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EPIC --- Privacy and Human Rights Report 2006

Genetic Privacy

Genetic data poses unique privacy issues because it can serve as an identifier and can also convey sensitive personal information. Not only does genetic information provide something like a fingerprint through variations in genetic sequences; it also provides a growing amount of information about genetic diseases and predispositions.

Errors in the genetic code are responsible for an estimated 3,000 to 4,000 hereditary diseases, including Huntington's disease, cystic fibrosis, neurofibromatosis, and Duchenne muscular dystrophy. Furthermore, altered genes are now known to play a role in cancer, heart disease, diabetes, and many other common diseases. In these more common and complex disorders, genetic alterations increase a person's risk of developing that disorder. The disease itself results from the interaction of such genetic predispositions and environmental factors, including diet and lifestyle.[860]

In addition to indicating predisposition to disease, "genes do appear to influence behavior."[861] Although the findings are controversial and far from conclusive, genes have been found to influence homosexuality, thrill-seeking and tendencies towards violent criminal behavior.[862] Twin and adoption studies have shown that "nearly all behaviors that have been studied show moderate to high inheritability – usually to a somewhat greater degree than do many common physical diseases."[863]

The prevailing scientific opinion is that most behavior and human diseases are not the result of a single mutation or gene. Rather, most facets of human development "represent the culmination of lifelong interactions between our genome and the environment."[864] Currently, available scientific knowledge does not seem to provide a strong link between an individual's genetic sequence and that person's eventual development of disease or personality traits; such conclusions are matters of probability and must be interpreted accordingly.

However, it is an area of scientific development that is undergoing rapid change and the body of knowledge about the human genome is increasing rapidly. The human genome sequence was published in February 2001, immediately kicking off a debate of the future of genetic technology and its impact on society – including privacy.[865] For example, former United States Senators James M. Jeffords and Tom Daschle have commented, "[o]ne of the most difficult issues is determining the proper balance between privacy concerns and fair use of genetic information."[866]

Both the general public and scientific researchers have recognized that safeguards for genetic information are needed. For example, polls have found that 86 percent of US adults believe that doctors should ask permission before conducting any genetic testing and 93 percent believe that researchers should do the same before any analysis.[867] A 2003 Canadian study found that over 60% of Canadians were interested in learning their own genetic information even though the majority cited privacy concerns.[868] Dr. Francis S. Collins, Director of the National Human Genome Research Institute, has observed that "in genetics research studies, we are seeing individuals who opt not to participate in research because of their fear that this information could fall into the wrong hands and be used to deny them a job or a promotion."[869] Privacy concerns about genetic testing are heightened by the potential that test results may be inaccurate because of quality control problems in testing laboratories. A 2004 study from the EU determined that quality assurance programs are very effective when properly implemented; however, the researchers found that laboratory participation is often incomplete or fragmented.[870]

Genetic Identification

Each person's DNA, with the exception of identical twins, is different from that of every other human being.[871] DNA identification, therefore, works by comparing particular regions of two sequences and looking for differences rather than similarities. Identification is actually a process of combining several such comparisons and calculating the probability that the two sequences are a false match.

Reliable identification requires that samples be handled carefully to prevent contamination, that a sufficient number of segments be compared, and that laboratory technicians meet an appropriately high threshold for acceptable probability of a chance match. "Provided that tests are actually looking at different regions of the genome, and provided that the genetic patterns aren't 'structured' within a community by inbreeding, using multiple tests can reduce the chance of a false match from one in a hundred to one in a million or even one in 500 million.[872] But they can't entirely eliminate the chance of a false match."[873] In the United States, the standard for forensic identification requires a comparison of 13 DNA segments.[874] According to an FBI spokesman, "[t]here's a greater chance that you'll find a close match as the databases get bigger."[875] Besides false matches, some criminals have reportedly become savvier at manipulating results of DNA identification by wearing gloves, masks, and condoms in an attempt to avoid leaving behind any bodily fluids or other evidence at crime scenes.[876] In England, a police union has stopped officers from giving voluntary DNA samples in a sweep to catch a rapist, although policemen's fingerprints are routinely included in forensic fingerprint databases.[877]

Law enforcement agencies worldwide are increasingly relying upon DNA evidence. According to the 2002 global survey by Interpol, 77 of its 179 member countries perform DNA analysis and 41 member countries have forensic DNA databanks, which include both physical samples and databases of DNA profiles.[878] As of 2003, 36 of 46 European Interpol members perform forensic DNA testing, and 26 of them allow international exchange of information.[879] The percentage of members having DNA databanks is predicted to double in the next few years. The Interpol DNA Unit established a DNA Monitoring Expert Group, made up of experts from 10 member states.[880] The purpose of the group is to provide recommendations regarding the use of DNA in criminal investigations, in order to facilitate its use internationally.[881]

To facilitate the exchange of DNA information between member states, Interpol set up a DNA database pilot project in July 2003. Profiles are sent to Interpol in standardized numeric format and additional information such as name of the individual or the crime to which the individual is connected, is not required. If a match is found when searches are performed, police forces of the two countries communicate directly. The first "hit" on the Interpol database was recorded in 2004 when one of the DNA profiles submitted by the Slovenian authorities was matched against a profile sent to Interpol by the Croatian police.[882]

