Presented by Chris Overall & Michael Walsh BINF 705 – Research Ethics 4/17/2007

1. Do the claims of public safety trump concerns for personal privacy in mandating national and/or international DNA databanks? Presented by Chris Overall & Michael Walsh BINF 705 – Research Ethics 4/17/2007

2. Genetic Profiles • Although the genome of most humans is 98% similar (evolutionary conservation), the non-coding regions can be highly variable at various loci (less selective pressure). • Short Tandem Repeats (STRs) are genetic loci characterized by contiguous, repeated patterns of two or more nucleotides and are typically found in the non-coding regions of the genome. • STRs are heritable units and multiple alleles occur naturally in a given population; the alleles are differentiated by the number of times that DNA pattern repeats (length). Everyone has these alleles.

3. Genetic Profiles (Cont'd) • PCR primers can be designed to amplify the STRs • The amplified STRs can then be separated by a technique such as gel electrophoresis to determine the number of repeats at the particular locus. • The number of repeats at several STR loci serves as a unique identifier (genetic fingerprint) for an individual. • It has been estimated that if 10 STR sites (or loci) are tested, the chance of a random match between two people is one in a billion. (Williamson and Duncan, 2002) • When DNA is typed, a computer-generated output graph displays a series of peaks corresponding to the STR alleles. The computer labels the alleles based on their length. (Simoncelli and Steinhardt, 2006)

4. Genetic Profiles (Cont'd) http://en.wikipedia.org/wiki/Image:Str_profile.jpg

5. DNA DatabanksDefinitions • DNA Databank – A repository containing the personal information, genetic profile, and/or DNA sample of individuals; typically used for forensic analysis, including identification, and medical research. • Criminal DNA Databank – A DNA databank of criminals; used for forensic analysis and identification purposes. • National DNA Databank – A DNA databank of various citizens of a country; can be used for forensic or medical purposes; these do not necessarily include all citizens. • Universal DNA Databank – Same as a national DNA databank, but inclusion in the databank is mandatory for every citizen.

6. DNA DatabanksSample Collection • Direct Methods – A biological sample is collected for profiling from an individual, voluntarily or via legal coercion. • DNA Dragnets – A group of individuals matching a particular description are “invited” to submit a DNA sample for profiling. • Indirect Methods – Indirect methods of suspect sample collection through family members, without consent or probable cause, can be used e.g. hair from a brush, discarded tissue, etc.

7. National DNA DatabanksUnited Kingdom - NDNAD • United Kingdom National DNADatabase (NDNAD). Also known as the UK National Criminal Intelligence Database. • Established in 1995 and is the oldest and largest national DNA database in the world. • Run by the Forensic Science Service (FSS). • Uses 10 STR loci to uniquely identify individuals. • Although inclusion in the original database was limited to convicted criminals and those on trial, the criteria have since changed. Now, even those who have been arrested are permanently included in the database.

8. National DNA DatabanksUnited States – CODIS • The “DNA Identification Act” (1994) authorized the FBI to create and maintain a centralized, national DNA databank and software system whereby genetic profiles could be easily shared at the local, state, and federal levels. Also, to set standards for sample collection and profile generation. • The Combined DNA Index System (CODIS) was the result of their effort. • The national database is known as the National DNA Index System.

9. National DNA DatabanksUnited States – CODIS (Cont’d) • Uses 13 STR loci to uniquely identify individuals. • All 50 state databases are currently connected to CODIS. http://en.wikipedia.org/wiki/Image:Codis_profile.jpg

10. National DNA DatabanksOthers • Most European countries • Iceland and Estonia (research purposes) • Portugal announced in 2005 that it has plans to create a mandatory, population-wide database.

11. Abridged History of DNA Databanks • Early 1990's – Earliest statutes passed by U.S. states to create DNA Databanks. • 1994 – Congress creates “DNA Identification Act”, authorizing FBI to develop a centralized DNA DB • 1995 - FSS starts UK DNA database • 1998 - FBI launches CODIS database • 1998 – All 50 US States have criminal DNA databases • 2004 – California passes Proposition 69, “The DNA Fingerprint, Unsolved Crime, and Innocent Protection Act” • 2004 – All states connected to CODIS • 2004 – U.S. enacted the “Justice For All Act”

12. Expanding Scope of U.S. State DNA Databanks • Original databanks were intended to only store genetic profiles/samples for convicted sexual offenders because of high rate of recidivism and because they leave biological evidence. • Currently, 34 states collect DNA samples from all felons, 28 from juvenile offenders, 30 from misdemeanors. • California, Virginia, Texas and Louisiana, to varying degrees, require collection of samples from suspects/arrestees.

