Juggling roles and expectations: dilemmas faced by women talking to relatives about cancer and genetic testing

Health professionals do not inform their patients’ kin about BRCA1/2 test results or genetic testing without their written consent. Thus, the onus is on women attending genetic counselling to talk to relatives about the family history and their potential increased risk. This communication process within the family is largely unexplored and provides the focus of the present study. Fifteen healthy women attending a genetics clinic for predictive testing were interviewed prior to receiving their test result and again 6 months later. A grounded theory approach was used. Findings illustrate the dilemmas women faced in juggling social roles and expectations, which had an impact on communication within the family in the context of predictive genetic testing. Tensions between responsibilities towards themselves and others and their fulfilment of social roles had an impact on who women informed and on how they did so. These factors should be considered when assigning patients the role of information provider.     

The Impact of Test Outcome Certainty on Interest in Genetic Testing Among College Women

Osteoporosis and hemochromatosis are both late-onset preventable diseases, but future genetic tests for these conditions are likely to differ in their predictive abilities. To determine whether interest in a specific genetic test for hemochromatosis would be higher than interest in a theoretical test for osteoporosis susceptibility, undergraduate women at the University of Cincinnati (N = 181) were surveyed regarding their interest in genetic testing for these conditions. The clinical features of the diseases and the limits of a genetic test for each were described. Sixty-three percent of the total population was interested in genetic testing with a trend toward higher interest in the osteoporosis group. Disease familiarity, perceived disease severity, and perceived risk for disease appear to be more important predictors of genetic test acceptance than diagnostic specificity. Suggested implications for the development of population genetic screening tests are discussed.     

Affective and cognitive attitudes,uncertainty avoidance and intention to obtain genetic testing: An extension of the Theory of Planned Behaviour

To ensure successful implementation of genetic screening and counselling according to patients best interests, the attitudes and motives of the public are important to consider. The aim of this study was to apply a theoretical framework in order to investigate which individual and disease characteristics might facilitate the uptake of genetic testing. A questionnaire using an extended version of the Theory of Planned Behaviour was developed to assess the predictive value of affective and cognitive expected outcomes, subjective norms, perceived control and uncertainty avoidance on the intention to undergo genetic testing. In addition to these individual characteristics, the predictive power of two disease characteristics was investigated by systematically varying the diseases fatality and penetrance (i.e. the probability of getting ill in case one is a mutation carrier). This resulted in four versions of the questionnaire which was mailed to a random sample of 2400 Norwegians. Results showed genetic test interest to be quite high, and to vary depending on the characteristics of the disease, with participants preferring tests for highly penetrant diseases. The most important individual predictor was uncertainty avoidance.     

Attitude towards technology,social media usage and grade‐point average as predictors of global citizenship identification in Filipino University Students

We examine the influence of a positive attitude towards technology, number of social media network memberships and grade‐point average (GPA) on global citizenship identification antecedents and outcomes. Students (N = 3628) at a university in the Philippines completed a survey assessing the above constructs. The results showed that attitude towards technology, number of social network site memberships and GPA‐predicted global citizenship identification, and subsequent prosocial outcomes (e.g. intergroup helping, responsibility to act for the betterment of the world), through the perception that valued others prescribe a global citizen identity (normative environment) and perceived knowledge of the world and felt interconnectedness with others (global awareness). The results highlight the associations between technology and academic performance with a global identity and associated values.     

Risk perceptions,worry, and attitudes about genetic testing for breast cancer susceptibility

This study assessed the unique associations of risk perceptions and worry with attitudes about genetic testing for breast cancer susceptibility. Women (general practitioner clinic attenders, university students, and first-degree relatives of breast cancer survivors; N?=?303) read information about genetic testing and completed measures assessing perceived cancer risk, cancer worry, and genetic testing attitudes and beliefs. Worry was associated with greater interest in genetic testing, stronger beliefs that testing has detrimental emotional consequences, and positive beliefs about benefits of testing and risk-reducing surgeries. Perceived risk was unrelated to interest and associated with more skeptical beliefs about emotional consequences and benefits of testing and risk-reducing surgeries. At low worry levels, testing interest increased with more positive beliefs about testing benefits; at high worry levels, interest was high regardless of benefits beliefs. The findings support Leventhal's Common-Sense Model of self-regulation delineating interactive influences of risk-related cognitions and emotions on information processing and behavior.     

