A prince of the British crown goes on vacation in sunny Spain, where he meets a beautiful and mysterious woman. During some tender embrace, she runs her hands through his hair, surreptitiously plucking a single strand and tucking it away. The prince has been caught in a classic "honey trap." (1) After they part, the woman gives the hair to her employer, a private security firm, who in turn sells the hair to a foreign newspaper. The newspaper tests the hair's DNA to find out once and for all if a shocking rumor is true: the prince's father was not the Prince of Wales, but a former army officer and ex-lover of his mother, Princess Diana!
While the entire plot outlined above sounds like a bad soap opera, it was reported by major newspapers as an actual conspiracy afoot in 2002, foiled before it was ever accomplished by a tip-off from a former police officer. (2) Although a revelation about Prince Harry's parentage would have been shocking, (3) what was apparently just as shocking to many in the United Kingdom was that no law would have prevented the conspirators from performing DNA tests on Prince Harry's plucked hair and then publishing the results of the test in a newspaper--all without his consent. (4) These worries about nonconsensual testing were not limited to the British. Around the same time, it was reported that during a visit to the United Kingdom for a G7 summit, one of President Bill Clinton's bodyguards paid for and took with him a beer glass from which the President had been drinking, apparently fearing that someone could later surreptitiously use the glass to test a sample of the President's DNA. (5)
While these fears may have been the stuff of science fiction a decade or two ago, with the completion of the Human Genome Project in 2003, (6) and rapid developments in genetic science since, (7) that is no longer the case. DNA samples can easily be obtained from a variety of items that we cast off every day, including: bubble gum, tissues, cigarettes, and more. (8) Further, a proliferation of virtually unregulated (9) direct-to-consumer ("DTC") genetic tests have made it easy for anyone to have a DNA sample tested. These factors combine to make the potential for violations of personal privacy and misuse of genetic data greater than ever before. Much like Prince Harry and President Clinton in the United Kingdom a decade earlier, Americans have little, if any, recourse against unscrupulous testing and use of their genetic information.
This Note will argue that to properly deter and punish these misuses, criminal sanctions for nonconsensual use of genetic information need to be expanded or created. Part II begins by arguing that nonconsensual use of genetic information is harmful, and that those harms are sufficiently unique (as compared to nonconsensual use of other health information) that genetic-specific legislation is justified. Part III summarizes the current legal regime regulating the use of genetic information, including state and federal law. It also briefly describes other nations' regulations concerning the privacy of genetic information. Part IV argues that current state laws--which criminalize only some nonconsensual uses of genetic information--are insufficient, and offers examples of harmful conduct that are left uncovered. It then argues that either current federal health privacy laws could be expanded, or new offenses could be created to deal with these harms. Part V considers and rejects a number of arguments against genetic-specific laws. Finally, Part VI concludes that current law is lacking and that criminalization is required if the harms associated with nonconsensual testing of genetic information are to be prevented.
HARMS OF DISCLOSURE AND THE UNIQUE NATURE OF DNA
Advances in our understanding of genetic information have highlighted harms unique to the use of that information. Even before the completion of the Human Genome Project in 2003, (10) scientists, ethicists, and others were debating the legal, ethical, and moral concerns over the use of genetic information. (11) Legislation needs to be enacted that addresses these concerns and prevents the unique harms that the nonconsensual use and disclosure of genetic information may cause.
