Personal Genomics: When Consent Gets in the Way

- Nature
Author/s: -Taylor, Patrick
Journal: Nature
Year: 2008
Volume: 456
Start Page: 32

Translating genomic research into health care improvements will require linking genotypes with medical information that has long been considered private. Fortuitously, as genomics has progressed, so too have electronic medical records, including personal health records that are now an important part of the electronic medical information system1. Accompanying these developments, however, is an argument, advocated in the US Congress and elsewhere, that biomedical ethics requires subjecting any uses of electronic medical records to patient consent.

Although well-intentioned, such arguments spell trouble. Linked data are crucial for research and improving health-care quality. People might fear that information will be revealed or misused, but the impulse to block all access in the absence of consent is mistaken.