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161.
Brooke L. Levenseller Danielle J. Soucier Victoria A. Miller Diana Harris Laura Conway Barbara A. Bernhardt 《Journal of genetic counseling》2014,23(4):552-565
Advances in whole genome and whole exome sequencing (WGS/WES) technologies have led to increased availability in clinical settings. Currently, there are few guidelines relating to the process and content of informed consent for WGS/WES, nor to which results should be returned to families. To address this gap, we conducted focus groups to assess the views of professionals, parents, and adolescents for the future implementation of WES. The discussions assessed understanding of the risks and benefits of WES, preferences for the informed consent discussion, process for return of results, and the decision-making role of the pediatric patient. Professional focus group participants included bioethicists, physicians, laboratory directors, and genetic counselors. Parent focus groups included individuals with children who could be offered sequencing due to a potential genetic cause of the child’s condition. On-line discussion groups were conducted with adolescents aged 13–17 who had a possible genetic disorder. We identified discrepancies between professionals and patient groups regarding the process and content of informed consent, preference for return of results, and the role of the child in decision-making. Professional groups were concerned with the uncertainty regarding professional obligations, changing interpretation in genomic medicine, and practical concerns of returning results over time. Parent and adolescent groups focused on patient choice and personal utility of sequencing results. Each group expressed different views on the role of the child in decision-making and return of results. These discrepancies represent potential barriers to informed consent and a challenge for genetic counselors regarding the involvement of pediatric patients in decision-making and return of results discussions. 相似文献
162.
Monica D. Nardini Anne L. Matthews Shawn E. McCandless Larisa Baumanis Aaron J. Goldenberg 《Journal of genetic counseling》2014,23(4):506-515
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. 相似文献
163.
Anne Mäkikangas Sanna Kinnunen Johanna Rantanen Saija Mauno Asko Tolvanen Arnold B. Bakker 《Anxiety, stress, and coping》2014,27(5):555-575
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. 相似文献
164.
Staci Martin Pamela L. Wolters Andrea Baldwin Marie Claire Roderick Mary Anne Toledo-Tamula Andrea Gillespie Brigitte Widemann 《Journal of genetic counseling》2014,23(5):796-804
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. 相似文献
165.
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. 相似文献
166.
Isabell Büschel Rostane Mehdi Anne Cammilleri Yousri Marzouki Bernice Elger 《Science and engineering ethics》2014,20(3):639-658
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. 相似文献
167.
Carrino Emily A. Bryen Chloe P. Maheux Anne J. Stewart J. L. Roberts Savannah R. Widman Laura Choukas-Bradley Sophia 《Sex roles》2022,86(7-8):395-414
Sex Roles - “What defines a feminist?” is a heavily debated question within scholarly and mainstream discourse. Although prior studies have examined adults’ definitions of... 相似文献
168.
Vesile Sandikci Anne Ebert Carolin Hoyer Michael Platten Kristina Szabo 《Journal of Neuropsychology》2022,16(1):149-160
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. 相似文献
169.
170.
Shannon C. Houck Lucian Gideon Conway III Laura Janelle Gornick 《Political psychology》2014,35(5):647-659
Automating integrative complexity is fraught with many challenges. To address these challenges, we discuss the tension between a specificity approach and a more flexible multiple‐pass approach, the multifaceted nature of the complexity construct, the gold standard for complexity measurement, the difficulty of human scoring and its consequences for automation, and some ways forward for creating the best complexity measurements. In so doing, we present new data demonstrating (1) initial evidence for the validity of a new automated system for measuring two different forms of complexity (elaborative and dialectical), (2) the danger of constructing measurements in a purely ad hoc fashion that ignores prospective testing, (3) human‐to‐computer correspondence is in part a function of human‐to‐human correspondence, (4) human‐to‐computer correspondence increases systematically as one uses tests with larger units of analysis, and (5) the lack of correspondence of different systems (both human and automated) may occur in part because they were designed for different units of analysis. 相似文献