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Journal of Child Psychology and Psychiatry 56:9 (2015), pp 933935 doi:10.1111/jcpp.

12452

Editorial: Early detection of mental health and


neurodevelopmental disorders: the ethical challenges
of a field in its infancy
The signs of many mental health and neurodevelop- brain in the first three years of life suggests that
mental conditions first appear in childhood and intervention at this time will be most effective,
diagnosis can reliably be made by school age for further highlighting the urgency of early identifica-
most. Such conditions can be chronically disabling tion. It is important, however, to take a balanced
and confer significant long-term impairment. Deter- look at early detection,
What we choose to
mining early risk signs and first emerging symptoms weighing such benefits
publish, how we inter-
of disorder is imperative to enhance early detection against potential ethical
and to identify targets and ideal time points for risks as well.
pret our data, and the
prevention and intervention efforts. It is critical for One of the clearest clinical implications we
diagnostic and classification purposes to identify ethical challenges is draw are, themselves,
early behavioral patterns that are disorder-specific. the uncertainty of test ethical choices
In addition, identifying trans-diagnostic markers results and the risk of
that overlap across disorders could enhance the false-positive diagnoses at a very young age. The
impact of prevention and early intervention efforts early years of life are characterized by rapid
(Nolen-Hoeksema & Watkins, 2011; see also a recent changes in development as well as significant
JCPP Editorial1 on identifying core dimensions of behavioral variability from moment to moment,
early functioning). making screening and diagnosis challenging. Psy-
This Special Issue of JCPP focuses on the prospect chometric tools with adequate measurement prop-
of earlier identification of conditions that are tradi- erties (high sensitivity, specificity, and positive
tionally diagnosed later in childhood. Ten invited predictive value) do not exist for many conditions
contributions cover topics related to the science of first evident during the toddler and preschool
early detection. Several are focused on prediction: years. Inaccurately identifying a child as having a
of later diagnosis, of functional impairment, and of neurodevelopmental or mental health diagnosis
future service utilization. Sullivan and colleagues2 can cause a host of negative downstream effects.
explore the earliest developmental period, examining False-positive early identification arouses unneces-
whether identifiable patterns exist at 6 months of sary anxiety in parents. In the field of mandatory
age that predict ADHD risk. Rajendran et al. and newborn screening for genetic disorders, these
Thompson et al. prospectively track high-risk sam- potential risks have been well articulated, includ-
ples annually from age 3 to later childhood, exam- ing negative effects on the parent-child relation-
ining predictors of ADHD and dyslexia, respectively. ship, attachment, parental attitudes, and family
Dougherty and colleagues study preschool irritability dynamics (Hewlett & Waisbren, 2006). Anxiety may
and its trans-diagnostic associations with a broader remain, even after an early diagnosis is shown to
range of psychopathology, as well as functional be a false positive, with parents continuing to see
impairment, at age 9. Chorozoglou and colleagues the child as at risk.
examine the predictive ability of another symptom Incorrect early identification may also lead to the
detectable in preschool, hyperactivity, and its asso- recommendation of unnecessary treatments that
ciation with later economic burden and service may be costly and potentially invasive (e.g.,
utilization. Other papers focus on instrument devel- unneeded medications). Depending upon the state
opment (Mian et al., Petitclerc et al.), early screening of the science, the child may be exposed to interven-
for the purposes of widespread preventive interven- tions that are as yet untested. Research on very early
tion (Mihalopoulos and colleagues), and screening detection of many disorders is still maturing and
and diagnostic accuracy and stability (Ozonoff et al.; there is a consequent paucity of validated treatments
Sheldrick et al.). for infants and toddlers. Our field is caught in a
The articles in this Special Issue demonstrate tautology that is likely to continue for some time and
multiple benefits of early detection. Identification of may be unavoidable when a research area is matur-
delays and symptoms prior to school entry may ing: until we are accurately identifying infants,
prevent academic failure, school behavior problems, toddlers, and preschoolers with developmental and
dropout/delinquency, and the development of more psychiatric challenges, we cannot conduct research
severe mental health issues in later childhood, to develop and validate age-appropriate interven-
adolescence, and adulthood. Early detection has tions. Clinicians must be keenly aware of the limits of
the potential to decrease service utilization and current science and the ethical issues they raise and
economic burden later in life. The plasticity of the communicate these to families in a clear manner.

2015 Association for Child and Adolescent Mental Health.


Published by John Wiley & Sons Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main St, Malden, MA 02148, USA
934 Editorial: early detection J Child Psychol Psychiatr 2015; 56(9): 9335

