Attitudes Toward Cystic Fibrosis Carrier and Prenatal Testing and Utilization of Carrier Testing Among Relatives of Individuals with Cystic Fibrosis

A questionnaire and an offer of free carrier testing was mailed to 173 relatives of individuals with CF. The questionnaire addressed their knowledge of clinical and genetic aspects of CF, as well as their attitudes toward carrier testing, prenatal diagnosis, and pregnancy termination for CF. Eighty-one individuals returned the questionnaire (47%) and 50 elected carrier testing (29%). Most respondents underestimated their carrier risk (60%), but overestimated their risk to have a child with CF (63%). Most (93%) indicated they would utilize carrier testing, and 70% would use prenatal testing; however, only 7% would consider terminating a pregnancy for CF. The intention to use prenatal testing was correlated with the perceived health of the proband and whether the respondent was planning to have (more) children. The acceptability of abortion was correlated with the respondent's perceived impact or burden of CF.     

Cystic Fibrosis Prenatal Screening in Genetic Counseling Practice: Recommendations of the National Society of Genetic Counselors

For over a decade, prenatal screening for cystic fibrosis (CF) has been considered a model for the integration of genetic testing into routine medical practice. Data from pilot studies and public policy discourse have led to recommendations by some professional organizations that CF screening should be offered or made available to pregnant women and their partners, and to couples planning a pregnancy. It is crucial that genetic counselors gain thorough understanding of the complexities of CF and the implications of positive test results, so that they may serve as a reliable, educated referral base and resource for health care providers and their patients. While not all pregnant women will be referred for genetic counseling prior to CF carrier testing, genetic counselors often will be asked to counsel clients after they have a positive test result, or who are found to be at increased risk. Genetic counselors can play an important role in providing accurate and current information as well as support for patients informed decisions. These recommendations were created by a multicenter working group of genetic counselors with expertise in CF and are based on personal clinical experience, review of pertinent English language medical articles, and reports of expert committees. The recommendations should not be construed as dictating an exclusive course of management, nor does the use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care providers professional judgment based on the clinical circumstances of a particular client.     

Policy Recommendations for Carrier Testing and Predictive Testing in Childhood: A Distinction That Makes a Real Difference

The genetic testing of children raises many ethical concerns. This paper examines how five position statements from Canada, UK and USA, which present guidelines for good practice in this area produce different recommendations for carrier testing and predictive testing. We find that the genetic information generated through carrier testing is routinely presented as less serious than that generated from predictive testing. Additionally, the reproductive implications of predictive testing are also routinely erased. Consequently, the papers argue strongly against predictive testing but advise caution against carrier testing in somewhat weaker terms. We argue that these differences rest on assumptions about the status of reproduction in people’s lives and on an ethical stance that foregrounds the self over others. We propose that questioning the crude and sharp distinction between carrier and predictive testing in principle may enable practitioners and parents/families to make more nuanced decisions in practice. Parts of this work have been presented in the 1st International CESAGen Conference, London, 2004, and Genetics and Society Meetings, Wales.     

Parental reflective functioning and theory of mind acquisition: A developmental perspective

This study investigated theory of mind (ToM) development in 83 children aged 3–5 years and its associations with parental reflective functioning (PRF), using a multidimensional and developmental approach. Results showed that ToM dimensions (i.e., affective, belief-desire, and cognitive) gradually increased with age. All dimensions of PRF (i.e., prementalizing modes, certainty about mental states, and interest and curiosity in mental states) were associated with ToM dimensions, with different dimensions being differentially related to ToM, including age-related effects.     

