DNA Privacy ??????

The Axiomatics of DNA PrivacyThe Axiomatics of DNA Privacy

Sheldon KrimskySheldon Krimsky

Tufts University, Medford, MATufts University, Medford, MA

www.tufts.edu/~skrimskywww.tufts.edu/~skrimsky

Forensic Bioinformatics 2007Forensic Bioinformatics 2007

The Science of DNA Profiling: An Expert ForumThe Science of DNA Profiling: An Expert Forum

August 17-19, 2007August 17-19, 2007

DNA Privacy ??????

Key Questions for Ethics, Civil Liberties & LawKey Questions for Ethics, Civil Liberties & Law

To what extent and in what context do and should To what extent and in what context do and should people have a right to claim privacy over their DNA?people have a right to claim privacy over their DNA? How do DNA privacy considerations compare in How do DNA privacy considerations compare in medicine versus forensics?medicine versus forensics? What role if any does the changing technology play What role if any does the changing technology play on questions of privacy?on questions of privacy? How do the balancing roles of personal privacy and How do the balancing roles of personal privacy and societal considerations play out in medicine vs. societal considerations play out in medicine vs. forensics? forensics?

DNA Privacy ??????

A Philosopher’s Approach to DNA PrivacyA Philosopher’s Approach to DNA Privacy

Legal scholars examine judicial precedent; Legal scholars examine judicial precedent; hierarchy among case law, legal theory, policy, hierarchy among case law, legal theory, policy, pragmaticspragmatics A philosopher is interested in first principles, A philosopher is interested in first principles, coherence, consistency, conceptual clarity, coherence, consistency, conceptual clarity, theories of justice, the relationship between theories of justice, the relationship between normative (what ought to be) versus empirical normative (what ought to be) versus empirical (what is).(what is).

DNA Privacy ??????

This InquiryThis Inquiry

Privacy in medicinePrivacy in medicine Forensic privacyForensic privacy Legal background behind 4Legal background behind 4 thth Amendment privacy Amendment privacy The axioms for DNA privacy in the context of legal The axioms for DNA privacy in the context of legal

theory and practice theory and practice A synthesis of medical and forensic privacyA synthesis of medical and forensic privacy

DNA Privacy ??????

What our DNA can RevealWhat our DNA can Reveal disease states (inherited genetic disorders)disease states (inherited genetic disorders) predispositional states (mutations that correlate withpredispositional states (mutations that correlate with

the onset of a disease)the onset of a disease) parental linkages—who your parents are or aren’tparental linkages—who your parents are or aren’t ancestral identity-Haplotype groupsancestral identity-Haplotype groups sibling connectionssibling connections familial disease patternsfamilial disease patterns environmental and drug sensitivitiesenvironmental and drug sensitivities locational presence (DNA left at a site).locational presence (DNA left at a site).

DNA Privacy ??????

Medical Genetic PrivacyMedical Genetic Privacy

There is a growing consensus and near unanimity There is a growing consensus and near unanimity that an individual’s medical genetic information is a that an individual’s medical genetic information is a private matter.private matter. Many states have passed legislation that protects Many states have passed legislation that protects people from the unauthorized use of medical genetic people from the unauthorized use of medical genetic information.information. These laws are tied to anti-genetic discrimination These laws are tied to anti-genetic discrimination goals.goals.

DNA Privacy ??????

Genetic DiscriminationGenetic DiscriminationIn the 1990s, Paul Billings, then at the In the 1990s, Paul Billings, then at the

Department of Veterans Affairs, Texas, published the Department of Veterans Affairs, Texas, published the first evidence of genetic discrimination in insurance first evidence of genetic discrimination in insurance and employment matters and reviewed more than and employment matters and reviewed more than 500 cases of people reporting discrimination based 500 cases of people reporting discrimination based on genetic information.on genetic information.

The most common cases: uninsurability;The most common cases: uninsurability;

Second most common: unemployability.Second most common: unemployability.

DNA Privacy ??????

State of Illinois Genetic PrivacyState of Illinois Genetic Privacy

Except as otherwise provided in this Act, genetic Except as otherwise provided in this Act, genetic testing and information derived from genetic testing is testing and information derived from genetic testing is confidential and privileged and may be released only confidential and privileged and may be released only to the individual tested to to persons specifically to the individual tested to to persons specifically authorized…by that individual…this information shall authorized…by that individual…this information shall not be admissible as evidence, nor discoverable of any not be admissible as evidence, nor discoverable of any action of any kind in any court….action of any kind in any court….