Attitudes of Health Care Trainees About Genetics and Disability: Issues of Access, Health Care Communication, and Decision Making

Prior studies suggest that knowledge and attitudes of health care professionals influence patient communication and medical decision making. To study this dynamic in the context of genetic disability, we developed a survey on health professionals' attitudes regarding disability and genetic screening and pilot-tested it on a sample of medical students, residents, and genetic counseling students (N = 85). Despite minimal experience with disability or genetics, most respondents reported feeling comfortable dealing with genetics (59%) and disability (75%). The majority felt that disability caused significant suffering for both the person (51%) and family (64%), and that research should be directed toward preventing genetic disability (62%). Similar to prior literature, perceived Quality of Life was most often based on degrees of physical and cognitive functioning, pain, and social support. However, differences were found between genetic counseling trainees and other medical trainees in their relative emphasis of social versus medical issues in questions of disability and genetic testing, and these response patterns were associated with differences in the groups' priorities for offering information about social resources. Respondents agreed that access to genetic testing and information is personal and that testing should be available upon request for oneself (68%) and to a lesser degree for one's fetus (55%) or child (41%). However, the same individuals frequently stated that society should regulate access to such technologies. Although most felt that the patient and professional should jointly make such decisions on a case-by-case basis, it was also seen as appropriate for the health care professional to occasionally decline genetic testing. It seems apparent that training and experience influence knowledge and attitudes. Therefore, it is critical to document knowledge and attitudes of various health care providers and trainees, including differences between various specialties, to improve educational interventions geared to this area.     

Psychosocial Impact of Predictive Testing for Illness on Children and Families: Challenges for a New Millennium

Predictive testing for adult- and child-onset diseases is becoming widely available. The identification of individuals prone to develop certain illnesses is often medically advantageous in that it may afford opportunities to engage in risk reduction behaviors to detect or delay disease onset. However, sometimes the knowledge gained from these tests can be ambiguous, generate distress, and potentially affect several generations of family members. Overall, these factors create a challenging set of circumstances for persons considering genetic and other forms of predictive testing, particularly parents and children. In this article, we (1) address conceptual issues involved in determining the impact of predictive testing on child and family well-being, (2) review empirical data on this topic, and (3) provide a case example to illustrate these findings. Recommendations are made for additional psychological research on child- and family-focused outcomes associated with participation in testing, highlighting their clinical implications.     

Intention to communicate BRCA1/BRCA2 genetic test results to the family.

Guided by the theory of planned behavior, this analysis explores the communication skills of women who had genetic testing for BRCA1 and BRCA2. The key outcome was intention to tell test results to adult first-degree relatives. The theory predicts that global and specific attitudes, global and specific perceived social norms, and perceived control will influence the communication of genetic test results. A logistic regression model revealed that global attitude (p < .05), specific social influence (p < .01), and perceived control (p < .05) were significant predictors of intention to tell. When gender and generation of relatives were added to the regression, participants were more likely to convey genetic test results to female than to male relatives (p < .05) and were also more likely to communicate test results to children (p < .01) or siblings (p < .05) than to parents. However, this association depended on knowing the relative's opinion of genetic testing. Intention to tell was lowest among participants who did not know their relative's opinion. These results extend the theory of planned behavior by showing that gender and generation influence intention when the relative's opinion is unknown.     