A. Nonconsensual Use of Genetic Information Is Harmful
Nonconsensual use of genetic information has the potential to cause numerous harms, including discrimination, stigmatization (or violation of the right not to know), and other harms that remain speculative in advance of future technological breakthroughs. (12) Of these, discrimination is perhaps the least speculative harm, as there is documented evidence of it occurring already. (13) In a 2001 settlement between the U.S. Equal Employment Opportunity Commission and the Burlington Northern Santa Fe Railway Company, it was revealed that the railroad genetically tested employees who had filed claims for work-related injuries based on carpal tunnel syndrome. (14) The company was apparently testing for a rare genetic condition that some scientists believe may predispose a person to that condition. (15) However, even at the time, it was debatable whether the test used by the railroad could accurately predict whether someone would develop carpal tunnel syndrome. (16)
Genetic information also has the potential to stigmatize those whose information is disclosed by acting as a brand upon them. (17) Lizabeth Barclay and Karen Markel offer the following example:
Huntington's disease is a degenerative neurological disease that does not manifest its symptoms until middle age and leads to early death. This condition may not be evident to others while it is in its latent form. Therefore, how could it be stigmatizing? The condition may still be stigmatizing for the carrier if they are reticent to engage in activities such as having children or making future plans because of fear of disease onset. (18) This example is particularly apt, as Huntington's disease is one of the few genetic diseases whose causation has been traced to an exact gene. (19) Huntington's is fatal and debilitating; a positive diagnosis sometimes leads victims to commit suicide. (20) Therefore, a person who knows that they are a carrier of the gene may feel stigmatized by this knowledge even when no one else is aware of it.
Another way of characterizing the harm of stigma is to frame it as a violation of "the right not to know." (21) Scholars have posited a number of bases for this "right," (22) and, in the context of genetic information, the United Nations has recognized it as a right worth protecting. (23) Many people are perfectly happy not knowing that they have genes that may predispose them to certain conditions, and learning about any predisposition may, in fact, cause psychological harm. (24)
This violation of the right not to know is especially significant in the realm of genetics because of what has been termed the "therapeutic gap." (25) Genetic tests exist that can discover conditions for which there is no treatment (such as Huntington's disease). (26) People may not wish to be tested for life-threatening and incurable conditions for which no treatment exists, particularly given the psychological harm such knowledge may bring. (27) Because the onset of the condition could be far in the future, and because the probabilistic nature of many genetic tests means that the person may never develop the condition (or might only develop minor symptoms), forcing these persons to live under a cloud of doom for a portion of their lives is a significant potential harm. (28) Nonconsensual use, particularly for the purpose of surreptitious testing, thus has the potential to cause significant harm.
In addition, there may be other more speculative harms involving technology that is not yet available but that will be in the near future. One such speculative harm is nonconsensual cloning, (29) whereby someone obtains a sample of DNA without another person's knowledge, and uses it to create a clone without consent. (30) Sounds like science fiction? It may be for now, (31) but Congress has already considered legislation to ban cloning, noting as one of its findings that "because cloning requires no personal involvement by the person whose genetic material is used, cloning could easily be used to reproduce living or deceased persons without their consent." (32)
Finally, public opinion argues in favor of greater regulation: the American people have a strong desire to keep their genetic information protected. (33) The Senate report on its version of the bill that would become the Genetic Information Nondisclosure Act ("GINA") noted that: "Fears about the possible misuse of genetic knowledge appear to influence the public's desire to protect the privacy of genetic information." (34) Whether or not these fears are well-founded, if the public perceives that genetic information is not well-protected, individuals may be less likely to undergo important genetic tests, thus putting themselves at risk for conditions that could otherwise have been treated.
Widespread public perception of the security of genetic information is also likely to be negatively affected by knowledge of nonconsensual uses of genetic information. This is particularly true where many of the potential misuses will occur outside the relatively heavily regulated healthcare context. Erosion of the public's confidence in the security of genetic information could thus greatly lessen public support for technology with immense potential health benefits. (35) Thus, nonconsensual use of genetic information, which could erode confidence in the security of genetic information, has the potential to cause significant harm to the health of the American public at-large.
B. Genetic Information Is Different from Other Health Information
The harms noted above may more or less apply to the disclosure of health information other than genetic information, (36) such as the...
Prince Harry and the honey trap: an argument for criminalizing the nonconsensual use of genetic information.
|Author:||Guarnieri, W. Peter|
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COPYRIGHT GALE, Cengage Learning. All rights reserved.
COPYRIGHT GALE, Cengage Learning. All rights reserved.