State of Illinois, Genetic Information Privacy Act 513, Ch. 410, Public State of Illinois, Genetic Information Privacy Act 513, Ch. 410, Public HealthHealth

DNA Privacy ??????

Mass Genetics Privacy ActMass Genetics Privacy Act

This act prohibits insurance and employment This act prohibits insurance and employment discrimination based on genetic information.discrimination based on genetic information. Genetic information acquires the same civil Genetic information acquires the same civil liberties protections as gender, race and sexual liberties protections as gender, race and sexual preference.preference. Informed consent for the use of genetic Informed consent for the use of genetic information is required prior to testing.information is required prior to testing.

DNA Privacy ??????

Federal Genetic Non-Discrimination Act (GINA)Federal Genetic Non-Discrimination Act (GINA)

Prohibit access to individual genetic information by insurance Prohibit access to individual genetic information by insurance companies making enrollment decisions and employers making hiring companies making enrollment decisions and employers making hiring decisions. decisions. Prohibit insurance companies from discriminating against an applicant Prohibit insurance companies from discriminating against an applicant for a group or individual health plan based on genetic information, the for a group or individual health plan based on genetic information, the refusal to produce genetic information and for having been genetically refusal to produce genetic information and for having been genetically tested in the past. tested in the past. Prohibit insurance companies from requesting that applicants be Prohibit insurance companies from requesting that applicants be genetically tested. genetically tested. Prohibit employers from using genetic information to refuse Prohibit employers from using genetic information to refuse employment and from collecting such data.employment and from collecting such data.

DNA Privacy ?????

GINA 2007GINA 2007

Genetic information is defined in the bill as Genetic information is defined in the bill as that information obtained from an individual’s that information obtained from an individual’s genetic test results, as well as genetic test results genetic test results, as well as genetic test results of family members and the occurrence of a of family members and the occurrence of a disease or disorder in family members. disease or disorder in family members.

Does analysis of DNA for medically Does analysis of DNA for medically important polymorphisms that could be used for important polymorphisms that could be used for identification purposes fall under this?identification purposes fall under this?

DNA Privacy ??????

Status of GINAStatus of GINA US Senate passed GINA 2003 (95-0); 2005: S-306 (98-0)US Senate passed GINA 2003 (95-0); 2005: S-306 (98-0) US House passed HR 493 on April 24, 2007 by a vote of US House passed HR 493 on April 24, 2007 by a vote of 420-3. 420-3. Jan. 31, 2007: Senate Committee on Health, Education, Jan. 31, 2007: Senate Committee on Health, Education, Labor and Pensions approved GINA 19-2; two senators Labor and Pensions approved GINA 19-2; two senators threatened to block the bill which would not prohibit threatened to block the bill which would not prohibit discrimination against embryos that have found to be at risk discrimination against embryos that have found to be at risk for disease through genetic testing prior to implantation.for disease through genetic testing prior to implantation.

DNA Privacy ??????

James Watson offers his genome for sequencing with James Watson offers his genome for sequencing with an expectation of privacyan expectation of privacy

At 79, James Watson donated his DNA to At 79, James Watson donated his DNA to be sequenced at a cost of $1 million.be sequenced at a cost of $1 million.

However, Watson expressed an However, Watson expressed an expectation of privacy regarding a expectation of privacy regarding a segment of his genetic code that might segment of his genetic code that might reveal his predisposition to Alzheimer’s reveal his predisposition to Alzheimer’s disease. One of his grandmothers died of disease. One of his grandmothers died of Alzheimer’s at the age of 84. He figures Alzheimer’s at the age of 84. He figures his chances are one in four and he does his chances are one in four and he does

not wish to knownot wish to know..

DNA Privacy ?????

Diseases for which genetic testing is available

DNA Privacy ?????

DNA Privacy ?????

DNA Privacy ??????

Privacy of DNA in a Forensic ContextPrivacy of DNA in a Forensic Context

To what extent does privacy enter into forensic uses To what extent does privacy enter into forensic uses of DNA?of DNA? Courts have upheld 4Courts have upheld 4thth amendment privacy rights amendment privacy rights in relationship to degree of intrusion: our bodies; our in relationship to degree of intrusion: our bodies; our home; our auto; entering a phone booth with an home; our auto; entering a phone booth with an expectation of privacy; thermal imaging a home. expectation of privacy; thermal imaging a home. Would intrusion into our DNA meet the standard Would intrusion into our DNA meet the standard the Supreme Court set in Katz v. U.S. (1967)?the Supreme Court set in Katz v. U.S. (1967)?