On June 13, 2007, all 27 EU countries agreed to unrestricted access to genetic information, fingerprints, and car registration information in all EU police databases.[883] Thus, police in one EU country will be able to enter a suspect’s genetic data into a database and obtain matches for any other EU countries as well. The accord has raised concern with some European officials who question the security of such databases.[884] The new system will also feature the sharing of fingerprints and pictures for non-EU citizens seeking visas to enter Europe. The system can store the data for up to 70 million people. It has been hailed as a way to tackle immigration issues and transnational crime.[885]

The United Kingdom has the largest forensic DNA databank in the world, which has expanded from 750,000 records in 2000 to more than 3.5 million records in 2007.[886] Since April 4, 2004, those who have been arrested but not charged are also included in the databank, as are those arrested for drunk driving, even if not convicted.[887] In fact, a 13-year old schoolgirl was arrested in early 2005 for throwing a snowball at a police car, and as part of the arrest the girl's DNA profile was recorded, and it will remain in the National DNA Database for the rest of her life.[888] There are now more than 700,000 children in the database, 100,000 of these had no charges filed against them, including 30 under the age of ten.[889] The database also contains information for more than one-third of the black male population in England.[890] In a recent decision, the House of Lords ruled that the law permitting retention of DNA samples taken from individuals, who are later acquitted or against whom charges are dropped, does not violate the European Convention on Human Rights.[891] Conversely, in May 2006, the Scottish Parliament decided against such retention citing privacy issues and the erosion of the doctrine of presumption of innocence.[892]

A pilot project is also underway in the British city of Bristol to collect DNA samples from 25,000 babies and their parents as part of a national DNA database that could be used for law enforcement.[893] Another proposal being considered is whether to expand the collection of DNA without consent for purposes of identification. This changes the current use of DNA, and it would expand collection to any individual suspected of an offense, including minor ones such as littering.[894]

Several Australian states, including Western Australia, ACT, and Queensland, have all signed a DNA information sharing agreement.[895] This brings the formation of a national database closer to fruition, as the Northern Territory, Tasmania, and South Australia had already agreed. Although New South Wales and Victoria have yet to join, both states have committed to doing so as soon as required changes are made to their legislation.[896] The Knesset Constitution, Law and Justice Committee of Israel also recently approved a regulation for police creation of a national forensic database that will include photographs, fingerprints, and DNA samples.[897]

The rules for inclusion in forensic DNA databanks and the rules that govern access to data, physical specimen retention, and privacy protections differ from country to country. In countries that operate under federal systems, such as the United States and Australia, rules for forensic DNA databanks can vary from jurisdiction to jurisdiction. Several European nations have expanded their databanks by including new categories of offenses (e.g., burglaries) or classes of offenders (e.g., violent offenders). Additionally, some nations include profiles of suspects or arrestees, either based on the crime for which they are arrested or based on the length of expected sentence if convicted. Some nations, however, remove or expunge these profiles or underlying samples, but there are nations that do not. For example, UK maintains all samples and profiles indefinitely.[898] In contrast to UK, some European countries have taken steps to further protect and limit the use of any genetic data they collect. In Sweden, the state only maintains genetic data for criminals who have spent more than two years in prison, while Norway only maintains data on serious offenders and requires a court order for such retention.[899] Germany also requires that the government obtain a court order and limits their genetic data to individuals convicted of certain specific offenses and are deemed likely to re-offend.[900]

In 2005, the Japanese National Police Agency also began using DNA data obtained from blood samples and bodily fluids collected at crime scenes to help in the identification of criminal suspects.[901] Prior to the system's implementation, DNA taken from suspects was considered to be personal information and all samples were destroyed at the completion of criminal investigations. With this new database, however, the government has stated the importance of this new technology as a possible replacement to fingerprints in identifying criminal suspects.[902]

South Africa has established a National DNA Criminal Intelligence Database.[903] The Database stores samples collected from suspects and crime scenes. DNA is not collected from convicted offenders. According to the South African DNA Project, DNA profiling is not possible because the country lacks proper equipment, funds, and experienced personnel. In 2006, South Korea established a genetic database containing information on all individuals convicted of sexual offenses.[904] Scientists from Russia’s Institute of General Genetics are pushing for a genome registration system for all criminals. They cited the high rate of recidivism as justification for establishment of a DNA database.[905] In 2004, Mexico also began expansion of a genetic database to help with the identification of criminals and their victims.[906]

In the United States, trends are also toward the expansion of forensic DNA databases. More than 80,000 people’s DNA is added every month.[907] Each of the 50 states has a DNA database of some kind, and each collects and enters information regarding all persons convicted of sex crimes and most felonies. The state and federal laws for collection of DNA have broadened considerably in recent years. In addition to collecting information on violent felons, DNA for misdemeanors is now being collected in 38 states, and 28 states collect DNA from juvenile offenders.[908] US judges and courts have issued warrants,[909] indictments[910] and even convictions[911] based solely on DNA identification. In the UK, a man was found and charged on the basis of a family member's DNA found in the country's DNA databank.[912]

