Attitudes Toward Genetic Testing for Celiac Disease

HLA molecular typing for celiac disease (CD) is a genetic test with a high negative predictive value. The aim of this study is to explore knowledge of and attitudes towards genetic testing (GT). A 25-item questionnaire was developed by a multidisciplinary team and distributed to members of CD support groups across the United States. Respondents (n?=?1835) were mainly female (88 %), married (76 %), and college-educated (55 %), with a median age range of 31–50 years. Those who were married (82 vs 75 %, p?=?0.002), had children (82 vs 74 %, p?<?0.001), and had pursued education beyond high school (81 vs 68 %, p?=?0.004) were more likely to be aware of the availability of GT. On multivariable analysis, adjusting for age, sex, education, marital status, region of residence, and having children, college-education (OR 2.05, 95 % CI: 1.33–3.16) and having children (OR 1.56, 95 % CI: 1.15–2.11) remained significant predictors of GT awareness. A majority of patients with a personal or family history of CD planned GT for their children, and the most common concerns regarding GT were cost and impact on health care and/or insurance. In conclusion, awareness of GT is high among CD support group members. Efforts should be made to increase knowledge of GT in those with a lower educational level, and healthcare professionals should attempt to address concerns regarding GT cost and the impact of results on health care and insurance status.     

Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease

Critical questions arise about misunderstandings of genetics. We interviewed for 2 h each, 64 individuals who had or were at risk for Huntington’s disease (HD), breast cancer or Alpha-1 antitrypsin deficiency. These individuals revealed various misunderstandings that can affect coping, and testing, treatment and reproductive decisions. A therapeutic misconception about testing appeared: that testing would be helpful in and of itself. Many believed they could control genetic disorders (even HD), yet these beliefs were often incorrect, and could impede coping, testing, and treatment. Misunderstandings about statistics and genetics often fueled each other, and reflected denial, and desires for hope and control. Emotional needs can thus outweigh understandings of genetics and statistics, and providers’ input. Individuals often maintained non-scientific beliefs, though embarrassed by these. These data have implications for care, and public and professional education. Misunderstandings’ persistence, despite realization of their inaccuracy, suggests that providers need to address not just cognitive facts, but underlying emotional issues.     

Attitudes of Genetic Counselors Towards Genetic Susceptibility Testing in Children

Genetic susceptibility research and testing is leading to an era of personalized medicine. Genetic counselors act as liaisons between the medical genetics community and the public. Understanding the opinions of genetic counselors will be important in developing testing guidelines. Attitudes towards genetic susceptibility testing in children were assessed for 216 NSGC members. Genetic counselors were likely to support testing if the results would determine: disease progression or prognosis, likelihood of survival after a specific treatment, or risk for an adverse drug reaction. Genetic counselors were unlikely to support testing to determine susceptibility to later disease development or in the absence of available intervention. There was a strong positive correlation between attitudes associated with desire to test their own child, if at risk and their support for genetic testing in any child at risk. Respondents strongly favored parent/guardian and child’s rights over doctor or insurance rights. They indicated assent should be obtained prior to testing, when appropriate, and that a copy of results should be kept in a permanent medical record. Respondents expressed concerns about insurance discrimination, testing in the absence of medical necessity, and taking away a child’s autonomy.     

Correlates of Genetic Counseling and Testing Among Orthodox Jews

One hundred and thirty-six Orthodox Jews responded to questions about their family background, disability attitudes, and their participation in genetic counseling and testing. Findings showed that only birth order and the presence of a disabled family member correlated with increased chances of an individual going for genetic counseling/testing. Results are discussed in the context of the contemporary sociology of Orthodox Judaism, with a particular focus on better understanding the experience of having a disabled family member.     

