Letter to Science: Re-identification of DNA may need ethics approval
A letter to the editor of Science magazine, responding to a report that bioinformaticians have combined public genealogy data with confidential donated genomic data to re-identify donors.
Legal Limits to Data Re-Identification
Science 8 February 2013:
Vol. 339 no. 6120 pp. 647
Yaniv Erlich at the Whitehead Institute for Biomedical Research used his hacking skills to decipher the names of anonymous DNA donors ("Genealogy databases enable naming of anonymous DNA donor," J. Bohannon, 18 January, p. 262). A little-known legal technicality in international data privacy laws could curb the privacy threats of reverse identification from genomes. "Personal information" is usually defined as any data relating to an individual whose identity is readily apparent from the data. The OECD Privacy Principles are enacted in over 80 countries worldwide . Privacy Principle No. 1 states: "There should be limits to the collection of personal data and any such data should be obtained by lawful and fair means and, where appropriate, with the knowledge or consent of the data subject." The principle is neutral regarding the manner of collection. Personal information may be collected directly from an individual or indirectly from third parties, or it may be synthesized from other sources, as with "data mining."
Computer scientists and engineers often don't know that recording a person's name against erstwhile anonymous data is technically an act of collection. Even if the consent form signed at the time of the original collection includes a disclaimer that absolute anonymity cannot be guaranteed, re-identifying the information later signifies a new collection. The new collection of personal information requires its own consent; the original disclaimer does not apply when third parties take data and process it beyond the original purpose for collection. Educating those with this capability about the legal meaning of collection should restrain the misuse of DNA data, at least in those jurisdictions that strive to enforce the OECD principles.
It also implies that bioinformaticians working "with little more than the Internet" to attach names to samples may need ethics approval, just as they would if they were taking fresh samples from the people concerned.
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Five Dock Sydney, NSW 2046, Australia.