Prevalence rates study of selected isolated non-Mendelian congenital anomalies in the Hutterite population of Alberta, 1980-2016.

A study of the prevalence rates for selected isolated non-Mendelian congenital anomalies in the Hutterite Brethren of Alberta, Canada was undertaken to further examine longitudinal data in this isolated community that was last reported in 1985 (Lowry et al., 1985), although there are numerous publications on recessive disorders (Boycott et al., 2008; Triggs-Raine et al., 2016). Cases were ascertained from the Alberta Congenital Anomaly Surveillance System for the years 1997-2016. Since our initial results showed some surprising findings in the Hutterite Brethren, such as zero cases of spina bifida, cleft lip and palate, gastroschisis, and omphalocele, and a significant excess of cases with hypospadias, we extended the study to prior years (1980-1996) for selected anomalies. For the extended study period (1980-2016), there was a significant increased prevalence of hypospadias, tetralogy of Fallot and tricuspid atresia in the Hutterite population, and although not statistically significant, zero cases of cleft lip with cleft palate, gastroschisis and omphalocele were confirmed. Further research is needed to determine the precise effects of rural environmental exposures, lifestyle factors, and genetic associations for selected multifactorial congenital anomalies.

Optimising human community sizes.

We examine community longevity as a function of group size in three historical, small scale agricultural samples. Community sizes of 50, 150 and 500 are disproportionately more common than other sizes; they also have greater longevity. These values mirror the natural layerings in hunter-gatherer societies and contemporary personal networks. In addition, a religious ideology seems to play an important role in allowing larger communities to maintain greater cohesion for longer than a strictly secular ideology does. The differences in optimal community size may reflect the demands of different ecologies, economies and social contexts, but, as yet, we have no explanation as to why these numbers seem to function socially so much more effectively than other values.

"If It Helps, It's Worth a Try": an Investigation of Perceptions and Attitudes about Genetic Counseling among Southern Manitoba Hutterites.

Few studies have explored the public's views of genetic counseling services, and even fewer focus on founder populations with high prevalence of genetic disease, such as Hutterites. The Hutterites are an Anabaptist religious group grounded in a strong Christian faith. The primary aim of this study was to assess Hutterites' views of genetic counseling services. A secondary aim was to compare their views to those obtained in a study of rural Midwestern U.S. residents (Riesgraf et al., Journal of Genetic Counseling, 24(4), 565-579, 2015). One-hundred eleven individuals from southern Manitoba Hutterite colonies completed an anonymous survey assessing familiarity with and attitudes about genetic counseling; perceptions of its purpose, scope and practice; and willingness to use genetic counseling services. Although many respondents were not familiar with genetic counseling, most had accurate perceptions and positive attitudes. For instance, mean ratings showed endorsement of trust in information provided by genetic counselors and agreement that genetic counseling aligns with their values. Logistic regression indicated reported willingness to use genetic counseling services increased if respondents: had a higher self-rated familiarity with genetic counseling; were younger; agreed with the statement: I would trust the information provided by a genetic counselor; and disagreed with the statements: Genetic counseling is only useful for a small group of people with rare diseases, and Genetic counselors help expectant parents choose the eye color of their child. Thematic analysis of comments regarding willingness to use genetic counseling services yielded themes of personal/family risk, pragmatism (genetic counseling is sensible and practical for managing health concerns), and desire to prevent genetic conditions in the Hutterite population. Comparison of the present findings to those of Riesgraf et al. suggests predictors of Hutterites' willingness to use genetic counseling are unique and culturally-based. Limited replication of Riesgraf et al. was achieved. Additional findings, practice implications and research recommendations are presented.

Health and well-being of Hutterite farmers in Alberta: Results from the Sustainable Farm Families Alberta program.