13. California's Proposition 69 • All persons, including juveniles, convicted of any felony offense; • All persons, including juveniles, convicted of any sex offense, including misdemeanors; • All persons, including juveniles, who are in prison, or on probation or parole with a record of a past or present conviction of any qualifying offense; • All adults arrested for murder or rape; • All adults arrested for any felony offense (2009).

14. Expanding Scope of U.S. National DNA Databank • Originally, the national CODIS database only stored the genetic profiles of persons convicted of violent crimes and sex offenses. • States could not upload any profiles to the national database that did not meet these criteria. • The “Justice For All Act” of 2004 greatly expanded the amount of profiles that can be stored in the national database. • Changed the definition of “federal qualifying offense” to include “any felony.” (Simoncelli and Steinhardt, 2006)

15. Expanding Scope of U.S. National DNA Databank (Cont'd) • Allowed states to begin uploading to CODIS DNA profiles from any of the following: • Persons convicted of crimes; • Persons who have been charged in an indictment or information with a crime; and • Other persons whose DNA samples are collected under applicable legal authorities, provided that DNA profiles from arrestees who have not been charged in an indictment or information with a crime, and DNA samples that are voluntarily submitted solely for elimination purposes shall not be included in the National DNA Index system. (Simoncelli and Steinhardt, 2006)

16. Current Uses of DNA Databanks • Direct Matching – Direct comparison of all loci between two genetic profiles • Matching of a suspect genetic profile with an unknown crime scene genetic profile • Matching of two or more crime scene samples • Low Stringency Searches – Comparison of two genetic profiles, using less loci, to identify familial relationships.

17. Current Uses of DNA Databanks (Cont'd) • Surname Searches – Compare the Y chromosome profiles of a suspect sample and a crime scene sample. Those individuals having the surname of the match are then investigated. • Health Care Biobank Searches – Samples are attained from a health care provider, profiled, and then searched against one or more crime scene sample profiles.

18. Current Uses of DNA Databanks (Cont'd) • DNA Forensic Profiling – In addition to a fingerprint, the crime scene sample is examined for phenotypic traits that are then used to build a physical profile. • “Humanitarian” • Identification of unknown remains e.g. soldiers • Identification of missing persons e.g. babies and amnesiacs

19. Sources of Error in DNA Databanks • Genetic profiles are subject to human error, although very accurate when done correctly • Sampling Errors: errors in the collection, handling and storage of DNA samples • Analysis Errors: Errors associated with the DNA analysis itself. Significant ambiguities can arise in interpreting the computer-generated graph displays produced in DNA testing. • Simoncelli and Steinhardt, 2006

20. Sources of Error in DNA Databanks (Cont'd) • Phenomena that can produce analysis errors: • There is a mixture of two or more DNA sources. Which alleles correspond to each sample? • Unequal amounts of DNA from multiple sources. Is one sample masking another? • Degradation can make a source go undetected. • Air bubbles and other sources of noise can add spurious peaks. • Reporting Errors: Failure to report results of DNA tests in their entirety and the reporting of misleading or inaccurate statistical information. • Simoncelli and Steinhardt, 2006

21. Sources of Error in DNA DatabanksExamples • In 2002, it was discovered that 26-year-old Lazaro Soto Lusson was mistakenly charged with multiple felonies because the Las Vegas police crime lab switched the labels on two DNA samples. (Sampling Error) • Misinterpretation of DNA test led to the false conviction of Timothy Durham in Tulsa, Oklahoma. Durham was convicted of raping an 11-year-old girl and sentenced to 3,000 years in prison, despite having produced eleven alibi witnesses who placed him in another state at the time of the crime. The misinterpretation resulted from the difficulty of separating mixed samples. (Analysis Error) • Simoncelli and Steinhardt, 2006

22. Sources of Error in DNA DatabanksExamples (Cont’d) • Example of a Reporting Error • Josiah Sutton was wrongly convicted of rape and spent five years in jail before he was exonerated. • Sutton's conviction rested almost entirely on the basis of DNA tests performed by Houston Police Crime Laboratory. • Re-analysis of the lab report showed that the lab technician had mistakenly reported that Sutton's DNA profile was included in the profile of a semen sample taken from the back of the car, where the rape was committed, when it was not. • In addition, she presented the DNA data to the jury in a misleading way that overstated its value, and failed to provide statistical estimates that would have demonstrated that Sutton's DNA profile was but one of many that could have been included in the mixed evidentiary samples in the case, including a vaginal sample. • Simoncelli and Steinhardt, 2006

23. Working Definition of a Universal DNA Databank • A government-initiated national DNA databank. • Population-wide and mandatory inclusion in the databank. • The genetic profile is stored indefinitely. The original sample might also be maintained indefinitely.

