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At least 19 recordsLinked to original sources
PubMed2005

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.

Child↗
PubMed2006

An assessment of the ratio of height to thyromental distance compared to thyromental distance as a predictive test for prediction of difficult tracheal intubation in Thai patients.

BACKGROUND AND RATIONALE: Preoperative evaluation is important in the detection of patients at risk for difficult tracheal intubation. Thyromental distance (TMD) is often used for these purposes, but its value as an indicator for difficult intubation is questionable, as it varies with patient size and body proportions. The purpose of the present study was to evaluate and compare the accuracies of the ratio of patient's height to TMD (ratio of height to TMD = RHTMD) and TMD alone in the prediction of difficult tracheal intubation in Thai patients. MATERIAL AND METHODS: The authors collected data on 382 consecutive patients scheduled to receive general anesthesia requiring endotracheal intubation for elective surgery. Thyromental distance and RHTMD were evaluated preoperatively. Difficult intubation was defined in the present study by Cormack and Lehane grade 3 or 4. The optimal predictive value was chosen using a receiver operating characteristic (ROC) curve. The areas under the ROC curves (AUC) of TMD and RHTMD were compared to determine the performance of the different predictive tests used. The sensitivity, specificity, and positive and negative predictive values of each of the predictive tests were calculated according to standard formulae. RESULTS: Difficult intubation occurred in 42 patients (10.9 %). The predictive advantage of RHTMD has a similar specificity with improved sensitivity in comparison with TMD. The AUC of RHTMD was significantly greater than the AUC of TMD (p = 0.00). The authors concluded that RHTMD had better accuracy in predicting difficult intubation than TMD.

Body Height↗
PubMed1998

Admission test: a predictive test for fetal distress in high risk labour.

OBJECTIVE: To study predictive utility of admission test (AT) for perinatal outcome in high risk labours. METHOD: A hundred patients at risk of fetal jeopardy due to uteroplacental insufficiency were screened by admission test. The traces were classified as per the criteria suggested by Ingemarsson and Arulkumaran (1986). The perinatal outcome was correlated with the initial FHR pattern and Chi square test was applied to the results. RESULTS: Fifty-eight patients had reactive, 35 had equivocal and 7 had ominous tracing. The incidence of operative delivery for fetal distress showed a progressive rise from reactive (5.17%) to ominous (28.5%) pattern group. The perinatal morbidity also showed a rise from 6.89% in the reactive to 31.42% in the equivocal (p < 0.01) and 85.71% in the ominous group (p < 0.02). The reactive pattern was assuring of the fetal well being for next 5 hours. Presence of late decelerations and decelerations of 60 beats or more below the baseline were additional ominous characteristics, associated with a significant increase in perinatal morbidity. CONCLUSION: Reactive AT appears to be predictive of fetal well being in high risk labours also. Repeat tracing 4 to 5 hours apart may improve the predictive accuracy. Equivocal and ominous patterns require vigilant monitoring.

Apgar Score↗
PubMed1995

Are we all of one mind? Clinicians' and patients' opinions regarding the development of a service protocol for predictive testing for Huntington disease. Canadian Collaborative Study for Predictive Testing for Huntington Disease.

There are currently different research programs in place to assess the effects of predictive testing for a few late-onset disorders, including Huntington disease (HD) and familial cancers. Prior to providing predictive testing as a service, we sought the views of both the patients and the clinicians as to the importance and value of different items in a research protocol for HD. We mailed questionnaires to 41 clinicians and 351 at-risk patients who had participated in the research protocol, to solicit their opinions on the relative importance of various components of the HD predictive testing research protocol. Completed questionnaires were received from 256 patients (73%) and 33 clinicians (80%). Most participants (96%) were satisfied with the program, and < 3% of persons receiving a modification of risk felt that predictive testing had impaired their quality of life. While there was consensus on the importance of most components of the protocol, significantly more clinicians than patients (97% vs. 72%; P = 0.02) felt it was essential to keep written material about HD as part of a service protocol. More patients than clinicians (83% vs. 27%) considered it essential to have 24-hr contact numbers following disclosure of test results (P < 0.0001). Patients also felt more strongly about the importance of counseling about technical aspects of predictive testing (84% vs. 77%; P < 0.02), and about having a support person attend counselling sessions with the patient (62% vs. 48%; P = 0.04). Nearly 25% of participants indicated that they would not want their general practitioner routinely involved in the predictive testing program. These findings have influenced the development of our service protocol, and they underscore the importance of involving both providers and consumers of predictive testing in the development of a service protocol for genetic testing.

