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Boon and Bane

Personalized medicine may soon offer patients better treatment choices, but it also heralds a day when genomic information is stored in patients' medical records. While having such vast amounts of data linked to medical data would a boon to researchers, it also opens up privacy issues for patients, write Jennifer Kulynych, senior counsel at Johns Hopkins Hospital, and Hank Greely, the director of the Center for Law and the Biosciences at Stanford University at Slate.

They note that researchers have recently demonstrated that de-identified genomes — those stripped of identifying tags such as names and addresses — that are commonly shared amongst researchers can be traced back to the donors. Kulynych and Greely note that though the possibility of re-identification is real, the probability of it is not known.

Some patients whose genomic information is housed in databases may not even know, as those patients donated their DNA in the days before sequencing was possible, but most, they say, did consent to being part of medical research.

However, current practices allow researchers to mine patient records for research without patient consent. Kulynych and Greely argue that this will become unacceptable as genomes are incorporated into patient records.

"If the research community truly believes that science must conscript patient genomes for public benefit, it should make that case openly, explaining how notice and consent will impose undue burdens on crucial research," they say. "Otherwise, do the right thing: Ask patients first."

The Scan

Support for Moderna Booster

An FDA advisory committee supports authorizing a booster for Moderna's SARS-CoV-2 vaccine, CNN reports.

Testing at UK Lab Suspended

SARS-CoV-2 testing at a UK lab has been suspended following a number of false negative results.

J&J CSO to Step Down

The Wall Street Journal reports that Paul Stoffels will be stepping down as chief scientific officer at Johnson & Johnson by the end of the year.

Science Papers Present Proteo-Genomic Map of Human Health, Brain Tumor Target, Tool to Infer CNVs

In Science this week: gene-protein-disease map, epigenomic and transcriptomic approach highlights potential therapeutic target for gliomas, and more