Affective and cognitive attitudes, uncertainty avoidance and intention to obtain genetic testing: an extension of the Theory of Planned Behaviour

To ensure successful implementation of genetic screening and counselling according to patients best interests, the attitudes and motives of the public are important to consider. The aim of this study was to apply a theoretical framework in order to investigate which individual and disease characteristics might facilitate the uptake of genetic testing. A questionnaire using an extended version of the Theory of Planned Behaviour was developed to assess the predictive value of affective and cognitive expected outcomes, subjective norms, perceived control and uncertainty avoidance on the intention to undergo genetic testing. In addition to these individual characteristics, the predictive power of two disease characteristics was investigated by systematically varying the diseases fatality and penetrance (i.e. the probability of getting ill in case one is a mutation carrier). This resulted in four versions of the questionnaire which was mailed to a random sample of 2400 Norwegians. Results showed genetic test interest to be quite high, and to vary depending on the characteristics of the disease, with participants preferring tests for highly penetrant diseases. The most important individual predictor was uncertainty avoidance.     

Impact of Panel Gene Testing for Hereditary Breast and Ovarian Cancer on Patients

Recent advances in next generation sequencing have enabled panel gene testing, or simultaneous testing for mutations in multiple genes for a clinical condition. With more extensive and widespread genetic testing, there will be increased detection of genes with moderate penetrance without established clinical guidelines and of variants of uncertain significance (VUS), or genetic variants unknown to either be disease-causing or benign. This study surveyed 232 patients who underwent genetic counseling for hereditary breast and ovarian cancer to examine the impact of panel gene testing on psychological outcomes, patient understanding, and utilization of genetic information. The survey used standardized instruments including the Impact of Event Scale (IES), Multidimensional Impact of Cancer Risk Assessment (MICRA), Satisfaction with Decision Instrument (SWD), Ambiguity Tolerance Scale (AT-20), genetics knowledge, and utilization of genetic test results. Study results suggested that unaffected individuals with a family history of breast or ovarian cancer who received positive results were most significantly impacted by intrusive thoughts, avoidance, and distress. However, scores were also modestly elevated among unaffected patients with a family history of breast and ovarian cancer who received VUS, highlighting the impact of ambiguous results that are frequent among patients undergoing genetic testing with large panels of genes. Potential risk factors for increased genetic testing-specific distress in this study included younger age, black or African American race, Hispanic origin, lower education level, and lower genetic knowledge and highlight the need for developing strategies to provide effective counseling and education to these communities, particularly when genetic testing utilizes gene panels that more commonly return VUS. More detailed pre-test education and counseling may help patients appreciate the probability of various types of test results and how results would be used clinically, and allow them to make more informed decisions about the type of genetic testing to select.     

工作-家庭中心性与延迟退休态度的关系研究

延迟退休态度是影响新退休政策推行的重要社会心理因素。本研究采用《延迟退休态度问卷》等工具,抽取450名临近退休员工,考察工作-家庭中心性与延迟退休态度的关系以及工作投入、组织支持感在其二者关系上的作用机制。研究发现：（1）临近退休员工对延迟退休的态度较为消极。（2）低组织支持感条件下,工作投入在工作-家庭中心性与延迟退休态度之间起到完全中介作用。低组织支持感不利于缓解家庭中心性员工对延迟退休的消极态度。（3）高价值认同条件下,家庭中心性与工作投入、延迟退休态度的正向关系弱化。给予员工高价值认同可以提升对延迟退休的积极态度。高关心利益也可缓解家庭中心性员工对延迟退休的消极态度。     

Facilitating Family Communication About Predictive Genetic Testing: Probands’ Perceptions

The responsibility of informing relatives that predictive genetic testing is available often falls to the proband. Support is required during this process, however the perceived utility of genetic counseling and other strategies to facilitate communication have not been explored. We investigated the experiences of 12 individuals with hereditary nonpolyposis colorectal cancer (HNPCC) in a semistructured telephone interview. Respondents informed their immediate family about the availability of genetic testing, however many more-distant relatives were not directly informed. Respondents were mostly satisfied with the way they told family members about testing and had mixed views about the usefulness of genetic counseling. Gender differences were observed, with most men expressing a need for guidance or support in communicating to relatives. Letters and booklets were thought to enhance the quality of information but the provision of further aids is unlikely to increase the number of relatives made aware of predictive testing by the proband.     

