Drifting Away from Informed Consent in the Era of Personalized Medicine
In our pursuit of personalized medicine, we must take care not to abandon respect for persons.
The price of sequencing all the DNA in a person’s genome is falling so fast that, according to one biotech leader, soon it won’t cost much more than flushing a toilet. Getting all that genomic data at an ever-lower cost excites the imaginations not only of biotech investors and researchers but also of the President and many members of Congress. They envision the data ushering in an age of “personalized medicine,” where medical care is tailored to persons’ genomes. The new name “precision medicine” should not distract us from the fact that the genomic information it depends on is more complex, uncertain, and ambiguous than anyone had hoped, nor should it distract us from an important ethical point. Unfortunately, several developments of the last fifteen years suggest that, in our excitement about the technological capacity to gather genomic data at an ever lower cost, we are drifting away from what has long been a basic ethical commitment: to offer persons a process that enables them to provide informed consent before they or anyone else accesses their genetic information.