Forensic DNA database issues Familial Searching, Privacy and

Ethical Issues

JS 115 : 11-15-06Steven B. Lee

Outline

• Overview of CA DNA Database program

• Constitutionality

• DNA and Legal Privacy Issues

• Universal Databases

• Familial Searching of Databases

Assignments• Assignments- • Read Chapter 11 Inman, Chapter 16 Butler• Read Validation Presentation by Butler

– http://www.cstl.nist.gov/div831/strbase/pub_pres/PromegaTalkOct2004.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

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.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

California’s DNA Data Bank California’s DNA Data Bank ProgramProgram

• 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: February 2006: 4,0004,000– March 2006:March 2006: 20,10020,100– April 2006:April 2006: 21,000 21,000 – May 2006:May 2006: 24,00024,000

• Over Over 300 hits300 hits from March-May, 2006 from March-May, 2006• Over Over 2285 total hits2285 total hits to date to date

Main Changes Under Prop. 69Main 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 Collecting agency has verification responsibility responsibility

• Sample switch & sample tampering Sample switch & sample tampering feloniesfelonies

• Funding mechanismFunding mechanism

AB 2850AB 2850

• Proposed amendment to Prop. 69Proposed amendment to Prop. 69

• ““Clean-up legislation”Clean-up legislation”

• Clarifies that arrestee collections are not Clarifies that arrestee collections are not retroactive (PC 296.1(b))retroactive (PC 296.1(b))

• Restructures accreditation requirements Restructures accreditation requirements for labs that produce forensic database for labs that produce forensic database profilesprofiles

Burglary11%

Homicide2%

Drug9%

Inv. Manslaughter

2%

Rape31%

Robbery25%

Assault20%

Qualifying Offenses for Rapes Solved Via Database Hit

Assault24%

Burglary25%

Homicide25%

Robbery13%

Drug13%

Qualifying Offenses for Homicides Solved Via Database Hit

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

California’s DNA Database California’s DNA Database Program Program AfterAfter Prop. 69 Prop. 69

““Tell your friends about me!”Tell your friends about me!”

Growth of All-Felon Database LawsGrowth of All-Felon Database Laws2000 - 7 States 2001 - 12 States 2002 - 21 States

2003 – 30 States 2004 – 37 States 2005 – 43 States

Arrestee LegislationArrestee Legislation

Constitutional ChallengesConstitutional Challenges

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Fourth AmendmentFourth Amendment

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

4th Amendment: Only Reasonable Searches & Seizures4th Amendment: Only Reasonable Searches & Seizures

Reasonableness is always a fact-specific, Reasonableness is always a fact-specific, contextual determinationcontextual determination

State State InterestInterest

Privacy Privacy InterestInterest

Balanced Balanced AgainstAgainst

Where warrant / probable cause, balance usually struck in favor of state . . .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 And where NO warrant and less or no suspicion, search may still be reasonable

if the balance involves other factors such as:if the balance involves other factors such as:

Special administrative or law enforcement needsSpecial administrative or law enforcement needs

Diminished expectations of privacyDiminished expectations of privacy

Minimal intrusionsMinimal intrusions

Exigent circumstancesExigent circumstances

Genetic Privacy

DNA and Legal Privacy Issues

a. Definitions of Genetic Privacyb. Main controversial Issues: Databanksc. Genetic Privacy Debate/Discussion;

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

Genetic Privacy: DefinitionsExcerpts 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)

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)

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.

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.

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!

Research Misuse

• Large repositories are tempting gold mines

• Research might include “the crime gene” research

• Commercial enterprises have strong interests in large biobanks

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)

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

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

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

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

James WatsonJames Watson

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)

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

Genetic Privacy ActGlantz 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

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

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)

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

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

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)

• CA Penal Code CA Penal Code § 299.5(h)§ 299.5(h)-- “Except as provided in subdivision (g) and in order to “Except as provided in subdivision (g) and in order to

protect the confidentiality and privacy of database and protect the confidentiality and privacy of database and data bank information, the Department of Justice and data bank information, the Department of Justice and local public DNA laboratories shall not otherwise be local public DNA laboratories shall not otherwise be compelled in a criminal or civil proceeding to provide compelled in a criminal or civil proceeding to provide any DNA profile or forensic identification database or any DNA profile or forensic identification database or data bank information or its computer database data bank information or its computer database program software or structures to any person or party program software or structures to any person or party seeking such records or information whether by seeking such records or information whether by subpoena or discovery, or other procedural device or subpoena or discovery, or other procedural device or inquiry.”inquiry.”

