Slashdot Mirror
Should Patients Have the Option To Not Know Their DNA?
An anonymous reader writes "Genome sequencing is getting faster and cheaper every year. This article points out that in the not-too-distant future, a DNA test will be a common diagnostic tool for doctors. It's a good thing for figuring out what's wrong with you — but there will unintended consequences. The test will also return information about conditions and diseases you're likely to get, which will spur more frequent testing — which can be extremely uncomfortable and/or expensive — as well as more frequent worrying. Should people be able to opt-out of this knowledge? Even if they do, should the information go into the patient's medical record? It likely will, and then the next doctor may be in the difficult position of not knowing what she can discuss with the patient. A new decision from the American College of Medical Genetics has recommended giving patients the option of not having the information gathered at all. It can get more complicated, too: '[G]eneticists and bioethicists are already discussing scenarios where patients may approach such decisions more like a menu, saying they want to know about increased risk of heart disease but not cancer, for example.'"
People (and genetic risks) are different. One person's 'making the most of my time left' is another's 'spending decades with the constant threat of a terrible disease blighting my life'. In Jim Watson's case, he was already at an age where presumably he'd made adequate provision for his loved ones (the link is with late, rather than early onset dementia). Knowing that he might be at increased (but very far from absolute) risk of losing his mental faculties late in life wasn't useful information to him, but might have led him to worry about something he could do nothing about. It's not hard to think of other scenarios where an individual may make the (perfectly valid) choice to not know everything about his genome.