1. Forensic DNA database issues Familial Searching, Privacy and Ethical Issues JS 115 : 11-15-06 Steven B. Lee

2. Outline Overview of CA DNA Database program Constitutionality DNA and Legal Privacy Issues Universal Databases Familial Searching of Databases

3. Assignments Assignments- Read Chapter 11 Inman, Chapter 16 Butler Read Validation Presentation by Butler –http://www.cstl.nist.gov/div831/strbase/pub_pres/Promeg aTalkOct2004.pdf –Write a 500 word summary and 3 Q and 3 A Read DNA Advisory Board QA guidelines –http://www.cstl.nist.gov/div831/strbase/dabqas.htm –Write a 500 word summary and 3 Q and 3 A Hand in both by hard copy weds November 29th

4. Acknowledgements Mike Chamberlain- Deputy Attorney General : CA DOJ- DNA Legal Unit Dr. Fred Bieber – Harvard Medical School Lazer et al. 2004. DNA and the Criminal Justice System. The Technology of Justice. MIT Press, November 2004. ISBN 0-262-62186-X. 424 pp.- see www.dnapolicy.netwww.dnapolicy.net –George Annas: Genetic Privacy in Lazer 2004 –Barry Steinhardt: Privacy and Forensic DNA Databanks –Amatai Etzione: DNA Tests and Databases in Criminal Justice: Individual Rights and the Common Good

5. California’s DNA Data Bank Program Third largest offender database in worldThird largest offender database in world Received > 400,000 samples since Nov. 2004Received > 400,000 samples since Nov. 2004 Now over 455,000 profiles in CAL-DNANow over 455,000 profiles in CAL-DNA Receive > 20,000 new buccal samples/monthReceive > 20,000 new buccal samples/month Monthly uploadMonthly upload –February 2006: 4,000 –March 2006:20,100 –April 2006:21,000 –May 2006:24,000 Over 300 hits from March-May, 2006Over 300 hits from March-May, 2006 Over 2285 total hits to dateOver 2285 total hits to date

6. Main Changes Under Prop. 69 Buccal swab collectionsBuccal swab collections All convicted felons qualifyAll convicted felons qualify Felony arrest provisionsFelony arrest provisions Collecting agency has verification responsibilityCollecting agency has verification responsibility Sample switch & sample tampering feloniesSample switch & sample tampering felonies Funding mechanismFunding mechanism

7. AB 2850 Proposed amendment to Prop. 69Proposed amendment to Prop. 69 “Clean-up legislation”“Clean-up legislation” Clarifies that arrestee collections are not retroactive (PC 296.1(b))Clarifies that arrestee collections are not retroactive (PC 296.1(b)) Restructures accreditation requirements for labs that produce forensic database profilesRestructures accreditation requirements for labs that produce forensic database profiles

8. Qualifying Offenses for Rapes Solved Via Database Hit

9. Qualifying Offenses for Homicides Solved Via Database Hit

10. California’s DNA Database Program Before Prop. 69

11. California’s DNA Database Program After Prop. 69 “Tell your friends about me!”

12. Growth of All-Felon Database Laws 2000 - 7 States2001 - 12 States 2002 - 21 States 2003 – 30 States 2004 – 37 States 2005 – 43 States

13. Arrestee Legislation

14. Constitutional Challenges

15. SF Daily Journal July 3, 2002 SF Chronicle March 27, 2002

16. Fourth 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.”

17. 4th Amendment: Only Reasonable Searches & Seizures Reasonableness is always a fact-specific, contextual determination StateInterest Privacy Interest Balanced Against Where warrant / probable cause, balance usually struck in favor of state... And where NO warrant and less or no suspicion, search may still be reasonable if the balance involves other factors such as: Special administrative or law enforcement needs  Special administrative or law enforcement needs  Diminished expectations of privacy  Minimal intrusions  Exigent circumstances

18. Genetic Privacy DNA and Legal Privacy Issues a.Definitions of Genetic Privacy b.Main controversial Issues: Databanks c.Genetic Privacy Debate/Discussion;

19. Privacy: Three overlapping Personal Interests (Annas 2004) Informational Privacy: Control of info Relational Privacy: Who’s your Daddy? Decisional Privacy: Freedom from Surveillance Right to be left alone

20. Genetic Privacy: Definitions Excerpts from http://www.csu.edu.au/learning/ncgr/gpi/odyssey/privacy/def_priv.html Also see: http://www.nhgri.nih.gov/12010621 http://www.bc.edu/bc_org/avp/law/lwsch/journals/bciclr/24_2/05_FMS.htm Privacy is a cultural construct. There are different definitions of privacy depending on its meaning within a context. The legal history of privacy helps define the term and gives it social meaning. The social and legal construct shapes our definition of the problem, and hence its proposed solutions. Seclusion from the sight, presence, or intrusion of others; not available for public use, control, or participation. ( Webster's II New Riverside Dictionary, 1984)

