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."