When Genome Sequencing Tells Too Much, Doctors May Have To Keep Secrets:
In the case of a parent requesting to actively seek out early-onset markers for predispositions of diseases like breast cancer for their child, Sharp said a responsible physician would deny them the sequence unless that parent was able to provide a valid reason. The medical community generally advises against it because it would force them to navigate through new territory fraught with unpredictable challenges.
“We’re going to have to find the right ways to curb our enthusiasm for genetic testing,” Sharp said, “and really limit genetic testing only to situations that we have reason to suspect are going to be useful to the patient’s well being. Excessive testing can cause distress, raise cost, and generate information that ultimately doesn’t have any clinical utility.”
I’ve said enough that I don’t want to repeat myself. But it’s totally crazy talk to think that parents who are rejected by a doctor or institution when it comes to a whole genome sequence wouldn’t just go elsewhere. Perhaps these doctors who advise this tack think that in this way they’re absolving themselves of the responsibility?
Rather than attempting to deny the dissemination of information a more plausible, and frankly just, path would be to develop better means of interpretation for the public. Medical institutions arose in the 20th century, during an era of vast centralized organizations. That mentality seems to have carried over. But this is going to be a century of decentralization and commoditization of many technologies which were once the purview of the elite.
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