The Changing Moral Focus of Newborn Screening: An Ethical Analysis by the President's Council on Bioethics
The President's Council on Bioethics
In this white paper examining disputes about the proper focus and scope of newborn screening the Council offers a set of recommendations designed to keep a public health model (which focuses not on the health of individual patients but on the “health” of society) from swamping and eventually obliterating a medical model (which makes an individual patient’s good the central concern). The recommendations are judicious, and I am happy to endorse them. Nevertheless, insofar as the key recommendation is more procedural than substantive, I suspect that the recommendations constitute at best a temporary holding action and are likely to be overcome by a desire for knowledge that has no natural limit.
We recommend a two-tier approach: mandatory newborn screening for disorders that constitute a significant danger to health and for which medical treatment is available; voluntary screening of newborns, done under the rubric of research and done only with informed consent of their parents, for other disorders about which relatively little is known or for which no medical treatment is currently available.
Advocates of research might raise an obvious worry about this approach: What if few parents consent to have their newborns screened for disorders that cannot currently be treated? Would that not slow the progress of knowledge and limit the treatments available to future sufferers?
But, the white paper assures us, there is little need to fear such a result. In most states parents are currently permitted to opt out of otherwise mandatory newborn screening, but few do so. The number of parents who opt out is comparable to the number of parents who refuse to consent in those few states where newborn screening is not mandatory but requires parental consent. Likewise, in pilot research programs requiring parental consent conducted in Massachusetts, approximately ninety-seven percent of parents chose to have their newborns screened.
Shall we therefore heave a sigh of relief, content in the belief that requiring informed parental consent will adequately protect newborn children without hindering at all the progress of research? Or shall we wonder whether the procedural requirement of informed consent, relatively inconsequential as it seems to be here, encourages us not to think about some of the deeper issues buried in a discussion of mandatory newborn screening?
Inclining as I do to the latter possibility, I offer here a very brief discussion aimed at calling such issues to mind. In some of its earlier work, especially in Beyond Therapy, the Council has already given attention to the way in which our desires for better (healthier and happier) children and longer life, having few limits, may undermine essential aspects of our humanity. Those concerns remain relevant here. We should not ignore the way in which an expanded program of newborn screening touches and transforms the relation between parents and children, nor should we overlook the questions it raises about the use of infants in the cause of medical research.
Expanded newborn screening is essentially research carried out for the public good, not the good of the infants being screened. It may be desirable to gain such knowledge, but it is not imperative. In “Philosophical Reflections on Experimenting With Human Subjects,” a classic essay in bioethics first published in 1969, Hans Jonas noted the difference. Sometimes it is imperative that a society avoid disaster; hence, for example, we conscript soldiers to fight. But we do not ordinarily conscript experimental subjects, because, however much we value the knowledge gained through research, we do not think ourselves obligated to acquire it. We seek volunteers, not conscripts, in the cause of medical progress.
For that reason, Jonas argued, rather than using those who might be most readily available as handy research subjects, we should be especially reluctant to use them—governing ourselves in accord with “the inflexible principle that utter helplessness demands utter protection.” Were we really to take that principle seriously, we would be reluctant to ask parents to consent to screening for disorders for which no treatment is available, since such screening can only be aimed at the acquisition of generalizable knowledge and not at treatment of a patient.
Also at stake, though, is something deeper than a question of research ethics alone. The white paper notes that mandatory screening of disorders for which no treatment currently exists may foster a kind of parental overprotectiveness, distorting the relation between the generations. We might go farther and ask: How could it not foster such an attitude? To seek to protect one’s children from harm is part of what it means to be a good father or mother; yet, what will teach us or who will help us know when to stop? It is always possible to suppose that knowledge which cannot at the moment benefit one’s child may be useful in the future—and must therefore be sought. Hence, we press to know more and more, and we do so with a good conscience, secure in the knowledge that our concern is for our children. Indeed, rather than taking comfort in the fact that ninety-seven percent of parents are likely to consent to the use of their newborn children in research of no therapeutic value for those children, we might wonder whether in our culture they really feel free to refuse when the lure of increased knowledge is held before them.
Giving parents more choices does not necessarily give them greater freedom to carry out their parental duties. Sometimes, paradoxically, it constrains them in new ways. How many parents are truly prepared to say no to an offer of knowledge about their child’s health, even if that knowledge can have no impact at all on the medical care of the child? How many want to shoulder the burden of responsibility involved in declining to know whatever can be known about the health of their child? A request for informed consent suggests that we are free; the cultural force of our commitment to increased scientific knowledge belies that seeming freedom.
Ours is a culture that—having largely forgotten the stories of the Garden of Eden and Prometheus—has little appreciation for the ambiguity of increased knowledge. Ours is also a culture that all too readily confuses an increasing number of choices with freedom from constraint. When, therefore, we ask parents to consent before their newborn children are screened for disorders that cannot (now) be treated, no one should feel embarrassed to worry about the quality or adequacy of that consent. Drawn by our limitless desire for knowledge and constrained in unexpected ways by the very choices set before us, we may not be as free as we suppose to give genuinely parental care to our children—and the line between screening that is mandatory and screening that is voluntary may be more blurred than we are eager to acknowledge.
It is a sign of ill health—in a society, as in an individual—to attend too single-mindedly to health. I doubt that a requirement of consent is by itself sufficient to save us from the tyranny of our desire to know more, to be healthy and happy—indeed, to save ourselves and our children from the evils we fear. Therefore, this Council’s recommendations—judicious and cautious as they are—will need considerable cultural support if they are actually to achieve their aims.