The European Journal of Human Genetics just published an article that advocates universal — and perhaps even mandatory — genetic screening of all newborns.

How to justify this proposed massive usurpation of parental decision-making? By creating a purported “right” for the “asymptomatic at-risk child [of genetic disease] to be found” combined with redefining genetic screening from an individual issue into one of “public health.”

From “Genomic Sequencing in Newborn Screening: Balancing Consent with the Right of the Asymptomatic At-Risk Child to be Found” (citations omitted, my emphasis):

Scholars have begun to recognize the value of public health ethics in newborn screening and in genomic population screening more generally. The conceptual tools and ethical approaches that public health ethics brings allow us to look at wider social and structural factors, and to consider issues that arise at a collective or community level as well as for individuals.

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Concepts and values such as solidarity, reciprocity, caring, equity, identifying common goods and promoting interpersonal connectedness can be given greater attention under a public health ethics framing. Further, framing the use of genomics in newborn screening as a public health ethics problem will allow us to consider the benefits and burdens of alternative approaches to consent with other aspects such as public health goals, fairness and (we argue below) the population health right of the asymptomatic at-risk child to be found.

A public health ethics approach is also well aligned to newborn screening as a population health initiative, one that aims to improve the health of a population (as well as the health of individuals within that population). It aims to prevent [authors’ emphasis] ill health rather than treat it and will not succeed unless there is widespread ‘buy in’ and case-finding.

Does this mean that every baby should be screened, without parental consent or even knowledge? The authors don’t put it that bluntly, but that is precisely what the concept of “implied consent” for universal screening would appear to mean in practice [emphasis added]:

Most countries globally use an implied consent model for newborn screening. Information about screening is usually provided during prenatal visits or as part of standard care at birth. Newborn screening is viewed as a routine procedure, with parents not formally asked to consent (or having no recollection of having given it), or the test proceeds unless parents opt-out. Research undertaken in England, for example, showed that most parents felt newborn screening was not presented as optional.

It’s hard to opt out of a procedure that you don’t know is going to be performed. Think of the eugenic possibilities! And imagine the mischief when eventually everyone’s genome — which should be private — becomes identifiable and hackable.

The authors pay some lip service to actual consent models but bring home the universal-screening bacon with the “right to be found” paradigm, stating that the alternative could be considered medical neglect [emphasis added]:

Under the parens patriae doctrine, States are obliged to protect the vulnerable. Failure to provide medical care or take preventive health measures can be considered child medical neglect under youth protection legislation. To this end, we contend that these rights can be used as a basis to put forward a novel ‘right of the asymptomatic at-risk child to be found’ in order to underpin the rationale within all newborn screening programs to identify children with actionable conditions. . . .

Newborn screening at a population level is not primarily about individuals, parents, or families (although they should be engaged with), but rather about finding the at-risk child.

If all these elements are achieved and finding asymptomatic at-risk newborns comes first, we suggest that genomic newborn screening need not be on a “collision course with public health ethics” as not only will the form of consent [i.e. “implied] provided be appropriate to this context, most importantly the health rights and interests of all asymptomatic at-risk newborns will be promoted and protected.

This article should be judged not individually but rather as part of the growing advocacy in science journals to transform medical questions and political controversies into broad issues of “public health.” The goal, I believe, is to undermine individual rights and allow controversial public-policy decisions to be made more efficiently beyond democratic processes (consider how 200 medical journals published identical editorials urging that climate change be declared a public-health emergency, for example).

Resist we must. Otherwise, a soft “public-health authoritarianism” will be imposed — for our own good, of course. That assumption is highly debatable, and such a system would mark the end of freedom.

LifeNews.com Note: Wesley J. Smith, J.D., is a special consultant to the Center for Bioethics and Culture and a bioethics attorney who blogs at Human Exeptionalism.