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In Taiwan, autism spectrum disorders (ASDs) are an emerging public health concern. The ongoing scientific progress for understanding the genetic etiology of ASD makes it increasingly important to examine how parents of children with ASD perceive the causes and recurrence risk of having another child with ASD. These perceptions may influence their family planning, attitudes toward genetic services, and willingness to take their children for ASD genetic testing. However, previous studies addressing this issue were conducted primarily in Western countries. As culture might shape an individual's views of genetic/genomic disorders, this first-of-its-kind study examined the perceptions of the genetic etiology for ASD and the recurrence risk among Taiwanese parents of children affected with ASD. In-depth, semi-structured interviews were conducted among 39 parents having at least one child with ASD. Although the majority of participants believed that ASD has a genetic link, less than half perceived genetic factors as the cause of their own child's ASD. Moreover, most participants articulated their recurrence risk incorrectly. Some parents were concerned about their doctors' limited genomic competencies. To provide parents with better education, counseling, and support for making reproductive decisions, ASD-related genomic education among Taiwanese physicians is needed.

The knowledge of genomic discoveries has been expanding daily, holding enormous potential to improve population health. Nevertheless, the training of health educators about genomics is lagging behind. To facilitate the movement of genomics into health promotion practice, as the first step, we conducted the first national survey to examine genomic education needs among health educators in the United States. A total of 980 health educators holding the Certified Health Education Specialist designation completed our web-based survey. The majority of participants reported that they had limited knowledge and training in genomics and were interested in seeking genomic education. Their first three preferred educational topics included genomic disorders/diseases (68.2%), family health history or genetic risk assessments (55.5%), and how to link genomics to health promotion (51.0%). A few contents, including basic genomic concepts, communication skills, and how to integrate genomics into routine professional tasks, were important to health educators’ practice in genomics, but respondents seemed to be less favorable toward learning these contents. Continuing education (89.4%), web-based training (85.9%), and professional conferences (76.7%) were participants’ top three desired delivery methods. This study will help guide the development, implementation, and evaluation of future genomic training programs for U.S. health educators.

Aims: This paper describes the development and pilot-testing of The Family Health History Training Program for Health Educators (FHHTP). Although in recent years professional organizations have urged the health promotion workforce to adopt genomics-related competencies, training opportunities designed specifically for health educators (HEs) remain scarce. Designed by a team of HEs, the FHHTP aims at preparing HEs in the state of Texas, USA, to use a family health history as a genomic health promotion tool. Methods: In this report, we describe (a) the program's empirical and theoretical grounding, (b) its components, and (c) pilot-testing of the 2 main components (Web-based and workshop trainings). The FHHTP addresses the training needs expressed by HEs and anchors itself in a theoretical model previously tested with 1,607 US-based HEs. The model draws from Social Cognitive Theory, the Theory of Planned Behavior, and Diffusion of Innovations theory. The program comprises 6 elements; the Web-based training and the training workshops are the focus of this paper. Results: Pilot data indicate participants' knowledge and intention improved significantly (p < 0.05) at post-test and remained significantly higher at the 3-month follow-up. Attitudes, self-efficacy, behavior, knowledge/awareness, and intention also exhibited improvement in scores over time. Conclusion: We conclude, therefore, that the FHHTP can contribute significantly to the adoption of genomic competencies by Texas HEs. This report describes how the first-of-its-kind genomics training for HEs in the USA - FHHTP - was developed and pilot-tested with HEs in Texas.

Prenatal genetic testing (PGT) for early and accurate diagnosis of complex genomic diseases and traits, along with relatively rare and severe genetic disorders, is a growing trend in genomic medicine. To address the ethical, legal, and social issues regarding PGT use, the voices of racial/ethnic minorities should be heard. This first-of-its-kind qualitative study examined Chinese Americans' perspectives regarding PGT to diagnose their fetuses for various genetic/genomic diseases and traits. We conducted semi-structural, hypothetical-scenario-based interviews with 49 participants from two major Chinese-American communities in the South. Although approximately one fifth of participants refused to test their fetuses, most tended to favor PGT. The four most frequently identified diseases/traits mentioned by participants included family-history-related diseases, genetic disorders, intelligence quotient (IQ), and psychological/mental disorders. A few respondents, regardless of socio-demographic status, indicated they might terminate their pregnancies if their fetuses carried genes for family-history-related diseases, genetic disorders, low IQ, psychological/mental disorders, and/or physical defects. Participants' attitudes might reflect lack of genetic/genomic knowledge and unawareness of available resources for families with special needs. Moreover, some participants' attitudes appeared related to their cultural beliefs. Our findings represent an initial window to understand Chinese Americans' views regarding PGT. Additional quantitative studies on large samples are needed.

