Patients’ Attitudes Towards Disclosure of Genetic Test Results to Family Members: The Impact of Patients’ Sociodemographic Background and Counseling Experience

Many factors predict the intention to disclose genetic information to relatives. The article examines the impact of patients’ socio-demographic factors on their intention to disclose genetic testing results to their relatives. Data were collected in eight genetic clinics in Israel. Patients were requested to fill in a questionnaire after counseling. A convenience sample of 564 participants who visited these clinics was collected for a response rate of 85 %. Of them, 282 participants came for susceptibility testing for hereditary cancers (cancer group), and 282 for genetic screening tests (prenatal group). In the cancer group, being secular and having more years of education correlated positively with the intention to disclose test results to relatives. In the prenatal group, being married and female correlated positively with the intention to disclose. In the cancer group, being religious and with less years of education correlated positively with the view that the clinician should deliver the results to the family. In the prenatal group, being male and unmarried correlated positively with this belief. In both groups, being of young age correlated with the perception that genetic information is private. Varied sociodemographic factors affect the intention to inform family members. Thus, knowing the social background of patients will shed light on people’s attitudes to genetic information and will help clinicians provide effective counseling in discussions with patients about the implications of test results for relatives.     

Jewish identity and intentions to obtain breast cancer screening

This study explored the associations between 2 dimensions of Jewish identity (cultural identification and religious practice) and intentions to perform breast cancer screening. Ashkenazi Jewish women (N = 220) completed surveys as part of an ongoing study of breast cancer risk counseling. Multiple regressions examined the relationships between the 2 identity measures and intention to follow routine recommendations for mammography, intention to perform monthly breast self-exam, and interest in genetic testing for breast cancer susceptibility. Cultural identity positively predicted interest in testing, whereas religious identity was inversely related. Religious identity was a significant predictor of intention to adhere to mammography recommendations. Findings show that culture and religion, although correlated, may have different associations with health attitudes.     

Consumers’ Desire towards Current and Prospective Reproductive Genetic Testing

As our knowledge and abilities in molecular genetics continues to expand, so does our ability to detect certain conditions/traits prenatally; however, it is unknown if this increase in scientific ability will be utilized by the consumers of genetic services. Our study gauges the consumers’ opinion towards reproductive testing for diseases and enhancements. Prior to their initial visit with a genetic counselor, patients were asked to participate in a survey. These consumers were asked to indicate traits and conditions for which they would choose reproductive genetic testing. The majority of respondents would elect to have prenatal genetic testing for mental retardation (75%), deafness (54%), blindness (56%), heart disease (52%), and cancer (51%). Our results indicated that 49.3% would choose testing for a condition that resulted in death by 5 years of age, whereas only 41.1%, 24.9%, and 19% would choose testing for conditions that results in death by 20, 40, and 50 years of age, respectively. Most respondents did not desire testing for enhancements (e.g. 13% would choose testing for superior intelligence). Our study suggests that consumers desire more reproductive genetic testing than what is currently offered; however, their selection of tests suggests self-imposed limits on testing.     

Participation in Breast Cancer Genetic Counseling: The Influence of Educational Level, Ethnic Background, and Risk Perception

Genetic counseling has been suggested as a means of providing information and support to women with a family history of breast cancer. Yet women who undergo cancer genetic counseling in the United States generally consist of only a subset of those at risk, namely well-educated, upper-middle class, European American and Jewish women. We report outcomes from a study that provided a unique opportunity to determine whether women of African American, European American, Native American, or Ashkenazi Jewish ancestry have varying interest in having cancer genetic counseling. The study offered a genetic counseling session to 97 women with a family history of breast cancer who were participating in a larger interview study designed to assess attitudes toward genetic testing for breast cancer. The study offered genetic counseling free of charge to all study participants with a family history of breast cancer, removing the potential barriers of cost, the need for a physician referral, and lack of awareness of genetic counseling. Fifty women out of the 97 women offered genetic counseling (52%) accepted the offer by completing a session. Those who accepted genetic counseling had a higher educational level, a higher perceived risk of breast cancer, and were more likely to expect a positive BRCA1 or BRCA2 genetic test if they were to undergo genetic testing. When controlling for education level, there was no correlation between the participants' ethnic background and acceptance of a genetic counseling session. Outreach efforts to minority populations may increase awareness of the availability of genetic counseling and may facilitate participation by such populations.     

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.     

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.     

Cancer Risk Assessment and Genetic Counseling in an Academic Medical Center: Consultands' Satisfaction, Knowledge, and Behavior in the First Year

In 1995, we formally established a multifaceted cancer genetics program of clinical services, research, and education at a general academic medical center. In the first year, 58 families, mostly physician referred, received cancer risk assessment and genetic counseling for a family and/or medical history of cancer. The primary reasons for seeking consultation were to determine their risk or their offspring's risk for developing certain cancers and to inquire about the availability of DNA testing for predisposition to breast, ovarian, or colon cancers. To assess the level of satisfaction with program services, 51 consultands (22% with a personal history of cancer) were interviewed independently by telephone 3–12 months after the session. One goal of the survey was to improve program service. Ninety percent of respondents reported that the consultation was worth their time and money. Forty-two percent stated that their anxiety related to their cancer risk had decreased following counseling and 56% indicated no change. Recall of exact numerical risk was poor and one-third could not remember hearing any risk estimate. More respondents would recommend the service to friends (90%) than to family members (75%). Overall, the service was positively received by the majority of patients.     