Adolescent↗
PubMedDate not supplied

Comparison of the sensitivities of the Buehler test and the guinea pig maximization test for predictive testing of contact allergy.

International test guidelines, such as the Organisation for Economic Cooperation and Development (OECD) guideline #406, recommend 2 guinea pig methods for testing of the contact allergenic potential of chemicals: the Guinea Pig Maximization Test (GPMT) and the Buehler test. Previous comparisons between the methods suggested that the Buehler test was less sensitive than the GPMT although modified Buehler test protocols were used. Parallel GPMT and Buehler tests were conducted according to OECD guideline #406 using a multiple-dose design and test results were analysed using a standard logistic dose-response model. To compare the sensitivity of the 2 test procedures the test conditions were kept identical and the following chemicals with a range of sensitization potentials were tested: chloraniline, chlorhexidine, eugenol, formaldehyde, mercaptobenzothiazole and neomycin sulphate. Formaldehyde and neomycin sulphate were strong sensitizers in both tests. Mercaptobenzothiazole, eugenol and chloraniline were all strong sensitizers in the GPMT, eugenol and mercaptobenzothiazole were negative in the Buehler test and equivocal results were obtained with chloraniline. Chlorhexidine was negative in the GPMT and equivocal responses were obtained with the Buehler test. Higher induction concentrations were needed to show allergenicity in the Buehler test and for some allergens the Buehler test protocol was not sensitive enough to demonstrate allergenic potential.

Allergens↗
PubMed1999

Attitudes toward colon cancer gene testing: factors predicting test uptake.

OBJECTIVES: Genetic discoveries in hereditary nonpolyposis colorectal cancer (HNPCC) have made possible genetic testing to determine susceptibility to this form of colorectal cancer (CRC). This study measured the uptake of genetic testing for HNPCC among first-degree relatives of CRC patients and conducted a preliminary analysis of the predictors of test uptake. MATERIALS AND METHODS: We compared 77 test acceptors and 181 decliners on demographic, medical history, and psychological characteristics, controlling for distance from the testing center. The psychological factors studied were risk perception for CRC, frequency of cancer thoughts, and perceived ability to cope with unfavorable genetic information. RESULTS: In the final regression model, after accounting for all variables, the significant predictors of test uptake were increased risk perception, greater perceived confidence in ability to cope with unfavorable genetic information, more frequent cancer thoughts, and having had at least one colonoscopy. The association between risk perception and uptake was dependent on frequency of cancer thoughts. Among those who thought about getting CRC more often, the probability of testing increased as perceived risk increased to approximately 50% likelihood of getting CRC and then leveled off. In contrast, among those who never or rarely thought about getting CRC, risk perception was unrelated to testing decision. CONCLUSIONS: Our findings are consistent with the associations reported between psychological factors and other cancer screening behaviors.

Adaptation, Psychological↗
PubMed1996

Adverse psychological events occurring in the first year after predictive testing for Huntington's disease. The Canadian Collaborative Study Predictive Testing.

A total of 135 participants in the Canadian predictive testing programme for HD were followed for at least one year in one of four study groups: increased risk (n = 37), decreased risk ( n = 58), uninformative (n = 17), or not tested (n = 23). Clinical criteria for an adverse event were a suicide attempt or formulation of a suicide attempt plan, psychiatric hospitalisation, depression lasting longer than two months, a marked increase in substance abuse, and the breakdown of important relationships. Quantitative criteria, as measured by changes on the General Severity Index of the Symptom Checklist 90-R and the Beck Depression Inventory, were also used to identify people who had adverse events. Twenty of the 135 participants (14.8%) had an adverse event. There were no significant differences between those with or without an adverse event with respect to age, sex, marital status, education, psychiatric history, general psychiatric distress, or social supports at baseline. However, evidence for depression was associated with an increased frequency of adverse events (p < 0.04). The adverse events were similar and seen with equivalent frequency in those receiving an increased risk or decreased risk and persons at risk who did not receive a modification of risk. However, a significant difference was found in the timing of adverse events for the increased and decreased risk groups (p < 0.0002). In the increased risk group all of the adverse events occurred within 10 days after results whereas, in the decreased risk group, all of the adverse events occurred six months or later after reviewing test results. These results suggest that people entering into predictive testing with some evidence of clinical depression warrant special vigilance and also suggest that counselling and support should be available for all participants in predictive testing irrespective of the direction of test results.