21. Genetic Privacy: Definitions Biomedical ethics definition: –Rights to privacy are valid claims against unauthorized access that have their basis in the right to authorize or decline access –“…state interests that may legitimately be balanced against privacy interests…” should be considered Forensic genetic testing and genetic privacy issues need to be carefully evaluated by the courts and by the scientific community for the balance of state vs privacy interests. Opponents to forensic DNA testing and databanks claim potential misuse of information Proponents claim the genetic information is of no use (since it is non-coding), protected from any use outside law enforcement and saves lives by exonerating the innocent and convicting the guilty (database cold hits)

22. A Legal Definition of Privacy: There is no specific Constitutional right to privacy set for in the Bill of Rights. However, the Supreme Court has upheld privacy rights in several cases. In the foundational treatise on the right to privacy, Supreme Court Justice Brandeis defined privacy as "the right to be left alone." [Warren and Brandies, "The Right to Privacy" 4 Harvard Law Review 193 (1890).] The article extends the notions of liberty and property to recognize a new right, the right to privacy.

23. A Definition of Privacy from the Field of Bioethics: In their book "Principles of Biomedical Ethics" Tom Beauchamp and James Childress define privacy as "a state or condition of physical or informational inaccessibility," (p. 406, 4th edition, Oxford University Press, New York, 1994) According to Beauchamp and Childress, privacy does not include the right to control access -- for someone may have privacy because others are ignoring him. They also make a careful distinction between privacy and autonomy. Privacy is justified by the principle of autonomy. "Rights to privacy are valid claims against unauthorized access that have their basis in the right to authorize or decline access. These rights are justified by rights of autonomous choice...expressed in the principle of respect for autonomy. In this respect, the justification of the right to privacy is parallel to the justification of the right to give an informed consent." They recommend that privacy policy proposals "carefully specify conditions of restricted access that will and will not count as a loss or violation of privacy. The policy should accurately define the zones that are considered private and not be invaded, and it should also state interests that may legitimately be balanced against privacy interests." (408) For convicted felons, clearly state interests are balanced against the privacy interests of the felons… see Etzioni 2004.

24. Genetic Privacy Concerns (Annas) Future Diary metaphor Possessing a DNA sample is analagous to having medical information stored on a disk The sample is stored as blood Later read by future application of technology Assumes/alleges that law enforcement is going to use the DNA sample for medical information!

25. Research Misuse Large repositories are tempting gold mines Research might include “the crime gene” research Commercial enterprises have strong interests in large biobanks

26. Other Privacy Issues Genetic exceptionalism: DNA (sample) is not a fingerprint: APOG- Powerful information –Genetic results can change a person’s self perception (w/r/t medical testing): Breast Cancer Example Categories of Rules –Collection –Analysis –Storage –Release Interface of Private sector: Our genes are not for sale (Nadar 2000)

27. DNA Data Bank Controversies Unauthorized use of DNA in Research Large biorepositories in forensic DNA databanks, military (AFDIL), newborn screening Guthrie cards and other biobanks contain “gold mines” of genetic information- temptations deCode genetics in Iceland Suggestion to altogether strip sample of identifiers is impractical for forensics for retesting. Retention of samples from innocent people

28. Other DNA Databank Issues Familial Searching- Your kin committed a crime Arrestee- Wrong place, wrong time Volunteer samples in elimination database or “DNA dragnet” Examples of DNA dragnets –1994 Michigan 160 African American –Costa Mesa, CA: 188 samples –Miami, FL- 2300 individuals

29. Why is trust so low? Old Bad Science (genetics) die hard Eugenics Era- Opponents see any genetics as a move to GAATACA! Biotech Greed: John Moore Case –Physician sold a cell line derived from John Moore’s spleen to a private biotech company without his permission –JM could claim no property interest in the cells Behavioral Genetics: The Criminal Gene- My genes made me do it! –Reports suggest a larger % of XYY in prison populations vs general population –Careful review of reports showed geneticist’s were cautious of the findings: Media played up the result- See Mange and Mange –Some poorly designed studies followed and further suggested a relationship to XYY –No causal relationship was ultimately found

30. Privacy Concerns “A DNA sample taken for fingerprinting purposes can, in principle, be used for a lot more than merely proving identity: it can tell you a lot about me – whether I carry mutations for disorders like cystic fibrosis, sickle-cell disease, or Tay-Sachs disease. Some time in the not so distant future, it may even tell you whether I carry the genetic variations predisposing me to schizophrenia or alcoholism – or traits even more likely to disturb the peace. Might the authorities, for instance, one day subject me to a more intensive scrutiny than would otherwise be the case simply because I have a mutation in the monoamine oxidase gene that reduces the activity of the enzyme? Some research suggests that this mutation may predispose me to antisocial behavior under certain circumstances. Could genetic profiling indeed become a new tool for preemptive action in law enforcement? Philip K. Dick’s 1956 story (which inspired the 2002 movie) “The Minority Report” may not be such far-fetched science fiction as we like to imagine.“ James Watson