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.     

Risky Business: Risk Perception and the Use of Medical Services among Customers of DTC Personal Genetic Testing

Direct-to-consumer genetic testing has generated speculation about how customers will interpret results and how these interpretations will influence healthcare use and behavior; however, few empirical data on these topics exist. We conducted an online survey of DTC customers of 23andMe, deCODEme, and Navigenics to begin to address these questions. Random samples of U.S. DTC customers were invited to participate. Survey topics included demographics, perceptions of two sample DTC results, and health behaviors following DTC testing. Of 3,167 DTC customers invited, 33% (n?=?1,048) completed the survey. Forty-three percent of respondents had sought additional information about a health condition tested; 28% had discussed their results with a healthcare professional; and 9% had followed up with additional lab tests. Sixteen percent of respondents had changed a medication or supplement regimen, and one-third said they were being more careful about their diet. Many of these health-related behaviors were significantly associated with responses to a question that asked how participants would perceive their colon cancer risk (as low, moderate, or high) if they received a test result showing an 11% lifetime risk, as compared to 5% risk in the general population. Respondents who would consider themselves to be at high risk for colon cancer were significantly more likely to have sought information about a disease (p?=?0.03), discussed results with a physician (p?=?0.05), changed their diet (p?=?0.02), and started exercising more (p?=?0.01). Participants’ personal health contexts—including personal and family history of disease and quality of self-perceived health—were also associated with health-related behaviors after testing. Subjective interpretations of genetic risk data and personal context appear to be related to health behaviors among DTC customers. Sharing DTC test results with healthcare professionals may add perceived utility to the tests.     

Culturally Congruent Mentoring: Predicting Asian American Student Participation Using the Theory of Reasoned Action1

Predictors of Asian American first‐year college students’ intention to participate in a culturally congruent mentoring program was empirically documented using Ajzen and Fishbein's (1980) theory of reasoned action (TRA). Intention to participate was predicted by the belief that participation eases transition to college. Also, attitude toward participation was positively related to students’ beliefs that participation will strengthen ethnic identity and combat model‐minority myth. With 78% of students who intended to participate, results suggest that Asian American college students need programming that addresses issues as first‐year college students and those related to their cultural experience. The use of the TRA to better understand issues related to peer mentoring is illuminated. Wider implications for implementing culturally congruent mentoring programs in educational settings are discussed.     

Cost Sharing and Hereditary Cancer Risk: Predictors of Willingness-to-Pay for Genetic Testing

Increasing use of predictive genetic testing to gauge hereditary cancer risk has been paralleled by rising cost-sharing practices. Little is known about how demographic and psychosocial factors may influence individuals’ willingness-to-pay for genetic testing. The Gastrointestinal Tumor Risk Assessment Program Registry includes individuals presenting for genetic risk assessment based on personal/family cancer history. Participants complete a baseline survey assessing cancer history and psychosocial items. Willingness-to-pay items include intention for: genetic testing only if paid by insurance; testing with self-pay; and amount willing-to-pay ($25–$2,000). Multivariable models examined predictors of willingness-to-pay out-of-pocket (versus only if paid by insurance) and willingness-to-pay a smaller versus larger sum (≤$200 vs. ≥$500). All statistical tests are two-sided (α?=?0.05). Of 385 evaluable participants, a minority (42 %) had a personal cancer history, while 56 % had ≥1 first-degree relative with colorectal cancer. Overall, 21.3 % were willing to have testing only if paid by insurance, and 78.7 % were willing-to-pay. Predictors of willingness-to-pay were: 1) concern for positive result; 2) confidence to control cancer risk; 3) fewer perceived barriers to colorectal cancer screening; 4) benefit of testing to guide screening (all p?p?相似文献   

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.     

African American Women’s Limited Knowledge and Experiences with Genetic Counseling for Hereditary Breast Cancer

Genetic counseling and testing for hereditary breast cancer have the potential benefit of early detection and early interventions in African American women. However, African American women have low use of these services compared to White women. We conducted two focus groups with African American women diagnosed with breast cancer (affected group, n?=?13) and women with at least one first-degree relative with breast/ovarian cancer (unaffected group, n?=?8). A content analysis approach was employed to analyze interview data. Breast cancer survivors had more knowledge about genetic counseling and testing than participants who were unaffected with cancer. However, knowledge about genetic counseling was limited in both groups. Barriers to pursuing genetic counseling and testing included poor understanding of the genetic counseling and testing process, fear of carrying the mutation, concerns about discrimination, and cost. Motivators to participate in genetic counseling and testing included desire to help family members, insurance coverage, and potential of benefiting the larger African American community. Education efforts are needed to increase genetic counseling and testing awareness in the African American community.     

Predicting Zimbabwean women's ability to tell their partners to use condoms.

