The Axiomatics of DNA Privacy

1. The Axiomatics of DNA Privacy Sheldon Krimsky Tufts University, Medford, MA www.tufts.edu/~skrimsky Forensic Bioinformatics 2007 The Science of DNA Profiling: An Expert Forum August 17-19, 2007

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

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

4. This Inquiry Privacy in medicine Forensic privacy Legal background behind 4th Amendment privacy The axioms for DNA privacy in the context of legal theory and practice A synthesis of medical and forensic privacy

5. What our DNA can Reveal disease states (inherited genetic disorders) predispositional states (mutations that correlate with the onset of a disease) parental linkages—who your parents are or aren’t ancestral identity-Haplotype groups sibling connections familial disease patterns environmental and drug sensitivities locational presence (DNA left at a site).

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

7. Genetic Discrimination In the 1990s, Paul Billings, then at the Department of Veterans Affairs, Texas, published the first evidence of genetic discrimination in insurance and employment matters and reviewed more than 500 cases of people reporting discrimination based on genetic information. The most common cases: uninsurability; Second most common: unemployability.

8. State of Illinois Genetic Privacy Except as otherwise provided in this Act, genetic testing and information derived from genetic testing is confidential and privileged and may be released only to the individual tested to to persons specifically authorized…by that individual…this information shall not be admissible as evidence, nor discoverable of any action of any kind in any court…. State of Illinois, Genetic Information Privacy Act 513, Ch. 410, Public Health

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

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

11. GINA 2007 Genetic information is defined in the bill as that information obtained from an individual’s genetic test results, as well as genetic test results of family members and the occurrence of a disease or disorder in family members. Does analysis of DNA for medically important polymorphisms that could be used for identification purposes fall under this?

12. Status of GINA 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 420-3. Jan. 31, 2007: Senate Committee on Health, Education, Labor and Pensions approved GINA 19-2; two senators threatened to block the bill which would not prohibit discrimination against embryos that have found to be at risk for disease through genetic testing prior to implantation.

13. James Watson offers his genome for sequencing with an expectation of privacy At 79, James Watson donated his DNA to be sequenced at a cost of $1 million. However, Watson expressed an expectation of privacy regarding a segment of his genetic code that might reveal his predisposition to Alzheimer’s disease. One of his grandmothers died of Alzheimer’s at the age of 84. He figures his chances are one in four and he does not wish to know.

14. Diseases for which genetic testing is available

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

18. Conditions for a Reasonable Expectation of Privacy Extent to which DNA is exposed to the public. (The analysis of the information is clearly not) Extent of bodily intrusion in obtaining a DNA sample (not relevant for abandoned DNA) Nature of the information extracted from a DNA profile (sensitive information regardless of how the DNA is taken or found).

19. DNA Fingerprint Act 2005 The DNA Fingerprint Act of 2005 (P.L. 109-162): signed into law in January 2006, authorizing DNA collection and retention from persons arrested or non-U.S. persons detained under federal authority. Attorney General is given broad discretionary power to grant DNA testing authority to any federal agency. Allows states to upload any profiles that are collected under “applicable legal authority,” so long as voluntarily submitted samples are not included. “The Attorney General may, as prescribed by the Attorney General in regulation, collect DNA samples from individuals who are arrested or from non-United States persons who are detained under the authority of the United States.” The Attorney General may …. Authorize and direct any other agency of the United States that arrests or detains individuals or supervises individuals facing charges to carry out any function and exercise any power of the Attorney General under this section.”

20. 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.

21. Suspicion, Intrusiveness & Privacy Search warrant required High SUSPICIONLow Low 4th AMENDMENT PROTECTION High No warrant required Intrusiveness

22. Law Enforcement Purpose , Intrusiveness & Privacy Home entry, wire tap Low PhysicalIntrusionHigh Low4th AMENDMENT PROTECTION High Blood sample National Security Agency evesdropping Fingerprints, swabs, databanks, shed DNA Law Enforcement Purpose Special needs,balancing, probable cause, individualized suspicion

23. Genetic Privacy Biological sample; total genome; surreptitious DNA Suspicionless CODIS checks Low DNAIntrusionHigh Low4th AMENDMENT PROTECTION High Ancestry alleles Only alleles for identification Law Enforcement Purpose Special needs,balancing, probable cause, individualized suspicion