Risk perceptions, worry, and attitudes about genetic testing for breast cancer susceptibility

This study assessed the unique associations of risk perceptions and worry with attitudes about genetic testing for breast cancer susceptibility. Women (general practitioner clinic attenders, university students, and first-degree relatives of breast cancer survivors; N?=?303) read information about genetic testing and completed measures assessing perceived cancer risk, cancer worry, and genetic testing attitudes and beliefs. Worry was associated with greater interest in genetic testing, stronger beliefs that testing has detrimental emotional consequences, and positive beliefs about benefits of testing and risk-reducing surgeries. Perceived risk was unrelated to interest and associated with more skeptical beliefs about emotional consequences and benefits of testing and risk-reducing surgeries. At low worry levels, testing interest increased with more positive beliefs about testing benefits; at high worry levels, interest was high regardless of benefits beliefs. The findings support Leventhal's Common-Sense Model of self-regulation delineating interactive influences of risk-related cognitions and emotions on information processing and behavior.     

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.     

Racial-Ethnic Differences in Genetic Amniocentesis Uptake

The objective of this study was to determine the role of health beliefs in genetic amniocentesis acceptance in a diverse racial-ethnic population. Participants completed a previously-validated questionnaire consisting of three sections: (1) demographics, (2) amniocentesis knowledge, and (3) health beliefs, which assessed perceived susceptibility, seriousness of potential impact, benefits of testing, and barriers to testing. The results showed that Hispanic women were less likely to accept amniocentesis (51.5% vs. Caucasian 82.8%, African American 82.9%, Asian 82.8%). Education level was the only demographic factor higher among acceptors. Women who accepted amniocentesis had higher perceived seriousness, susceptibility, and benefits HBM scores and higher knowledge scores than women who declined. HBM scores and knowledge predicted the amniocentesis decision correctly 91.5% of the time. Individual health beliefs and knowledge play a greater role in genetic amniocentesis acceptance than do demographic factors such as race-ethnicity.     

Parkinson’s Disease: Patients’ Knowledge,Attitudes, and Interest in Genetic Counseling

The objective of this study was to assess the genetics knowledge of patients with Parkinson’s disease (PD), and to explore their attitudes on genetic testing and interest in genetic counseling. We surveyed 158 patients from the University of Maryland Parkinson’s Disease and Movement Disorders Center. Patients averaged a score of 63% on general genetics knowledge and 73% on PD genetics knowledge. Participants had an overall positive attitude toward genetic testing: 80% believed that the use of genetic tests among people should be promoted, and 83% would undertake genetic test for PD if it was available. Patients reported a high interest to discuss the benefits, risks, and impacts of genetic testing for PD (mean sum score?=?26, range?=?9–35), and 43% patients expressed interest in meeting with a genetic counselor. Multivariate regression analysis showed that patients who had more positive attitudes toward genetic testing for PD were more interested in meeting with a genetic counselor (β?=?0.6, p?<?0.001). This study is the first to demonstrate an interest in genetic counseling among patients with PD. Our findings demonstrate a new niche for genetic counselors to support patients in clarifying gaps or misconceptions in knowledge about PD genetics as well as the possible risks, benefits, and limitations of genetic testing.     