Along with the expanded use of DNA evidence around the world, there has also been an expanded amount of criticism for some of the methods used to collect samples. The University of Nebraska, in September 2004, released a report examining the use and effectiveness of DNA "dragnets" or "sweeps" in the US.[913] The report focused on 18 instances where police asked individuals to give voluntary DNA samples in order to identify the perpetrator of a crime or series of crimes. The report found that of the 18 instances where “sweeps” were employed, in only one case was the DNA evidence used to identify the perpetrator of the crime. Therefore, the report concluded that DNA "sweeps," although becoming increasingly common, are extremely unproductive in identifying criminal suspects.[914]

DNA identification is also used in order to exonerate persons where post-conviction DNA testing of evidence can yield conclusive proof of innocence. One of the best-known efforts in this field is the Innocence Project. This clinical law program provides legal assistance to persons who are challenging their convictions based on DNA evidence. On April 23, 2007, the two hundredth individual was exonerated as a result of the work by the Innocence Project.[915] Based on the proportion of cases that have been overturned and related FBI data, the Innocence Project estimates that thousands of individuals who have been wrongly convicted could be freed if provided with easier access to DNA testing.[916] Due to the success of the Innocence Project, similar programs have now been established in 43 states as well as Canada, the UK, and Australia.[917]

In the United States, local, state and federal law enforcement agencies contribute DNA profiles from crime scenes and from those convicted of violent crimes into a national database in order to look for potential matches.[918] In April 2003, the Bush Administration also proposed adding DNA profiles from juvenile offenders and from adults who had been arrested but not convicted to the FBI's national DNA database.[919] The White House also indicated it would spend about USD 1 billion over five years to promote the use of DNA for law enforcement purposes.[920] The Department of Justice expanded DNA gathering to include anyone under criminal arrest by federal authorities, as well as illegal immigrants detained by federal agents. The new DNA sampling rule was authorized by Congress in a 2006 amendment to the Violence against Women Act.[921]

Other, non-law enforcement related DNA databases have also emerged for use in identification. Since the early 1990s, all personnel serving in the United States Armed Forces have been required to submit DNA samples to possibly be used for later identification. As of May 2003, the United States military's DNA depository contained 3.8 million samples, including samples from active duty and reserve personnel and some military contractors.[922] Pursuant to a 1996 Department of Defense Directive,[923] individuals also have the right to request their samples be destroyed at the end of their term of service.[924] However, the overall program has faced resistance within the military's own ranks. In 1996, two United States Marines faced court-martials when they refused to provide DNA samples for the identification program.[925]

In addition to government-related DNA identification, a new industry – paternity testing – has emerged, and is placing large amounts of genetic data wholly under private sector control. Despite the controversy surrounding law enforcement collection of DNA, a larger proportion of genetic identification is performed to establish paternity. In the United States, part of the reason for the rise in paternity DNA testing has been the introduction of federal laws requiring the identification of fathers in order to receive child support.[926] Additionally, although paternity testing previously required blood samples and was difficult to perform, tests currently in use require only a few strands of hair.[927]

Other private organizations have also established DNA databases. In 2000, a California company launched a DNA collection website called DNA.com.[928] The organization sought voluntary genetic information to establish a “Gene Trust.” The most successful private database is maintained by the Church of Jesus Christ of Latter-day Saints.[929] The church collects DNA for genealogical purposes, as well as possible resale to outside organizations.[930] In 2007, scientists in India completed a genetic database that contains genes from over 15,000 individuals from India’s sub-populations.[931] The scientists believe the data will help them understand the genetic disposition of ethnic groups to certain diseases.

Detection and Treatment of Disease

Advances in technology have also made genetic testing easier and faster. According to genetic testing companies, kits costing USD 100 to USD 2,000 are available for more than 400 diseases with hundreds more on the way.[932] The easy availability of these tests vastly increases the amount of information at an individual's disposal. However, it is important to remember that for disorders that involve the interaction between multiple genes and various environmental and lifestyle factors, the links between genes and their corresponding disease are not well understood. Genetic information may provide some indication of vulnerability, but it is not possible to say whether a specific individual will develop the disease, when the disease might develop, or how severe it may become. For example, the Washington Post reported in 2003 that researchers identified a gene responsible for the development of depression after exposure to extreme stress. People with a variation in the identified gene are more than twice as likely as people with the normal version of the gene to react to a traumatic event by becoming depressed. Nevertheless, 57 percent of people with the mutated gene never became depressed and 17 percent of people without the mutation developed depression in response to similar events.[933]

Several countries, such as Iceland and Estonia are building nationwide DNA databases for medical research. Many of these undertakings are encouraged by pharmaceutical companies and other business enterprises hoping to profit from new medical procedures and services. For example, Tonga sold its citizens’ gene pool information to an Australian company.[934] Some efforts have been made to establish legal frameworks for these databanks.[935] Nevertheless, Iceland's Supreme Court ruled in the spring of 2004 that the Health Database Act of 1998, which created the national DNA databank, does not comply with the country's constitutional privacy protections.[936]

While genetic screening has become easier and cheaper, treatment of genetic disease lags behind. Thus, while someone may have the ability to determine if they are at high-risk of disease, many people may choose not to find out due to the inability to take any precautionary measures. The concept of a "right not to know" would apply in these situations, allowing a person to control the knowledge about whether she has a certain genetic predisposition.