24. Law Enforcement Purpose , Intrusiveness & Privacy suspicionless individuals suspected felons arrestee not charged Illegal aliens probationers Low Expectation of PrivacyHigh Low4th AMENDMENT PROTECTION High other parolees released convicted pedophile incarcerated Law Enforcement Purpose Special needs,balancing, probable cause, individualized suspicion

25. The ASHG Policy on Disclosure “ “Genetic information, like all medical information, should be protected by the legal and ethical principle of confidentiality.” “it is useful to view the DNA molecule as a medical record in its own right for privacy purposes” George Annas, “Genetic Privacy”

26. Who gets their DNA on CODIS? • “DNA creep” is the expression for the widening of criteria for including DNA samples on national databanks: convicted for felonies; charged with felonies; arrested or detained for felonies;

27. 1991 FBI Legislative Guidelines for DNA Databases • Only DNA records that relate to the identification of individuals; not about physical characteristics, traits, predispositions for disease should be collected • Personal information stored in a state DNA database should be limited to the data necessary to generate investigative leads and to support statistical interpretations of test results.

28. States broaden criteria • In the last few years, enthusiasm for DNA banking has prompted some state legislatures to expand their databanks beyond convicted offenders to arrestees even if not convicted of a crime. 11 states – VA, TX, LA, CA, NM, CA, ND, KA, TN, AZ, and AK – have approved legislation to allow DNA testing of some categories of arrested individuals . • In 2006, Minnesota’s Court of Appeals declared its arrestee law unconstitutional leaving 10 states with active legislation that allows for the collection and retention of DNA from persons who are arrested.

29. Will courts provide “search warrants” to police for mandatory DNA tests for people who fit a profile? • Lack of individualized suspicion • The Gaucher Test of crime scene DNA • Quantity or quality? Is the identification of Gaucher among a number of men sufficient for meeting a suspicion threshold applied to a small group?

30. UK’s meaning of Intrusiveness The first phase in the UK’s broadening the criterion for collecting DNA samples came about when the meaning of “intimate sample” was redefined. After mouth swabs and hair samples were reclassified from being considered ‘intimate’ to ‘non-intimate’ the number of DNA samples collected by British police expanded rapidly. Under British law non intimate samples can be taken without a person’s consent from anyone arrested for a recordable offense and/or detained in a police station. The law does not make a distinction over whether the sample is relevant or irrelevant to the crime being investigated.

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

32. Should police have the right to “mine” DNA left at a crime scene for any phenotypic or genetic characteristics? • Under Katz v. U.S. (1967) 2 conditions must be met: 1) a person must have exhibited an actual (subjective) expectation of privacy; 2) the expectation is one that society is prepared to recognize as reasonable. • Given what an analysis of our DNA can reveal, I believe both of these conditions can be met. • But what about abandoned DNA? It is left for anyone to pick up? How can there be privacy about the physical object (our shed cells).

33. Technology & DNA Analysis • A distinction might be made about the objects we shed (hair, blood, cells etc) and the examination of the DNA in those objects. Science provides the technology to enter our private spaces inside the cells, while the cells themselves without the technology are not private. • Kyllo v. U.S. (2001): Supreme Court on Thermal Imaging “We think that obtaining by sense-enhancing technology any information regarding the interior of the home that could not otherwise have been obtained without physical ‘intrusion into a constitutionally protected area,’ constitutes a search...at least where the technology is not in general public use.”

34. Should law enforcement have the right to do surreptitious DNA analysis? • Can police follow someone around and obtain DNA from a discarded object? • What is “abandoned DNA”? • What about disclosing Watson’s Alzheimer’s sequence? Is it only for police? • State of Washington v. John Nicholas Athan The DNA ruse: under state law, the government cannot obtain your DNA without consent or a court order.

35. John Athan Case: WA Supreme Court May 10, 2007. 1982 cold case; 20 years later crime scene DNA submitted to CODIS—not hits. Athan’s was a suspect in ’82. Police sought his DNA by posing as a fictitious law firm pretending to offer him payback for overcharge of parking tickets. Police obtained Athan’s DNA from a returned letter, which matched the crime scene DNA. Court: “No recognized privacy interest exists in voluntarily discarded saliva and a legitimate government purpose in collecting a suspect’s discarded DNA for identification purposes.” “Any privacy interest is lost when a person discards his/her DNA (spitting or discarding a cigarette butt).”

