.
Texas to Tackle Surreptitious Genetic Testing? The Texas legislation (HB 2110), which was introduced and referred to committee in March, is short and to the point. It would revise the state′s property code to include the following key provision:
Sec. 3.002. PROPERTY RIGHT ESTABLISHED. (a) Subject to Subsection (b), an individual has an exclusive property right in a DNA sample provided by the individual. A person may not, without the informed, written consent of the individual or the individual′s legal guardian or authorized representative:
(1) collect a DNA sample from an individual;
(2) perform a genetic test on an individual’s DNA sample; or
(3) retain an individual′s DNA sample.
The proposed legislation includes expected carve-outs for genetic testing performed in emergency medical, forensic or other similar settings, as well as civil and criminal penalties for statutory violations. Unlike legislation introduced earlier this year in other states, particularly in Massachusetts and Vermont, the Texas legislation is carefully limited in its scope. Absent from HB 2110 are declarations about the “fair market value” of a genome (MA), attempts to expand the legislation′s focus to encompass tangentially related topics such as medical records and gene patents (VT) or efforts to plug acknowledged gaps in the protections provided by the Genetic Information Nondiscrimination Act (MA, VT and CA).
Also noteworthy is HB 2110′s clear statement that the “informed, written consent of the individual or the individual′s legal guardian or authorized representative” is all that is needed to remove a genetic test from the realm of criminal conduct. This is a welcome departure from far more complicated provisions pertaining to DNA sample ownership and control contained in the MA and VT legislative proposals, which have cast doubt on the implications of those pieces of legislation, should they pass, for genomic research conducted in those states. The language in HB 2110 should reassure researchers in Texas and elsewhere that the state does not intend to interfere with ongoing or future genomic research projects (which are already premised on securing the informed, written consent of participants).
A Lesson From Texas. The Texas legislative proposal is largely a positive one, thanks primarily to its simplicity and clarity. In fact, HB 2110 bears a close resemblance to Alaska′s current genetic privacy statute (§§ 18.13.011 et seq.), which is one of the toughest and clearest genetic privacy laws in the nation. Unlike HB 2110, however, Alaska′s statute contains (1) an additional prohibition on the disclosure of results from a genetic test, (2) additional carve-outs from the prohibition on genetic testing, including for paternity testing (one of the most common instances of surreptitious testing) and (3) far more aggressive civil penalties (more than $100,000 if the violation occurred in a for-profit setting).
Differences aside, HB 2110 would make it crystal clear that surreptitious genetic testing is a crime under Texas law, and it would do so without raising concerns about the legislation′s unintended effects on genomic research or the use of genetic information in healthcare, as is the case with the Massachusetts and Vermont proposals. In addition to its clarity and simplicity, HB 2110 is also timely. As we wrote late last year:
Each year, the availability of low-cost, high-quality genetic information expands. Along with a wide array of legitimate and beneficial uses, the growing accessibility of this genetic information brings with it an increasing number of opportunities to employ and to abuse surreptitious genetic testing. As we continue to push forward into the era of personal genomics, the time has come to seriously discuss a comprehensive legal framework for surreptitious genetic testing.
As the swarm of presidential hopefuls, media and political partisans gather in Iowa this weekend, HB 2110 should serve as yet another reminder that there is no comprehensive federal legal framework for addressing surreptitious genetic testing (as for Iowa, at least as of 2008, it too lacked a law clearly banning such testing). This is a fact that the various presidential candidates (including Texans Ron Paul and Rick Perry) would do well to keep in mind as they head off down a campaign trail which will see them traverse the country to shake hands with thousands of strangers, leaving untold used coffee cups and uneaten pizza crusts in their wake, each one a target ripe for surreptitious genetic testing.