For example, Huntington's disease is an inherited neurological disease that results in death by a person in their late 30s or early 40s, after a period of extended deterioration of both mental and physical control.[937] Although there is no treatment for the condition, a reliable test for Huntington's does exist. The inheritability of the disease is straightforward, as demonstrated by the fact that children of a person with Huntington's will have a 50 percent chance of also being affected. The resistance to knowing one's propensity for Huntington's is evident in surveys finding that only 66 percent of those at risk of developing the disease would test themselves, with 15 percent of that group indicating they would contemplate suicide if they tested positive. Of those indicating that they would not want to test themselves, 30 percent indicated they would consider suicide if they did find out that they would manifest the disease.[938] Due to the emotional and psychological impact that such information would have, many people in these situations exercise their "right not to know" by refusing to test themselves.

In practice, maintaining a "right not to know" can be difficult. Due to the simple inheritability of Huntington's, one family member's decision to test herself for the disease will reveal information about other family members. For example, if a daughter decides to test herself for Huntington's due to a history of the disease through her mother's side of the family, the test results would indicate whether or not her mother also has the disease – thus compromising the mother's desire not to know.[939]

More problematic than the inability to properly interpret genetic test results is the possibility that individuals will not be able to control when genetic testing is conducted or how the results are used. For example, a man in Scotland voluntarily offered a DNA sample for research purposes on the condition of anonymity. However, the sample was later used to prosecute him after prosecutors decoded his genetic information and introduced it at trial.[940] The two most controversial areas of genetic testing are in the workplace and in the provision of medical and life insurance.

In Russia, scientists are discussing the adoption of genetic passports.[941] They believe the passports would prevent disease because they would allow for early detection of an individual’s predisposition to numerous health problems, including cardiovascular disease, neurological disorders, and cancer. The test would also allow parents to gain a “genetic portrait” of their newborn children. A genetic passport would also allow for adoption of personalized medicines.[942]

In the Workplace

As genetic databases become more common worldwide, there has been a concurrent rise in the use of testing by employers. Although there are legitimate uses of genetic testing, such as the prevention of occupational diseases, there is also concern that employers will use these tests to discriminate against current or potential employees. Without legal intervention, information indicating, for example, whether someone is prone to a debilitating illness or even an "undesirable" condition (such as laziness or depression) may be used by employers to discriminate against employees.

Genetic screening in the workplace has been conducted for decades but, based on limited polling of employers, still seems relatively rare when compared to general medical information accessed by employers. Some of the earliest genetic screening took place as early as the 1960s. Dow Chemical conducted genetic monitoring (genetic tests conducted over time to detect possible mutagenic effects of the workplace environment) from 1964-1977.[943] In 1982, a United States federal government survey found that 1.6 percent of companies were using genetic testing for employment purposes.[944]

The European Group on Ethics in Science and New Technologies (EGE) published an opinion in 2003, detailing the ethical aspects of workplace genetic testing.[945] As a general rule, the report recommends that employers consider a potential employee's current health situation and not on attempts to predict future health. Additionally, the report does recognize certain "exceptional cases" where the health and safety of third parties must be protected, and prescribes a set of "stringent conditions" for such screening. Among the conditions set forth in the report is the need for documented validity of the test used, informed consent of the individual, and protection of the confidentiality of the genetic information itself, which should be provided only to an independent health professional and not to the employer.[946] At this time, DNA is collected from applicants to the police force in both Trinidad and Tobago.[947] Both Australia and the UK have also considered collecting DNA samples from police recruits.[948]

Insurance

While often tied to workplace genetic testing in the US, where employers often provide and pay for health insurance, genetic testing has also been directly used in the underwriting of life and medical insurance. In February 2001, Norwich Union Life, one of Britain's largest insurers, admitted using genetic tests for breast and ovarian cancer and Alzheimer's disease to evaluate applicants. Moreover, Norwich Union Life was violating the industry's code of conduct since the genetic tests had not been approved by the government's Human Genetics Commission.[949] The controversial practice resulted in some individuals paying higher insurance premiums based on genetic predispositions, creating political pressure to outlaw the use of genetic data by insurers in the United Kingdom altogether.[950]

While representatives of Norwich Union Life claimed that the genetic tests were not compulsory, simply providing lower premiums for people that do not test positive for genetic tests can lead to rampant genetic testing. An "assessment spiral" can result when one company offers discounts for those with a particular genetic profile, creating pressure on competitors to offer similar discounts in order to keep "low-risk" policy holders and resulting in higher premiums for those that are not tested or do not possess the correct genetic make-up.[951] Thus, non-compulsory genetic testing can easily lead to genetic discrimination. As a result, in 2006, the Human Genetics Commission passed the Human Tissue Act, which banned genetic testing without individual permission except for medical and lawful investigative purposes.[952]