24. Ethical Considerations for Creating Universal DNA DBsPro Arguments • Help to solve crimes that would otherwise have been unsolvable. • Deterrent to future crimes. • Will help to exonerate the innocent who have been falsely convicted. • If universal, would eliminate any biases that may exist in the current system e.g. racial biases. • ID cards based upon these databanks will help to prevent illegal entry into a country e.g. by terrorists or other foreign nationals. • Facilitate identification of unknown remains and missing children.

25. Ethical Considerations for Creating Universal DNA DBsCon Arguments • Intrusion of government into private information. • May lead to unfettered police powers. • Retention of biological samples is problematic; cannot guarantee that genetic information will not be used by a government for anything other than identification. • Violates “presumptive innocence”; keep the profile and samples “in case” you commit a crime in the future. • The databases are not error-free. The sheer volume of samples tested and put into the databases will increase the amount of errors, and thus, false positives.

26. Ethical Considerations for Creating Universal DNA DBsCon Arguments (Cont’d) • Very high cost with often unquantifiable or undetermined gains. • Often defendants in the U.S. do not have access to the same forensic profiling services as does the prosecution; negates the “exoneration” benefit. • An over-reliance on DNA methods might hamper or corrupt investigations; DNA testing is not foolproof, and just as a fingerprint, does not indicate guilt by itself. • Use of these databanks will most likely lead to some type of unforeseen discrimination or persecution of certain individuals or groups based upon their genetic makeup.

27. DNA DB's and the 4th AmendmentFourth Amendment “The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated, and no Warrants shall issue, but upon probable cause, supported by Oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized.”

28. DNA DB's and the 4th AmendmentDB’s Are Legal • Legal def of privacy is based on precedent not public perception. • An invasion is not unreasonable if something similar to it was considered reasonable in the past. • In order for something to constitute a search under the 4th amendment either the info or the method of obtaining the info must be unreasonable.

29. DNA DB's and the 4th AmendmentDB’s Are Legal (Cont’d) • Info: Katz v US • If you expose it to the public its not private • Face recognition, fingerprints, ... DNA? • Method: • Sampling techniques are not invasive • Cheek swab • Even if the DNA extraction is ruled to be a search the gov. can argue that it has a special need (natl sec etc.) for the info that outweighs the violation of privacy • i.e.: the search is reasonable because the need for the info is great

30. DNA DB's and the 4th AmendmentDB’s Are Not Legal • DNA contains a lot more info than a fingerprint • The search is not like others that have been allowed in the past • DNA sample can be reanalyzed in the future • Most people would consider this unreasonable • Info may be given to other governments • Those gov's may have different laws or concepts of privacy

31. Ethical Approaches to Analyzing and Resolving the DilemmaUtilitarianism • The ethical doctrine that the moral worth of an action is solely determined by its contribution to overall utility (consequentialism), where utility is often defined as happiness or pleasure. (http://en.wikipedia.org/wiki/Utilitarianism) • Inviolable human rights is a non-issue; these are typically subservient to the public good. • Do the benefits to the public good outweigh any negative consequences? • Which policies will produce the greatest happiness, on balance, of all of the individuals in society? (Arras and Steinbock, 1999) • Claims to privacy rights are irrelevant. Since universal DNA databanks promise an increase in crime deterrence and increases the likelihood of solving crimes, they are ethical and should be allowed.

32. Ethical Approaches to Analyzing and Resolving the DilemmaDeontological • A theory of duty or moral obligation, in which the intent and method of achieving a goal is often more important than achieving the goal itself. • Kant put forth the most famous deontological philosophy. • Must ask the question, “Can I, as a rational agent, consistently will that everyone in a similar situation should act this way? • Categorical imperative: Act always on that maxim (or principle) that you can consistently will as a principle of action for everyone similarly situated. • Since everyone is included, and if everyone agrees to it, then universal DNA databanks are ethical and should be allowed.

33. Ethical Approaches to Analyzing and Resolving the DilemmaRights-Based • The philosophy that human beings have natural rights that are inviolable by any government, unless the individual gives explicit consent to the contrary. • Given a set of natural rights, which policies will non-consensually violate these rights? • If privacy is a human right, then mandatory inclusion in a universal DNA databank is unethical and should not be allowed.

34. Ethical Approaches to Analyzing and Resolving the DilemmaCommunitarian • An ideology which emphasizes the responsibility of the individual to the community and the social importance of the family. (Oxford English Dictionary) • Maintains that society should articulate what is good, and asserts that such articulations are both necessary and legitimate. (Etzioni, 2006) • Which policies will promote the kind of community in which we want to live? (Arras and Steinbock, 1999) • This is a bit vague, since it will vary from community to community. But one might argue that if the databank only included the profile (identification) and not the biological sample, then it would be less prone to unknown government intrusions. In this case, a community might determine it to be ethical because it would maintain the type of community a person currently lives in while improving the community from a crime prevention standpoint. However, the ultimate decision needs to be determined by a community dialogue.

