Genomic Counseling in the Newborn Period: Experiences and Views of Genetic Counselors

As newborn screening (NBS) technology expands, genetic counselors will become more involved in counseling for NBS results, including those potentially generated from whole exome sequencing (WES) and eventually whole genome sequencing (WGS). Members of the National Society of Genetic Counselors (NSGC) responded to an online survey (n?=?208) regarding genomic counseling in the context of NBS. The majority of participants (82.1 %) did not feel prepared to counsel for WGS results from NBS. Counselors with previous WES/WGS counseling experience felt more prepared (p?=?0.005) to counsel for WGS results from NBS than those without WES/WGS experience. Overall, counselors expressed ethical and practical concerns regarding WGS in NBS, as well as a need for additional training regarding this application of the technology before it is implemented. Based on the results of this study, genetic counselors voice caution to the larger genetics community regarding expansion of NBS to incorporate genomic sequencing and advocate for additional education prior to initiating WGS into NBS.     

Association between vigor and exhaustion during the workweek: a person-centered approach to daily assessments

The purpose of this quantitative diary study was to investigate daily vigor and exhaustion using a person-centered approach. The study also investigated whether and how experiences of vigor and exhaustion relate to a state of being recovered. A total of 256 Finnish employees filled in a diary questionnaire during five consecutive workdays. Vigor and exhaustion showed strong negative interdependence within and between days. However, by applying a person-centered analysis, we were able to differentiate three groups with meaningful variation in vigor and exhaustion. The groups were labeled as Constantly vigorous (n = 179), Concurrently vigorous and exhausted (n = 30) and Constantly exhausted (n = 43). The vigor-exhaustion groups were also characterized by their recovery experiences: The Constantly vigorous employees recovered well from work strain during the workweek whereas the Constantly exhausted group recovered poorly. Overall, while the results indicate that, typically, vigor and exhaustion are exclusive experiences, it is also possible for them to be experienced simultaneously from day to day at the moderate levels. Thus, positive and negative experiences may co-occur.     

Attitudes About Internet Support Groups Among Adolescents and Young Adults with Neurofibromatosis Type 1 and their Parents

Youth with neurofibromatosis type 1 (NF1) have multiple, complex symptoms associated with physical, social-emotional, and cognitive difficulties. In addition, caring for a child with NF1 can be extremely challenging for parents. Since research with other chronic illness populations suggests that social support, including internet support groups (ISGs), can be beneficial, this survey study aimed to determine the attitudes and preferences of adolescents and young adults with NF1 and parents of a child with NF1 regarding ISGs. Thirty patients and 30 caregivers completed a 24-item survey about ISGs. Many patients and parents are not aware of any ISGs for NF1, but are interested in using one in the future for a variety of reasons, including to get answers to their questions about NF1, to find out about research studies, and to discuss problems and concerns about NF1. Specific concerns of interest include physical, social-emotional, and cognitive aspects of NF1. ISGs have potential as a social support intervention within the NF1 community. ISGs for the NF1 population should include patients with NF1 (or parents of children with NF1) as well as a health professional, and both chat rooms and discussion boards likely would be well-received.     

The Role Maturity of Parents of Emerging Adult Children: Validity of a Parental Maturity Measure

Parental maturity refers to parents’ ability to see their child as an independent adult with limitations and needs, and relate to him/her accordingly. In this study, we had two main aims: (a) develop a measure of parental maturity and test its construct validity in a sample of middle-aged parents with an emerging adult child, and (b) examine how the dimensions of parental maturity varied with a child’s gender and life course transitions (i.e., employment and leaving the parental home). A sample of 343 Portuguese parents (187 mothers and 156 fathers) aged 40–68 participated in this study. Factorial validity of the Parental Maturity Measure was tested using exploratory and confirmatory factor analyses and measurement invariance across mothers and fathers. Results gave support for a two-factor measure—Comprehending (6 items) and Letting Go (4 items)—with an equivalent meaning across parents. Dimensions of parental maturity were associated with differentiated and positive parent–child relationship qualities, but were quite independent of the child’s gender and life course transitions.     

Protecting Human Health and Security in Digital Europe: How to Deal with the “Privacy Paradox”?

This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is to shed light on the tension between secrecy and transparency in the digital era. A special focus is put from the perspectives of psychology, medical ethics and European law on the contradiction between individuals’ motivations for consented processing of personal data and their fears about unknown disclosure, transferal and sharing of personal data via information and communication technologies (named the “privacy paradox”). Potential benefits and harms for the individual and society resulting from the use of computers, mobile phones, the Internet and social media are being discussed. Furthermore, the authors point out the ethical and legal limitations inherent to the processing of personal data in a democratic society governed by the rule of law. Finally, they seek to demonstrate that the impact of information and communication technology use on the individuals’ well-being, the latter being closely correlated with a high level of fundamental rights protection in Europe, is a promising feature of the socalled “e-democracy” as a new way to collectively attribute meaning to large-scale online actions, motivations and ideas.     

Associations between symptoms of maternal postpartum depression,gestational age and infant social withdrawal: A longitudinal study in a community cohort

Infant social withdrawal is a risk factor for non-optimal child development; thus, it is important to identify risk factors associated with withdrawal. In a large community sample (N = 19,017), we investigate whether symptoms of maternal and partner postpartum depression (PPD; measured with the Edinburgh Postnatal Depression Scale) and prematurity are predictors of infant social withdrawal (measured with the Alarm Distress Baby Scale). Withdrawal was assessed at 2–3, 4–7 and 8–12 months postpartum. Linear regressions showed that prematurity predicted higher infant social withdrawal at all time points, and maternal symptoms of PPD were positively associated with withdrawal at 2–3 months. Logistic regressions showed that odds for elevated social withdrawal were increased with elevated levels of maternal symptoms of PPD at 2–3 and 8–12 months. Partner's symptoms of PPD were not associated with withdrawal. Future studies should investigate how PPD symptoms and prematurity may impact the individual development of social withdrawal.     

Are Feminists Empowered Activists or Entitled Whiners? A Thematic Analysis of U.S. Adolescents’ Definitions of “Feminist” in a Diverse,Mixed-Gender Sample

Sex Roles - “What defines a feminist?” is a heavily debated question within scholarly and mainstream discourse. Although prior studies have examined adults’ definitions of...     

Impaired semantic memory during acute transient global amnesia

As a clinical model of hippocampal dysfunction, transient global amnesia (TGA) causes reversible memory disturbance. While episodic memory deficits in TGA patients have been extensively described, data regarding semantic memory involvement are sparse and contradictory. We report impaired semantic fluency performance in 16 patients with hippocampal lesions on MRI during acute TGA compared to their performance one day later and to that of 20 healthy subjects. Our findings support the involvement of the hippocampus in semantic retrieval.