Newborn Screening: Education,Consent, and the Residual Blood Spot. The Position of the National Society of Genetic Counselors

Newborn screening (NBS) is a minimally invasive lifesaving test. There is currently no federal mandate for NBS, thus states determine their own screening panel based on the recommendations of the Secretary’s Advisory Committee on Heritable Disorders in Newborn and Children (SACHDNC), which was recently re-chartered as the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC). After NBS is completed, a couple of residual blood spots remain. While some states allow these spots to be used for public health and scientific research purposes, parents are not always informed about these additional uses. This paper addresses the National Society of Genetic Counselors’ (NSGC’s) position about NBS and blood spot storage/use and the rationale for these positions. The National Society of Genetic Counselors strongly supports newborn screening for the uniform screening panel of conditions recommended by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. NSGC also supports storage and use of blood spot samples by newborn screening laboratories and transparent policies that govern these activities.     

Faith as a Cultural Variable: Implications for Counselor Training

Counselors are faced with a unique challenge when faith is a prominent clinical variable. Although faith is deemed relevant, counselors may not feel comfortable approaching the subject of faith with clients. Participants in this study were practicing counselors licensed in their respective states; each was also a current doctoral candidate in counselor education and supervision. A scenario involving a complex interaction of faith; family systems; and lesbian, gay, bisexual, and transgender issues in clinical practice was provided. Participants were found to be more likely to value the importance of addressing faith in sessions than they were to actually use faith as an intervention.     

Developing a Model of Advanced Training to Promote Career Advancement for Certified Genetic Counselors: An Investigation of Expanded Skills,Advanced Training Paths,and Professional Opportunities

There are currently multiple paths through which genetic counselors can acquire advanced knowledge and skills. However, outside of continuing education opportunities, there are few formal training programs designed specifically for the advanced training of genetic counselors. In the genetic counseling profession, there is currently considerable debate about the paths that should be available to attain advanced skills, as well as the skills that might be needed for practice in the future. The Association of Genetic Counseling Program Directors (AGCPD) convened a national committee, the Committee on Advanced Training for Certified Genetic Counselors (CATCGC), to investigate varied paths to post-master’s training and career development. The committee began its work by developing three related grids that view career advancement from the viewpoints of the skills needed to advance (skills), ways to obtain these skills (paths), and existing genetic counselor positions that offer career change or advancement (positions). Here we describe previous work related to genetic counselor career advancement, the charge of the CATCGC, our preliminary work in developing a model through which to view genetic counselor advanced training and career advancement opportunities, and our next steps in further developing and disseminating the model.     

Attention and executive functioning profiles in children following perinatal arterial ischemic stroke

Perinatal arterial ischemic stroke (PAIS) is a form of childhood stroke; the majority of those affected experience neurologic sequelae, including motor, language and neurocognitive impairments. This study examines the attention and executive functioning (EF) profiles of children following PAIS, as well as the impact of age and sex. In this single-center cross-sectional study, 40 children aged 3 to 16 years (median age 7.2 years; 58% male) who have suffered a PAIS underwent a comprehensive neuropsychological battery to assess attention and EF. Parents completed behavioral questionnaires regarding real-world functioning. Composite scores were calculated for seven attention and EF domains (Attention, Working Memory, Verbal Retrieval, Inhibitory Control, Flexibility/Shifting, Planning/Organization, and Processing Speed). The results for all measured domains of attention and EF are significantly lower in the participants compared to the normative samples (p < .001), with the exception of Working Memory. However, increasing difficulty with Working Memory is associated with developing age. Older age at time of testing is also associated with a higher incidence of clinically-elevated attention deficit hyperactivity disorder (ADHD) symptoms. Sex is not associated with performance measures or parental report of functioning. The participants demonstrate mild-to-moderate attention and EF impairment compared to the normative population. Clinicians, families, and educators should be informed about the neurocognitive sequelae of PAIS and the need for close developmental surveillance in this population to identify vulnerable children and initiate appropriate therapeutic interventions in a timely fashion.     

