scholarly journals Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results

2018 ◽  
Author(s):  
Meagan Rubel
Keyword(s):  
Decision Making ◽  
Genetic Testing ◽  
Expert Knowledge ◽  
Pregnancy Termination ◽  
Chromosomal Microarray ◽  
Theory Approach ◽  
Psychosocial Needs ◽  
Prenatal Genetic Testing ◽  
Factors Affecting ◽  
Uncertain Significance

To assess how participants receiving abnormal prenatal genetic testing results seek information and understand the implications of results, 27 US female patients and 12 of their male partners receiving positive prenatal microarray testing results completed semi-structured phone interviews. These interviews documented participant experiences with chromosomal microarray testing, understanding of and emotional response to receiving results, factors affecting decision-making about testing and pregnancy termination, and psychosocial needs throughout the testing process. Interview data were analyzed using a modified grounded theory approach. In the absence of certainty about the implications of results, understanding of results is shaped by biomedical expert knowledge (BEK) and cultural expert knowledge (CEK). When there is a dearth of BEK, as in the case of receiving results of uncertain significance, participants rely on CEK, including religious/spiritual beliefs, “gut instinct,” embodied knowledge, and social network informants. CEK is a powerful platform to guide understanding of prenatal genetic testing results. The utility of culturally situated expert knowledge during testing uncertainty emphasizes that decision-making occurs within discourses beyond the biomedical domain. These forms of “knowing” may be integrated into clinical consideration of efficacious patient assessment and counseling.

Factors affecting performance of prenatal genetic testing by Israeli Jewish women

2003 ◽  
Vol 120A (3) ◽  
pp. 418-422 ◽  
Author(s):  
Carron Sher ◽  
Orly Romano-Zelekha ◽  
Manfred S. Green ◽  
Tamy Shohat
Keyword(s):  
Genetic Testing ◽  
Jewish Women ◽  
Prenatal Genetic Testing ◽  
Factors Affecting ◽  
Factors Affecting Performance

scholarly journals 1152: How do distress levels affect women’s decision-making for invasive prenatal genetic testing?

2020 ◽  
Vol 222 (1) ◽  
pp. S709-S710
Author(s):  
Cassandra Heiselman ◽  
Lisa M. Pastore ◽  
Gina Milone ◽  
Jay Davis ◽  
Cheryl Dinglas ◽  
...  
Keyword(s):  
Decision Making ◽  
Genetic Testing ◽  
Prenatal Genetic Testing

scholarly journals An ecological model of adaptation to displacement: individual, cultural and community factors affecting psychosocial adjustment among Syrian refugees in Jordan

2018 ◽  
Vol 5 ◽  
Author(s):  
Ruth Wells ◽  
Catalina Lawsin ◽  
Caroline Hunt ◽  
Omar Said Youssef ◽  
Fayzeh Abujado ◽  
...  
Keyword(s):  
Psychosocial Adjustment ◽  
Ecological Model ◽  
Global Mental Health ◽  
Theory Approach ◽  
Syrian Refugees ◽  
Psychosocial Needs ◽  
Adaptive Responses ◽  
Factors Affecting ◽  
Community Factors ◽  
Potentially Traumatic Events

Background.There is a need for ecological approaches to guide global mental health programmes that can appropriately address the personal, family, social and cultural needs of displaced populations. A transactional ecological model of adaptation to displacement was developed and applied to the case of Syrian refugees living in Jordan.Methods.Syrian and Jordanian psychosocial workers (n = 29) supporting the Syrian refugee community in Jordan were interviewed in three waves (2013–2016). A grounded-theory approach was used to develop a model of key local concepts of distress. Emergent themes were compared with the ecological model, including the five ADAPT pillars identified by Silove (2013).Results.The application of the ecological concept of niche construction demonstrated how the adaptive functions of a culturally significant concept of dignity (karama) are moderated by gender and displacement. This transactional concept brought to light the adaptive capacities of many Syrian women while highlighting the ways that stigma may restrict culturally sanctioned opportunities for others, in particular men. By examining responses to potentially traumatic events at the levels of individual, family/peers, society and culture, adaptive responses to environmental change can be included in the formulation of distress. The five ADAPT pillars showed congruence with the psychosocial needs reported in the community.Conclusions.The transactional concepts in this model can help clinicians working with displaced people to consider and formulate a broader range of causal factors than is commonly included in individualistic therapy approaches. Researchers may use this model to develop testable hypotheses.