Legal Safeguards

Recognizing the issues implicated in widespread genetic testing, several international bodies have recommended that genetic testing be carefully circumscribed by law. In 1989, the European Parliament issued a resolution recommending legislation to prohibit genetic testing for the purposes of selecting workers or examining employees without their consent. It advised that employees must be informed of any analysis and implications of genetic data before tests are carried out and allowed to withdraw from testing at any time.[953] The Council of Europe has also recommended that "the admission to, or the continued exercise of . . . employment, should not be made dependent on the undergoing of tests or screening."[954] Similarly, the World Medical Association (WMA) has issued statements to this effect. In 1992, issuing a Declaration on the Human Genome Project, it recommended the adoption of laws similar to those that prohibit "the use of race discrimination in employment or insurance."[955] In October 2002, it announced that it had adopted guidelines on the development of centralized health storage databases that addressed "the issues of privacy, consent, individual access and accountability."[956]

In 1997, the United Nations Educational, Scientific and Cultural Organization (UNESCO) adopted a Universal Declaration on the Human Genome and Human Rights, outlining the rights of individuals to control the collection and use of genetic information.[957] The following year, the United Nations General Assembly endorsed the Declaration. More recently, the Article 29 Data Protection Working Party of the European Commission has further defined the appropriate safeguards that should be implemented with regard to the processing of genetic data.[958] The European Commission recognized the importance of genetic data in safeguarding a person's health and in pursuing scientific research, but also stressed the need for the creation of national rules in accordance with data protection principles established by the EU Data Protection Directive. These principles should "render the blanket implementation of mass genetic screening unlawful," and would attach special importance to the management, destruction, and anonymization of a person's sample after the information is obtained.[959]

In many cases, existing labor codes may indirectly prohibit genetic testing.[960] It is also possible that the use of genetic data by employers to discriminate against workers may violate equal opportunity or anti-discrimination laws. In the United States, for example, genetic testing may violate the 1964 Civil Rights Act that prohibits discrimination in employment on the basis of "race, sex, national origin, and religion," or the Americans with Disabilities Act of 1990, which prohibits discrimination in employment against a "qualified individual with a disability."[961]

Local and national governments are also beginning to address genetic privacy issues directly. In the United States, states rather than the federal government have passed most laws applying to genetic discrimination, testing or identification. Some states have passed laws that prohibit employment discrimination on the basis of genetic information.[962] In 2000, President Bill Clinton issued an executive order prohibiting the use of genetic information in federal agency hiring and promotion decisions.[963] The Genetic Information Nondiscrimination Act is currently pending in the United States.[964] The bill seeks to prohibit insurance and employment discrimination on the basis of genetic information.

In contrast to the US, most European countries have had broad data protection statutes in effect for many years. In February 1997, the Council of Europe's Committee of Ministers adopted the Recommendation on the Protection of Medical Data. This document, which applies to genetic data, protects personally identifiable information, limits the circle allowed to process health data, and sets standards for the use of medical data in scientific research.[965] In Australia, the application of the country's Privacy Act to genetic samples collected by authorities remains unclear. The law, however, has been determined to protect genetic data collected as part of a newborns screening card.[966]

[860] "Understanding Our Genetic Inheritance," National Human Genome Research Institute,
<http://www.genome.gov/10001477>.

[861] Leroy Hood and Lee Rowen, "Genes, Genomes, and Society," Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, Edited by Mark A. Rothstein 27 (Yale University Press 1997).
[862] Id.
[863] Peter McGuffin, Brien Riley, Robert Plomin, "Genomics and Behavior: Toward Behaviorial Genomics," Science 291 (5507): 1232, available at <http://www.sciencemag.org/cgi/content/full/291/5507/1232>.

[864] Leena Peltonen and Victor A. McKusick, "Genomics and Medicine: Dissecting Human Disease in the Postgenomic Era," Science 291 (5507): 1224, available at <http://www.sciencemag.org/cgi/content/full/291/5507/1224>.

[865] Genome Landmark, Science <http://www.sciencemag.org/feature/plus/sfg/special/index.shtml>.
[866] James M. Jeffords and Tom Daschle, "Policy Issues: Political Issues in the Genome Era," Science 291 (5507): 1249, available at <http://www.sciencemag.org/cgi/content/full/291/5507/1249>.

[867] "Public Attitudes Toward Medical Privacy," conducted by the Gallup Poll for the Institute for Health Freedom, September 2000 <http://www.forhealthfreedom.org/Gallupsurvey/IHF-Gallup.html>.
[868] “Public Opinion Research into Genetic Privacy Issues,” conducted by Pollara Earnscliffe, March 2003 available at <http://biotech.gc.ca/epic/site/cbs-scb.nsf/vwapj/Wave_1_GPI_ExSum.pdf/$FILE/Wave_1_GPI_ExSum.pdf>.
[869] Testimony of Francis S. Collins, M.D., Ph.D., Director, National Human Genome Research Institute, National Institutes of Health, Testimony Before the Health, Education, Labor, and Pensions Committee, United States Senate, Hearing on Genetic Information in the Workplace, July 20, 2000 <http://www.genome.gov/10001380>.
[870] Dolores Ibarreta; Robert Elles; Jean-Jacques Cassiman; Emilio Rodriguez-Cerezo; Elisabeth Dequeker, “Towards Quality Assurance and Harmonization of Genetic Testing Services in the European Union,” Nature Biotechnology, Volume 22, October 2004, at 1230-1235, available at <http://www.nature.com/nbt/journal/v22/n10/full/nbt1004-1230.html>.

[871] "Commission on DNA Technology in Forensic Science," National Research Council, DNA Technology in Forensic Science 9 (1992), available at <http://books.nap.edu/books/0309045878/html/>; Simson Garfinkel, Database Nation: The Death of Privacy in the 21st Century, 49 (O'Reilly 2000).

[872] Simson Garfinkel, Database Nation: The Death of Privacy in the 21st Century, 49 (O'Reilly 2000).
[873] Id.
[874] "DNA Forensics," US Department of Energy, Human Genome Project Information <http://www.ornl.gov/sci/techresources/Human_Genome/elsi/forensics.shtml>.
[875] Rebecca Pollard, "Crime Genes: A DNA Mismatch Raises Fears," TechnologyReview.com, May 2000
<http://www.technologyreview.com/Biotech/12083/>; Richard Willing, "Mismatch Calls DNA Tests into Question," USA Today, February 8, 2000.
[876] Richard Willing, "Criminals Try to Outwit DNA," USA Today, August 28, 2000, available at <http://www.fairfaxidlab.com/html/news.html>.
[877] DNA Resource Report, May 21, 2004.

[878] Interpol, "Global DNA Inquiry Results 2002" <http://www.interpol.int/Public/Forensic/dna/inquiry/default.asp>.
[879] Christopher H. Asplen, "International Perspectives on Forensic DNA Databases," ISRCL Conference, The Hague, August 24-28, 2003.
[880] Interpol, “Frequently Asked Questions about DNA Profiling” <http://www.interpol.int/Public/Forensic/dna/dnafaq.asp>.
[881] Id.

[882] Interpol, "First Hit From Interpol DNA Database" <http://www.interpol.int/Public/News/dna20040505.asp>.

[883] Ian Traynor, “DNA Database Agreed for Police Across EU,” The Guardian, June 13, 2007, available at <http://www.guardian.co.uk/eu/story/0,,2101686,00.html>.
[884] Id.
[885] Id.

[886] GeneWatch UK, “Police Retention of DNA,” February 2007, available at <http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Councillorsbrief07_2.pdf>.
[887] <http://www.theregister.co.uk/2004/07/23/police_dna_retention/>.
[888] Tom Wall, "A Simple Prank by a 13-year-old. Now Her Genetic Records Are on the National DNA Database for ever: Britain Commands Greater Powers than any Other State to Obtain, Use and Store Genetic Information," New Statesman, April 25, 2005.
[889] GeneWatch UK, supra.
[890] Phillip Johnston, “DNA file on 100,000 Innocent Children,” Telegraph.co.uk, May 23, 2007, available at <http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/05/23/ndna23.xml>.
[891] Regina v. Chief Constable of South Yorkshire Police (Respondent) ex parte LS (by his mother and litigation friend JB) (FC) (Appellant) and Regina v. Chief Constable of South Yorkshire Police (Respondent) ex parte Marper (FC)(Appellant) Consolidated Appeals, [2004] UKHL 39, July 22, 2004, available at <http://www.publications.parliament.uk/pa/ld200304/ldjudgmt/jd040722/york-1.htm>.
[892] GeneWatch UK, supra.

[893] Nick Kerswell, "Should We Collect DNA From Every Newborn Baby,” October 5, 2004 <http://www.alspac.bris.ac.uk/press/hgc2.shtml>.
[894] GeneWatch UK, supra.

[895] “National DNA Database Closer,” News.com.au, June 28, 2007, <http://www.theaustralian.news.com.au/story/0,20867,21982529-29277,00.html>.
[896] Id.
[897] Gideon Alon, “Knesset Committee Approves National DNA Database,” Haaretz.com, October 23, 2006, available at <http://www.haaretz.com/hasen/spages/778429.html>.

[898] Asplen, supra.
[899] Tom Wall, supra.
[900] Id.

[901] "NPA brings DNA database online," Daily Yomiuri (Tokyo), December 17, 2004.
[902] "DNA Resource Report January 14, 2005," DNAresource.com, January 14, 2005.

[903] Dr. Hsien-Hsien Lei, “South Africa’s DNA Project Launches Website,” June 30, 2007, available at <http://www.eyeondna.com/category/dna-around-the-world/>.
[904] D. Wes Rist, “International Brief – South Korea to Create National DNA Database of Sex Offenders,” Jurist, February 24, 2006, available at <http://jurist.law.pitt.edu/paperchase/2006/02/international-brief-south-korea-to.php>.
[905] Russia InfoCentre, “DNA Versus Criminals,” May 24, 2007, available at <http://www.russia-ic.com/news/show/4028/>.
[906] “Genetic Database Helps Identify Bodies Found in 2001 in Mexico Border City,” Genomics & Genetics Weekly, July 16, 2004.

