Drifting Away from Informed Consent in the Era of Personalized Medicine
By Erik Parens,
The Hastings Center Report
| 07. 07. 2015
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...
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