We performed a systematic review of factors affecting parental decisions to continue or terminate a pregnancy after prenatal diagnosis of a sex chromosome abnormality, as reported in published studies from 1987 to May 2011. Based on the Matrix Method for systematic reviews, 19 studies were found in five electronic databases, meeting specific inclusion/exclusion criteria. Abstracted data were organized in a matrix. Alongside the search for factors influencing parental decisions, each study was judged on its methodological quality and assigned a methodological quality score. Decisions either to terminate or to continue a sex chromosome abnormality-affected pregnancy shared five similar factors: specific type of sex chromosome abnormality, gestational week at diagnosis, parents' age, providers' genetic expertise, and number of children/desire for (more) children. Factors unique to termination decisions included parents' fear/anxiety and directive counseling. Factors uniquely associated with continuation decisions were parents' socioeconomic status and ethnicity. The studies' average methodological quality score was 10.6 (SD = 1.67; range, 8-14). Findings from this review can be useful in adapting and modifying guidelines for genetic counseling after prenatal diagnosis of a sex chromosome abnormality. Moreover, improving the quality of future studies on this topic may allow clearer understanding of the most influential factors affecting parental decisions.

Purpose: To examine public health educators' perceptions of barriers to incorporate genomic content (information, discoveries, technologies) into health promotion. Methods: Mixed methods (qualitative and quantitative approaches)—using a fully mixed sequential dominant status design—were employed. Qualitative data were collected from a convenient sample of 24 public health educators, through personal interviews. Quantitative data, from a nation-wide sample of 1607 professionals (from four professional organizations/groups), were collected through a Web-based survey (adjusted response rate = 23.1%). Content analysis guided the interpretation of the qualitative data; descriptive statistics were used to analyze the survey data and to compare prevalence of themes across the qualitative and survey samples. Results: Specific barriers highlighted by the qualitative and the survey samples included lack of genomic knowledge (basic and applied), having to deal with the lay public's reaction, lack of priority, time and resources, and incompatibility between genomics and public health educators' religious and ethical beliefs. Conclusion: This study suggests that public health educators perceive numerous barriers to incorporating genomics into health promotion. More research is needed to confirm this study's findings, to explore potential sources, and to propose viable strategies to overcome many of these barriers.

Purpose: This study assessed U.S. public health educators' attitudes toward genomic competencies, their awareness of efforts in the health promotion field to promote/incorporate genomics, and their basic & applied genomic knowledge. Methods: A total of 1607 public health educators, nationwide, responded to a web-based survey. Results: The sample comprised predominantly white (76.8%) female (83.9%) participants, with an average age of 40.1 years and 11.2 years of practice in public health education/promotion. Generally, participants had negative attitudes toward genomic competencies, low awareness, and deficient genomic knowledge. Although various socioeconomic characteristics (e.g., ethnicity, gender, and educational level) correlated with participants' attitudes, awareness, and genomic knowledge, training in genetics/genomics or public health genomics also exhibited a positive association. After we controlled for socioeconomic factors, awareness, training, and genomic knowledge remained significantly associated with respondents' attitudes toward genomic competencies. Conclusion: Although this sample of public health educators had unfavorable attitudes and limited genomic knowledge, training seems to affect these variables. Thus, relevant training for this group of health professionals should be developed and advocated. Continuing education tools, focusing on public health genomics content, might be a venue for delivery of information and the development of favorable professional attitudes.