DNA Privacy ??????

Conditions for a Reasonable Expectation of PrivacyConditions for a Reasonable Expectation of Privacy

Extent to which DNA is exposed to the public.Extent to which DNA is exposed to the public.

(The analysis of the information is clearly not)(The analysis of the information is clearly not)

Extent of bodily intrusion in obtaining a DNA Extent of bodily intrusion in obtaining a DNA

sample (not relevant for abandoned DNA)sample (not relevant for abandoned DNA)

Nature of the information extracted from a DNA Nature of the information extracted from a DNA

profile (sensitive information regardless of how profile (sensitive information regardless of how

the DNA is taken or found).the DNA is taken or found).

DNA Privacy ?????

DNA Fingerprint Act 2005DNA Fingerprint Act 2005The DNA Fingerprint Act of 2005 (P.L. 109-162): signed into law in The DNA Fingerprint Act of 2005 (P.L. 109-162): signed into law in January 2006, authorizing DNA collection and retention from persons January 2006, authorizing DNA collection and retention from persons arrested or non-U.S. persons detained under federal authority. Attorney arrested or non-U.S. persons detained under federal authority. Attorney General is given broad discretionary power to grant DNA testing General is given broad discretionary power to grant DNA testing authority to any federal agency. Allows states to upload any profiles thatauthority to any federal agency. Allows states to upload any profiles that are collected under “applicable legal authority,” so long as voluntarily are collected under “applicable legal authority,” so long as voluntarily submitted samples are not included.submitted samples are not included.

““The Attorney General may, as prescribed by the Attorney General The Attorney General may, as prescribed by the Attorney General in regulation, collect DNA samples from individuals who are in regulation, collect DNA samples from individuals who are arrested or from non-United States persons who are detained under arrested or from non-United States persons who are detained under the authority of the United States.”the authority of the United States.”The Attorney General may …. Authorize and direct any other The Attorney General may …. Authorize and direct any other agency of the United States that arrests or detains individuals or agency of the United States that arrests or detains individuals or supervises individuals facing charges to carry out any function and supervises individuals facing charges to carry out any function and exercise any power of the Attorney General under this section.”exercise any power of the Attorney General under this section.”

DNA Privacy ?????

When suspicion is low and intrusiveness is high, the 4th Amendment protection is generally high. In contrast, as suspicion grows and intrusiveness diminishes, the protection against the invasion of privacy by law enforcement weakens.

Law enforcement agents can get a court order for forced blood samples. As DNA identification no longer requires a blood sample, rather a cheek swab, intrusiveness has dropped precipitously and so too has 4th Amendment protection.

DNA Privacy ??????

Suspicion, Intrusiveness & PrivacySuspicion, Intrusiveness & Privacy

Intrusiveness

Low

Low

44

thth A

ME

ND

ME

NT

PR

OT

EC

TIO

N A

ME

ND

ME

NT

PR

OT

EC

TIO

N

Hig

h

Hig

h

Hig

h

S

US

PIC

ION

L

ow

No warrant required

Search warrant required

DNA Privacy ??????

Law Enforcement Purpose , Intrusiveness & PrivacyLaw Enforcement Purpose , Intrusiveness & Privacy

Law Enforcement Purpose

Special needs, balancing, probable cause, individualized suspicion

Low

Low

44

thth A

ME

ND

ME

NT

PR

OT

EC

TIO

N A

ME

ND

ME

NT

PR

OT

EC

TIO

N

H

igh

Hig

h

Lo

w

Ph

ysic

al I

ntr

usi

on

Hig

h

Fingerprints, swabs, databanks, shed DNA

Home entry, wire tap

Blood sample

National Security Agency evesdropping

DNA Privacy ??????

Genetic PrivacyGenetic Privacy

Law Enforcement Purpose

Special needs, balancing, probable cause, individualized suspicion

Low

Low

44

thth A

ME

ND

ME

NT

PR

OT

EC

TIO

N A

ME

ND

ME

NT

PR

OT

EC

TIO

N

H

igh

Hig

h

Low

D

NA

In

tru

sion

H

igh

Only alleles for identification

Biological sample; total genome; surreptitious DNA

Ancestry alleles

Suspicionless CODIS checks

DNA Privacy ??????

