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

Forensic DNA database issues
Familial Searching, Privacy and
Ethical Issues
JS 115 : 11-15-06
Steven B. Lee
Outline
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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/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
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
Program
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Third largest offender database in world
Received > 400,000 samples since Nov. 2004
Now over 455,000 profiles in CAL-DNA
Receive > 20,000 new buccal samples/month
Monthly upload
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February 2006:
March 2006:
April 2006:
May 2006:
4,000
20,100
21,000
24,000
• Over 300 hits from March-May, 2006
• Over 2285 total hits to date
Main Changes Under Prop. 69
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Buccal swab collections
All convicted felons qualify
Felony arrest provisions
Collecting agency has verification
responsibility
• Sample switch & sample tampering
felonies
• Funding mechanism
AB 2850
• Proposed amendment to Prop. 69
• “Clean-up legislation”
• Clarifies that arrestee collections are not
retroactive (PC 296.1(b))
• Restructures accreditation requirements
for labs that produce forensic database
profiles
Qualifying Offenses for Rapes Solved
Via Database Hit
Burglary
11%
Assault
20%
Homicide
2%
Drug
9%
Inv.
Manslaughter
2%
Robbery
25%
Rape
31%
Qualifying Offenses for Homicides
Solved Via Database Hit
Drug
13%
Assault
24%
Robbery
13%
Homicide
25%
Burglary
25%
California’s DNA Database
Program Before Prop. 69
California’s DNA Database
Program After Prop. 69
“Tell your friends about me!”
Growth of All-Felon Database Laws
2000 - 7 States
2003 – 30 States
2001 - 12 States
2004 – 37 States
2002 - 21 States
2005 – 43 States
Arrestee Legislation
Constitutional Challenges
SF Daily Journal July 3, 2002
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.”
4th Amendment: Only Reasonable Searches & Seizures
Reasonableness is always a fact-specific,
contextual determination
State
Interest
Balanced
Against
Privacy
Interest
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
 Diminished expectations of privacy
 Minimal intrusions
 Exigent circumstances
Genetic Privacy
DNA and Legal Privacy Issues
a. Definitions of Genetic Privacy
b. Main controversial Issues: Databanks
c. 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: 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)
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:
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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
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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 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
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 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
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)
Statutory Confidentiality
• 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.”
Is the sky really falling?
Cal.
Cal.Penal
Penal Code
Code §§299.5(i)(1)(A):
299.5(i)(1)(A):
“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.”
Potential Sanctions For Violation
• Expulsion from CODIS / withdrawal of license to
use CODIS software
• 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 Understanding
Sample Retention
• Related to privacy concerns
• Rationale 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)
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 Debate
Pros
• Most effective way to
catch criminals and
deter crime
• No issues of race,
economic status, etc.
• Evenhanded & fair
• Forensic profiles
contains far less
personal info. than tax
return or SSN
• Already seize blood
from every newborn
• No additional intrusion
Cons
• Implicates nondiminished Fourth
Amendment rights of
“ordinary” citizens
• Everyone a “suspect” in
every crime
• Practical concerns
(cost, backlog, delay,
etc.)
• Increased risk of false
positives with increased
volume
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 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
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 CalDNA policy
• Preserving utility of Data Bank Program vs.
solving one case
• Privacy 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
suspects
• Raja v. Lockyer civil rights lawsuit
• Experiences in United Kingdom