Statutory ConfidentialityStatutory Confidentiality

Is the sky really falling?Is the sky really falling?

““Any person who knowingly uses an offender Any person who knowingly uses an offender specimen sample or DNA profile collected specimen sample or DNA profile collected pursuant to this chapter for other than pursuant to this chapter for other than criminal identification or exclusion purposes, criminal identification or exclusion purposes, or for other than the identification of mission or for other than the identification of mission persons, or who knowingly discloses DNA or persons, or who knowingly discloses DNA or other forensic identification information other forensic identification information developed pursuant to this section to an developed pursuant to this section to an unauthorized individual or agency, for other unauthorized individual or agency, for other than criminal identification or exclusion than criminal identification or exclusion purposes, or for the identification of missing purposes, or for the identification of missing persons, in violation of this chapter, shall be persons, in violation of this chapter, shall be punished by imprisonment in a county jail not punished by imprisonment in a county jail not exceeding one year or by imprisonment in the exceeding one year or by imprisonment in the state prison.”state prison.”

Cal. Penal Code § 299.5(i)(1)(A):Cal. Penal Code Cal. Penal Code § 299.5(i)(1)(A):§ 299.5(i)(1)(A):

• Expulsion from CODIS / withdrawal of license to Expulsion from CODIS / withdrawal of license to use CODIS softwareuse CODIS software

• 42 U.S.C. 42 U.S.C. § 14132(c)§ 14132(c)- ““Failure to comply. Access to the [NDIS] index Failure to comply. Access to the [NDIS] index

established by this section is subject to cancellation if established by this section is subject to cancellation if the quality control and privacy requirements described the quality control and privacy requirements described in subsection (b) are not met.”in subsection (b) are not met.”

• CODIS Memorandum Of UnderstandingCODIS Memorandum Of Understanding

Potential Sanctions For ViolationPotential Sanctions For Violation

Sample RetentionSample Retention

• Related to privacy concernsRelated to privacy concerns

• Rationale for retaining sampleRationale for retaining sample– Confirmation testing after hitConfirmation testing after hit– Application of new technology or Application of new technology or

expansion of core STR lociexpansion of core STR loci– Testing of additional markers where two Testing of additional markers where two

profiles match at available lociprofiles match at available loci– Splitting sample for other law enforcement Splitting sample for other law enforcement

id. testing (e.g., Y-STR; mtDNA typing)id. testing (e.g., Y-STR; mtDNA typing)

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?

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?

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.

The “Universal” Database DebateThe “Universal” Database Debate

• Most effective way to Most effective way to catch criminals and catch criminals and deter crimedeter crime

• No issues of race, No issues of race, economic status, etc.economic status, etc.

• Evenhanded & fairEvenhanded & fair• Forensic profiles Forensic profiles

contains far less contains far less personal info. than tax personal info. than tax return or SSNreturn or SSN

• Already seize blood Already seize blood from every newbornfrom every newborn

• No additional intrusionNo additional intrusion

• Implicates non-Implicates non-diminished Fourth diminished Fourth Amendment rights of Amendment rights of “ordinary” citizens“ordinary” citizens

• Everyone a “suspect” in Everyone a “suspect” in every crimeevery crime

• Practical concerns Practical concerns (cost, backlog, delay, (cost, backlog, delay, etc.)etc.)

• Increased risk of false Increased risk of false positives with increased positives with increased volumevolume

ProsPros ConsCons

Reporting Familial “Hits”Reporting Familial “Hits”

“Crimefighters suggest expanding DNA searches”

“DNA of Criminals' Kin Cited in Solving Cases”

“Vast DNA Bank Pits Policing Vs. Privacy”

NPR Morning EditionMay 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&sauid=U824352291143148927127&getUnderwriting=1

What Do You Think?What Do You Think?

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?

• Not permitted under current NDIS and Cal-Not permitted under current NDIS and Cal-DNA policyDNA policy

• Preserving utility of Data Bank Program vs. Preserving utility of Data Bank Program vs. solving one casesolving one case

• Privacy implicationsPrivacy implications– You become a suspect, and are contacted by You become a suspect, and are contacted by

police, just because you’re related to a convicted police, just because you’re related to a convicted offenderoffender

– Unfair? Profiling? Or just legitimate race-blind Unfair? Profiling? Or just legitimate race-blind investigative lead?investigative lead?

– Analogies: partial license plate; close mug shotAnalogies: partial license plate; close mug shot• Database designed to narrow field of Database designed to narrow field of

suspectssuspects• Raja v. LockyerRaja v. Lockyer civil rights lawsuit civil rights lawsuit• Experiences in United KingdomExperiences in United Kingdom