Attitudes Toward Pre-implantation Genetic Diagnosis (PGD) for Genetic Disorders Among Potential Users in Malaysia

While pre-implantation genetic diagnosis (PGD) is available and legal in Malaysia, there is an ongoing controversy debate about its use. There are few studies available on individuals’ attitudes toward PGD, particularly among those who have a genetic disease, or whose children have a genetic disease. To the best of our knowledge, this is, in fact, the first study of its kind in Malaysia. We conducted in-depth interviews, using semi-structured questionnaires, with seven selected potential PGD users regarding their knowledge, attitudes and decisions relating to the use PGD. The criteria for selecting potential PGD users were that they or their children had a genetic disease, and they desired to have another child who would be free of genetic disease. All participants had heard of PGD and five of them were considering its use. The participants’ attitudes toward PGD were based on several different considerations that were influenced by various factors. These included: the benefit-risk balance of PGD, personal experiences of having a genetic disease, religious beliefs, personal values and cost. The study’s findings suggest that the selected Malaysian participants, as potential PGD users, were supportive but cautious regarding the use of PGD for medical purposes, particularly in relation to others whose experiences were similar. More broadly, the paper highlights the link between the participants’ personal experiences and their beliefs regarding the appropriateness, for others, of individual decision-making on PGD, which has not been revealed by previous studies.     

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.     

Attitudes to Genetic Testing for Deafness: The Importance of Informed Choice

With recent progress in the identification of genes for deafness, it is highly likely that genetic testing, including pre-natal testing, for deafness will become more widely available. In a context where there are concerns about pre-natal testing, and where many in the Deaf community contest the understanding of deafness as a disability, it is important to examine the attitudes of Deaf/deaf people toward genetic testing. This qualitative study employed in-depth interviews to investigate the views about genetic testing for deafness of 19 participants, who were identified as functionally deaf or hearing impaired, or as belonging to the Deaf community. The key findings are that participants were generally supportive of genetic testing for deafness but only when full information about all relevant aspects of deafness is given to prospective users of genetics services. Participants emphasized informed choice, stating that information about medical and technological options for deaf people should be provided, together with information about communication, education, and the experience of being deaf. Although there was less support for pre-natal diagnosis and termination of pregnancy for deafness, most participants nonetheless felt that individual choice was important and that pre-natal diagnosis should be made available to those who wanted to use it.     

Attitudes and Practice of Genetic Counselors Regarding Anonymous Testing for BRCA1/2

Patients and clinicians alike view anonymous testing as a potential way to avoid perceived risks of genetic testing such as insurance and employment discrimination and the potential loss of privacy. To assess their experience with and attitudes towards anonymous testing for BRCA1/2, genetic counselors were invited to complete an internet-based survey via the NSGC Familial Cancer Risk Counseling Special Interest Group (FCRC-SIG) listerv. A majority of the 115 respondents (70%) had received requests from patients for anonymous BRCA1/2 testing at some point in their careers and 43% complied with this request. Most counselors, however, encountered such requests infrequently, 1–5 times per year. Although genetic counselors do not generally encourage anonymous testing and over a third of respondents feel it should never be offered, a substantial subset support its use under specific circumstances. In general, a strong consensus exists among counselors that anonymous testing should not be offered routinely. In light of the current legislative landscape, it is of note that a substantial proportion of respondents (42.7%) cited the threat of life insurance discrimination as a reason for pursuing AT, and fewer cited health insurance (30.0%) or employment discrimination (29.1%) as justifications. Since there exists no federal legislative protections against discrimination by life insurance companies, it makes sense that genetic counselors were more responsive to this issue as opposed to the threat of discrimination in health insurance and employment.     