On the border: young adults with LGBQ parents navigate LGBTQ communities

Little research has examined the perspectives of young adults with lesbian, gay, bisexual, transgender, and queer (LGBTQ) parents, particularly in relation to their identification with the LGBTQ community. To address this gap, we conducted a qualitative study of 42 young adults (ages 18-29) who were raised by LGBQ parents. We found that participants often described their sense of belonging to the LGBTQ community as shifting over the life course. Some participants, particularly those whose parents had always been out, felt connected to the LGBTQ community as children. Of these, most maintained those connections over time. However, some increasingly deidentified with the LGBTQ community, which they sometimes attributed to their own heterosexual identification. Others, particularly those whose parents came out later in life, described a lack of connection to the LGBTQ community as children. Of these, most became increasingly identified with the community, which they often attributed to their own and their parents' increasing sense of comfort with their parents' sexuality. Heterosexual participants who sought out LGBTQ-oriented groups in young adulthood sometimes encountered resistance from these groups, whereby participants' reasons for wanting to become involved were not readily apparent or appreciated. Our findings highlight the need for practitioners to understand the complex and often changing role of the LGBTQ community in the lives of young adults with LGBQ parents.     

Searching for interference effects in learning new face-name associations

In three experiments we attempted to increase interference using experimental manipulations in a face-name learning paradigm. All experiments included young and older adult participants because ageing is associated with increases in both susceptibility to interference and difficulty in learning face-name associations. None of the experiments produced interference for either age group: The inclusion of confusable (i.e., ambiguous) names and occupations, having to learn an additional piece of information in association with each face, and requiring participants to guess when uncertain all failed to negatively impact name learning. Interference does not appear to be the critical mechanism underlying the difficulty of learning proper names, and it cannot account for older adults' disproportionate decline in name-learning ability.     

3D Multiple Object Tracking Boosts Working Memory Span: Implications for Cognitive Training in Military Populations

Recently, there has been much theoretical and applied interest in the prospects of cognitive training for improving cognition. NeuroTracker is a relatively recent training device for improving dynamic attention in athletes by training 3D multiple-object tracking skills. We examined its effectiveness for improving working memory (WM) span in members of the Canadian Armed Forces (CAF) by randomly assigning participants to the experimental (NeuroTracker), active control (adaptive dual n-back task), or passive control (no contact) conditions. NeuroTracker training resulted in significant gains in verbal, visual, and matrix span. No gain was observed in the active or passive control group. These results suggest that NeuroTracker could be a useful training tool for increasing WM span in military samples. Future studies could examine the effects of NeuroTracker training on militarily relevant performance measures that draw on WM span.     

Acute Intellectual Effects of Pediatric Head Trauma

The current study compared Wechsler Intelligence Scale for Children-III (WISC-III) performances of 30 children who sustained head injury with the performance of orthopedic controls matched on gender, age, race, and parental education and occupational attainment. Children were followed during initial hospitalization, trauma severity variables were recorded, and duration of posttraumatic amnesia (PTA) was determined by serial testing of mental status. The WISC-III was administered immediately following resolution of amnesia. Although the majority of patients sustained mild injuries, children with head injuries obtained significantly lower IQ and factor scores than nonneurologically injured children. Consistent with past research, performance-based scores including Performance IQ, Perceptual Organization, and Processing Speed were more sensitive to head trauma than their verbal counterparts. Standardized measurement of PTA appeared to be a better predictor of IQ status following injury than Glasgow Coma Scale score on admission or length of unconsciousness.     

Brief report: Relationship between performance testing and parent report of attention and executive functioning profiles in children following perinatal arterial ischemic stroke

Children with perinatal arterial ischemic stroke (PAIS) have increased rates of attention and executive functioning (EF) weaknesses. Research in other pediatric disorders has documented poor consistency between parent report of these skills and performance-based measures. We compared these data sources in children with PAIS. Forty full-term (≥37 weeks) children ages 3–16 (median = 7.2 years; 58% male) with PAIS completed neuropsychological testing and composite scores were created for seven attention and EF domains (Processing Speed; Attention; Working Memory; Verbal Retrieval; Inhibitory Control; Flexibility/Shifting; Planning). Parents completed “real-world” functioning questionnaires (ADHD Rating Scale-IV, BRIEF). Correlational analysis were used to compare parent and performance measures. Correlations between ADHD Rating Scale-IV scores and the performance-based Attention and Inhibition composite scores were nonsignificant. Significant negative correlations were found between the BRIEF GEC and performance-based Verbal Retrieval and Processing Speed composites, but remaining GEC/composite comparisons were nonsignificant. Analyses between parent report BRIEF index scores and the corresponding performance-based domain identified one significant negative correlation between the BRIEF Working Memory Index and the Working Memory composite score. While children with PAIS demonstrate difficulties in attention and EF on both parent report and performance measures, little significance was found in comparisons of these two types of measures. There may be several explanations for this dissociation: measures assessing different aspects of the same underlying construct; performance-based measures lacking ecological validity; and parents underestimating/underreporting their child’s deficits. Thus, multiple sources of informant and performance data are necessary to make more accurate conclusions about functioning in these domains.