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...
Related Articles
By Emily Glazer, Katherine Long, Amy Dockser Marcus, The Wall Street Journal | 11.08.2025
For months, a small company in San Francisco has been pursuing a secretive project: the birth of a genetically engineered baby.
Backed by OpenAI chief executive Sam Altman and his husband, along with Coinbase co-founder and CEO Brian Armstrong, the startup—called...
By Jessica Hamzelou, MIT Technology Review | 11.07.2025
This week, we heard that Tom Brady had his dog cloned. The former quarterback revealed that his Junie is actually a clone of Lua, a pit bull mix that died in 2023.
Brady’s announcement follows those of celebrities like Paris...
By Emily Mullin, Wired | 10.30.2025
In 2018, Chinese scientist He Jiankui shocked the world when he revealed that he had created the first gene-edited babies. Using Crispr, he tweaked the genes of three human embryos in an attempt to make them immune to HIV and...
Public domain portrait of James D. Watson by Cold Spring Harbor Laboratory
and the National Human Genome Research Institute on Wikimedia Commons
James Watson, a scientist famous for ground-breaking work on DNA and notorious for expressing his antediluvian opinions, died on November 6, at the age of 97. Watson’s scientific eminence was primarily based on the 1953 discovery of the helical structure of DNA, for which he, Francis Crick and Maurice Wilkins shared the 1962 Nobel Prize in Physiology or...