To assess factors affecting individuals' decision to accept or decline cystic fibrosis carrier testing/screening, as reported in studies published until December 2006. The Health Belief Model guided classification of each factor, and the studies' methodological quality was assessed.A three-stage search and retrieval process, alongside application of specific inclusion/exclusion criteria, yielded 40 studies (in 35 articles). For each reviewed study, authors abstracted and organized selected data into a matrix and assigned a methodological quality score.The four most frequently identified acceptance factors included three Health Belief Model factors and one non-Health Belief Model factor: perceived benefits of undergoing cystic fibrosis carrier testing/screening, weaker perception of barriers to cystic fibrosis carrier testing/screening, fewer/no children or desiring children, and research-related factors (non-Health Belief Model factor construct). All four most frequent factors associated with declining testing were Health Belief Model factor constructs: perceived barriers to obtaining cystic fibrosis carrier testing/screening, parity, lack of knowledge, and weaker perception of benefits of undergoing cystic fibrosis carrier testing/screening. The average methodological quality of the studies was 10.2 (SD=3.2; range, 5-18 points).The methodological and theoretical quality of this body of literature could be substantially improved if researchers employed theory-based approaches, tested (and reported) the validity/reliability of their own data, and employed multivariate statistical analyses and/or better controlled research designs. Improving the quality of future studies may allow better inferences regarding the relative contribution of each factor identified in this review to individuals' decision-making process.

Although the completion of the Human Genome Project will offer new insight into diseases and help develop effi cient, personalized treatment or prevention programs, it will also raise new and non-trivial public health issues. Many of these issues fall under the professional purview of public health workers. As members of the public health workforce, health educators are being called upon to deal with genomic-related public health topics. Thus, we propose fi ve arguments supporting the need for health educators to develop their genomic competencies and integrate public health genomics (PHG) into health promotion. These arguments highlight various dimensions of health educators’ professional goals and range from professional responsibilities and competencies to the availability of funding for genomic-related research or interventions and opportunities for future employment. Alongside these arguments, we present key PHG terms to facilitate understanding and to establish a common set of meanings for readers. Moreover, we discuss the current efforts being made by the fi eld of health education to integrate genomics into research and practice, as well as implications and next steps required to optimize this integration.

OBJECTIVES To examine Texas health educators' practice of providing family health history (FHH)-based services, alongside factors shaping their practice. METHODS A theoretical model of factors influencing health educators' FHH-based practice was developed and tested through structural equation modeling. (Master) Certified Health Education Specialists (N = 228; 40.93%) in Texas completed a baseline survey immediately before online or workshop FHH training. RESULTS Participants incorporated FHH into their practice at low rates (on average=37.10%). Our model fit the data adequately based on the overall model chi-square test and model-fit-indices (ie, χ(2) [df = 21]=27.20; p = .16; RMSEA=0.04; SRMR=0.05; CFI=0.97). Intention, self-efficacy, attitudes, and knowledge were associated with practice. CONCLUSIONS Training health educators to incorporate FHH into their practice is needed. Our theoretical model suggests intervention points for future training.

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

The goal of this first-of-its-kind qualitative study was to examine the awareness, attitudes, and experiences among parents of autistic children regarding autism genetic testing.We conducted in-depth, individual, and semistructured interviews with 42 parents of autistic children with diverse racial/ethnic backgrounds. All interviews were audio-taped, transcribed, and coded into major themes and subthemes.Approximately one-quarter of participants had two or more autistic children, and about half of them were ethnic/racial minorities. The majority of participants postulated favorable attitudes toward autism genetic testing for three main reasons: early intervention and treatment, identifying the etiology of autism, and informed family planning. Nevertheless, among parents who had taken their children for genetic testing, some expressed frustration and questioned the competency of their providers in interpreting test results. Asian parents and those with a low socioeconomic status expressed lower awareness and tended to have more limited access to autism genetic testing.As health-care providers play a vital role in providing genetic services and education, these professionals should be educated and be sensitive to the needs of parents with autistic children. Further quantitative research is required to examine the effects of socio-demographic factors on parents' awareness, attitudes, and experiences regarding autism genetic testing.

