Gene-Testing Dispute Focuses on How Much a Patient Should Know
By John Lauerman,
Bloomberg
| 05. 16. 2013
Should patients undergoing broad DNA testing for a specific ailment be told of unexpected findings that signal risk of cancer or other serious diseases, even if they don’t request the information?
The question is at the core of a battle brewing among doctors and ethicists amid growing use of gene sequencing for clinical use and the plethora of information that results from such tests. Writing today in the journal Science, a team of ethicists said patients should decide how much they want to know and how deeply scientists should look into their genome.
The disagreement is with an April recommendation by the American College of Medical Genetics and Genomics. The group said labs testing large swaths of patients’ DNA should routinely seek and report back on 57 gene abnormalities that signal treatable or preventable illnesses. Patients should be given the option not to learn about those risks, the ethicists led by Susan Wolf of the University of Minnesota, said in the Science article.
“If doctors are going to analyze all that information, they should get consent from the patient,” said...
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...