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  • 1
    Online Resource
    Online Resource
    Exploring the Public Understanding of Basic Genetic Concepts
    Wiley ; 2004
    In:  Journal of Genetic Counseling Vol. 13, No. 4 ( 2004-08), p. 305-320
    Details
    In: Journal of Genetic Counseling, Wiley, Vol. 13, No. 4 ( 2004-08), p. 305-320
    Abstract: It is predicted that the rapid acquisition of new genetic knowledge and related applications during the next decade will have significant implications for virtually all members of society. Currently, most people get exposed to information about genes and genetics only through stories publicized in the media. We sought to understand how individuals in the general population used and understood the concepts of “genetics” and “genes.” During in‐depth one‐on‐one telephone interviews with adults in the United States, we asked questions exploring their basic understanding of these terms, as well as their belief as to the location of genes in the human body. A wide range of responses was received. Despite conversational familiarity with genetic terminology, many noted frustration or were hesitant when trying to answer these questions. In addition, some responses reflected a lack of understanding about basic genetic science that may have significant implications for broader public education measures in genetic literacy, genetic counseling, public health practices, and even routine health care.
    Type of Medium: Online Resource
    ISSN: 1059-7700 , 1573-3599
    URL: Article
    DOI: 10.1023/B:JOGC.0000035524.66944.6d
    Language: English
    Publisher: Wiley
    Publication Date: 2004
    detail.hit.zdb_id: 2016899-8
    SSG: 12
    SSG: 5,2
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  • 2
    Online Resource
    Online Resource
    Graduate training during the COVID‐19 pandemic: North American genetic counseling students' challenges, intolerance of uncertainty, and psychological well‐being
    Wiley ; 2021
    In:  Journal of Genetic Counseling Vol. 30, No. 5 ( 2021-10), p. 1325-1335
    Details
    In: Journal of Genetic Counseling, Wiley, Vol. 30, No. 5 ( 2021-10), p. 1325-1335
    Abstract: The COVID‐19 pandemic has upended genetic counseling (GC) graduate students’ lives, as they have been forced to transition, manage, and acclimate to life during a pandemic. The current study is a first step in understanding their lived experiences during this historic, global event. We investigated academic and personal challenges, intolerance of uncertainty, and psychological well‐being of GC students ( n  = 248) who trained during the pandemic (GC‐COV cohort) and those who did not (GC‐NoCOV cohort). Participants completed an online survey (July–September 2020) that used validated measures of Intolerance of Uncertainty and Psychological Well‐Being. To assess the academic and personal challenges students experienced during GC graduate training, we developed a 43‐item measure. Principal axis factoring of the items revealed categories of challenges related to the following: Academic & Professional Development, Self‐Regulation & Resilience, Institutional & Program Leadership, and Financial Stability. There was no cohort difference in Psychological Well‐Being. Linear mixed‐effects modeling showed significant cohort differences in challenges. Multiple linear regression analyses revealed that the GC‐COV cohort's Psychological Well‐Being was statistically significantly predicted by Institutional & Program Leadership challenges ( p  = .029), Self‐Regulation & Resilience challenges ( p  = .013), and Intolerance of Uncertainty ( p  = .010). For the GC‐NoCOV cohort, the statistically significant predictor of Psychological Well‐Being was Self‐Regulation & Resilience challenges ( p  = .029). Our findings demonstrate that GC students training during the COVID‐19 pandemic have experienced various personal, academic, and psychological disruptions and highlight a need to develop resources and implement interventions supporting students’ academic development and psychological well‐being.
    Type of Medium: Online Resource
    ISSN: 1059-7700 , 1573-3599
    URL: Article
    DOI: 10.1002/jgc4.1501
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 2016899-8
    SSG: 12
    SSG: 5,2
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  • 3
    Online Resource
    Online Resource
    Non‐invasive prenatal screening for trisomy 21: Consumers' perspectives
    Wiley ; 2016
    In:  American Journal of Medical Genetics Part A Vol. 170, No. 2 ( 2016-02), p. 375-385
    Details
    In: American Journal of Medical Genetics Part A, Wiley, Vol. 170, No. 2 ( 2016-02), p. 375-385
    Abstract: Non‐invasive prenatal screening (NIPS) has the potential to dramatically increase the prenatal detection rate of Down syndrome because of improvements in safety and accuracy over existing tests. There is concern that NIPS could lead to more negative attitudes towards Down syndrome and less support for individuals with Down syndrome. To assess the impact of NIPS on support for prenatal testing, decision‐making about testing, and beliefs or attitudes about Down syndrome, we performed an Internet‐based experiment using adults (N = 1,789) recruited through Amazon Mechanical Turk. Participants were randomly assigned to read a mock news article about NIPS, a mock news article about amniocentesis, or no article. The content in the two articles varied only in their descriptions of the test characteristics. Participants then answered questions about their support for testing, hypothetical testing decision, and beliefs and attitudes about Down syndrome. Reading the mock NIPS news article predicted increased hypothetical test uptake. In addition, the NIPS article group also agreed more strongly that pregnant women, in general, should utilize prenatal testing. We also found that the more strongly participants supported prenatal testing for pregnant women, the less favorable their attitudes towards individuals with Down syndrome; providing some evidence that NIPS may indirectly result in more negative perceptions of individuals with this diagnosis. © 2015 Wiley Periodicals, Inc.
