Leading UK organizations that fund research have threatened to revoke the funding of scientists who determine the identities of participants in medical and genomic studies who had expressed a wish to remain anonymous.
The warning was issued on 24 March by the Medical Research Council and the Economic and Social Research Council — both government agencies — and by two charities, the Wellcome Trust and Cancer Research UK. It came as a part of recommendations that are aimed at preventing the identification of study participants whose information has supposedly been made anonymous.
“Whilst it is impossible to eliminate entirely the risk of re-identification of individuals, it is possible to minimise this risk with proportionate safeguards,” said Wellcome Trust Director Jeremy Farrar in a statement. “We believe that a deliberate attempt to re-identify individuals should be viewed as malpractice and be met with appropriate sanctions.”
In addition to being subject to sanctions, studies should also be regularly reviewed to gauge the potential for re-identification in light of new technological developments, the funders said. And participants should be told during the consent process that there is a small risk that their identities will be revealed.
The recommendations (first laid out in an October 2013 report by an expert advisory group and endorsed by those funders today) are a response to growing concerns that private medical details and genomic information of participants in research studies could be determined by analysing freely available information.
A study published in Science last year, for instance, showed that a subset of participants in the 1000 Genomes Project could be identified by cross-referencing publicly available, yet anonymous, genome data with genetic genealogical databases. The study participants had acknowledged the risk of being identified, and none of their identities were ever published (see “Privacy loophole found in genetic databases”).
Yaniv Erlich, a human geneticist at the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts, who led that research, believes that private interests such as health insurers are far more likely than scientists to re-identify researchers participants against their permission. But he welcomes policies that protect the privacy of research participants. “The whole point is to increase the trust that the general public has with the scientific community,” Erlich says. “We need to have better legal methods to fight these breaches of genetic privacy.”
More Nature coverage on re-identification: