Ethicists Debate How to Tell Patients Secrets in their Genome
By Monya Baker,
Nature
| 11. 10. 2012
If parents have a son’s genes sequenced in hopes of explaining extreme muscle weakness, should they also be told whether he is likely to get Alzheimer’s disease as an adult? Should the child be told? When? How do answers to these questions shift for currently healthy adults? And should people be given more or less information depending on what they want to know?
As more and more people get large-scale sequencing as part of clinical care and research, the genetics community is struggling to define what to tell people about their own genomes. At the meeting of the American Society of Human Genetics, Holly Tabor at Seattle Children’s Hospital described an emerging approach to help people decide what results from their sequencing data they want to see and when.
Tabor has developed a web-based platform to manage the process. A website, called
my46, explains types of mutations and lets users select whether they want to get results about variants associated with drug response, disease risk, and ancestry. They can also select to find out whether they carry mutations for...
Related Articles
By Staff, GMWatch | 03.28.2026
Following a recent podcast interview we were asked whether there is any solid scientific research looking at how gene expression or molecular composition in genetically modified (GM) plants differs from conventionally bred plants. As this is an interesting and important...
By David Jensen, The California Stem Cell Report | 03.26.2026
SACRAMENTO, Ca. -- California’s $12 billion stem cell and gene therapy program scored a historic first today, announcing that it had for the first time helped to finance a revolutionary treatment that will now be available to the general public...
By Ryan Cross, Endpoints News | 03.24.2026
Cathy Tie has an audacity more typical of a tech startup founder than a biotech executive. She dropped out of college to start a genetic screening company and later founded a telemedicine startup. The 29-year-old has been on two Forbes...
By Rowan Walrath and Laurel Oldach, Chemical & Engineering News | 03.04.2026
Washington, DC—At a press conference held at the US Department of Health and Human Services headquarters on Feb. 23, two doctors from the University of Pennsylvania and Children’s Hospital of Philadelphia spoke about their hope for the future of...