Half a million people who have volunteered their genetic information for scientific research will not be informed if researchers discover that they are genetically vulnerable to the coronavirus.
UK Biobank has been collecting this information, along with other health data, for more than a decade in order to create its widely used database for research. Now, the hospital data of participants who have received a test for covid-19 or died as a result of the illness will be .
The hope is that researchers will be able to identify specific genetic factors that increase the likelihood of someone being badly affected by the coronavirus, but UK Biobank says that individuals won鈥檛 be told about their personal risk.
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Participants explicitly consent to not receiving personalised health feedback when they sign up, says UK Biobank鈥檚 head of communications Andrew Trehearne. People join with the understanding that the Biobank helps improve the health of the population as a whole, rather than specific individuals, he says.
Timothy Caulfield at the University of Alberta in Canada points out that the UK Biobank has previously told volunteers about personal health findings, such as abnormalities on brain scans, though Trehearne says this only happens if a health worker is looking at a scan with a participant and notices something of potential concern.
Caulfield says UK Biobank should reconsider its disclosure policies in light of the pandemic. 鈥淚magine if an individual or family got sick due to the non-disclosure of information.鈥�
Passing on information to participants could reduce the burden on hospitals and save lives, but people shouldn鈥檛 be told without their consent, says Andrea Boggio, a bioethicist at Bryant University in Rhode Island.
A better way of informing people would be to feed robust Biobank findings into the UK鈥檚 healthcare system, so that people could voluntarily contact their doctor if they wanted to know whether they are at generally higher risk, says Boggio.
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