[907] Rick Weiss, “Vast DNA Bank Pits Policing vs. Privacy,” Washington Post, June 3, 2006.
[908] Id.
[909] Richard Willing, "Police Expand DNA Use: Charge Man with Rape Using only Genetic Profile," USA Today, October 25, 2000.
[910] Michael Luo, "Unnamed Man Indicted by DNA: Suffolk DA Charges Suspect in 6 South Shore Rapes," Newsday, August 9, 2000.
[911] Bruce Hight, "DNA Can Carry Conviction," Austin-American Statesman, April 14, 2000.
[912] Shaoni Bhattacharya, "Killer Convicted thanks to Relative's DNA," New Scientist, April 20, 2004, <http://www.newscientist.com/news/news.jsp?id=ns99994908>.

[913] "PRI Report Cites Use of Police DNA Sweeps as Unproductive,' " University of Nebraska at Omaha, Department of Criminal Justice, September 9, 2004, available at <http://www.unomaha.edu/uac/releases/2004september/2004september9ppi.html>.
[914] Id.

[915] Innocence Project, “200 Exonerated: Too Many Wrongfully Convicted,” <http://www.innocenceproject.org/200/report.html>.
[916] Id.
[917] "The Innocence Project: Other Innocence Organizations" <http://www.innocenceproject.org/Content/313.php>.

[918] FBI Press Room, Press Release, October 13, 1998, DNA Index, available at
<http://www.fbi.gov/pressrel/pressrel02/ndis061402.htm>.
[919] Richard Willing, "White House Seeks to Expand DNA Database," USA Today, April 15, 2003.
[920] Id.
[921] Julia Preston, “US Set to Begin a Vast Expansion of DNA Sampling,” New York Times, February 5, 2007, available at <http://select.nytimes.com/gst/abstract.html?res=F30815FF385B0C768CDDAB0894DF404482>.

[922] Armed Forces Institute of Pathology, "Armed Forces Repository of Specimen Samples for the Identification of Remains" <http://www.afip.org/Departments/oafme/dna/afrssir/>.
[923] Department of Defense Directive 5154.30 of October 28, 1996, superseded by Department of Defense Directive 5154.30 of March 18, 2003.
[924] Armed Forces Institute of Pathology, "Request for Specimen Destruction" <http://www.afip.org/Departments/oafme/dna/afrssir/destruction.html>. "Will DNA Identification End Unknown Soldier Tradition?" Associated Press, May 29, 1998, available at <http://www.onlineathens.com/1998/052998/0529.a3soldier.html>.
[925] Neil A. Lewis, "2 Marines who Refused to Comply with Genetic-testing Order Face a Court-Martial," New York Times, April 13, 1996.

[926] Genelex: The Paternity DNA Testing Site, "Chapter 4: DNA in Parentage Testing, Updated for the Web Edition," April 2000 <http://www.genelex.com/paternitytesting/paternitybook4.html>.
[927] DNAnow.com, "Frequently Asked Questions," <http://www.dnanow.com/faq.html>.

[928] Christine Rosen, “Liberty, Privacy, and DNA Databases,” The New Atlantis, Spring 2003,
<http://www.thenewatlantis.com/archive/1/rosen.htm>.
[929] Id.
[930] Id.
[931] “Indian Genetic Database Offers R&D Advances,” India Business Insight, June 9, 2007.

[932] Lisa M. Krieger, "Genetic Testing Leaps ahead of Social Implications," San Jose Mercury News, July 3, 2001, available at <http://web.archive.org/web/20011118081116/http://www.siliconvalley.com/docs/news/depth/gene070301.htm>.
[933] Shankar Vedantam, "Variation in One Gene Linked to Depression," Washington Post, July 18, 2003, Page A1 <http://www.washingtonpost.com/ac2/wp-dyn?pagename=article&contentId=A8672-2003Jul17&notFound=true>.

[934] Rosen, supra.
[935] See, e.g., Iceland Act on Bio Banks.

[936] Icelandic Supreme Court, Case No. 151/2003, Ragnhildur Gudmundsdóttir v. The State of Iceland, November 27, 2003, <http://www.mannvernd.is/english/lawsuits/Icelandic_Supreme_Court_Verdict_151_2003.pdf>.

[937] National Institute of Neurological Disorders and Stroke, “NINDS Huntington’s Disease Information Page,” available at <http://www.ninds.nih.gov/disorders/huntington/huntington.htm>.
[938] Office of Technology Assessment (OTA): Genetic monitoring and screening in the workplace, OTA-BA-455 (Washington, United States Government Printing Office, October 1990), p. 13. (As cited in Conditions of Work Digest, "Workers' privacy III: Testing in the workplace," (International Labour Office 1993), at 66.)