Introduction: This article describes the health and lifestyle profile of Hutterite farmers in Alberta who participated in a health literacy education program. Methods: Longitudinal quantitative and qualitative data from the sustainable farm families (SFF) Alberta program (2014-2017) were used to describe the health and lifestyle profile of Hutterites. Data were analysed using descriptive statistics and conventional and summative content analysis. Results: Four hundred and twenty-seven Hutterite men and women aged 18-75 years participated in a health literacy education program. About 50%-80% of Hutterites reported good health status, no hearing or sleeping problems, little to no body pain, fewer breathing and bladder difficulties and no constipation/diarrhoea. On average, the risk of diabetes was low (mean = 3.4) with total glucose (mean = 5.2) and cholesterol (mean = 3.5) within normal levels. Mental health outcomes such as anxiety (mean = 4.1), stress (mean = 6.7) and depression (mean = 3.1) were also within normal to mild ranges. Qualitative data showed that Hutterite farmers are committed to maintaining physical health and adopting strategies to improve mental health and lifestyle behaviours. Conclusion: Hutterites have recognisable health challenges like other rural farming communities but are aware of their physical and mental health challenges and engage in healthy lifestyle behaviours. The Hutterite tenets of living present a perfect ecological setting for sustainable health promotion intervention.

Résumé Introduction: Cet article décrit le profil de santé et de style de vie des agriculteurs huttériens de l'Alberta qui ont participé à un programme d'éducation en littératie en santé. Méthodes: Des données quantitatives et qualitatives longitudinales du programme SFF Alberta (2014 à 2017) ont été utilisées pour décrire le profil de santé et de mode de vie des Huttérites. Les données ont été analysées à l'aide de statistiques descriptives et d'une analyse de contenu conventionnelle et sommative. Résultats: Quatre cent vingt-sept hommes et femmes huttériens âgés de 18 à 75 ans ont participé à un programme d'éducation à la santé. Environ 50 à 80% des Huttériens ont signalé un bon état de santé, aucun problème d'audition ou de sommeil, peu ou pas de douleurs corporelles, moins de difficultés respiratoires et vésicales et pas de constipation/diarrhée. En moyenne, le risque de diabète était faible (moyenne = 3,4) avec une glycémie totale (moyenne = 5,2) et un taux de cholestérol (moyenne = 3,5) à des niveaux normaux. Les résultats en matière de santé mentale tels que l'anxiété (moyenne = 4,1), le stress (moyenne = 6,7) et la dépression (moyenne = 3,1) SE situaient également dans des plages normales à légères. Les données qualitatives ont montré que les agriculteurs huttérites sont déterminés à maintenir leur santé physique et à adopter des stratégies pour améliorer leur santé mentale et leurs habitudes de vie. Conclusion: Les Huttérites ont des problèmes de santé reconnaissables comme les autres communautés agricoles rurales, mais sont conscients de leurs problèmes de santé physique et mentale et adoptent des modes de vie sains. Les principes de vie huttériens présentent un cadre écologique parfait pour une intervention durable de promotion de la santé. Mots-clés: Familles d'agriculteurs durables, santé physique, santé mentale, Huttérites, promotion de la santé.

Attitudes toward genetic testing of Amish, Mennonite, and Hutterite families with cystic fibrosis.

BACKGROUND: We had the unique opportunity to study families with cystic fibrosis (CF) from an interrelated Amish-Mennonite kindred and from an isolated Hutterite kindred. METHODS: While obtaining blood for DNA linkage analysis to help find the CF gene, we asked family members to answer a questionnaire about attitudes and feelings toward genetic testing. The questionnaire was also administered to families receiving care at the University of Rochester. After DNA-based CF carrier testing was developed, we asked the families whether they wanted to know the results. RESULTS: Each cultural group felt differently about many issues. Between 31% and 78% approved of CF-carrier testing and 14% to 78% approved of prenatal diagnosis. The majority (59%) of Hutterite parents and siblings were opposed to carriers marrying carriers and most (82%) of the CF families wanted to know the results of carrier testing. CONCLUSIONS: Cultural differences need to be understood before genetic services are offered. Also, most CF mutations and their clinical correlates (phenotypes) will need to be defined. There are as few as three CF mutations in the Hutterite population. It will be possible to offer them the option to choose accurate genetic counseling. It will be difficult to offer genetic services to other populations with more heterogeneous attitudes and many more identified and yet-to-be-identified CF mutations.