Privacy International

Privacy International

Databases and Evidence

DNA identification is benefiting from new scanning technology that can automatically match DNA samples against a large database in minutes. Police forces in several countries including Canada, Germany, and the United States have created national DNA databases.

Samples are being routinely taken from a larger group of people. Initially, it was only individuals convicted of sexual crimes. Then it was expanded to people convicted of other violent crimes and then to arrests. Now, many jurisdictions are collecting samples from all individuals arrested, even for the most minor offenses. The information is sometimes kept even if the individual is not charged, as is the case in the United Kingdom.

Former New York City Mayor Rudolf Giuliani even proposed that all children have a DNA sample collected at birth. In Australia, the United Kingdom, and the United States, police have been demanding that all individuals in a particular area voluntarily provide samples or face being considered a suspect. United States Attorney General Ashcroft has testified that he has asked the FBI to increase the capacity of its database from 1.5 million to 50 million profiles.

Genetic Privacy

Genetic data poses unique privacy issues since it can serve as an identifier and can also convey sensitive personal information. Not only does genetic information provide 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, Duchenne muscular dystrophy, and many others. Furthermore, altered genes are now known to play a part 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.[1]

Even more controversial than genetic predisposition to disease is the fact that "genes do appear to influence behavior."[2] Genes have been found to influence homosexuality, thrill seeking and tendencies towards violent criminal behavior.[3] 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."[4]

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."[5] Currently available scientific knowledge thus 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 often speculative or, at best, matters of probability.

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.[6] For example, 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."[7]

Both the general public and scientific researchers have recognized that safeguards for genetic information are needed. For example, polls have found that 86% of adults believe that doctors should ask permission before conducting any genetic testing and 93% believe that researchers should do the same before any analysis.[8] 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."[9]

Genetic Identification

Unlike fingerprints, DNA sequences are not unique (identical twins have different fingerprints but the same DNA profiles). DNA identification works by comparing particular regions of two samples and looking for differences rather than comparing entire DNA sequences. Identification is actually a process of combining several such comparisons and calculating the probability that the two samples are a false 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. But they can't entirely eliminate the chance of a false match."[10] That has proven to be true in at least one instance. In Britain, a DNA match between evidence left at the scene of a robbery and an individual who had already been entered into that country's DNA database turned out to be false despite calculated odds of 37 million to one that a false match would occur. According to a FBI spokesman, "[t]here's a greater chance that you'll find a close match as the databases get bigger."[11] Besides false matches, some criminals have become reportedly more savvy at manipulating results of DNA identification.[12]

Law enforcement agencies are increasingly relying upon DNA evidence, thus making it important that any genetic data collected is uncontaminated and accurately processed. Judges and courts have issued warrants,[13] indictments[14] and even convictions[15] based solely on DNA identification.

DNA identification is also heavily relied upon in order to exonerate previously convicted criminals. One of the best-known efforts is the Innocence Project at the Cardozo School of Law, Yeshiva University. Founded in 1992 by Professor Barry Scheck, the clinical law program provides legal assistance to persons challenging their convictions based on DNA evidence. The clinic has participated in thirty-six of the sixty-three convictions that have been overturned on the basis of DNA evidence since the 1980s. On the basis of the proportion of cases that have been overturned and related FBI data, the Innocence Project estimates that thousands of individuals wrongly convicted could be freed if provided with easier access to DNA testing. Similar Innocence Project programs have also started at the University of Wisconsin Law School, the University of Washington School of Law and the Santa Clara University of Law. [16]

Despite the recognition of such limitations, there is a push for more and larger DNA databases. DNA databases are often created from a strictly law enforcement purpose, usually related to violent offenders, but have expanded in purpose and scope. "In less than a decade, we have gone from collecting DNA from convicted sex offenders - on the theory that they are likely to be recidivists and that they frequently leave biological evidence - to data banks of all violent offenders; to juvenile offenders in 29 states; to testing of persons who have been arrested, but not convicted of a crime."[17] In the United States, local, state and federal law enforcement agencies contribute samples from crime scenes and those convicted of violent crimes into a national database to look for potential matches.[18] In April 2003, the Bush Administration proposed that DNA profiles from juvenile offenders and from adults who have been arrested but not convicted would be added to the FBI's national DNA database.[19] The White House also indicated it would spend about USD 1 billion over five years to promote the use of of DNA for law enforcement purposes.[20]

Other countries such as Great Britain are similarly considering proposals to expand their own national DNA databases.[21] Several Australian states have been considering laws that would permit the creation of a national DNA database.[22] One Australian legislator has even called for collecting DNA samples from babies at birth.[23]

Other, non-law enforcement related DNA databases have also emerged. Since the early 1990s, all personnel serving in the United States Armed Forces have been required to submit DNA samples to ensure later identification. The United States military's DNA depository "contains 2.1 million index card-sized files with the name, Social Security number, fingerprint and blood sample of every active duty military person."[441] However, the 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.[24]

In addition to government-related DNA identification, a new industry - paternity testing - has emerged, 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 done to establish paternity. In the United States, part of the reason for the rise in paternity DNA testing are federal requirements for identifying fathers in order to receive child support.[25] Paternity testing previously required blood samples and was more difficult to perform than currently used DNA tests - which may only require a few strands of hair.[26]