Knowledge and Attitudes Towards Genetic Testing: A Two Year Follow-Up Study in Patients with Asthma,Diabetes Mellitus and Cardiovascular Disease

Adequate knowledge and personal attitudes towards DNA-testing are major determinants of optimal utilization of genetic testing. This study aims to (1) assess the genetic knowledge and attitude towards genetic testing of patients with asthma, diabetes mellitus type II and cardiovascular diseases, (2) determine whether their knowledge or attitude changed since 2002, and (3) investigate the predictive role of knowledge on attitude. Data were collected within the Panel of Patients with Chronic Diseases in 2002 and 2004, resulting in 398 data-pairs. Results show that factual knowledge mainly relates to associations between genes and diseases, less is known on associations between genes, chromosomes, cells and body. The perceived knowledge on DNA-testing has not increased since 2002. The attitude towards genetic testing also appeared to be rather consistent. Less perceived medical genetic knowledge and more perceived social genetic knowledge were found predictive for a more reserved attitude towards genetic testing. In conclusion, advanced developments in the field of genetics are not accompanied by increased knowledge of patients with common multi-factorial diseases. The finding that more perceived social genetic knowledge results in more reluctance can be considered an indicator for the necessity of social debates on genetic testing.     

Young adults' intention to eat healthy food: Extending the theory of planned behaviour

Abstract

The present study predicts adults' intention to eat healthily, using the theory of planned behaviour (TPB) and additive and moderating effects of role identity, group norms and group identification, derived from identity theory and self categorisation theory. A total of 735, 25 years old adults participated in a mailed questionnaire survey in 1997. The TPB explained 52% of the variance in young adults' decision to eat healthily, with perceived behavioural control and subjective norms being the strongest (β= .56, p < .001) and weakest (β = .05, p < .005) determinants, respectively. Although, role identity accounted for an additional amount of 4% of the variance in behavioral intention, past behaviour did not moderate the impact of role identity on intention, as hypothesised. Neither perceived group norm nor group identification added to the prediction of intention over and above the TPB. However, group identification was found to act as a moderator on the relation between group norm and behavioural intention in the predicted direction. The wider social context seems to play a stronger role for the formation of adults' healthy eating decisions than indicated by the TPB.     

A Practical Account of Autonomy: Why Genetic Counseling is Especially Well Suited to the Facilitation of Informed Autonomous Decision Making

In genetic counseling, facilitation of autonomous decision-making is seen as a primary aim and respect for autonomy is used to justify a nondirective counseling approach whereby clients are free to make their own choices after being given all necessary information. However in the genetic counseling literature, autonomy as a concept appears to be interpreted variably and often narrowly. We offer a practical account of autonomy that is coherent, consistent and philosophically defensible for the genetic counseling setting. At the same time we demonstrate how nondirective counseling may serve to frustrate rather than facilitate client autonomy. We suggest that promoting purposeful dialogue rather than counseling that is nondirective is more conducive to client autonomy.     

A comparison of two approaches to education about carrier testing for cystic fibrosis

We tested the efficacy of two types of educational materials for genetic counseling: a traditional information brochure and one adding a role model story. Brochures were alternated weekly at a prenatal genetics center. Subjects were asked to read the brochure and fill out a questionnaire covering demographics and variables from the health belief model (impact, barriers, motivation, susceptibility, knowledge, severity). A group of 409 pregnant women and 251 male partners participated. Study design was quasiexperimental, using a post-test only comparison group. The brochure with modeling enhanced the perception of both risk and the severity of the disease and was inversely associated with the assessment of barriers, but did not directly impact on the decision to pursue testing; only 12% chose to be tested, with no significant differences between groups. While suggestive, the study is not confirmatory and should be repeated with a more heterogenous group of women.     

Coping with Age‐related Threats to Role Identity: Older Couples and the Management of Household Money

As more couples live together into old age, difficult decisions have to be made about money matters, including the financing of late‐life care. This paper analyses in‐depth qualitative data from six older heterosexual couples, part of a wider study concerning money management in later life. Research when these cohorts were younger found that the organisation of money management within households was specialised and highly gendered, leading to substantive imbalances of power and access to financial resources, while also being core to the formation and maintenance of gendered role identities and couple identities. We find in this study that if a partner's ability to fulfil a money management role identity is threatened by later‐life issues such as poor health and cognitive decline, the other partner may try to protect that aspect of the spouse's role identity, using various covert strategies. This might be done to shore up the spouse's self‐esteem in the face of such age‐related threats to role identity, to ‘keep up appearances’ to the outside world or to maintain their identity as a couple at a time of life when there may be multiple difficulties to deal with. These findings have implications for practice and policy in the realm of money and identity management in later life. Copyright © 2013 John Wiley & Sons, Ltd.     