Adolescent↗
PubMed2006

Maturity of judgement in decision making for predictive testing for nontreatable adult-onset neurogenetic conditions: a case against predictive testing of minors.

International guidelines developed to minimize harm from predictive testing for adult-onset, nontreatable neurogenetic conditions such as Huntington disease (HD) state that such testing should not be available to minors. Some authors have proposed that predictive testing for these conditions should be available to minors at the request of parents and/or of younger adolescents themselves. They highlight the lack of empirical evidence that predictive testing of minors causes harm and suggest that refusing to test minors may be detrimental. The current study focuses on the context of predictive test requests by adolescents younger than 18 years, and presents arguments and evidence that the risk of potential harm from testing such young people is sufficiently high to justify continued caution in this area. A study based on a model of psychosocial maturity found that the 3 factors involved in maturity of judgement in decision making - responsibility, temperance and perspective - continue to develop into late adolescence. There is also evidence that the prefrontal areas of the brain, which are involved in executive functions such as decision making, are not fully developed until early adulthood. Combined with evidence of adverse long-term effects, from research with adults who have undergone predictive testing, these findings constitute grounds for retaining a minimum age of 18 years for predictive testing for nontreatable conditions. Further research on assessment of maturity will assist with reaching a consensus on this issue.

Adolescent↗
PubMed1992

The psychological consequences of predictive testing for Huntington's disease. Canadian Collaborative Study of Predictive Testing.

BACKGROUND: Advances in molecular genetics have led to the development of tests that can predict the risk of inheriting the genes for several adult-onset diseases. However, the psychological consequences of such testing are not well understood. METHODS: The 135 participants in the Canadian program of genetic testing to predict the risk of Huntington's disease were followed prospectively in three groups according to their test results: the increased-risk group (37 participants), the decreased-risk group (58 participants), and the group with no change in risk (the no-change group) (40 participants). All the participants received counseling before and after testing. Standard measures of psychological distress (the General Severity Index of the Symptom Check List 90-R), depression (the Beck Depression Inventory), and well-being (the General Well-Being Scale) were administered before genetic testing and again at intervals of 7 to 10 days, 6 months, and 12 months after the participants received their test results. RESULTS: At each follow-up assessment, the decreased-risk group had lower scores for distress than before testing (P < 0.001). The increased-risk group showed no significant change from base line on any follow-up measure, but over the year of study there were small linear declines (P < 0.023) for distress and depression. The no-change group had scores lower than at base line on the index of general well-being at each follow-up (P < or = 0.045). At the 12-month follow-up, both the increased-risk group and the decreased-risk group had lower scores for depression and higher scores for well-being than the no-change group (P < or = 0.049). CONCLUSIONS: Predictive testing for Huntington's disease has potential benefits for the psychological health of persons who receive results that indicate either an increase or a decrease in the risk of inheriting the gene for the disease.

Adult↗
PubMed1989

Predictive testing for Huntington disease: II. Demographic characteristics, life-style patterns, attitudes, and psychosocial assessments of the first fifty-one test candidates.

Predictive testing was offered to individuals at-risk for Huntington disease living within a 100-mile radius of Vancouver, BC. Ninety-five at-risk individuals, representing approximately 12.6% of eligible candidates in this area, have enrolled in its first 16 months. This paper reports on the psychosocial characteristics of the first 51 at-risk individuals to complete the initial assessment. Two-thirds of the candidates are female with a mean age 39.3 years. They derive from higher socioeconomic backgrounds. Reasons for taking the test included planning for the future, concern for their children, and reducing uncertainty. Only 29.4% of candidates would both desire prenatal testing and terminate a high-risk pregnancy. Results on the SCL 90(R), General Well-Being, and other scales indicate that the candidates' mental health is representative of the population, but as a group, they are more resourceful. The tests identified individuals who needed further assessment on the basis of previous and current psychiatric functioning and social support. No candidate was a high immediate suicidal risk. The process of personal assessment has had beneficial effects on personal growth. The self-selection of a healthy group of candidates emphasizes the need for continued assessment and support as possibly less healthy candidates register for predictive testing programs in the future.