[939] See Margaret R. McLean, "When What We Know Outstrips What We Can Do," Markkula Center for Applied Ethics, Issues in Ethics - V. 9, N. 2, available at <http://www.scu.edu/SCU/Centers/Ethics/publications/iie/v9n2/outstrips.html>; Sally Lehrman, "Predictive Genetic Testing: Do You Really Want to Know Your Future?" DNA Files, November 1998, available at <http://www.dnafiles.org/about/pgm4/topic.html>.

[940] Rosen, supra.

[941] “Genetic Passort Will Foretell the Future,” Science and Life, January 20, 2006, available at <http://www.nkj.ru/en/news/2399/>.
[942] Id.

[943] United States Congress, Office of Technology Assessment, "Genetic Monitoring and Screening in the Workplace" 44-45 (1990); "Are Your Genes Right for Your Job?" 3 Cal Law 25, 27 (May 1983). (As cited in Employee Privacy Law, ed. L. Camille Hébert, (West Group 2000) § 12:03.)
[944] United States Congress, Office of Technology Assessment, "The Role of Genetic Testing in the Prevention of Occupational Diseases" 33-35 (1983); United States Congress, Office of Technology Assessment, "Genetic Monitoring and Screening in the Workplace" 173-177 (1990).

[945] European Group on Ethics in Science and New Technologies, "Ethical Aspects of Genetic Testing in the Workplace," July 28, 2003 <http://ec.europa.eu/european_group_ethics/docs/avis18_en.pdf>.
[946] Id.
[947] Darren Bahaw, “Attorney Wants Random Drug Tests for all Cops,” Trinidad and Tobago Express, May 19, 2007.
[948] “Police Chiefs Call for DNA Checks on New Officers, Community Support Staff and Special Constables,” January 5, 2007, Personnel Today, <http://www.personneltoday.com/Articles/2007/01/05/38746/police-chiefs-call-for-dna-checks-on-new-officers-community-support-staff-and-special.html>.

[949] Melissa Kite, "Insurance Firm Admits Using Genetic Screening," Times, February 8, 2001.
[950] T. R. Reid, "Britain Moves to Ban Insurance Gene Tests," Washington Post, April 30, 2001.

[951] See Mark A. Rothstein, "Genetic Secrets: A Policy Framework," Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, Edited by Mark A. Rothstein (Yale University Press 1997), at 469-70.
[952] “Baroness Kennedy Welcomes DNA Testing Ban,” UK Human Genetics Commission, August 30, 2006, <http://www.hgc.gov.uk/Client/news_item.asp?NewsId=63>.

[953] European Parliament, "Resolution on the Ethical and Legal Problems of Genetic Engineering," O.J., No. C.96, April 17, 1989.
[954] Council of Europe, Committee of Ministers: Recommendation No. R(92)3 on Genetic Testing and Screening for Heath Care Purposes, Principle 6 (a) <http://web.archive.org/web/20040229042552/http://cm.coe.int/ta/rec/1992/92r3.htm>.
[955] See International Labour Office, Conditions of Work Digest: Worker's Privacy Part II: Monitoring and Surveillance in the Workplace (1993) 12(1).
[956] "The World Medical Association Declaration on Ethical Considerations Regarding Health Databases," WMA Policy, October 2002 <http://www.wma.net/e/policy/d1.htm>.

[957] United Nations Educational, Scientific and Cultural Organization (UNESCO), "Universal Declaration on the Human Genome and Human Rights," November 11, 1997 <http://unesdoc.unesco.org/images/0010/001096/109687eb.pdf>. Also see "Implementation of the Universal Declaration on the Human Genome and Human Rights: Report by the Director-General," September 22, 1999 <http://unesdoc.unesco.org/images/0011/001173/117335e.pdf>.
[958] "Working Document on Genetic Data: 12178/03/EN," Article 29 Data Protection Working Party, March 17, 2004 <http://europa.eu.int/comm/justice_home/fsj/privacy/docs/wpdocs/2004/wp91_en.pdf>.
[959] Id.

[960] See generally, International Labour Office, Conditions of Work Digest: Worker's Privacy Part III: Testing in the Workplace, (1993) 12(2).
[961] Pub. L. No. 101-335 (1990), codified at 42 USC §§ 1201.

[962] National Conference of State Legislatures, "State Genetics Employment Laws," <http://www.ncsl.org/programs/health/genetics/ndiscrim.htm>.
[963] Executive Order 13145 - To Prohibit Discrimination in Federal Employment Based on Genetic Information, February 10, 2000 <http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=2000_register&docid=fr10fe00-165.pdf>.
[964] NIH, “Genetic Information Nondiscrimination Act of 2007,” <http://www.genome.gov/24519851>.

[965] Council of Europe, Recommendation of the Committee of Ministers to Member States on the Protection of Medical Data: No. R (97) 5, February 13, 1997.
[966] Australian Law Reform Commission, Essentially Yours: The Protection of Human Genetic Information in Australia, March 14, 2003 <http://www.austlii.edu.au/au/other/alrc/publications/reports/96/>.