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...
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