Drifting Away from Informed Consent in the Era of Personalized Medicine

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.¹ 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.² They envision the data ushering in an age of “personalized medicine,” where medical care is tailored to persons’ genomes.

Since the 1990 start of the project to map the human genome, sequencing advocates have been predicting our imminent arrival in the Promised Land of Health. In 2000, when Francis Collins shared in announcing the completion of a first draft of a human genome sequence, he said that we now possessed the “book of life.”³ Soon, he foresaw, we would find single misspelled words in that book that would be the keys to diagnosing, treating, and preventing both common and rare diseases.

Since 2000, researchers have actually achieved some stunning successes in personalized medicine, including making some definitive...