    Type of Medium: Online Resource
    ISSN: 1552-4825 , 1552-4833
    URL: Issue
    URL: Article
    DOI: 10.1002/ajmg.a.v170.2
    DOI: 10.1002/ajmg.a.37460
    Language: English
    Publisher: Wiley
    Publication Date: 2016
    detail.hit.zdb_id: 1493479-6
    SSG: 12
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  • 4
    Online Resource
    Online Resource
    Quality of Life and Autonomy in Emerging Adults with Early‐Onset Neuromuscular Disorders
    Wiley ; 2012
    In:  Journal of Genetic Counseling Vol. 21, No. 5 ( 2012-10), p. 713-725
    Details
    In: Journal of Genetic Counseling, Wiley, Vol. 21, No. 5 ( 2012-10), p. 713-725
    Abstract: Emerging adulthood is an important period in the development of one's identity and autonomy. The ways in which identity and autonomy are viewed by emerging adults and how they impact quality of life (QoL) in individuals with early‐onset neuromuscular conditions is not yet known. This study focused on understanding and exploring relationships between self‐perceptions of emerging adulthood, autonomy, and QoL. Five previously validated measures were incorporated into an online survey and distributed to young adults with early‐onset neuromuscular conditions and unaffected controls. Topics explored included individuals’ views regarding their overall QoL, disease‐specific QoL, components of emerging adulthood, and autonomy. We found that a sense of higher disease impact was associated with a lower Overall General QoL. Additionally, perceptions of key autonomy factors “negativity” and “instability” were uniquely associated with Overall General QoL in the case group as compared to controls, whereas “attitudinal autonomy” (attaining the ability to plan and follow through with goals) was important to this age group regardless of health status. The specific factors of emerging adulthood and autonomy that were significantly correlated with Overall General QoL can be used for developing targeted counseling and interventions to improve QoL for individuals and their families.
    Type of Medium: Online Resource
    ISSN: 1059-7700 , 1573-3599
    URL: Article
    DOI: 10.1007/s10897-012-9492-z
    Language: English
    Publisher: Wiley
    Publication Date: 2012
    detail.hit.zdb_id: 2016899-8
    SSG: 12
    SSG: 5,2
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  • 5
    Online Resource
    Online Resource
    Family Communication in a Population at Risk for Hypertrophic Cardiomyopathy
    Wiley ; 2015
    In:  Journal of Genetic Counseling Vol. 24, No. 2 ( 2015-04), p. 336-348
    Details
    In: Journal of Genetic Counseling, Wiley, Vol. 24, No. 2 ( 2015-04), p. 336-348
    Abstract: Encouraging family communication is an integral component of genetic counseling; therefore, we sought to identify factors impacting communication to family members at risk for Hypertrophic Cardiomyopathy (HCM). Participants ( N  = 383) completed an online survey assessing: 1) demographics (gender, genetic test results, HCM family history, and disease severity); 2) illness representations; 3) family functioning and cohesiveness; 4) coping styles; 5) comprehension of HCM autosomal dominant inheritance; and 6) communication of HCM risk information to at‐risk relatives. Participants were a national sample of individuals with HCM, recruited through the Hypertrophic Cardiomyopathy Association. Data from 183 participants were analyzed using a logistic regression analysis, with family communication as a dichotomous dependent variable. We found that female gender and higher comprehension of autosomal dominant inheritance were significant predictors of participants’ communication of HCM risk information to all their siblings and children. Our results suggest that utilizing interventions that promote patient comprehension (e.g., a teaching‐focused model of genetic counseling) are important and may positively impact family communication within families with HCM.
    Type of Medium: Online Resource
    ISSN: 1059-7700 , 1573-3599
    URL: Article
    DOI: 10.1007/s10897-014-9774-8
    Language: English
    Publisher: Wiley
    Publication Date: 2015
    detail.hit.zdb_id: 2016899-8
    SSG: 12
    SSG: 5,2
    Location Call Number Limitation Availability
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