“The power to assemble a permanent national DNA database of all offenders who have committed any of the crimes listed has catastrophic potential. If placed in the hands of an administration that chooses to ‘exalt order at the cost of liberty’ [such a] database could be used to repress dissent or, quite literally, to eliminate political opposition…Today, the court has opted for comprehensive DNA profiling of the least protected among us, and in so doing, has jeopardized us all.” Judge Stephen R. Reinhardt, dissenting in U.S. v Kincade, 9th Circuit Court of Appeals, 2004, a ruling that allowed parolees to be compelled to provide a DNA sample.
Genetic technologies provide a new arena for tensions between our cherished ideals of liberty, order, justice, and fairness. Newspapers report the wonders such genetic knowledge can bring, but less often the threats for which these “advances” are also responsible. In reality, the ability to identify people and determine elements of their genetic profiles has significant downsides.
The dominant ideology in Western society holds that the only problems caused by technologies are either unintended side effects or abuses. However, technologies are not designed to benefit all segments of society equally. Because of their size, scale, and requirements for capital investments and knowledge, modern technologies can allow already-powerful groups to consolidate their powers.
Many government and private programs collect biological tissues, DNA samples, and the results of genetic analyses. At the same time, tests for new specific genes are being developed and DNA databases are being shared among individuals and organizations. Although these practices themselves raise policy issues, the uses of such information (computerized and easily correlated) also put civil liberties at risk. These efforts often reflect a belief that genes determine who a person is and what he or she is likely to do, and thus how society should treat the individual. Yet despite talk about genes for homosexuality, intelligence, or violence, such complex behaviors are likely the result of many biological and non-biological factors.
The use of the genetic technologies for control is reserved for elites—medical professionals, government functionaries, the very wealthy and their agents. And the people whose data is collected will often be those with little power. Thus employers test employees, insurance companies and health organizations test patients, college officials test students, and legislators pass bills proposing to test disempowered groups (e.g., prisoners).
The US Department of Defense (DoD) insists on taking DNA samples from all of its personnel, ostensibly to aid in the identification of those killed in action or military accidents, although its database has also been used for law enforcement purposes. Yet the samples are to be kept for 50 years (long after people have left active duty), the program includes civilian employees who are not in harm’s way, the agency refuses to issue regulations barring all third-party use, and the Department will not accept waivers from the next of kin of subjects not wanting to donate tissues.
The American Civil Liberties Union (ACLU) suggests some factors to consider when data is being collected that will go into a systemic database: * Personal information should not be collected without individuals’ informed consent; * Mandatory collection must be limited to what is required to achieve legitimate policy objectives. Exceptions should require statutory authority and information must be destroyed or made anonymous as soon as the authorized use is completed; * The degree of control an individual has over such information should depend on how “sensitive” it is (e.g., its potential to cause the person harm if made accessible or misused and the importance the person places on its confidentiality); * Information on ethnic origin, political or religious beliefs, health status, and sexual and financial life are often considered sensitive. Possible harms include limits to a person’s economic, social, or political opportunities and needless embarrassment, stigma, or threats to the person’s safety.1
DNA sequencing “ladder” in an autoradiogam. Image courtesy www.all-about-forensic-science.com
Every politician is in favor of solving crime, yet the Founding Fathers still saw the need for the Fourth Amendment to prohibit unreasonable searches and seizures, and the constitutions of many states have even stronger provisions protecting privacy.2 Since the 1990s the FBI has been promoting the genetic screening of criminals for use in criminal investigations, with results being used to establish state DNA identification databanks and compiled into a single national data library, the Combined DNA Index System (CODIS).3 Yet the data—from about 10 million Americans so far—include samples from individuals whose crimes have low recidivism rates and whose crimes don’t usually leave tissue DNA behind. The US Attorney General has set up a program to “assess criminal justice system delays in the analysis of DNA evidence and develop recommendations to eliminate those delays” which began in March of 2003; however, there is little evidence of concern for the civil liberties aspects of the program.4 Access to CODIS is available to all law enforcement and judicial proceedings and, in a somewhat limited scope, to criminal defendants.5
An increasingly common development is the collection and filing in CODIS of DNA from people who are merely accused and arrested, seemingly violating the Constitutional presumption of innocence. In 2012, the highest court in Maryland ruled that DNA collection from arrestees violated the Fourth Amendment; according to The New York Times, of the 10,666 samples collected in the state last year from arrestees, only 10 were from people who were later convicted.6 In other words, for 99.9% of these “searches” it is hard to argue there is a valid criminal justice function being served. The issue is also before the Supreme Court of Vermont.7 In the meantime, the US Supreme Court has put the Maryland ruling on hold, indicating a likely review during its 2012-13 term.8
On the other hand, specific matching of DNA from crime-scene samples and from suspects or people convicted of crimes (as opposed to using a pre-existing databank) has resulted in the exoneration of many falsely convicted individuals. In about a quarter of these cases, the wrongly convicted defendants made confessions or gave incriminating statements, thus suggesting that existing investigative procedures often involve coercion or, at very least, fail to protect the presumption of innocence. Interestingly, many prosecutors and judges resist this sort of post-trial testing despite the fact that testing has led to the apprehension of the actual perpetrator.
Another civil liberties concern is that racial disparities so evident in the criminal justice system are also reflected in the databanks, thereby perpetuating the problem. Additionally, some proponents argue that current DNA collection techniques involve “only a mouth swab,” insisting this makes the procedure less “invasive” than taking blood samples and meeting the legal standard of reasonable searches.9
Genetic privacy, like medical privacy in general, involves questions of the dignity and integrity of the individual. Are the genetic data accurate? Can individuals access their own files? Can the donor correct inaccurate data? Are the custodians faithful and are technical security systems protecting the data where possible? Does the individual have control over which third parties are allowed access, and under what conditions? Many of the factors noted in the ACLU Policy above are directed toward addressing such privacy concerns.