Law Enforcement Purpose , Intrusiveness & PrivacyLaw Enforcement Purpose , Intrusiveness & Privacy

Law Enforcement Purpose

Special needs, balancing, probable cause, individualized suspicion

Low

Low

44

thth A

ME

ND

ME

NT

PR

OT

EC

TIO

N A

ME

ND

ME

NT

PR

OT

EC

TIO

N

H

igh

Hig

h

Low

E

xpec

tati

on o

f P

riva

cy

Hig

h

incarcerated

released convicted pedophile

other parolees

probationers

suspected felons

Illegal aliensarrestee not charged

suspicionless individuals

DNA Privacy ?????

The ASHG Policy on DisclosureThe ASHG Policy on Disclosure

““““Genetic information, like all medical information, Genetic information, like all medical information, should be protected by the legal and ethical should be protected by the legal and ethical principle of confidentiality.”principle of confidentiality.”

““it is useful to view the DNA molecule as a it is useful to view the DNA molecule as a medical record in its own right for privacy medical record in its own right for privacy purposes” purposes” George Annas, “Genetic Privacy”George Annas, “Genetic Privacy”

DNA Privacy ?????

Who gets their DNA on CODIS?Who gets their DNA on CODIS?

““DNA creep” is the expression for the widening of DNA creep” is the expression for the widening of criteria for including DNA samples on national criteria for including DNA samples on national databanks: convicted for felonies; charged with databanks: convicted for felonies; charged with felonies; arrested or detained for felonies; felonies; arrested or detained for felonies;

DNA Privacy ?????

1991 FBI Legislative Guidelines for DNA Databases1991 FBI Legislative Guidelines for DNA Databases

Only DNA records that relate to the Only DNA records that relate to the identification of individuals; not about physical identification of individuals; not about physical characteristics, traits, predispositions for disease characteristics, traits, predispositions for disease should be collectedshould be collected

Personal information stored in a state DNA Personal information stored in a state DNA database should be limited to the data necessary database should be limited to the data necessary to generate investigative leads and to support to generate investigative leads and to support statistical interpretations of test results.statistical interpretations of test results.

DNA Privacy ?????

States broaden criteriaStates broaden criteria

In the last few years, enthusiasm for DNA banking has In the last few years, enthusiasm for DNA banking has prompted some state legislatures to expand their databanks prompted some state legislatures to expand their databanks beyond convicted offenders to arrestees even if not beyond convicted offenders to arrestees even if not convicted of a crime. 11 states – VA, TX, LA, CA, NM, convicted of a crime. 11 states – VA, TX, LA, CA, NM, CA, ND, KA, TN, AZ, and AK – have approved CA, ND, KA, TN, AZ, and AK – have approved legislation to allow DNA testing of some categories of legislation to allow DNA testing of some categories of arrested individuals .arrested individuals .

In 2006, Minnesota’s Court of Appeals declared its In 2006, Minnesota’s Court of Appeals declared its arrestee law unconstitutional leaving 10 states with active arrestee law unconstitutional leaving 10 states with active legislation that allows for the collection and retention of legislation that allows for the collection and retention of DNA from persons who are arrested. DNA from persons who are arrested.

DNA Privacy ?????

Will courts provide “search warrants” to police for mandatory Will courts provide “search warrants” to police for mandatory DNA tests for people who fit a profile?DNA tests for people who fit a profile?

Lack of individualized suspicionLack of individualized suspicion The Gaucher Test of crime scene DNAThe Gaucher Test of crime scene DNA Quantity or quality? Is the identification of Quantity or quality? Is the identification of

Gaucher among a number of men sufficient for Gaucher among a number of men sufficient for meeting a suspicion threshold applied to a meeting a suspicion threshold applied to a small group? small group?

DNA Privacy ??????

UK’s meaning of IntrusivenessUK’s meaning of Intrusiveness

The first phase in the UK’s broadening the criterion for collecting DNA The first phase in the UK’s broadening the criterion for collecting DNA samples came about when the meaning of “intimate sample” was samples came about when the meaning of “intimate sample” was redefined. redefined.

