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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.
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.
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
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.
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?
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.
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 .
Diseases for which genetic testing is available
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.”
When suspicion is low and intrusiveness is high, the 4 th 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 4 th Amendment protection.
Suspicion, Intrusiveness & Privacy Intrusiveness Low 4 th AMENDMENT PROTECTION High High SUSPICION Low No warrant required Search warrant required
Law Enforcement Purpose , Intrusiveness & Privacy Law Enforcement Purpose Special needs, balancing, probable cause, individualized suspicion Low 4 th AMENDMENT PROTECTION High Low Physical Intrusion High Fingerprints, swabs, databanks, shed DNA Home entry, wire tap Blood sample National Security Agency evesdropping
Genetic Privacy Law Enforcement Purpose Special needs, balancing, probable cause, individualized suspicion Low 4 th AMENDMENT PROTECTION High Low DNA Intrusion High Only alleles for identification Biological sample; total genome; surreptitious DNA Ancestry alleles Suspicionless CODIS checks
Law Enforcement Purpose , Intrusiveness & Privacy Law Enforcement Purpose Special needs, balancing, probable cause, individualized suspicion Low 4 th AMENDMENT PROTECTION High Low Expectation of Privacy High incarcerated released convicted pedophile other parolees probationers suspected felons Illegal aliens arrestee not charged suspicionless individuals
“ 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”
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.
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?
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.
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.
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).
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.”
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.
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).”
THE DNA AGE Stalking 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’.”
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.
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.
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.”
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.
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.
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.
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.
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 )
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.