False negatives also pose a major ethical chal- But, from a clinical perspective, what are we to do
lenge. It is no better, and perhaps worse, to inaccu- to help our patients and their families? First, we
rately tell a parent that their childs development is must clearly convey to parents the limits of our tests
fine, only to later find out that a diagnosis, and the and our ability to predict outcomes. Families will
opportunity for early intervention, were missed. vary in their tolerance for ambiguity, but it is
The first step in minimizing these ethical chal- nonetheless important to express that we are
lenges is to apply rigorous science to the identifica- currently better at predicting risk than making a
tion of early risk markers, so that we have a solid definitive diagnosis at these very early ages. There is
understanding of their base rates in the population a burgeoning literature on risk communication and
and their sensitivity, specificity, and positive and a working group has put together recommendations,
negative predictive values in high risk groups, as applicable across childhood disorders, on how to
articulated by Sheldrick and colleagues. Several communicate the difference between risk and diag-
papers in this Special Issue are devoted to identifi- nosis to parents (Yudell, Tabor, Dawson, Rossi,
cation of earliest risk markers (Dougherty et al.; Newschaffer, & Working Group in Autism Risk
Sullivan et al.; Thompson et al.), evaluation of psy- Communication and Ethics, 2013). Risk markers
chometric indices of early prediction (Ozonoff et al.; increase the likelihood of a diagnosis, but are not the
Sheldrick et al.), and development of better measure- same as a diagnosis. The concept of risk includes
ment tools for very young children (Mian et al.; the uncertainty that exists in the current state of
Petitclerc et al.). These papers advance our under- early detection science and measurement. Being
standing of the earliest red flags for different disor- open and transparent with parents about this
ders, how to measure them validly, and the kinds of uncertainty will promote trust and encourage long-
mistakes that may be made in applying predictive term engagement with the clinical care system, even
algorithms at very young ages. if the initial interpretation of the childs status
For some disorders, research on early markers has changes. We, and our science, can help parents
matured to the stage that there is clear empirical understand the range of outcomes, provide hope for
evidence of a prodrome that precedes the onset of the future, and address developmental concerns
frank symptoms. In schizophrenia, for example, a with practical advice applicable to children at risk,
great deal has already been written about the ethical even when early uncertainty exists about a specific
issues of identifying individuals who are asymp- diagnosis (Caronna, Augustyn, & Zuckerman,
tomatic or subthreshold in expression of later-onset 2007).
disease (Corcoran, Malaspina, & Hercher, 2005). We Finally, it is imperative that scientists are always
need to better understand both the benefits and the aware of the limitations of our studies. What we
costs of identifying such patients-in-waiting choose to publish, how we interpret our data, and
(Golden-Grant, Merritt, & Scott, 2015), especially the clinical implications we draw are, themselves,
when preventive interventions have not yet been ethical choices (Rysavy & Murph, 2015). Our work
developed. All the caveats just raised about the risks has great power to influence families. We must wield
of false positives and negatives and the limited this power carefully, always striving to help parents
toolbox of appropriate measures apply to identifica- make informed decisions about the best interests of
tion of pre-symptomatic markers as well. For most their child, as we move science forward.
diagnoses, there are not clear boundaries between
normality and disorder, and this will likely be even Sally Ozonoff
truer of prodromal markers, leading to the risk of JCPP Joint Editor and Special Issue Editor
pathologizing a minor variant or behavior that is
consistent with typical development. Furthermore, it
is not clear whether the parents of infants or toddlers Acknowledgement
who screen positive for a disorder, or for a marker of S.O. (a joint Editor of JCPP) acted as Guest Editor of
this Special Issue; she has declared that she has no
impending disorder, will choose to access further
competing or potential conflicts of interest in relation to
clinical services. For example, the rate of compliance
the Editorial or Special Issue, for which all the articles
with advice to pursue additional evaluation, after were subject to regular peer review and revision; the
screening positive for possible ASD at 14 months, is peer-review decision-making for the article by Ozonoff
relatively low (Dietz, Swinkels, van Daalen, van et al. was handled by the JCPP Editor-in-Chief (Ed-
Engeland, & Buitelaar, 2007). How invested will mund Sonuga-Barke). S.O. has no conflicts declared in
parents be in pursuing further medical attention her capacity as JCPP Joint Editor.
when a young child is not yet (very) symptomatic?
So where does this leave us? From a research Notes
perspective, it is clear that studies of early detection
must forge ahead swiftly, in order to improve and 1. JCPP Editorial: Sonuga-Barke, E. J. S. (2014),
mature the state of the science and permit the Editorial: Whats up, (R)DoC? can identifying
development and testing of early treatments and core dimensions of early functioning help us
preventive interventions. understand, and then reduce, developmental

2015 Association for Child and Adolescent Mental Health.


doi:10.1111/jcpp.12452 Editorial: early detection 935

risk for mental disorders? Journal of Child Golden-Grant, K., Merritt, J.L., & Scott, C.R. (2015). Ethical
Psychology and Psychiatry, 55, 849851. considerations of population screening for late-onset genetic
2. Articles that are in this issue (with itali- disease. Clinical Genetics. Advanced online publication. doi:
10.1111/cge.12566.
cised names on first mention) can be found at: Hewlett, J., & Waisbren, S.E. (2006). A review of the
http://onlinelibrary.wiley.com/doi/10.1111/jcpp. psychosocial effects of false positive results on parents
2015.56.issue-9/issuetoc. and current communication practices in newborn
screening. Journal of Inherited Metabolic Disease, 29,
677682.
Nolen-Hoeksema, S., & Watkins, E.R. (2011). A heuristic for
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2015 Association for Child and Adolescent Mental Health.