Personality Maturation during the Transition to Working Life: Associations with Commitment as a Possible Indicator of Social Investment

The social investment theory (SIT) proposes that personality maturation is triggered by transitions into age‐graded roles and psychological commitment to these roles. The present study examines the predictions of SIT by focusing on the transition from student life to working life. We analysed three‐wave longitudinal data and compared participants who made the transition into working life (N = 226), participants who combined education with work (N = 387), and participants who did not make the transition at all (N = 287). In contrast to the predictions of SIT, we found no differences in personality maturation between individuals who made the transition into working life and those who did this only partly or not at all. Psychological commitment to work did not explain individual differences in personality maturation for those who made the transition (partly) into working life after controlling for multiple testing. Therefore, the present study did not support the predictions of SIT. © 2019 The Authors European Journal of Personality published by John Wiley & Sons Ltd on behalf of European Association of Personality Psychology     

Assessment of the Use and Feasibility of Video to Supplement the Genetic Counseling Process: A Cancer Genetic Counseling Perspective

Cancer genetic counselors use a variety of teaching modalities for patient education. This survey of cancer genetic counselors assessed their use of educational videos and their recommendations for content of future videos. Thirty percent of respondents use videos for patient education. Cited benefits included reinforcement of information for clients and increased counselor efficiency. Of the 70% who do not use videos, predominant barriers included the perceived lack of an appropriate video, lack of space and/or equipment, and concern that videos are impersonal. Most respondents desired a video that is representative of the genetic counseling session, but emphasized the importance of using broad information. Content considered critical included the pros and cons of genetic testing, associated psychosocial implications, and genetic discrimination. The results of this exploratory study provide data relevant for the development of a cancer genetics video for patient education, and suggestions are made based on aspects of information processing and communication theories.     

主观规范对大学生志愿者志愿工作投入的影响机制研究——一个链式双重中介模型

志愿工作投入直接影响志愿服务活动运转的效果,对大学生志愿者的志愿工作投入影响机制展开研究。基于计划行为理论、自我决定理论和角色认同理论,构建了以主观规范为自变量、大学生志愿工作投入为因变量、角色认同和志愿服务激情为中介变量的一个链式双重中介模型。通过对330名大学生志愿者进行问卷调查,采用层次回归和Bootstrap检验方法对问卷数据进行模型检验。研究结果表明：主观规范对大学生志愿者志愿工作投入有正向积极的影响,这种影响是通过角色认同和志愿服务激情传递的,志愿服务激情的中介效应更强;角色认同和志愿服务激情在主观规范对志愿工作投入的影响机制中起着链式双重中介作用。研究为大学生志愿服务领域相关工作提供了理论指导。     

From Stigmatized Immigrants to Radical Right Voting: A Multilevel Study on the Role of Threat and Contact

This study examines the interplay between presence of stigmatized immigrants, threat, and intergroup contact that underlies radical right voting (voting propensity and actual district‐level vote results). On the one hand, low‐status immigrants are often stigmatized and depicted as threats. Thus, presence of stigmatized immigrants should heighten threat perceptions, thereby increasing radical right voting. On the other hand, as positive contact with stigmatized immigrants is known to reduce anti‐immigrant prejudice, it should also attenuate radical right voting. As predicted, multilevel path analyses with the Swiss Election Studies 2011 data (N = 1,736 respondents in 136 districts) revealed that the proportion of stigmatized immigrants (from former Yugoslavia and Albania) in districts heightened perceived threat. Threat perceptions, in turn, increased propensity to vote for the Swiss People's Party, the major radical right party. In contrast, experiencing positive, everyday contact with former Yugoslav and Albanian immigrants reduced voting propensity through attenuated threat perceptions. Contact and threat perceptions were also related to the actual vote through voting propensity.     

