The following is an edited excerpt.
As 21st century medicine now begins to use the tools of genome sequencing, an enormous debate has erupted over whether patients’ rights will continue in an era of medical genomics.
Recent recommendations from the American College of Medical Genetics and Genomics (ACMG) suggest no. On March 22, the ACMG released recommendations stating that when clinical sequencing is undertaken for any medical reason, laboratories must examine 57 other specific genes to look for incidental findings. These findings must then be reported to the clinician and the patient. In an April 25 “clarification,” ACMG said that failure to report these findings would be considered “unethical.” The patient has no opportunity to opt-out of the testing of the 57 genes, except to decline all sequencing. The recommendations also apply to children.
In a paper to be published in ‘Science ‘May 16 online ahead of print, the authors push back against these recommendations, and offer compelling reasons why patient autonomy must remain firmly in place as science advances.
View the original article in its entirety here: Authors urge importance of patients’ rights in genome sequencing