The effectiveness of AIDS education may depend on the development of models that predict and explain HIV prevention behavior. In this study, the aim was to test Fishbein and Ajzen's theory of reasoned action model in predicting women's capacity to tell their partner to use condoms. The basic theory pertains to the relationship of 1) attitude toward behavior and 2) the subjective norms to behavior; further refinements reflect factors such as 3) perceived behavioral control or self-efficacy, 4) and perceived barriers. A sample was drawn of 123 female first-year teacher trainees in Harare, Zimbabwe, in late 1990; a self-administered questionnaire was distributed and returned. 72% of the respondents were sexually experienced. The mean age of the entire sample was 24 years. The results of the multiple linear regression indicated that the model was able to predict were F(2,74)=32.81, p.0001. 47% of the variance was explained by this Fishbein model. Attitude toward behavior was significantly associated with the intention to tell one's partner to use condoms (beta = .60, p .05). Subjective norms were not significant (beta = .15, p .05). Perceived behavioral control and perceived barriers were also not significantly associated with the intention to tell one's partner to use condoms. A caveat was that the subjective norm was measured by only one item, and an improved conceptualization and measurement of this construct might have changed the relationship. The suggestion is that health educators should address women's underlying beliefs and attitudes about the benefits of telling their partners to use condoms. Future prospective studies will better delineate the relationship between attitude and behavior.     

Choosing a Place of Death: The Influence of Pain and of Attitude Toward Death1

This experimental study sought to verify if factors like pain or attitude toward death can determine the choice of a place of death. Using a questionnaire developed from Triandis’(1980) theory, the influence of pain on the intention of choosing a place of death was measured among 138 respondents. “Attitude toward death,” used as a control variable, was measured by means of the Death Attitude Profile. Variance analyses (p < .008) demonstrated the influence of pain on intention of choosing a place of death and on the cognitive component. Linear regression (p .002) highlighted 2 determinants of intention of choosing a place of death: moral norm and social role. As for attitude toward death, it seems to have no influence on the choice of a place of death.     

High-Risk Palliative Care Patients’ Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking

Even at the end of life, testing cancer patients for inherited susceptibility may provide life-saving information to their relatives. Prior research suggests palliative care inpatients have suboptimal understanding of genetic importance, and testing may be underutilized in this clinical setting. These conclusions are based on limited research. This study aimed to estimate genetic testing prevalence among high-risk palliative care patients in a National Cancer Institute-designated comprehensive cancer center. We also aimed to understand these patients’ understanding of, and attitudes toward, hereditary cancer testing and DNA banking. Palliative care in-patients with cancer completed structured interviews, and their medical records were reviewed. Among patients at high risk for hereditary cancer, we assessed history of genetic testing/DNA banking; and related knowledge and attitudes. Among 24 high-risk patients, 14 (58.3%) said they/their relatives had genetic testing or they had been referred for a genetics consultation. Of the remaining 10 patients, seven (70%) said they would “probably” or “definitely” get tested. Patients who had not had testing were least concerned about the impact of future testing on their family relationships; two (20%) said they were “extremely concerned” about privacy related to genetic testing. Of patients without prior testing, five (50%) said they had heard or read “a fair amount” about genetic testing. No high-risk patients had banked DNA. Overall, 23 (95.8%) said they had heard or read “almost nothing” or “relatively little” about DNA banking. Written materials and clinician discussion were most preferred ways to learn about genetic testing and DNA banking. Overall, this study demonstrates underutilization of genetics services at the end of life continues to be problematic, despite high patient interest.     

Real Donors, Real Consent: Testing the Theory of Reasoned Action on Organ Donor Consent

In an attempt to apply the theory of reasoned action (TRA) to the process underlying organ donor consent, participants completed questionnaires concerning their affective responses to organ donation, as well as their intentions to donate. Participants were given the opportunity to sign an organ donor card. Those who chose to sign the card had more positive attitudes about donation, perceived donation as something that their reference group would encourage, and had stronger intentions to consent to signing a card. The current investigation extends the organ donor literature by using a true behavioral outcome measure indicating consent. Moreover, the pattern of results between attitudes, norms, intention, and behavior illustrates the usefulness of applying the TRA to yet another health-related behavior.     

The Impact of Breast Cancer Knowledge and Attitudes on Screening and Early Detection Among an Immigrant Iranian Population in Southern California

Few studies explored factors influencing breast cancer screening and early detection behaviors among immigrant Iranian women residing in the USA. Using a cross-sectional survey, a convenience sample of 319 Iranian American women was selected to investigate the impact of breast cancer knowledge and attitude on screening. A self-administered questionnaire assessed breast cancer screening knowledge, attitude, and mammography use (ever, previous year, and future intention). 79 % of the women in the study reported ever receiving at least one mammogram and 74 % received a mammogram in the past year. Personal attitude had an independent significant effect on: mammography use in the last year, ever use of mammography, and future intention to screen. Knowledge and morality-induced attitude influenced screening behavior but not significantly. Interventions targeting breast cancer screening among immigrant Iranian women in the USA should focus on enhancing personal attitudes in order to influence actual screening behavior.