36. THE DNA AGEStalking Strangers’ DNA to Fill in the Family Tree “They swab the cheeks of strangers and pluck hairs from corpses. They travel hundreds of miles to entice their suspects with an old photograph, or sometimes a free drink. Cooperation is preferred, but not necessarily required to achieve their ends… The talismans come mostly from people trying to glean genealogical information on dead relatives. But they could also be purloined from the living, as the police do with suspects. The law views such DNA as ‘abandoned’.” Amy Harmon, New York Times April 2, 2007

38. Probationers & DNA Databanking U.S. (plaintiff) v. James Stewart. Stewart was charged with unlawful 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 with a plea bargain agreement. Congress passed the DNA Act of 2000; requires a probation officer to collect a DNA sample from any person placed on supervised release, parole or probation who is or was convicted of a qualifying federal offense. Stewart refused to submit a DNA sample of his DNA as condition of his probation. Court ruled: Stewart’s motion to modify conditions of probation is allowed and the DNA Analysis Backlog Elimination Act of 2000 is held unconstitutional as applied to James Stewart.

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

40. Expectation of DNA Privacy in UK Human Tissue Act of 2004 (effective 9.1.06): Non-consensual analysis of DNA is an offense. Amateurs cannot analyze a person’s DNA on their own without consent. Parliament passed the law honoring the privacy of a person’s DNA to anyone outside of law enforcement. The Act cites a number of exceptions including: “the prevention or detection of crime.”

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

42. Axiom 1. DNA genomic information is analogous to medical records in that it contains highly intimate and personal information about an individual’s disease predisposition, genetic abnormalities, paternity and immunological sensitivity. Corollary:privacy of medical records in hospitals, including genetic screening is comparable to privacy of DNA analysis disclosing anything other than identity that has no phenotypic or genetic implications.

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

44. Axiom 3. People have a prima facie but not fundamental right not to disclose their identity. Corollary: People have a right to use a nom de plume but if challenged for libel or plagiarism must reveal their identity. The Supreme Court ruled that a person does not have a Constitutional right to withhold his/her identity. (Hiibel v. Nevada) As long as DNA samples are taken for identification purposes, courts have held that privacy issues are not a concern and probable cause is not a requirement. (Landry v. Attorney General). Taking one’s DNA is a search. States do not have authorization to analyze DNA samples beyond identification.

45. Axiom 4. By destroying the biological source of DNA the forensic DNA sample (13 loci) is reduced to identity (minimal invasiveness). • Privacy issues around identity do not reach the same level of concern as medical information, paternity, ancestry etc. • Nevertheless, the DNA can yield private information pertaining to whether someone frequented a particular site. After following a known individual, an investigator picks up his cigarette butt, not for identity, but to determine if the person was at another site. • A person who is not behaving in a way that gives rise to articulable suspicion of criminality may not be required to state his name or show identification. (Hiibel v. Nevada)

46. Axiom 5. People have an expectation of privacy of the information contents of their DNA regardless of where it is (“abandoned”, “shed”, on their person, medical records). Corollary: To analyze a person’s DNA (found outside of a crime scene) is an invasion of privacy. Corollary: Covert involuntary DNA sampling by amateurs, private investigators, and police should be prohibited unless there is a court order. Corollary: Police do not have the right to analyze medical, paternity, or ancestry information on DNA without a warrant—unless the DNA is found at a crime scene.

47. Axiom 6. Convicted felons have a diminished expectation of privacy in those loci of their DNA that are used to establish their identity. Corollary: Convicted felons retain privacy over other parts of their genome. Corollary: informed consent applies to prisoners’ DNA when it is sought for research?

48. Axiom 7. Individuals detained or arrested for probable cause have a conditional diminished expectation of privacy for those loci of their DNA that are used to establish their connection to a crime. Corollary: If charges are dropped or a suspect is proven innocent, he/she regains full expectation of privacy; the DNA profile and its biological source should be destroyed. Corollary: A person’s DNA cannot be uploaded on CODIS without probable cause (DNA crime scene fishing expedition)

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