The Right to Genetic Ignorance
By Editorial,
New Scientist
| 09. 06. 2013
The age of genomic medicine is dawning. Whole-genome sequencing is starting to transform the diagnosis of rare inherited diseases, and within a few decades it could be a routine part of medical care (see "
Your genomic future: Personalised medicine is here ").
But an ethical row has broken out on this new frontier. In June, the American College of Medical Genetics and Genomics published guidelines arguing that people having their genome sequenced should be informed if the results show defects in any of 56 genes linked to 24 serious diseases (
Genetics in Medicine, vol 15, p 565).
The idea is to flag up known risks that could be mitigated – although in some cases that could require drastic action. The list includes mutations in the
BRCA1 gene that earlier this year prompted movie star
Angelina Jolie to have a double mastectomy to reduce her risk of developing breast cancer.
The intentions are laudable, but routine disclosure may not always be welcome. Imagine that you are seeking the cause of a mysterious condition that has brought your...
Related Articles
By Carly Mallenbaum, Axios [cites Emily Galpern] | 03.29.2026
More Americans are turning to surrogacy to build their families, as the practice becomes more common and more publicly discussed.
Why it matters: As surrogacy becomes more visible and accessible, ethical, legal and cultural tensions become harder to ignore...
By Carly Mallenbaum, Axios [cites Surrogacy360] | 03.29.2026
Without a federal law, surrogacy in the U.S. is governed by a patchwork of state regulations/
Why it matters: Confusing, varied local rules can determine everything from whether agreements are legally binding to who is recognized as a parent at...
Cathy Tie seems to be good at starting businesses but not so dedicated to maintaining them. CGS, like many others, first heard of her thanks to Caiwei Chen and Antonio Regalado in MIT Technology Review, May 2025, as the partner (perhaps bride) of the notorious Chinese scientist He Jiankui, described in the headline as “China’s Frankenstein.” He prefers “Chinese Darwin.” She ran his Twitter account for a while, contributing such gems as:
Get in luddite, we’re going gene editing...
By Laura DeFrancesco, Nature Biotechnology | 03.17.2026
The first gene editors designed to fix genetic lesions in mutation-agnostic ways are poised to enter the clinic. Tessera Therapeutics and Alltrna, two Flagship Pioneering-funded companies, are gearing up to test novel genetic medicines in humans. Tessera received regulatory clearance...