35. Proposed Solution to the Ethical and Legal DilemmasTest Everyone or No One • The following solution was proposed by Williamson et al. • Scenario 1: Take samples only from those individual who are involved in criminal proceedings: • Implies that genetic profiling is a punishment. • Rules of consent and privacy rights become unclear. • Biases inherent in the criminal justice system e.g. racial can become exacerbated. • Limited benefit to criminal investigations where a biological sample is present. • Authors argue that this is not a viable option because many ambiguities, inefficiencies and imbalances emerge. It is only reasonable, fair, and effective to test everyone or no one.

36. Proposed Solution to the Ethical and Legal DilemmasTest Everyone or No One (Cont’d) • Scenario 2: Take samples from everyone at birth: • Becomes the norm and would be seen only as a method of deterrence, rather than as a punishment. • Rules of consent and privacy rights are crystal clear (there are none). • Removes any inherent biases e.g. racial inherent in our criminal justice system. • Huge benefit to criminal investigations where a biological sample is present.

37. Proposed Solution to the Ethical and Legal DilemmasTest Everyone or No One (Cont’d) • Scenario 3: Test no one: • Role as punishment or deterrence is a moot point. • Rules of consent and privacy rights are crystal clear (complete privacy and no consent required). • There are not any inherent biases. • Huge roadblock to criminal investigations where a biological sample is present.

38. Proposed Solution to the Ethical and Legal DilemmasTest Everyone or No One (Cont’d) • The authors argue that testing everyone is the best option because it is reasonable, fair, and the benefits to society are substantial. • However, proper safeguards and checks and balances must be instituted to preserve privacy and unintended used of a person's genetic material. • As long as the appropriate regulatory measures are in place and the database is guaranteed to only be used for identification purposes, the “slippery slope”/misuse concerns are alleviated or minimized. • To that end, the authors propose five measures that they believe will act as safeguards for forensic DNA databases, regardless of whether or not they are mandated for everyone.

39. Proposed Solution to the Ethical and Legal DilemmasTest Everyone or No One (Cont’d) • Forensic laboratories responsible for DNA analysis should be independent of the police, and should be fully accredited using a national scheme, including definition of acceptable staff qualifications, periodic assessment and an enforceable code of conduct. • Any DNA sample taken from a crime scene should be sent directly to the laboratory for storage and testing. Where possible, it should be divided, and one portion should be reserved for the defense. Samples should always be kept in tamper-evident packaging. Williamson and Duncan, 2002

40. Proposed Solution to the Ethical and Legal DilemmasTest Everyone or No One (Cont’d) • Blood, cheek swabs or other samples from suspects, convicted offenders or volunteers should be sent directly to the laboratory for testing, and not be placed in police custody. These samples should be destroyed after analysis has taken place and DNA profiles entered as data. • All DNA profiles should be computerized and held on a national or international DNA database that is independent of police. The database needs to be accessible by police for effective use, but it is critical that police cannot enter or alter any data. Williamson and Duncan, 2002

41. Proposed Solution to the Ethical and Legal DilemmasTest Everyone or No One (Cont’d) • Any data accessed from a DNA database outside this accredited, independent process should not be admissible as evidence. Williamson and Duncan, 2002

42. References • Arras, JD, Steinbock, B, London, AJ. “Introduction: Moral Reasoning in the Medical Context.” Ethical Issues in Modern Medicine. Ed. JD Arras and B Steinbock. Mountain View: Mayfield Publishing Company, 1999. 1-40. • Bieber, FR, Brenner, CH, Lazer, D. Finding Criminals Through DNA of Their Relatives. Science. 312, 1315-16 (2006). • Cho, MK and Sankar, P. Forensic genetics and ethical, legal and social implications beyond the clinic. Nature Genetics. 36(11), S8-11 (2004). • Etzioni, A. A Communitarian Approach: A Viewpoint on the Study of the Legal, Ethical and Policy Considerations Raised by DNA Tests and Databases. The Journal of Law, Medicine, & Ethics. 34(2), 214-21 (2006). • Rothstein, MA and Talbott, MK. The Expanding Use of DNA in Law Enforcement: What Role for Privacy? The Journal of Law, Medicine, & Ethics. 34(2), 153-64 (2006). • Simoncelli, T and Steinhardt, B. California's Proposition 69: A Dangerous Precedent for Criminal DNA Databases. The Journal of Law, Medicine, & Ethics. 34(2), 199-213 (2006). • Williamson, R and Duncan, R. DNA testing for all. Nature. 418, 585-6 (2002).