Genetic Testing

Advances in technology have made genetic testing easier and faster. According to genetic testing companies, kits costing USD 100 to USD 2,000 are available for over 400 diseases with hundreds more coming on the way.[17] The easy availability of tests vastly increases the amount of information at an individual's disposal. More problematic is the possibility that individuals will not able to control when such testing is conducted or how the results may be used. The two most controversial areas of genetic testing are in the workplace and the provision of medical and life insurance. Also, as in genetic identification, genetic testing is prone to quality control issues. A 1999 survey of genetic testing facilities found that of the 245 laboratories examined, 36 failed to meet high quality assurance standards.[28]

Several countries, such as Iceland and Estonia are building nationwide DNA databases for medical research. Many of these undertaking are encouraged by pharmaceutical companies and other business enterprises looking to make profits from new medical procedures and services. Some efforts have be made to establish legal frameworks for these databanks.[29]

  1. "From Maps to Medicine: About the Human Genome Research Project," National Human Genome Research Institute, http://www.nhgri.nih.gov:80/Policy_and_public_affairs/Communications/Publications/Maps_to_medicine/about.html
  2. 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).
  3. Id.
  4. 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.
  5. 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.
  6. Genome Landmark, Science http://www.sciencemag.org/feature/data/genomes/landmark.shl.
  7. 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.
  8. Public Attitudes Toward Medical Privacy, conducted by the Gallup Poll for the Institute for Health Freedom, September 2000, available at http://www.forhealthfreedom.org/Gallupsurvey/IHF-Gallup.html.
  9. 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, available at http://labor.senate.gov/Hearings/july00hrg/072000wt/072000jmj/collins720/collins720.htm.
  10. Simson Garfinkel, Database Nation: The Death of Privacy in the 21st Century 49 (O'Reilly 2000).
  11. Rebecca Pollard, "Crime Genes: A DNA Mismatch Raises Fears," ABCNews.com, June 19, 2000 http://abcnews.go.com/sections/tech/MITTechReview/techreview000608.html; Richard Willing, "Mismatch calls DNA tests into question," USA Today, February 8, 2000.
  12. Richard Willing, "Criminals try to outwit DNA," USA Today, August 28, 2000.
  13. Richard Willing, "Police expand DNA use: Charge man with rape using only genetic profile," USA Today, October 25, 2000.
  14. Michael Luo, "Unnamed Man Indicted by DNA: Suffolk DA Charges Suspect in 6 South Shore Rapes," Newsday, August 9, 2000.
  15. Bruce Hight, "DNA Can Carry Conviction," Austin-American Statesman, April 14, 2000.
  16. Frank J. Remington Center, Innocence Project http://www.law.wisc.edu/FJR/innocence/; Innocence Project Northwest http://www.law.washington.edu/ipnw/; Northern California Innocence Project http://www.scu.edu/scu/law/clinic/Special_Projects/Innocence_Project/innocence_project.html.
  17. Testimony of Barry Steinhardt, Associate Director of the American Civil Liberties Union, Before the House Judiciary Committee, Subcommittee on Crime, March 23, 2000, available at http://www.aclu.org/congress/l032300a.html.
  18. FBI Press Room, Press Release, October 13, 1998, DNA Index, available at http://www.fbi.gov/pressrel/pressrel98/dna.htm.
  19. Richard Willing, "White House Seeks to Expand DNA Database," USA Today, April 15, 2003.
  20. Id.
  21. "New doubts over DNA register," The Guardian, September 2, 2000, available at http://www.guardian.co.uk/Print/0,3858,4058441,00.html; Melissa Kite and Richard Ford, "Blair orders DNA register of criminals," The Times, September 1, 2000.
  22. "Concern over proposed DNA databases," Australian Broadcasting Corporation (ABC) Online, January 24, 2000 http://www.abc.net.au/worldtoday/s95485.htm; Stewart Taggart, "DNA Testing Furor in Wee Waa," Wired News, April 18, 2000 http://www.wired.com/news/print/0,1294,35727,00.html.
  23. "Call to take DNA from newborn babies to fight crime," Independent News, April 25, 2001 http://news.independent.co.uk/world/australasia/story.jsp?story=68669.
  24. Neil A. Lewis, "2 Marines who Refused to Comply with Genetic-testing Order Face a Court-Martial," The New York Times, April 13, 1996.
  25. 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.
  26. DNAnow.com, "Frequently Asked Questions," http://www.dnanow.com/faq.html.
  27. Lisa M. Krieger, "Genetic testing leaps ahead of social implications," San Jose Mercury News, July 3, 2001 http://www.siliconvalley.com/docs/news/depth/gene070301.htm.
  28. Margaret M. McGovern, MD, PhD; Marta O. Benach; Sylvan Wallenstein; Robert J. Desnick, PhD, MD; Richard Keenlyside, MD, MS, "Quality Assurance in Molecular Genetic Testing Laboratories," Journal of the American Medical Association, Volume 281 No. 9, March 3, 1999, at 835-40 http://jama.ama-assn.org/issues/v281n9/abs/jto90000.html.
  29. See, e.g., Iceland Act on Bio Banks.


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