After mouth swabs and hair samples were reclassified from being After mouth swabs and hair samples were reclassified from being considered ‘intimate’ to ‘non-intimate’ the number of DNA samples considered ‘intimate’ to ‘non-intimate’ the number of DNA samples collected by British police expanded rapidly. Under British law non collected by British police expanded rapidly. Under British law non intimate samples can be taken without a person’s consent from anyone intimate samples can be taken without a person’s consent from anyone arrested for a recordable offense and/or detained in a police station. arrested for a recordable offense and/or detained in a police station.

The law does not make a distinction over whether the sample is The law does not make a distinction over whether the sample is relevant or irrelevant to the crime being investigated.relevant or irrelevant to the crime being investigated.

DNA Privacy ??????

UK’s DNA Privacy CriteriaUK’s DNA Privacy Criteria

People arrested for a “recordable” offence (carrying People arrested for a “recordable” offence (carrying a prison sentence) have no right to refuse a DNA a prison sentence) have no right to refuse a DNA sample; the police can take a non-intimate sample by sample; the police can take a non-intimate sample by force. No DNA sample is required for speeding or force. No DNA sample is required for speeding or crossing a red light.crossing a red light. If you are arrested, your DNA is loaded on to If you are arrested, your DNA is loaded on to NDNAD forever even if you are acquitted and NDNAD forever even if you are acquitted and released with no further action.released with no further action. If you give a voluntary sample, you cannot change If you give a voluntary sample, you cannot change your mind; it stays on the NDNAD forever.your mind; it stays on the NDNAD forever.

DNA Privacy ?????

Should police have the right to “mine” DNA left at a crime Should police have the right to “mine” DNA left at a crime scene for any phenotypic or genetic characteristics?scene for any phenotypic or genetic characteristics?

Under Katz v. U.S. (1967) 2 conditions must be Under Katz v. U.S. (1967) 2 conditions must be met: 1) a person must have exhibited an actual met: 1) a person must have exhibited an actual (subjective) expectation of privacy;(subjective) expectation of privacy;

2) the expectation is one that society is prepared to 2) the expectation is one that society is prepared to recognize as reasonable. recognize as reasonable.

Given what an analysis of our DNA can reveal, I Given what an analysis of our DNA can reveal, I believe both of these conditions can be met.believe both of these conditions can be met.

But what about abandoned DNA? It is left for But what about abandoned DNA? It is left for anyone to pick up? How can there be privacy about anyone to pick up? How can there be privacy about the physical object (our shed cells).the physical object (our shed cells).

DNA Privacy ?????

Technology & DNA AnalysisTechnology & DNA Analysis

A distinction might be made about the objects we shed A distinction might be made about the objects we shed (hair, blood, cells etc) and the examination of the DNA in (hair, blood, cells etc) and the examination of the DNA in those objects. Science provides the technology to enter our those objects. Science provides the technology to enter our private spaces inside the cells, while the cells themselves private spaces inside the cells, while the cells themselves without the technology are not private.without the technology are not private.

Kyllo v. U.S.Kyllo v. U.S. (2001): Supreme Court on Thermal Imaging (2001): Supreme Court on Thermal Imaging “ “We think that obtaining by sense-enhancing technology any We think that obtaining by sense-enhancing technology any

information regarding the interior of the home that could information regarding the interior of the home that could not otherwise have been obtained without physical not otherwise have been obtained without physical ‘intrusion into a constitutionally protected area,’ constitutes ‘intrusion into a constitutionally protected area,’ constitutes a search...at least where the technology is not in general a search...at least where the technology is not in general public use.”public use.”

DNA Privacy ?????

Should law enforcement have the right to do Should law enforcement have the right to do surreptitious DNA analysis?surreptitious DNA analysis?

Can police follow someone around and obtain DNA Can police follow someone around and obtain DNA from a discarded object? from a discarded object?

What is “abandoned DNA”?What is “abandoned DNA”? What about disclosing Watson’s Alzheimer’s What about disclosing Watson’s Alzheimer’s

sequence? Is it only for police?sequence? Is it only for police? State of Washington v. John Nicholas AthanState of Washington v. John Nicholas Athan

The DNA ruse: under state law, the government cannot The DNA ruse: under state law, the government cannot obtain your DNA without consent or a court order.obtain your DNA without consent or a court order.

DNA Privacy ??????

John Athan Case: WA Supreme Court John Athan Case: WA Supreme Court May 10, 2007.May 10, 2007.

