Researchers advise rather than screening newborns for all diseases, a phased rollout can be used. In a phased rollout,
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Such a rollout of genetic information should be guided by oversight bodies, with informed consent and appropriate opt-outs.
It should also reside in a repository linked to his or her medical record, readily accessible to healthcare providers, and available for reanalysis to keep pace with growing knowledge.
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To realize the anticipated benefits of routine newborn genome sequencing, progress is needed in several areas including data quality, appropriate information management, and clinical decision support systems.
The call for all healthcare professionals to be extensively trained in genetics is impractical and unnecessary.
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A person’s genetic information is a vast quantity of personal data, and no grounds justify routinely acquiring this from all citizens before they are old enough to have the capacity to provide informed consent.
An only tiny number of genetic conditions require action before an individual can consent to screen, and processes already exist to test newborns for these rare but serious conditions.
At the same time, the most personal data might be misused, noting that some governments are reportedly carrying out a mass collection of DNA, with the potential to use it for repressive practices up to and including forced organ harvesting.
Source: Medindia
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