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 Annika Inampudi, Science | 08.01.2025
In June, Sara* received a message asking whether she wanted to continue to participate in a massive, multicenter research project led by scientists at Aarhus University in Denmark. The iPsych study, the message said, had sequenced her genetic data from...
The Center for Genetics and Society is delighted to recommend the current edition of GMWatch Review – Number 589. UK-based GMWatch, a long-standing ally, was founded in 1998 by Jonathan Matthews as an independent organization seeking to counter the enormous corporate political power and propaganda of the GMO industry and its supporters. Matthews and Claire Robinson are its directors and managing editors.
CGS works to ensure that social justice, equity, human rights, and democratic governance are front...
By Katherine Drabiak, Journal of Medical Ethics Forum | 08.07.2025
Adapted from Mitochondrial DNA at
National Human Genome Research Institute
Recently, media outlets around the world have been reporting on children born from pronuclear genome transfer (sometimes called “3-parent IVF,” “mitochondrial donation” or “mitochondrial replacement therapy”) at Newcastle Fertility Center...
By Annika Inampudi, Science | 07.10.2025
Before a baby in the United States reaches a few days old, doctors will run biochemical tests on a few drops of their blood to catch certain genetic diseases that need immediate care to prevent brain damage or other serious...