1982 cold case; 20 years later crime scene DNA submitted 1982 cold case; 20 years later crime scene DNA submitted to CODIS—not hits. Athan’s was a suspect in ’82. Police to CODIS—not hits. Athan’s was a suspect in ’82. Police sought his DNA by posing as a fictitious law firm pretending sought his DNA by posing as a fictitious law firm pretending to offer him payback for overcharge of parking tickets. Police to offer him payback for overcharge of parking tickets. Police obtained Athan’s DNA from a returned letter, which matched obtained Athan’s DNA from a returned letter, which matched the crime scene DNA.the crime scene DNA. Court: “No recognized privacy interest exists in voluntarily Court: “No recognized privacy interest exists in voluntarily discarded saliva and a legitimate government purpose in discarded saliva and a legitimate government purpose in collecting a suspect’s discarded DNA for identification collecting a suspect’s discarded DNA for identification purposes.” “Any privacy interest is lost when a person purposes.” “Any privacy interest is lost when a person discards his/her DNA (spitting or discarding a cigarette butt).”discards his/her DNA (spitting or discarding a cigarette butt).”

DNA Privacy ?????

THE DNA AGETHE DNA AGE

Stalking Strangers’ DNA to Fill in the Family TreeStalking Strangers’ DNA to Fill in the Family Tree

““They swab the cheeks of strangers and pluck hairs from They swab the cheeks of strangers and pluck hairs from corpses. They travel hundreds of miles to entice their corpses. They travel hundreds of miles to entice their suspects with an old photograph, or sometimes a free drink. suspects with an old photograph, or sometimes a free drink. Cooperation is preferred, but not necessarily required to Cooperation is preferred, but not necessarily required to achieve their ends… The talismans come mostly from achieve their ends… The talismans come mostly from people trying to glean genealogical information on dead people trying to glean genealogical information on dead relatives. But they could also be purloined from the living, relatives. But they could also be purloined from the living, as the police do with suspects. The law views such DNA as as the police do with suspects. The law views such DNA as ‘abandoned’.”‘abandoned’.”

Amy Harmon, Amy Harmon, New York TimesNew York Times April 2, 2007 April 2, 2007

DNA Privacy ?????

DNA Privacy ??????

Probationers & DNA DatabankingProbationers & DNA Databanking U.S. (plaintiff) v. James Stewart. Stewart was charged with unlawful U.S. (plaintiff) v. James Stewart. Stewart was charged with unlawful diversion of approx. $31,000 in Soc. Sec. Disability benefits. He diversion of approx. $31,000 in Soc. Sec. Disability benefits. He initially pled not guilty to the charge but later changed his plea to guilty initially pled not guilty to the charge but later changed his plea to guilty with a plea bargain agreement.with a plea bargain agreement. Congress passed the DNA Act of 2000; requires a probation officer to Congress passed the DNA Act of 2000; requires a probation officer to collect a DNA sample from any person placed on supervised release, collect a DNA sample from any person placed on supervised release, parole or probation who is or was convicted of a qualifying federal parole or probation who is or was convicted of a qualifying federal offense.offense. Stewart refused to submit a DNA sample of his DNA as condition of Stewart refused to submit a DNA sample of his DNA as condition of his probation.his probation. Court ruled: Stewart’s motion to modify conditions of probation is Court ruled: Stewart’s motion to modify conditions of probation is allowed and the DNA Analysis Backlog Elimination Act of 2000 is held allowed and the DNA Analysis Backlog Elimination Act of 2000 is held unconstitutional as applied to James Stewart.unconstitutional as applied to James Stewart.

DNA Privacy ??????

U.S. v. James StewartU.S. v. James Stewart:: US District Court, Mass US District Court, Mass

Decided Jan. 8, 2007Decided Jan. 8, 2007 Stewart has fewer expectations of privacy than a person Stewart has fewer expectations of privacy than a person who had not committed a crime, but more than someone on who had not committed a crime, but more than someone on parole or supervised release.parole or supervised release. There must be some privacy rights that a probationer retains There must be some privacy rights that a probationer retains from which he can exclude the government unless it comes from which he can exclude the government unless it comes armed with a warrant or individualized suspicion.armed with a warrant or individualized suspicion. The governmental interest in collecting this [DNA] The governmental interest in collecting this [DNA] information fails to override the highly intrusive searches that information fails to override the highly intrusive searches that result with a penetration into this probationer’s body and result with a penetration into this probationer’s body and second with the analysis of his DNA.second with the analysis of his DNA.