31. Laws No single law protects all privacy rights Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule: Same rules apply to all medical information- covered entities (e.g. hospitals) are permitted but not required to disclose protected health information to law enforcement officials in accordance with state law, a court order, warrant, or subpoena. 45 C.F.R. § 164.512(f) GINA- Genetic Information Non discrimination Act 2003- Passed Senate -tabled with no action yet. Forensic Genetics: Different rules apply to different information (and varies State to State)

32. Consitutional Rights to privacy implicated by genetic testing Norman-Bloodsaw vs Lawrence Berkeley Laboratory Right to privacy protects against collection of information by illicit means as well as unauthorized disclosures to third parties

33. Genetic Privacy Act Glantz and Roche Ethical, Legal and social Implications (ELSI) program of the Human Genome Project Provides that : individuals own their own DNA and that no one else can use an individual’s DNA without the individual’s authorization. Exceptions include law enforcement, paternity and mass disasters

34. Genetic Privacy and Forensic DNA testing Opponents for use of DNA databanks include 5 of 12 on the Supreme Court (Kinkade vs US) Opponents cite the potential for misuse. DNA may be used to exclude you from health insurance and in hiring practices (a la GAATACA- and Neufeld!). “Proposition 69 now includes all arrestees (2009) and the rights of innocent citizens will be violated (Steinhardt)” Fear of eugenics, the criminal gene… unauthorized use of samples

35. Genetic Privacy as it relates to Forensic DNA testing STR markers are non-coding. They are not expressed. There is no detected advantage nor disadvantage of any particular allele combination (Butler 2006- no clear link to disease/phenotype). Access to the genetic information is restricted. The only authorized use of the information is for law enforcement (however, check state law descriptions by Steinhardt 2004). Criminals privacy interests are balanced against state interests in forensic DNA testing for criminal investigation and crime prevention (Etzioni 2004) “… state interests that may legitimately be balanced against privacy interests” If innocent, can request to have their profile removed (CA, US)

36. Annas 2004 Recognize individuals genetic rights –To determine if and when identifiable DNA samples are collected, stored or analyzed –To determine who has access to info and sample –To access their own genetic info –To all info for informed decision on collection, storage, analysis and disclosure Limit parental rights to collect, store or analyze childrens samples Prohibit use of samples not authorized by individual except for some uses in crime solving, paternity and identifying bodily remains Prohibit disclosures of genetic information without the individual’s explicit consent Ensure strict enforcement of laws and institutional policies Provide accessible remedies for individuals whose rights are violated Institute sufficient penalties to deter and punish violations

37. Steinhardt 2004 Biological samples should be destroyed after testing is complete and pending criminal matters are resolved (retest? – need resample every time?) Limit to convicted serious violent felonies States should make available testing for innocence No arrestees If person consents to DNA testing, then consent must be voluntary, informed and in writing. Should be done knowing sample will be destroyed if subject ceases to be a suspect All existing elimination databases should be destroyed

38. Etzioni 2004 Fear of Eugenics based government is unfounded. DNA serves to protect both the innocent and enhance public safety Our right to privacy is not infriged upon (or only minimally Innocent people should not be tested unless they truly volunteer Other parties should not have access to the information Private corporations are the ones that infringe most on our privacy rights, not government (as we will see in the Bloodlines film)

39. CA Penal Code § 299.5(h)CA Penal Code § 299.5(h) -“Except as provided in subdivision (g) and in order to protect the confidentiality and privacy of database and data bank information, the Department of Justice and local public DNA laboratories shall not otherwise be compelled in a criminal or civil proceeding to provide any DNA profile or forensic identification database or data bank information or its computer database program software or structures to any person or party seeking such records or information whether by subpoena or discovery, or other procedural device or inquiry.” Statutory Confidentiality

40. Is the sky really falling? “Any person who knowingly uses an offender specimen sample or DNA profile collected pursuant to this chapter for other than criminal identification or exclusion purposes, or for other than the identification of mission persons, or who knowingly discloses DNA or other forensic identification information developed pursuant to this section to an unauthorized individual or agency, for other than criminal identification or exclusion purposes, or for the identification of missing persons, in violation of this chapter, shall be punished by imprisonment in a county jail not exceeding one year or by imprisonment in the state prison.” Cal. Penal Code § 299.5(i)(1)(A):

