Are parents really obligated to learn as much as possible about their children’s genomes?

Just a few years ago, it seemed that North American parents were very interested in sequencing their children’s genomes. Parents of children with various underlying health conditions reported high interest in learning as much as possible about their children’s genomes,¹ as did pregnant parents,² and survey research in the US published in 2013 and 2014 reported that most parents would welcome expanded screening or sequencing of their newborn babies.³ In one study, 82.7% of new parents said they would be somewhat, very or extremely interested in genomic testing for their newborn.⁴ These high levels of parental interest appear to be driven by two closely linked perceptions: that parents are obligated to agree to medical interventions that might benefit their children, and that genome sequencing is one such beneficial medical intervention. We wonder, though, just how true each of these ideas is.

One survey, which found that a majority of parents have a positive attitude toward expanded newborn screening, noted that the most commonly endorsed reason was “to prepare for any special needs of my child.”⁵ One of the few studies to dig deeper into the reasons for such high levels of parental interest, was conducted at the Hospital for Sick Children in Toronto. Parents of children with a variety of symptoms who had been referred to a hospital’s genome clinic were offered sequencing, with a subset later interviewed about their decisions. These parents were told that by virtue of being in the study they would be informed of any variants known to predict a medically significant and clinically actionable childhood-onset disorder. In addition, they could elect return of variants associated with medically significant and clinically actionable adult-onset diseases. Most parents agreed to receive these additional results about their children, even if they declined to learn the same information about themselves.⁶ In interviews, parents expressed some ambivalence about their decisions. They reasoned that the additional results might enable them to prevent or prepare for health vulnerabilities in their child, but worried that they could also cause psychological distress, lead to insurance discrimination, and be difficult to make sense of. They agreed to receive these extra results out of “a perceived moral obligation to learn, to the extent possible, the full range of current and future risks for their children, no matter how unpleasant” The Toronto researchers named the parental obligation “inflicted ought,” and noted that it was powerfully felt. “Faced with this opportunity [to receive their child’s medically significant and clinically actionable adult onset results],” the researchers wrote, “parents felt they had no choice.”⁷

It was surprising, then, when two ongoing US studies released interim results reporting that the vast majority of parents of apparently healthy babies are actually declining sequencing when it is offered.⁸ Why the massive discrepancy between surveys and other studies that have reported levels of parental interest in sequencing that rise to the level of an “inflicted ought” and these two studies reporting such low uptake by US parents? Study leaders are not yet sure, but they have stated that they believe many refusals are driven by logistics—the burden of joining the study is too great at a time when new parents have a lot on their plates. The remainder, they have stated, reflects parents’ concern that the results might one day be used against the child, to deny insurance or restrict access to educational or employment opportunities.⁹

While routinized newborn sequencing, whether as part of public health or routine clinical care, might avoid these logistical hurdles, the latter concerns about discrimination would presumably be even greater outside the research setting. We wonder, also, whether some new parents are declining sequencing because, when the offer is really on the table, they come to understand the low odds of discovering anything that they can do something about without causing commensurate harms to themselves or their children. Even if results are limited to “medically actionable” variants (in one of the US studies they are, and in the other they are not), the range of uncertainty presented by the variable probability, penetrance, severity, imminence, and preventability of most current targets is quite wide. It would be quite understandable if, having survived the uncertainties of pregnancy, labor, and delivery, and anticipating the life-long uncertainties of child-rearing and parenthood, the parents of apparently healthy babies decide to focus their mental and emotional resources on the child’s highest priority needs. For these genomic-savvy parents, the prospect of entertaining complex, uncertain, but potentially worrying genetic results about which they can likely do nothing might reasonably merit about the same priority as worrying over the health risks posed to their child by global warming or the rise of multi-drug resistant pathogens. They might rationally conclude to simply not to go there right now.

As new parents quickly learn, parenting always involves “choosing your battles.” Ideally, parents have the freedom to make those moral choices without the prejudice of an unreasonable or premature “inflicted ought”. Resolving the predictive uncertainties of genomic information is the professional responsibility of the biomedical community, just like clarifying the impact of global warming or assessing the risks of rising multi-drug resistance is the responsibility of similar specialists. Until practical parental approaches to protecting their children from any of those risks emerge, these biomedical problems should not be shifted to parental shoulders. To do so not only increases the mental and emotional burden on parents, but distorts the scope of parental responsibility in ways that undermine parents’ capacity to play their immediate role as the nurturers of a new life.