DNA Privacy ??????

Expectation of DNA Privacy in UKExpectation of DNA Privacy in UK

Human Tissue Act of 2004 (effective 9.1.06): Human Tissue Act of 2004 (effective 9.1.06):

Non-consensual analysis of DNA is an offense. Non-consensual analysis of DNA is an offense. Amateurs cannot analyze a person’s DNA on their Amateurs cannot analyze a person’s DNA on their own without consent. Parliament passed the law own without consent. Parliament passed the law honoring the privacy of a person’s DNA to anyone honoring the privacy of a person’s DNA to anyone outside of law enforcement. The Act cites a number of outside of law enforcement. The Act cites a number of exceptions including: “the prevention or detection of exceptions including: “the prevention or detection of crime.” crime.”

DNA Privacy ??????

Human Genetics Commission Chairperson Baronness KennedyHuman Genetics Commission Chairperson Baronness Kennedy::

““Until now there has been nothing to stop an unscrupulous Until now there has been nothing to stop an unscrupulous person, perhaps a journalist or a private investigator, from person, perhaps a journalist or a private investigator, from secretly taking an everyday object used by a public figure—secretly taking an everyday object used by a public figure—like a coffee mug or a toothbrush—with the express purpose like a coffee mug or a toothbrush—with the express purpose of having the person’s DNA analyzed. Similarly, an employer of having the person’s DNA analyzed. Similarly, an employer could have secretly taken DNA samples to use for their could have secretly taken DNA samples to use for their purposes.” First law of any country with a DNA databank purposes.” First law of any country with a DNA databank that honors the expectation of privacy by prohibiting people that honors the expectation of privacy by prohibiting people who are not legitimate members of law enforcement from who are not legitimate members of law enforcement from analyzing so-called “abandoned DNA.analyzing so-called “abandoned DNA.

DNA Privacy ??????

Axiom 1. DNA genomic information is analogous to Axiom 1. DNA genomic information is analogous to medical records in that it contains highly intimate medical records in that it contains highly intimate and personal information about an individual’s and personal information about an individual’s disease predisposition, genetic abnormalities, disease predisposition, genetic abnormalities, paternity and immunological sensitivity.paternity and immunological sensitivity.

Corollary:Corollary: privacy of medical records in hospitals, including privacy of medical records in hospitals, including genetic screening is comparable to privacy of DNA analysis genetic screening is comparable to privacy of DNA analysis disclosing anything other than identity that has no phenotypic disclosing anything other than identity that has no phenotypic or genetic implications. or genetic implications.

DNA Privacy ??????

Axiom 2. All materials, including DNA, at a crime Axiom 2. All materials, including DNA, at a crime scene are open to forensic investigation without scene are open to forensic investigation without warrants that will help police determine the identity warrants that will help police determine the identity of the victim and perpetrator(s) and or methods used of the victim and perpetrator(s) and or methods used in the criminal activity. in the criminal activity. CorollariesCorollaries There is no expectation of privacy associated with what a There is no expectation of privacy associated with what a person or persons have left at a crime scene.person or persons have left at a crime scene. Police may use any analysis they choose to develop Police may use any analysis they choose to develop suspects and determine identity from crime scene evidence.suspects and determine identity from crime scene evidence.

DNA Privacy ??????

Axiom 3. People have a prima facie but not Axiom 3. People have a prima facie but not fundamental right not to disclose their identity.fundamental right not to disclose their identity.

Corollary: People have a right to use a nom de plume but if challenged Corollary: People have a right to use a nom de plume but if challenged for libel or plagiarism must reveal their identity.for libel or plagiarism must reveal their identity. The Supreme Court ruled that a person does not have a The Supreme Court ruled that a person does not have a Constitutional right to withhold his/her identity. (Constitutional right to withhold his/her identity. (Hiibel v. NevadaHiibel v. Nevada)) As long as DNA samples are taken for identification purposes, courts As long as DNA samples are taken for identification purposes, courts have held that privacy issues are not a concern and probable cause is have held that privacy issues are not a concern and probable cause is not a requirement. (not a requirement. (Landry v. Attorney GeneralLandry v. Attorney General).). Taking one’s DNA is a search.Taking one’s DNA is a search. States do not have authorization to analyze DNA samples beyond States do not have authorization to analyze DNA samples beyond identification.identification.