scholarly journals The Pro-Life Paradox of Pregnancy Termination and Disability Exclusion

2020 ◽  
Keyword(s):  
Decision Making ◽  
Genetic Testing ◽  
Pregnancy Termination ◽  
Disabled Persons ◽  
Termination Of Pregnancy ◽  
Unborn Child ◽  
Fetal Anomalies ◽  
Expectant Mothers ◽  
Inform Decision Making ◽  
Pro Life

The debate over the use of genetic testing to inform expectant mothers regarding fetal anomalies, with the intention of enabling her to decide whether or not to terminate pregnancy based on testing outcomes, is arguably deemed by many physicians and scientists to be major medical advancement. Proponents of testing believe that this information prevents the potentiality of lifelong suffering for of the unborn child, as well as encourages a healthier population. There are, however, scientists, geneticists, theorists, and disability advocates, who disagree with this theory. Furthermore, pro-life allies appear to take very differing stances on this topic, from opposing any termination of pregnancy, even in cases of severe disability or a likelihood of infant or maternal mortality, while some may believe abortion is acceptable under these unique circumstances, even if they oppose others. It is difficult to understand how the criteria is evaluated, particularly in cases of the former, when support and resources for disabled persons are greatly lacking, which can lead to a more challenging life, and when the stigma of bearing and raising a defective child is widespread. Thus, it is a crucial topic in women’s studies to understand when there is a pro-life paradox of disability exclusion is and how it may inform decision-making and advocacy regarding selective termination of pregnancy

Psychosocial factors affecting uptake of prenatal genetic testing: a pilot study

2013 ◽  
Vol 33 (13) ◽  
pp. 1276-1282 ◽  
Author(s):  
Monica Pivetti ◽  
Giannino Melotti ◽  
Davide Morselli ◽  
Mariangela Olivieri
Keyword(s):  
Genetic Testing ◽  
Pilot Study ◽  
Psychosocial Factors ◽  
Prenatal Genetic Testing ◽  
Factors Affecting

Psychological measures of patient’s decision-making for prenatal genetic testing

2020 ◽  
pp. 1-7
Author(s):  
Kimberly M. Herrera ◽  
Gina Milone ◽  
Jay A. Davis ◽  
Malini D. Persad ◽  
Cheryl Dinglas ◽  
...  
Keyword(s):  
Decision Making ◽  
Genetic Testing ◽  
Prenatal Genetic Testing ◽  
Psychological Measures

scholarly journals Autism Spectrum Disorders: Prenatal Genetic Testing and Abortion Decision-Making among Taiwanese Mothers of Affected Children

2020 ◽  
Vol 17 (2) ◽  
pp. 476
Author(s):  
Wei-Ju Chen ◽  
Shixi Zhao ◽  
Tse-Yang Huang ◽  
Oi-Man Kwok ◽  
Lei-Shih Chen
Keyword(s):  
Decision Making ◽  
Autism Spectrum Disorders ◽  
Genetic Testing ◽  
Structural Equation ◽  
Chinese Culture ◽  
Susceptibility Genes ◽  
Autism Spectrum ◽  
Equation Modeling ◽  
Prenatal Genetic Testing ◽  
Spectrum Disorders

With the rapid growing rate of autism spectrum disorders (ASDs), prenatal genetic testing (PGT) has been offered to detect various genomic disorders, including ASD, in Taiwan. However, disparities exist in this area, as there is limited research on factors associated with PGT utilization and relevant decision-making that may guide the regulations and ethical guidelines for culturally appropriate PGT services in Taiwan. This study proposed a comprehensively integrated theoretical framework for examining the intention to undergo PGT to detect ASD susceptibility genes and subsequent abortion decision-making among Taiwanese mothers of children affected by ASD. Survey data from 333 mothers of children with ASD in 236 elementary schools with special education services in Taiwan were collected and analyzed using structural equation modeling. Approximately two-thirds of the participants (66.6%) would undergo PGT to detect ASD susceptibility genes; more than half (53.1%) would terminate the hypothetically ASD-affected pregnancy. Abortion intention was associated with age, religion, attitudes toward PGT for detecting ASD susceptibility genes, and willingness to undergo such PGT. This study explores the potential impacts of PGT on Taiwanese society, and the findings are applicable to countries heavily influenced by Chinese culture, areas with Asian immigrants, and Western countries with such PGT services and/or research available.

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