Moving From Classical Test Theory to the Evaluation of Usefulness: A Theoretical and Practical Examination of Alternative Approaches to the Development of Career Tools for Job Seekers

This article critiques the common use of principles of classical test theory (CTT) as the key means of assessing the effectiveness of career instruments for employment counseling. The authors argue that excessive reliance on CTT has hindered the development of career assessment tools that better meet the diverse and changing needs of those seeking guidance in their career choice. The authors argue for an alternative paradigm based on notions of usefulness. A computerized career tool is evaluated to illustrate the limitations of CTT and the benefit of alternative methodologies for the assessment of instruments designed to provide effective career guidance.     

Results of an Intervention for Individuals and Families with <Emphasis Type="Italic">BRCA</Emphasis> Mutations: A Model for Providing Medical Updates and Psychosocial Support Following Genetic Testing

Providing medical management updates and long-term support to families with hereditary cancer syndromes in rural areas is a challenge. To address this, we designed a one-day retreat for BRCA1/2 carriers in our region. The retreat included educational updates about medical management, genetic privacy and discrimination, and addressed psychological and family issues. Evaluations completed at the conclusion of the retreat were overwhelmingly positive with requests for a similar event in the future. The impact of this retreat on a variety of health behaviors was assessed. Eligible participants completed questionnaires before and 6 months after the retreat. Questionnaires focused on lifestyle, cancer screening and prevention practices, psychological history and distress, decision-making regarding genetic testing, and family communication issues. For individuals who completed both the pre and post retreat questionnaires, one-half made lifestyle changes and nearly two-thirds increased cancer screening, initiated chemoprevention, completed or planned to complete preventative surgery in the future. We conclude that this type of forum provides a valuable opportunity for BRCA carriers and their families to receive updated medical information, share personal experiences, provide and receive support, as well as change health behaviors.     

The Metaphysics of Thought: A Response to Fish and Macdonald

Abstract

John McDowell’s position on the metaphysics of thought combines an identity conception of truth, the view that if one thinks truly that p, then what one thinks is the fact that p, with a Tractarian conception of the world as the totality of facts. In response to the charge that it is incoherent, William Fish and Cynthia Macdonald have recently (2007, 2009, 2011) defended a novel way of developing McDowell’s position. I argue that their interesting proposal doesn't work, owing to the fact that it can accommodate neither false thought nor, it seems, certain cases of true thought.     

Gender Awareness Inventory-VA: A Measure of Ideology,Sensitivity, and Knowledge Related to Women Veterans' Health Care

Within the Veterans Health Administration, it has become increasingly important to assess health-care workers' attitudes toward and beliefs about female patients, sensitivity to the unique needs of female patients, and knowledge about women veterans and the programs and services available to them. The current study describes the development of the Gender Awareness Inventory-VA, an instrument that assesses 3 components: gender-role ideology, gender sensitivity, and knowledge among health-care staff. Data were drawn from various samples of Veterans Health Administration employees in a large geographical region (overall N > 1,100; nationally, this population includes roughly 37% minorities). In a series of psychometric inquiries, evidence for reliability and validity was established, and preliminary evidence was provided for the instrument's underlying factor structure.     

Modifying Children's Responses to Unsecured Firearms and Modifying the Keeping and Storage of Firearms in Families of Elementary School Children: A Possible Role for Child Behavior Therapy

ABSTRACT

This paper reviews the literature on young children (children under 13) at-risk of firearms injuries, and outlines potential strategies for reducing the disproportionate rate of firearms accidents among low-income children. The available evidence suggests that this problem stems from risky gun storage practices common in low-income homes keeping guns for protection, and these practices, in turn, are a response to high rates of crime victimization and fears of crime. The role that child behavior therapy could assume to reduce the risk of firearm injury to young children and other persons due to these unsafe storage practices is the primary focus of this paper.