Federal law has increasingly given attention to medical records privacy, especially in light of the growing trend toward computerization of medical information.10 The Health Insurance Portability and Accountability Act (HIPAA), 1996, imposes significant federal rules about privacy for health information—including genetic data—held by health care providers, group insurance programs (including Medicaid, Medicare, and Veterans Affairs), and “health care clearinghouses” (mainly billing services).11 11 It does not cover employment, individually purchased health insurance, or life insurance, even if these records contain health information.
Under the HIPAA statute, the “Privacy Rule” was promulgated in 2002, requiring covered organizations to provide patients with a notice describing how it will protect health information, including the patient’s right to see the records and make corrections, learn how it has been used, and request additional protections.12 A “Security Rule” covers administrative, physical, and technical safeguards that organizations use to assure the confidentiality, integrity, and availability of electronic protected health information. However, privacy issues continue to arise with regard to other collections of DNA, such as CODIS, collection by the DoD, etc.13
Scientists working with the Council for Responsible Genetics have documented hundreds of cases in which healthy people have been denied medical insurance or employment on the basis of genetic “predictions.” Yet few genetic diseases follow inevitably from having a specific genetic variant; most are probabilistic in occurrence. Genetic tests—which have inherent limits—cannot tell us if a genetic mutation will become manifest; likewise, if it does so, tests cannot tell us when in life this will occur or how severe the condition will be. In addition, many genetic conditions can be controlled or treated by interventions and environmental changes, which is why governments have mandated for decades that newborns be tested for phenylketonuria (PKU) and treated if the condition is found.
This discrimination was partially addressed when the HIPAA was implemented, which prohibited commercial health insurers from excluding people because of past or present medical conditions, including predisposition to certain diseases. HIPAA specifically states that genetic information in the absence of a current diagnosis is not a pre-existing condition; however, it does not prevent covered health plans from requesting genetic information from individuals as a part of the insurance underwriting process.
After many attempts, specific federal legislation finally passed in 2008 (the Genetic Information Nondiscrimination Act, or “GINA”) addressing genetic discrimination in health insurance and employment. The Departments of Labor, Health and Human Services, and the Treasury administer the use of genetic information in group and individual health insurance, and employment enforcement is under the Equal Employment Opportunity Commission (EEOC).14,15 GINA makes it illegal to discriminate on the basis of genetic information (including the genetic information of family members) and restricts entities such as employers, employment agencies, and labor organizations from seeking genetic information. The disclosure of genetic information to third parties is limited as well.
Starting in 2014, prohibitions against health insurance plans discriminating on the basis of health status are amplified under the Affordable Care Act.16 The act explicitly lists “genetic information” among the health status-related factors which cannot be used to establish rules for eligibility or coverage. However, sellers of life insurance, disability insurance, and long-term care insurance can still use genetic data to discriminate against applicants.
The availability of genetic data may seem to justify the creation of new human beings that lack specific, undesirable genetic variants, which raises additional concerns both about loss of privacy and increased opportunities for discrimination by powerful entities. In such a world, the desire for perfectionism and the ability to predict a baby’s characteristics would replace tolerance for natural variation and diversity. Powerful scientists have already called for programs of eugenics, cleverly labeled as “genetic enhancement,” to create more appealing suites of characteristics in individuals.17 Articles and television shows on “designer babies” were commonplace as many as ten years ago and, in conjunction with the 2012 Olympics, stories on “super athletes” were carried in the media, all of which raised the public profile of this controversial topic.18
It’s one thing to be curious about “genetic foreknowledge,” but when does that carry over into control of genetic futures—of children, for example? Genetic tests are conducted not only on prospective parents, but are now available to test fetuses for potential “genetic problems.”19 The newly developed techniques in the field of synthetic biology could potentially provide additional powerful tools and make them more widely available for similar ends.20
Could parental genetic decisions actually limit the civil liberties of children?21 There is a dystopian possibility—the creation of human-animal chimeras. After all, we have 98% genetic similarity to an ape (and 75% to a pumpkin for that matter!), suggesting that creation of chimeras is quite possible. Although the U.S. Patent Office has ruled that chimeras are ineligible for patenting, will they be considered sufficiently “human” to be accorded civil rights?22
Until recently, the civil liberties implications of genetic patents were only the concern of a few people. This changed on May 12, 2009 when the ACLU filed a lawsuit to challenge the validity of Myriad Genetics’ patent on the so-called “breast cancer genes” BRCA1 and BRCA2, despite the fact that 19 out of every 20 women with breast cancer do not have this gene configuration.23 The suit claims the patent is stifling research that could lead to cures and is limiting diagnostic testing and women’s options regarding their medical care. In other words, modern corporate genetic practices actually impede research because, “biotechnology companies are keeping university scientists from fully researching the effectiveness and environmental impact of the industry’s genetically modified crops [and human diseases].”24 Unlike European law, U.S. law does not contain a “research exemption” to prevent such stifling.25
Although human genetics research and development are usually presented as “advances,” they may also be setting back our civil liberties on many fronts. Chief among the downsides are increased numbers of widely-available databases that correlate many facets of people’s biology, lives, and activities, as well as increasing incidences of loss of privacy and discrimination. While federal legislation and administrative rules have begun to address these problems, private and governmental data mining grows rapidly as new technological formats are developed and a technological rationality (i.e., “more information is better”) continues to hold sway over public opinion. As society becomes more familiar with genetics, privacy violations and discrimination may decrease but—at the same time—the rationales for increasing the numbers of public information/DNA databases also increases. These negative consequences need to be more fully considered in any public policy decisions about genetic technologies.