Adaptation, Psychological↗
PubMed1993

Attitudes toward direct predictive testing for the Huntington disease gene. Relevance for other adult-onset disorders. The Canadian Collaborative Group on Predictive Testing for Huntington Disease.

OBJECTIVE: To assess attitudes toward, and projected utilization of, direct mutation testing by individuals at risk for Huntington disease (HD). DESIGN: Prior to the cloning of the gene for HD, a questionnaire concerning the use of a definitive test was constructed and mailed to 354 participants in the Canadian Collaborative Study for HD. Completed questionnaires were received from 250 participants (response rate, 71%). Persons were asked to indicate whether they would participate in a new predictive test that was either 100% accurate (the definitive test, requiring blood only from the proband) or only 99% accurate. RESULTS: Most (72%) of the persons who had previously received a result in a predictive testing program said they would request testing in either situation. Significantly more persons would request the definitive test than the 99% accurate test (72% vs 58%; P < .02). Respondents for whom testing was uninformative in the linkage test program or who had previously received an increased-risk result were more likely to indicate they would use the test than those who received a decreased-risk result or chose not to have the original test (P = .0003). Less than half (46%) of the participants who initially chose not to have the linkage test said they would return for the new direct test. The major factor that has limited acceptance of predictive testing for this group is the concern about receiving an increased-risk result in the absence of any therapy to alter progression of the disease. CONCLUSIONS: A direct mutation test for HD will most readily be accepted by persons who wanted but could not previously receive a result in the linkage test program and those who previously received an increased-risk result. In the absence of therapy, the majority of persons who previously chose not to have predictive testing are unlikely to participate in a new test despite improved accuracy. This has implications for the expected demands for testing services for other adult-onset genetic disorders.

Attitude to Health↗
PubMed1988

Psychiatric morbidity associated with early clinical diagnosis of Huntington disease in a predictive testing program.

Predictive testing for Huntington disease is now possible by using DNA markers close to the mutant gene. Such tests result in an increased or decreased risk estimate as to whether the person tested has inherited the mutant gene. Persons who already manifest subtle signs of the disease but see themselves as presymptomatic will also present to the preclinical testing programs. The authors report a severe psychiatric reaction to a positive clinical diagnosis of Huntington disease in a woman enrolled in a pilot preclinical program who had a history of psychiatric illness and hospitalizations. She is the only one of 60 persons currently enrolled in the program who has had a serious crisis. The authors demonstrate the need for readily available and ongoing counseling services for all persons participating in such a program.

Adjustment Disorders↗
PubMed2006

A national sample of US paternity tests: do demographics predict test outcomes?

BACKGROUND: Nearly 300,000 paternity tests are performed in the United States annually to include or exclude a male as the biological father of a child. Little is known about how well the test outcomes could be predicted simply on the basis of the subjects' social background. Our objective is to document the demographic composition of test subjects and to determine how well ethnic background and age predict paternity inclusion. STUDY DESIGN AND METHODS: A national database of 9999 paternity test results was formed weighted to represent the population of paternity establishment cases for the United States. Multiple regression determined the odds ratio of a paternity inclusion based on demographic variables such as race and age. RESULTS: The test results indicated paternity inclusions in 72 percent of cases, overall. The percent included varied little across racial and/or ethnic categories with a low of 67 percent in African Americans and a high of 82 percent among Native Americans, but these differences were not significant in multivariate analysis. The likelihood of inclusion showed a modest but significant correlation with increased maternal age. Mothers of European origin who nominated non-Europeans as fathers were less likely to identify the correct man as father. CONCLUSION: For any subject receiving a genetic test in a child support office, predicting a 72 percent probability that the test will show paternity inclusion offers as good an estimate of the test outcome as a subgroup estimate based on a subject's age, race, and child characteristics.

Adult↗