DNA Privacy ?????

Axiom 4. By destroying the biological source of Axiom 4. By destroying the biological source of DNA the forensic DNA sample (13 loci) is DNA the forensic DNA sample (13 loci) is reduced to identity (minimal invasiveness).reduced to identity (minimal invasiveness).

Privacy issues around identity do not reach the same level of Privacy issues around identity do not reach the same level of concern as medical information, paternity, ancestry etc. concern as medical information, paternity, ancestry etc.

Nevertheless, the DNA can yield private information Nevertheless, the DNA can yield private information pertaining to whether someone frequented a particular site. pertaining to whether someone frequented a particular site. After following a known individual, an investigator picks up After following a known individual, an investigator picks up his cigarette butt, not for identity, but to determine if the his cigarette butt, not for identity, but to determine if the person was at another site.person was at another site.

A person who is not behaving in a way that gives rise to A person who is not behaving in a way that gives rise to articulable suspicion of criminality may not be required to articulable suspicion of criminality may not be required to state his name or show identification. (state his name or show identification. (Hiibel v. NevadaHiibel v. Nevada))

DNA Privacy ??????

Axiom 5. People have an expectation of privacy of Axiom 5. People have an expectation of privacy of the information contents of their DNA regardless of the information contents of their DNA regardless of where it is (“abandoned”, “shed”, on their person, where it is (“abandoned”, “shed”, on their person, medical records). medical records).

Corollary: To analyze a person’s DNA (found outside of a crime scene) Corollary: To analyze a person’s DNA (found outside of a crime scene) is an invasion of privacy. is an invasion of privacy.

Corollary: Covert involuntary DNA sampling by amateurs, private Corollary: Covert involuntary DNA sampling by amateurs, private investigators, and police should be prohibited unless there is a court investigators, and police should be prohibited unless there is a court order.order.

Corollary: Police do not have the right to analyze medical, paternity, Corollary: Police do not have the right to analyze medical, paternity, or ancestry information on DNA without a warrant—unless the DNA is or ancestry information on DNA without a warrant—unless the DNA is found at a crime scene.found at a crime scene.

DNA Privacy ?????

Axiom 6. Convicted felons have a diminished Axiom 6. Convicted felons have a diminished

expectation of privacy in those loci of their DNA expectation of privacy in those loci of their DNA

that are used to establish their identity.that are used to establish their identity.

Corollary: Convicted felons retain privacy over other parts Corollary: Convicted felons retain privacy over other parts of their genome.of their genome.

Corollary: informed consent applies to prisoners’ DNA Corollary: informed consent applies to prisoners’ DNA when it is sought for research?when it is sought for research?

DNA Privacy ?????

Axiom 7. Individuals detained or arrested for Axiom 7. Individuals detained or arrested for probable cause have a conditional diminished probable cause have a conditional diminished expectation of privacy for those loci of their DNA thatexpectation of privacy for those loci of their DNA that are used to establish their connection to a crime.are used to establish their connection to a crime.

Corollary: If charges are dropped or a suspect is proven Corollary: If charges are dropped or a suspect is proven innocent, he/she regains full expectation of privacy; the DNA innocent, he/she regains full expectation of privacy; the DNA profile and its biological source should be destroyed.profile and its biological source should be destroyed.Corollary: A person’s DNA cannot be uploaded Corollary: A person’s DNA cannot be uploaded on CODIS without probable cause (DNA crime scene fishing on CODIS without probable cause (DNA crime scene fishing expedition)expedition)

DNA Privacy ??????

Tension between Medical and Forensic DNA PrivacyTension between Medical and Forensic DNA Privacy

While there is growing consensus over privacy of While there is growing consensus over privacy of DNA taken and interpreted for medical purposes, there DNA taken and interpreted for medical purposes, there is no consensus over privacy of personal DNA per se.is no consensus over privacy of personal DNA per se. The meaning and significance of “abandoned” DNA The meaning and significance of “abandoned” DNA which can be analyzed and made public by scientific which can be analyzed and made public by scientific means is largely unresolved (imagine disclosing the means is largely unresolved (imagine disclosing the polymorphisms of a political candidate).polymorphisms of a political candidate). People do have an expectation of privacy of their People do have an expectation of privacy of their genetic heritage—their genotype—even while genetic heritage—their genotype—even while shedding their DNA continuously and ubiquitously. shedding their DNA continuously and ubiquitously.