Objective Family health history (FHH) plays a significant role in early disease detection and prevention. Although Asian Americans are the fastest growing U.S. immigrant group, no data exists regarding Chinese Americans’ (the largest Asian subgroup) views and use of FHH. This study examines this important issue. Methods Forty-nine adults from southern U.S. Chinese American communities participated in this qualitative, semi-structured, in-depth interview study. Interviews were audio recorded, transcribed, and analyzed with a content analysis approach. Results Although the majority of participants perceived the importance of collecting FHH, most lacked FHH knowledge and failed to collect FHH information. Barriers affecting FHH collection and discussion among family members included long-distance separation from family members, self-defined “healthy family,” and Chinese cultural beliefs. Lack of doctors’ inquiries, never/rarely visiting physicians, self-defined “healthy family,” perceived insignificance of discussing FHH with doctors, and Chinese cultural beliefs were the obstacles in communicating FHH with physicians. Conclusions Chinese Americans had limited usage of their FHH and faced cultural, distance, knowledge-, and healthcare system-related barriers that influenced their FHH use. Developing FHH education programs for Chinese Americans is highly recommended.

As genomic advances have turned the promise of personalized prevention and health promotion into a concrete possibility in the near future, scholars and the Centers for Disease Control and Prevention have begun to call for U.S. health educators to develop their genomic competencies. This advocacy, however, begs the question whether health educators feel the need for further genomic training. Using an emergent design, the authors analyze qualitative data obtained from in-depth interviews with 24 health educators in the United States. Data are searched for salient, emergent themes (salience is determined by the frequency of a theme’s occurrence across interviews). Findings indicate that although the majority (78.3%) of health educators have received minimal or no genomic education, 81.0% acknowledge the importance of adding some type of training to their future professional development. Participants suggest conference presentations, workshops, and symposia (54.5%) as the most preferable approach for delivering such training. The four most frequently desired training topics include applied genetics/genomics (85.7%), basic genetics/genomics (42.9%), current and future developments in genetics/genomics (28.6%), and genetic testing and screening (19.0%). Findings from this qualitative study can become catalysts for future examinations of this topic and provide the conceptual basis for developing genomics training materials specifically for health educators.

Objective To report the challenges and lessons learned while conducting a nationwide Web-based survey of US health educators. Methods We developed a Web-based survey, entitled Health Promotion and Genetics/Genomics Survey, to assess health educators' likelihood to adopt genomic competencies into health promotion; 1924 health educators responded (adjusted response rate = 23.1%). Results This study addresses challenges identified in the electronic surveying process: population identification, sampling, instrument design, survey implementation, and data preparation/analysis. Strategies for dealing with these challenges are proposed. Conclusions This practical example contributes to the further development and refinement of guidelines and best practices for Web-based surveying of US health educators.

Background: Individuals with a family history of lung cancer have a two- to threefold increased risk for developing this disease. Family history information may be useful in lung cancer prevention and control approaches, but research is needed regarding how individuals interpret this information. This study examined associations between lung cancer family history and individuals’ risk perceptions, based on smoking status. Methods: Data were analyzed from 5,105 U.S. adult respondents to the 2005 Health Information National Trends Survey, which was conducted with a nationally representative sample. Results: In multivariate models, family history of lung cancer was positively associated with absolute and relative risk perceptions among all respondents (β = 0.60, 95% CI = 0.33–0.87 and β = 0.17, 95% CI = 0.04–0.31, respectively) and among never smokers (β = 0.40, 95% CI = 0.14–0.67 and β = 0.14, 95% CI = 0.01–0.27, respectively). However, these associations were not significant for current and former smokers. Conclusion: While perceived risk was associated with family history of lung cancer among never smokers, this was not true for other smoking status subgroups. Therefore, former and current smokers might not respond as intended to cancer prevention or cessation messages tailored based on family history. The results suggest directions for future research into how to best integrate family history information into prevention and control efforts.

Objectives. We examined US health educators’ likelihood of adopting genomic competencies—specific skills and knowledge in public health genomics—into health promotion and the factors influencing such likelihood. Methods. We developed and tested a model to assess likelihood to adopt genomic competencies. Data from 1607 health educators nationwide were collected through a Web-based survey. The model was tested through structural equation modeling. Results. Although participants in our study were not very likely to adopt genomic competencies into their practice, the data supported the proposed model. Awareness, attitudes, and self-efficacy significantly affected health educators’ likelihood to incorporate genomic competencies. The model explained 60.3% of the variance in likelihood to incorporate genomic competencies. Participants’ perceived compatibility between public health genomics and their professional and personal roles, their perceptions of genomics as complex, and the communication channels used to learn about public health genomics significantly related to genomic knowledge and attitudes. Conclusions. Because US health educators in our sample do not appear ready for their professional role in genomics, future research and public health work-force training are needed.