Eunju Jung

Autism spectrum disorders: a qualitative study of attitudes toward prenatal genetic testing and termination decisions of affected pregnancies

In the United States, prenatal genetic testing (PGT) for Autism Spectrum Disorders (ASD) is currently available via clinical genetic services. Such testing may inform parents about their unborn childs risk for ASD, prepare parents for the birth of an affected infant, and allow them to arrange for early interventions. Although PGT for autism has potential benefits, the associated ethical, legal, and social implications (ELSI) should be considered. This first qualitative study employed a hypothetical scenario to explore the attitudes toward PGT and termination decisions of 42 parents of children with ASD. Over half of the participants expressed willingness to undergo PGT for autism. Reasons included better preparation for birth, early and better treatment, termination of affected pregnancy, contribution to research, and curiosity. Of the 31 parents who were either willing or unsure about undergoing the PGT, approximately three‐fourths would continue their hypothetical affected pregnancies. Explanations included preparation for birth of the child, bonding or acceptance of existing ASD‐affected children, apprehensions about test limitations, and religious concerns. Parents who reported they would terminate the affected pregnancy in this hypothetical situation were primarily Asians. This study contributes to the growing understanding of the ELSI aspects of PGT in clinical practice.

Autism genetic testing information needs among parents of affected children: A qualitative study

OBJECTIVE Leading health agencies recommend physicians to provide information regarding genetic testing for autism spectrum disorders (ASD) to parents of affected children. How to effectively provide this information, however, is unclear for physicians. This qualitative study examined the information needs regarding ASD genetic testing among parents of affected children. METHODS Semi-structured, in-depth interviews were conducted with 42 parents who had at least one child with ASD. Content analysis was utilized to analyze the interview data. RESULTS The majority of parents (83%) reported they had never received information regarding ASD genetic testing from their doctors. Nevertheless, most parents (86%) expressed an interest to learn about this information. Their preferred topics included: cost (60%), benefits (48%), accuracy (38%), test procedure (29%), potential physical harms from the test (29%), confidentiality (12%), previous utilization by other affected families (2%), and eligibility criteria for this genetic testing (2%). Moreover, parents mentioned various methods to facilitate their learning, including Web-based approaches (43%), workshops/seminars (36%), brochures and flyers (31%), and videos (10%). CONCLUSION To promote parental informed decision-making regarding ASD genetic testing, educational materials should be developed based on our findings. PRACTICE IMPLICATIONS Application of these needs assessment findings will subsequently improve the delivery of healthcare services.

Effectiveness of a Web-based genomics training for health educators in Texas

Purpose: With advanced genomic developments, better prevention strategies are available via personalized genomic services. Because there is a shortage of genetic professionals, and primary-care providers are overwhelmed with routine practice, involving health educators—whose expertise includes educating the general public and promoting healthy behavior—to provide basic genomics education may facilitate better services. We developed the first evidence- and theory-based family health history Web-based training for Texas health educators. This report presents its evaluation results.Methods: Approximately one-third of Texas health educators holding (Master) Certified Health Education Specialist designation (~40% were racial/ethnic minorities) participated in the family health history Web-based training. Attitudes, self-efficacy, intention, knowledge, and practice were assessed at baseline, immediately after training, and 3 months posttraining. Qualitative data were collected to provide additional evaluation findings.Results: Participants significantly improved their attitudes, knowledge, intention, and self-efficacy regarding family health history education, immediately posttraining and after 3 months. The number of participants practicing family health history was significantly increased. Participants’ overall assessment of the program was positive.Conclusion: This family health history Web-based training successfully increased the number of genomically competent and culturally diverse Texas health educators. Ongoing efforts are needed to sustain and expand this education as well as to disseminate it to all health educators in the United States.Genet Med 2014:16(3):271–278

Comparisons of Three Empirical Methods for Partial Factorial Invariance: Forward, Backward, and Factor-Ratio Tests

When factorial invariance is violated, a possible first step in locating the source of violation(s) might be to pursue partial factorial invariance (PFI). Two commonly used methods for PFI are sequential use of the modification index (backward MI method) and the factor-ratio test. In this study, we propose a simple forward method using the confidence interval (forward CI method). We compare the performances of the aforementioned 3 methods under various simulated PFI conditions. Results indicate that the forward CI method using 99% CIs has the highest perfect recovery rates and the lowest Type I error rates. A performance that is competitive with this is that produced by the backward method with the more conservative criterion (MI = 6.635). Consistently delivering the poorest performance, regardless of the chosen confidence level, was the factor-ratio test. Also discussed are the work’s contribution, implications, and limitations.

Two-Step Approach to Partial Factorial Invariance: Selecting a Reference Variable and Identifying the Source of Noninvariance

To date, no effective empirical method has been available to identify a truly invariant reference variable (RV) in testing measurement invariance under a multiple-group confirmatory factor analysis. This study proposes a method that, in selecting an RV, uses the smallest modification index (min-mod). The method’s performance is evaluated using 2 models: (a) a full invariance model, and (b) a partial invariance model. Results indicate that for both models the min-mod successfully identifies a truly invariant RV (Study 1). In Study 2, we use the RV found in Study 1 to further evaluate the performance of item-by-item Wald tests at locating a noninvariant variable. The results indicate that Wald tests overall performed better with an RV selected in a partial invariance model than an RV selected in a full invariance model, although in certain conditions their performances were rather similar. Implications and limitations of the study are also discussed.

Factor structure and factorial invariance of the Multidimensional Acculturative Stress Inventory

Using a national data set, this study examined the factor structure and factorial invariance of the Multidimensional Acculturative Stress Inventory (MASI) across Latino and Asian Americans, gender, and nativity (U.S.- vs. foreign-born). Results showed that a 4-factor model of acculturative stress provided good fit to the data. Tests of factorial invariance provided evidence of measurement equivalence across all of the groupings tested. These findings suggest that the MASI operationalizes acculturative stress in an equivalent manner across Latino and Asian American students, gender, and nativity.