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PubMed1994

Predictive testing for Huntington disease: nonparticipants compared with participants in the Dutch program.

Attitudes toward predictive testing programs, in individuals who choose not to undertake the test (i.e., nonparticipants), may be influenced by fears of an unfavorable result. The reasons not to participate in predictive testing programs for Huntington disease (HD) were studied in members of the Dutch Huntington Association who were at 50% risk. They had completed the same baseline psychological questionnaires as had the participants in the Dutch DNA-testing program. The group of 34 nonparticipants was similar to the tested participants in the Dutch predictive testing program, with respect to average age (31.1 years), male:female ratio (1:2), the frequency of a stable relationship (70%), and level of education (67% had high school education or higher). Testing did not seem to be a realistic option for nonparticipants for improving their quality of life. In comparison with participants, nonparticipants had a significantly more pessimistic outlook on themselves and their futures. When asked to consider the possibility of an unfavorable result, nonparticipants expected more difficulties in their families; more problems for their children, their partners, and themselves; a lowered quality of life; and, more often, a depressive reaction. In their opinion, a favorable result would reduce the problems for their children but not for themselves, a result that was found more often in the nonparticipant than in the participant group. Nonparticipants learned about their being at risk for HD during adolescence (mean age 15.6 years), whereas participants did so in adulthood (mean age 22.7 years). The nonparticipants' attitude toward the test might be explained by the influence of HD in the adolescent's separation-individuation process and personality development. This finding could be relevant for future research and for the discussion about testing minors for delayed-onset disorders.

Adult↗

PubMed1990

Ethical and legal dilemmas arising during predictive testing for adult-onset disease: the experience of Huntington disease.

The goal of predictive testing is to modify the risk for currently healthy individuals to develop a genetic disease in the future. Such testing using polymorphic DNA markers has had major application in Huntington disease. The Canadian Collaborative Study of Predictive Testing for Huntington Disease has been guided by major principles of medical ethics, including autonomy, beneficence, confidentiality, and justice. Numerous ethical and legal dilemmas have arisen in this program, challenging these principles and occasionally casting them into conflict. The present report describes these dilemmas and offers our approach to resolving them. These issues will have relevance to predictive-testing programs for other adult-onset disorders.

Abortion, Eugenic↗

PubMed1998

Predictive testing for Huntington's disease: II. Qualitative findings from a study of uptake in South Wales.

Semi-structured interviews were conducted with a cohort of 22 test applicants who requested Huntington's disease (HD) predictive testing in South Wales, and a random sample of 32 non-requesters, drawn from the South Wales HD register. Apart from identifying differences between the groups, the study afforded the opportunity to listen, at length, to at-risk individuals' accounts of living at risk and their thoughts about predictive testing and genetic services. Emergent themes included difficulties in family communication and the uncertainties inherent in being at risk and undergoing testing. Important factors in decision making about testing were: moral imperatives to clarify one's genetic status: views about the controllability of the future; family attitudes and norms; and the impact of a test result on family members. At-risk individuals' perceptions of the genetics service were that contact with the service would result in pressure to be tested and a need for test applicants to present a favourable view of coping capacities to secure testing. In addition, there was an expectation of ongoing contact with HD families at the initiative of the service providers. Implications of the findings for the way in which predictive testing services are structured and introduced to the at-risk population are discussed.

Adult↗

PubMed1987

Intended use of predictive testing by those at risk for Huntington disease.

Huntington disease (HD) is a late-onset genetic disorder that is incurable and undetectable until the onset of symptoms. A marker for the gene that causes HD was recently discovered that will lead to a predictive test. The purpose of this research was to assess the attitudes, beliefs, and behavioral intentions concerning the impending predictive test by those at risk for HD. Results from a sample of 56 at-risk individuals indicated that a majority (65%) favored using the presymptomatic test and would encourage their adult children to use it as well. Fewer but still a substantial percentage of respondents would use the prenatal test (42%) and would test at-risk minors (35%). Surprisingly, knowledge about predictive testing was quite low and a majority of those least knowledgeable about predictive testing intended to use the test. These findings emphasized the need for outreach and prevention efforts to prepare the at risk and specialized programs of genetic counseling and follow up to accompany predictive testing.

Adult↗

PubMed1997

Reactions to predictive testing in Huntington disease: case reports of coping with a new genetic status.

A predictive testing program for Huntington disease has been available in Stockholm, Sweden since October 1990. Psychosocial assessments were performed throughout the testing program to evaluate the impact of the risk situation itself and the effect of predictive testing, and to identify those individuals who were most vulnerable to severe stress and anxiety reactions. All subjects underwent neurological, neuropsychological, and psychiatric examinations. Individuals undergoing predictive testing were assessed twice by a genetic counsellor before receiving their results, and at 10 days (gene carriers only) and then 2, 6, 12, and 24 months after receiving the results. The process of coping with the test results and the psychological adjustment to knowledge about new genetic status have been shown to vary considerably. In this report, we describe the results obtained from two gene carriers and two noncarriers. The four persons chosen represent different ways of coping with the outcome of the test and of integrating knowledge about their genetic status into everyday life. These cases illustrate common themes and recurrent problems often surfacing during the counselling and testing process. The longitudinal evaluations provide information about the impact, adaptation, and long-term effects of living with a new genetic status.

