The United Kingdom has proposed that all children will be able to receive genome sequencing within a few days of birth. In relation to this, the UK Health Secretary has said that, in the future, this genetic study could be carried out routinely, thus offering parents the opportunity to know their child’s future risk of having a congenital disease, and even the possibility of offering each of them personalized health screening (see more HERE).
The optimistic point of view of the UK’s Health Secretary is not shared by many specialists. Leaving aside the economic aspects of the ambitious project announced by the British minister, below are some considerations made in a recent article published in Scientific American (January 3, 2020):
“Such sweeping plans for collecting and sequencing the DNA of newborns may appear bold and tech-forward, but they lack nuance. Sequencing results are voluminous and variable. Some can be used to improve medical care, but others are poorly understood or uncertain, making widespread and untargeted use of the technology ill-advised. If sequencing belongs in newborn health care, as we think it does, it must be used in targeted ways that are attentive to the needs of babies, families and health systems.” (Read our special report on the issue HERE)
Education is needed before genome sequencing indiscriminate is carried out routinely
The article continues:
“Nor can health care systems afford unfocused use of sequencing. Explaining hundreds or thousands of complex and uncertain results to patients takes time and expertise, drawing down health care resources for little direct benefit. Patients need education and counseling on the meaning and implication of their results and may seek follow-up care, including further testing and monitoring across the life-course. For these reasons, no medical association recommends whole-genome sequencing as a general screening tool in adults, let alone babies.” (Read our special report: Current knowledge doesn’t justify…HERE).
“Results can also be used in discriminatory ways across the child’s lifetime by insurers or future employers”
The authors concluded with the possible ethical implications of the NHS project, which we also support:
“Indeed, caution is even more warranted in newborns, who cannot consent to test for conditions that we know some adults prefer not to know about. In addition, very little phenotypic information is available about infants to guide the interpretation of results. Further, worrying results that cannot guide care could unnecessarily distress parents and disrupt family bonding. Results can also be used in discriminatory ways across the child’s lifetime by insurers or future employers. Rather than sequencing the entire genome of all newborns, we recommend targeting this powerful technology to well-understood and usable gene variants.”
Added to these considerations are the risk of violating patient privacy (see Genetic data privacy in the U.S. questioned) and the possibility of “creating sick patients for life” from childhood – potential patients who, in the great majority of cases, will not become so.
Our Observatory hopes that NHS’s new project will be studied by specialists and medical associations before the “genetic study is carried out routinely”.