41. Expulsion from CODIS / withdrawal of license to use CODIS softwareExpulsion from CODIS / withdrawal of license to use CODIS software 42 U.S.C. § 14132(c)42 U.S.C. § 14132(c) -“Failure to comply. Access to the [NDIS] index established by this section is subject to cancellation if the quality control and privacy requirements described in subsection (b) are not met.” CODIS Memorandum Of UnderstandingCODIS Memorandum Of Understanding Potential Sanctions For Violation

42. Sample Retention Related to privacy concernsRelated to privacy concerns Rationale for retaining sampleRationale for retaining sample –Confirmation testing after hit –Application of new technology or expansion of core STR loci –Testing of additional markers where two profiles match at available loci –Splitting sample for other law enforcement id. testing (e.g., Y-STR; mtDNA typing)

43. Small Group Discussion 1 What are the primary privacy interests implicated by DNA databanks? Given the privacy interests identified, whose samples should be collected? All felons, misdemeanors, arrestees, suspects, all individuals (universal?) Given the privacy interests identified under what circumstances, if any, should profiles or samples be removed from the database (Death, acquittal, expungement? Given the privacy interests identified, what should be done with “voluntary” exclusion samples and the profiles obtained from them?

44. Small Group Discussion 2 In your groups discuss the following genetic privacy issues: –Casework DNA is used for validation (non probative samples). –Results are presented and published sometimes with identifiers (especially in high profile cases) –Is this a misuse of the information? Why or why not?

45. Summary Privacy is a cultural construct with different meanings. Forensic genetic testing and genetic privacy issues need to be carefully evaluated by the courts and by the scientific community for the balance of state interests vs privacy interests. Opponents to forensic DNA testing and databanks claim potential misuse of information Proponents claim the genetic information is of no use (since it is non-coding), protected from any use outside law enforcement and saves lives by exonerating the innocent and convicting the guilty (database cold hits) Retention of DNA samples, arrestee testing and fear of unauthorized use and disclosure are hotly debated.

46. The “Universal” Database Debate Most effective way to catch criminals and deter crimeMost effective way to catch criminals and deter crime No issues of race, economic status, etc.No issues of race, economic status, etc. Evenhanded & fairEvenhanded & fair Forensic profiles contains far less personal info. than tax return or SSNForensic profiles contains far less personal info. than tax return or SSN Already seize blood from every newbornAlready seize blood from every newborn No additional intrusionNo additional intrusion Implicates non- diminished Fourth Amendment rights of “ordinary” citizensImplicates non- diminished Fourth Amendment rights of “ordinary” citizens Everyone a “suspect” in every crimeEveryone a “suspect” in every crime Practical concerns (cost, backlog, delay, etc.)Practical concerns (cost, backlog, delay, etc.) Increased risk of false positives with increased volumeIncreased risk of false positives with increased volume ProsCons

47. Reporting Familial “Hits” “Crimefighters suggest expanding DNA searches” “DNA of Criminals' Kin Cited in Solving Cases” “Vast DNA Bank Pits Policing Vs. Privacy”

56. NPR Morning Edition May 12, 2006 NPR Familial searching –http://www.npr.org/templates/story/story.php?storyId=5400380 NPR Morning edition Friday May 12, 2006 Title As DNA Databases Grow, Uses Grow Too Artist / Source NPR’s Morning Edition - Friday, May 12, 2006 Copyright (c) 2006 NPR File Name http://www.npr.org/dmg/dmg_wmref.php?prgCode=ME& showDate=12May2006&segNum=3&mediaPref=WM&sa uid=U824352291143148927127&getUnderwriting=1 http://www.npr.org/dmg/dmg_wmref.php?prgCode=ME& showDate=12May2006&segNum=3&mediaPref=WM&sa uid=U824352291143148927127&getUnderwriting=1

57. What Do You Think?

58. Questions for Small Group Discussion What are the intrusions that DNA databases pose at the family and community/group level? What (if any) are the policy implications? What are the privacy implications? Given that potential sib matches may provide significant leads, what are the needed resources to implement this type of search? What are the most significant challenges (include technical and non-technical-eg administrative, societal, and bioethical), that we may face in familial searches?

59. Not permitted under current NDIS and Cal- DNA policyNot permitted under current NDIS and Cal- DNA policy Preserving utility of Data Bank Program vs. solving one casePreserving utility of Data Bank Program vs. solving one case Privacy implicationsPrivacy implications –You become a suspect, and are contacted by police, just because you’re related to a convicted offender –Unfair? Profiling? Or just legitimate race-blind investigative lead? –Analogies: partial license plate; close mug shot Database designed to narrow field of suspectsDatabase designed to narrow field of suspects Raja v. Lockyer civil rights lawsuitRaja v. Lockyer civil rights lawsuit Experiences in United KingdomExperiences in United Kingdom