Lifestyle Risk Factors Among People Who Have Had Cancer Genetic Testing

Hereditary cancer genetic counseling often focuses on medically intensive risk-reduction strategies, like imaging and risk-reducing surgeries. Lifestyle factors also influence cancer risk, but health behavior counseling is not common in genetic counseling. Information about typical lifestyle risk factors among patients seeking hereditary cancer risk is sparse. The current study describes cancer risk-relevant lifestyle factors for people who have had cancer genetic testing. Data came from the Health Information National Trends Survey (HINTS 4) collected in 2013. Analytic variables represented American Cancer Society nutrition and physical activity guidelines. Lifestyle factors were assessed for people who had undergone testing for BRCA1, BRCA2, or Lynch Syndrome genes. Among 3016 HINTS respondents, 135 had cancer genetic testing. Of these, 58 % were overweight or obese. Eighteen percent reported no moderate-intensity physical activity. Average sedentary screen-time was 3.4 h (SE = 0.472) daily. Sixty-three percent drank non-diet soda, and 23 % of these people drank soda every day. Between 18 and 36 % consumed less than 2 ½ cups fruits/vegetables daily. Twenty-four percent were current smokers. Lifestyle risk factors were not different between people who had genetic testing and those who had not. In conclusion, most people who had genetic testing for cancer susceptibility have at least one modifiable risk factor. Genetic counselors have opportunities to impact a counselee’s cancer risk not only through risk-tailored medical procedures, but also through lifestyle modification recommendations. Results of the current study may foster a broader discussion of genetic counselors’ roles in healthy lifestyle education.     

Genetic Testing and Parkinson Disease: Assessment of Patient Knowledge,Attitudes, and Interest

The most common genetic contributor to late-onset Parkinson disease (PD) is the LRRK2 gene. In order to effectively integrate LRRK2 genetic testing into clinical practice, a strategy tailored to the PD population must be developed. We assessed 168 individuals with PD for baseline knowledge of genetics, perceived risk, and interest and opinions regarding genetic counseling and testing. Most participants felt that they were familiar with general genetics terms but overall knowledge levels were low, with an average score of 55%. The majority of participants thought it was likely they inherited a PD gene (72%), believed genetic testing for PD would be useful (86%), and were interested in genetic testing (59%) and genetic counseling (56%). However, only a few participants had heard of any genetic tests for PD (29%) or LRRK2 (10%). There appears to be a significant level of interest in genetics and genetic testing within the PD population, but a considerable deficit in genetics knowledge and an over-estimation of risk. Genetic education and counseling tools to address these needs were developed to provide patients with the ability to make informed and knowledgeable genetic testing decisions.     

Reprogenetics,Genetic Tools and Reproductive Risk: Attitudes and Understanding Among Ethnic Groups in Israel

The present study investigated a possible relationship between the attitudes toward genetic technologies and the understanding of genetics, reproduction, and reproductive risk among Israeli Arabs and Israeli Jews. The study included 203 respondents, who answered a structured self-report questionnaire. They were recruited using a snowball method, which increased the participation of Israeli Arabs in the sample, although the sample was not representative of the Israeli population as a whole (there were more Arabs and fewer men). The respondents in this study expressed a positive attitude toward genetic technologies, but were less in favor of using genetic tools for non-medical purposes. Respondents of both groups were not knowledgeable of genetics; however, they scored higher on the items related to reproductive risk, which suggests that some awareness about genetic risk exists in both sectors of the Israeli population. Nevertheless, Israeli Arabs were less positive than Israeli Jews regarding the application of genetic tools. Moreover, although an understanding of genetics correlated positively with the attitude among Arabs, it did not affect the attitude of Jews, who remained very positive, regardless of their level of understanding. This result suggests that other social and cultural factors, besides understanding, might be at work among these two major ethnic sectors. Further studies that integrate educational, social, and cultural aspects among ethnic sectors of the population are required to improve health services and genetic counselling in Israel and in other countries.     