Modelling decisions to undergo genetic testing for susceptibility to common health conditions: An ancillary study of the Multiplex Initiative

New genetic tests reveal risks for multiple conditions simultaneously, although little is understood about the psychological factors that affect testing uptake. We assessed a conceptual model called the multiplex genetic testing model (MGTM) using structural equation modelling. The MGTM delineates worry, perceived severity, perceived risk, response efficacy and attitudes towards testing as predictors of intentions and behaviour. Participants were 270 healthy insured adults aged 25–40 from the Multiplex Initiative conducted within a health care system in Detroit, MI, USA. Participants were offered a genetic test that assessed risk for eight common health conditions. Confirmatory factor analysis revealed that worry, perceived risk and severity clustered into two disease domains: cancer or metabolic conditions. Only perceived severity of metabolic conditions was correlated with general response efficacy (β?=?0.13, p<0.05), which predicted general attitudes towards testing (β?=?0.24, p<0.01). Consistent with our hypothesised model, attitudes towards testing were the strongest predictors of intentions to undergo testing (β?=?0.49, p<0.01), which in turn predicted testing uptake (OR 17.7, β?=?0.97, p<0.01). The MGTM explained a striking 48% of the variance in intentions and 94% of the variation in uptake. These findings support use of the MGTM to explain psychological predictors of testing for multiple health conditions.     

Prenatal Genetic Testing: An Investigation of Determining Factors Affecting the Decision-Making Process

Despite the increase in popularity of prenatal genetic testing, relatively little is known about the role psychological factors play in the decision-making process. In this analogue study, a sample of Italian female university students was used to investigate determining factors that predict the intention of undergoing prenatal genetic testing. Structural Equation Modelling was used to describe the dynamic interplay between knowledge, beliefs, attitudes and health-related behaviour such as prenatal genetic testing. Following the Theory of Reasoned Action, three dimensions predicted the intention to undergo prenatal genetic testing: the need for more scientific information, a positive attitude towards genetic testing, and the inclination to terminate pregnancy after receiving a positive test result. Results showed that less religious women tended to be more in favour of prenatal tests and in undertaking such tests. This preliminary study provides genetic counsellors and policy makers with a clearer picture of their clients’ motives and attitudes behind the decision-making process of prenatal genetic testing, contributing to improving both the communication process between counsellors and their clients and the organization of genetic services.     

Computerized hypertextual strategy and personal construction of meaning

The aim of this study is to provide information about the effects of strategic training in the area of social sciences (1) on the real level, as well as perceived competence in terms of the students' skills to select, organise and produce information; and (2) on their attitude and motivation towards working in this area of the curriculum. 107 students took part in this study, 57 of whom were the control group and 50 the experimental one. They were all enrolled in the third year of secondary school (9th year). The teachers and students who took part in this experience followed an on-line course to manage the strategy for approximately three months. Subsequently, the teacher introduced the tool in class, applying it both from a conceptual and a procedural point of view. The results show that the strategic training implemented in this study greatly improved written understanding procedures (both literal and inferential), increased perceived competence to manage internal information (selection, organization, and elaboration), and generated positive changes in terms of students' attitude and motivation towards working in the area of social sciences.     

Processes of Social Influence on Sampling Behavior: The Effect of Other's Positive Attitude and Receiver's Prior Experience

Studies about attitude formation have pointed out the importance of sampling behavior. When thinking about actual social interaction scenes, it may be better to consider them as attitude-updating processes between those who have already formed attitudes based on some experience. Sixty-five participants took part in the experiment, in which the other's positive attitude and the participant's own prior experience were manipulated. After participants had been presented five types of puzzles (experience: direct vs. indirect), which had been made to improve analytic ability, their attitudes towards the puzzles were measured (“pre attitude”). They were shown the other's positive attitude (inconsistent vs. consistent), and they were given 10 min of free time before “testing on their analytic ability.” The amount of time spent on each puzzle was recorded to index sampling behavior and the attitudes towards the puzzles were measured after the free time (“post attitude”). The results of analyses showed that the other's positive attitude increased sampling behavior when the participant's attitude was positive (first-ranked) and negative (fifth-ranked), and that prior experience and sampling contributed to attitude change for the first-ranked puzzle. Those who had had direct experience and those who had spent more time sampling this puzzle tended to maintain their previous positive attitude. The potential boundary conditions of social influence on sampling behavior are discussed.