Adaptation, Psychological↗

PubMed1993

Predictive testing for Huntington's disease: after the gene. The United Kingdom Huntington's Disease Prediction Consortium.

The discovery of a mutation responsible for Huntington's disease (HD) offers the possibility of accurate predictive testing, as well as hope for treatment or prevention of this disease. We urge caution in the use of this new test as considerable ethical and counselling problems still exist, and new issues have arisen. The current guidelines for predictive testing should still apply, since it remains vital that subjects and their families have time to come to terms with the diagnosis of HD, and the implications of testing. Mutation analysis may allow the diagnosis of HD in isolated cases, or reverse a test result produced using linkage. Problems will arise as those at 25% risk may now receive a result despite the lack of support of their parent at 50% risk who may not wish to have their own status defined. In addition, couples who seek the exclusion test in pregnancy may find it difficult to investigate the pregnancy without producing information on themselves. Different centres should cooperate in maintaining the confidentiality of family members, ensuring that adequate counselling is given before results are produced which may affect the wider family.

Family↗

PubMed1990

Opinion: predictive testing for Huntington disease in childhood: challenges and implications.

Predictive testing for HD strongly highlights the need for autonomy and the need for each individual to decide about his or her willingness-or unwillingness-to obtain genetic information predictive of the future outcome. In respect of this principle, testing for minors should not be offered at the request of a third party, and prenatal testing which would result in the birth of a child at increased risk for HD should, where possible, be avoided. If we accede to the wishes of the parents for their children to be tested, we will have broken the primary principles of confidentiality, privacy, and individual justice that are owed to those children. This could be the thin edge of a wedge which could result in adoption agencies, educational institutions, insurance companies, and other third parties demanding genetic testing for another individual. Despite years of careful planning, predictive testing for HD is turning out to be more complex and challenging than ever expected. We need a great deal of care and concern in developing our response to this challenge. Careful long-term assessment and documentation of the impact of such testing is needed, so that the appropriate guidelines can be developed, guidelines which both protect families with HD and at the same time give individuals the opportunity to participate in predictive testing programs.

Adoption↗

PubMed2000

Psychosocial impact of predictive testing for Huntington disease on support persons.

Although a support person is required by many centers during the predictive testing protocol for Huntington disease (HD), little is known about the psychosocial impact of predictive testing on persons serving in this role. Eighteen adults who were support persons during predictive HD testing in one HD testing center completed a semi-structured interview to describe their experiences. Participants also completed the Impact of Events Scale (IES) to assess perceptions of emotional distress regarding predictive testing and the State Anxiety Scale of the State Trait Anxiety Inventory (STAI) to assess anxiety regarding the interview. State anxiety scores were similar to normative values for working adults. Although support persons for individuals with a positive gene test scored higher on all measures of the IES than those who were support persons for persons with negative gene mutation results, these differences were not statistically significant. Support persons identified aspects of the protocol that did not fit their needs, perceived the testing process as extending into subsequent caregiving responsibilities when the test was positive, and were uninformed regarding specific caregiving issues for family members with the gene mutation. The impact of the testing experience appeared to be most intense for those support persons who were at-risk offspring of probands. Findings suggest that individual assessment of support person needs may allow more focused counseling of support persons during predictive genetic HD testing. Collaboration with health care providers may facilitate symptom management following testing.

Adaptation, Psychological↗

PubMed1982

International Commission for Protection against Environmental Mutagens and Carcinogens. ICPEMC working paper 2/6. An appraisal of predictive tests for carcinogenicity.

The history of the development of the DNA damage-induced somatic mutation theory of cancer induction, and of the development of predictive tests for carcinogenicity, is reviewed briefly. On the basis of present information, it is concluded that all predictive tests for carcinogenicity of chemicals should be based primarily on validation using established carcinogens and non-carcinogens. The validation studies reported frequently suffer from limitations in design. Predictive tests pass through three stages during validation. First, the developing tests have been subjected to limited validation but show sufficient promise to warrant further development. 10 such tests are identified from the 100 tests reported in the literature. The second stage test can be considered as developed, when adequate validation studies have been completed to enable the selection of a test for its particular performance criteria. Only 9 such tests were identified of which only 1 still requiring further development can be considered as a useful primary screening test. 2 further tests can be considered as confirmatory tests to be used as a back-up to bacterial mutation assays. Finally, the established tests have been validated on a large scale in several laboratories. At present there is only one established test, namely the Salmonella/microsome test (Ames test). A second assay, based on E. coli, may be considered in this category because of its similarity to the Salmonella test. In conclusion, some guidelines for using predictive tests for regulatory and other purposes are given.

