Every Patient a Subject: When personalized medicine, genomic research, and privacy collide
By Jennifer J. Kulynych and Hank Greely,
Slate
| 12. 30. 2014
Untitled Document
Personalized medicine, the hoped-for use of the information in our genes to inform our medical care, may end up helping people live longer, healthier lives. Or it may not—the jury is still out. But one thing is certain: As our unique genomic data enter our medical records, researchers will be tempted to use that invaluable resource. The results may be good for science but bad for patients’ privacy.
In 2013, reporter Carole Cadwalladr, writing for the Guardian, described her encounter with the paradox of personalized medicine: Unlocking one’s genetic code may feel empowering, but the implications can be frightening. Cadwalladr agreed to let Illumina, a company that makes and uses gene-reading machines, sequence her DNA and use her genome in research in connection with an upcoming conference.
At a conference she attended, Illumina gave all the participants party favors: iPads with copies of their own genomes. Cadwalladr was unnerved to realize that her unique genetic code was now stored by Illumina in the Amazon Cloud and could, like all digital data, be potentially hacked and leaked. But...
Related Articles
By Megan Molteni and Anil Oza, STAT | 10.07.2025
For two years, a panel of scientific experts, clinicians, and patient advocates had been hammering out ways to increase community engagement in National Institutes of Health-funded science. When they presented their road map to the NIH Director Jay Bhattacharya last...
Paula Amato & Shoukhrat Mitalipov
[OHSU News/Christine Torres Hicks]
On September 30th, a team of 21 scientists from Oregon Health & Science University (OHSU) published a significant paper in Nature Communications, with a scientifically accurate but, to many, somewhat abstruse headline:
Induction of experimental cell division to generate cells with reduced chromosome ploidy
The lead authors were Shoukhrat Mitalipov, recently described here as “a push-the-envelope biologist,” and his long-term colleague Paula Amato. (Recall that in July the pair had co-published with...
By Pam Belluck, The New York Times | 10.17.2025
Before dawn on a March morning, Doug Whitney walked into a medical center 2,000 miles from home, about to transform from a mild-mannered, bespectacled retiree into a superhuman research subject.
First, a doctor inserted a needle into his back to...
By Julia Black, MIT Technology Review | 10.16.2025
Consider, if you will, the translucent blob in the eye of a microscope: a human blastocyst, the biological specimen that emerges just five days or so after a fateful encounter between egg and sperm. This bundle of cells, about the size of...
