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This post is in GD because there is no one agreed upon answer even though it deals with genetic data and its use. It is an ethics discussion...
https://science.sciencemag.org/content/373/6555/610
Incidental genomic data means giving patients extra information about what is found in a vounteer patient genome that has potential for disease ( example: like the BRCA gene and breast cancer). As it stands now the policy mostly seems to be to ask the patient if they want the information, and to give it to them only with their consent.
So you understand the magnitude of the problem, consider how many disease processes have a genetic component - literally thousands.
Many are orphan diseases that kind of oddball things, like oyster borne Vibrio (bacterium) disease which may kill someone who has both the wrong gene and has eaten raw oysters that are infected. People without the gene usually will not have a severe problem. Obviously if you don't eat oysters or always eat them cooked - no problem.
Other rare conditions like Kearns-Sayre Syndrome, a genetic defect in mitochondrial DNA, may be partially mediated if caught early and may be a more severe problem otherwise.
https://www.ninds.nih.gov/Disorders/All-Disorders/Kearns-Sayre-Syndrome-Information-Page
The point is: do we or do we not give people information like this as a de facto ethical standard of procedure?
https://science.sciencemag.org/content/373/6555/610
Incidental genomic data means giving patients extra information about what is found in a vounteer patient genome that has potential for disease ( example: like the BRCA gene and breast cancer). As it stands now the policy mostly seems to be to ask the patient if they want the information, and to give it to them only with their consent.
So you understand the magnitude of the problem, consider how many disease processes have a genetic component - literally thousands.
Many are orphan diseases that kind of oddball things, like oyster borne Vibrio (bacterium) disease which may kill someone who has both the wrong gene and has eaten raw oysters that are infected. People without the gene usually will not have a severe problem. Obviously if you don't eat oysters or always eat them cooked - no problem.
Other rare conditions like Kearns-Sayre Syndrome, a genetic defect in mitochondrial DNA, may be partially mediated if caught early and may be a more severe problem otherwise.
https://www.ninds.nih.gov/Disorders/All-Disorders/Kearns-Sayre-Syndrome-Information-Page
The point is: do we or do we not give people information like this as a de facto ethical standard of procedure?