Measuring Attitudes Toward Acceptable and Unacceptable Parenting Practices

This study investigated the properties of a new rating instrument, the Parenting Questionnaire (PQ), designed to measure attitudes about acceptable and unacceptable parenting practices. In Study 1, subject matter experts representing culturally diverse psychologists, parents, and college students were consulted to identify 110 items receiving high endorsement. In Study 2, items were administered to 1,398 undergraduate students to examine their factor structure and the effects of ethnicity and gender differences on PQ factors. In Study 3, test–retest reliability (N = 92) and convergent validity (N = 142) of the PQ factors were examined. Exploratory factor analysis revealed three factors (total of 63 items) with high internal consistencies that accounted for a moderate amount of total variance (R ² = .38). The factors were Critical Feedback (26 items), Supportive Feedback (26 items), and Physical Discipline (11 items). Significant ethnicity and gender differences were found on the three PQ factors, as well as a significant interaction between ethnicity and gender on the Supportive Feedback factor. PQ factor scores demonstrated good temporal stability, internal consistency, and convergent validity. Overall findings suggest that the PQ is a reliable, stable, and valid measure of attitudes toward parenting with three distinct factors. Future research directions with parents are discussed.     

The Relationship Between Experience and Attitudes Concerning Epilepsy1

Research indicates that epilepsy is a misunderstood and stigmatizing disorder. The present study examined whether various levels and types of experience with epilepsy are related to attitudes about the disorder. It was hypothesized that certain types of direct experience with epilepsy (e.g., knowing people with epilepsy) are related to positive attitudes about the disorder, whereas other types of direct experience (e.g., witnessing seizures) are related to negative beliefs. As predicted, data from telephone interviews with 271 subjects indicate that individuals knowing someone with epilepsy held significantly more accepting attitudes than respondents who had never known an epileptic. The findings also suggest that witnessing epileptic seizures is an emotionally charged event, and, in the absence of other types of experience, this emotional impact might have a negative effect on attitudes toward people with epilepsy. The findings from this study have implications for the development of educational programs aimed at the general public, medical personnel, and people with epilepsy.     

Equity in Staff Selection: Managerial Attitudes and Practices

A survey of 486 managers was designed to examine how well employment equity is being implemented in Australian public and private sector organizations. Respondents were asked to report on the procedures they themselves used in their most recent staff selection. The findings on the incidence of the various selection techniques generally confirmed those of previous studies, specifically that the interview is the single most common technique. Although the large majority of managers professed pro-equity attitudes, most also displayed a belief in gender stereotypes and almost half misunderstood the requirements of affirmative action in Australia. Most selection decisions appear to have been based on merit-related factors, but a surprisingly high proportion of managers admitted to potentially discriminatory practices. Factors such as age, good looks and the absence of physical disability were rated as having been important in more than a third of selection decisions. Also, factors such as gender, marital status, race and colour influenced some managers in job selection. However, such discriminatory factors appear to have been less important in the public sector and in larger organizations which would have had more exposure to equity and affirmative action programs.     

Alcohol First Use and Attitudes Among Young Children

We describe the attitudes and first use of alcohol by children, grades 3-6, who participated in the Bogalusa Heart Study, 1993-94. Questionnaire data reflected that more than one-third of the children had experimented with alcohol at the time of the study. The dominant environmental factor in experimentation was family modeling, and the dominant personal factor was curiosity, regardless of race, gender, or grade. Most children believed that alcohol use can lead to accidents, that drinking has negative social consequences, and that alcohol use hurts only if done to excess. Indications are that young children generally have negative attitudes regarding alcohol use, and that public and family alcohol education efforts need to be more specific about deleterious effects of even low levels of alcohol use in the young.     

Religious and Spiritual Practices Among Patients with Cancer

The aim of this study was to investigate the frequency with which cancer patients engage in religious and spiritual practices, the methods used, the reasons for such a search, and the levels of depression and hopelessness in patients who seek spiritual assistance. One hundred and ten radiation oncology patients, who gave voluntary informed consent were included in this study. Questionnaires about religious and spiritual practices were administered, along with the Beck Depression and Beck Hopelessness scales. Twenty percent of the patients preferred spiritual practices. Female gender, lower education levels, and higher depression and hopelessness scores were associated with this preference. The frequency of depression was 18.2%, and the frequency of hopelessness was 20.9%. A significant number of cancer patients engaged in religious and spiritual practices. We recommend that practitioners offer their patients brief but sufficient information about religious and spiritual support and determine their patients’ depression and hopelessness levels.