Animals↗

PubMed2005

Surveillance behavior and prophylactic surgery after predictive testing for hereditary breast/ovarian cancer.

This article describes breast or ovarian cancer surveillance practices and prophylactic surgery involving 34 carriers and 34 noncarriers of a BRCA1/2 mutation within the year after predictive testing. It also evaluates the effect of the predictive test result on cancer screening practices and provides insight into factors important in the decision-making process about health-related behavior. Within the year following predictive testing, 9% (3 of 34) of the carriers decided to have a prophylactic mastectomy. The majority of the carriers was adherent to recommendations regarding regular cancer surveillance following predictive testing. Furthermore, carriers' adherence to clinical breast examination and mammography recommendations significantly increased from pre- to posttest and was significantly higher than noncarriers' utilization after testing. Of the carriers eligible for prophylactic salpingo-oophorectomy, 75% had this operation. All carriers who were advised to have regular surveillance of the ovaries had ovarian ultrasounds. The authors gave major attention to factors playing a part in the decision-making process about health-related behavior.

Adult↗

PubMed1984

Predictive tests for the response to cancer chemotherapy: limitations related to the prediction of rare events.

The reliability of a predictive test may be characterized by its sensitivity and specificity. The probability that a predicted event will actually occur depends on these indexes as well as the frequency of the predicted event. If such a test is used to predict for the therapeutic effect of single-agent chemotherapy in cancer patients, its predictive value is markedly affected by a generally low therapeutic efficacy in an unselected population.

Antineoplastic Agents↗

PubMed1988

Intentions to use predictive testing by those at risk for Huntington's disease: implications for prevention.

Huntington's disease (HD) is a late onset, genetic disorder that is incurable and undetectable until the onset of symptoms. A marker for the gene that causes HD was recently discovered which will lead to a predictive test. The purpose of this research was to assess the knowledge, attitudes, beliefs, and behavioral intentions concerning the impending predictive test by those at risk for HD. Results indicated that a majority of participants favored using the test presymptomatically and would encourage their adult children to use it as well. Fewer participants favored using the predictive test prenatally or on minors. Characteristics that best differentiated those who intend and do not intend to use predictive testing were identified and discussed. Suggestions for interventions were presented with an emphasis on outreach and prevention programs designed to prepare HD families for the difficult decisions the predictive test will precipitate and the subsequent impact of those decisions.

Adult↗

PubMed1979

Low allergenicity of triclosan. Predictive testing in guinea pigs and in humans.

Allergic predictive testing with triclosan (Irgasan DP 300) has been carried out in guinea pigs and in humans in order to evaluate its potential allergenic properties. Triclosan, an antimicrobial agent increasingly used in the cosmetic industry (concentration 0.5%) has recently appeared on the market at a higher concentration (3%) in association with flumethasone pivalate as an antimicrobial and antimycotic cream (Logamel). The results of predictive tests for allergy in guinea pigs (1 of 20 positive) and in humans (none of 20 positive) indicate that the sensitization index of triclosan is very low, which is in good accord with some reports from the literature. These underline the rarity of cases of allergic contact dermatitis to triclosan considering its widespread use in the cosmetic industry.

Administration, Topical↗

PubMed2000

Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling.

Since the identification of two breast-ovarian cancer susceptibility genes (BRCA1/2), predictive testing for hereditary breast/ovarian cancer (HBOC) has been available. Given the complexity and uncertainties of HBOC and the potential impact of predictive testing on psychological well-being, we offer the test applicants a combination of information-oriented and psychological counselling. In this paper, we describe the multidisciplinary approach for predictive testing for HBOC as a clinical service in Leuven, hereby focusing on psychological and decision counselling practice. Attention is paid to the theoretical framework used for pre-test psychological counselling in Leuven. We discuss three important interacting dimensions of psychological counselling: individual emotional support, decision counselling and support of the family communication process. Decision counselling consists of an evaluation of the cognitive and the emotional processing of the information given and strategies and resources for coping. This serves as a starting point to facilitate free informed decision making. Scenario development is used as a decision aid.

Belgium↗

PubMed1991

Predictive testing for HD: maximizing patient autonomy.

In "The Ethical Justification for Minimal Paternalism in the Use of the Predictive Test for Huntington's Disease," David DeGrazia attempts to provide a rational analysis of the exclusion criteria and counseling requirements for predictive testing proposed by the Huntington's Disease Society of America (HDSA). The need for analysis is clear. These protocols and procedures for predictive testing for Huntington's disease (HD) are being used as models for testing programs for any number of genetic conditions. DeGrazia concludes that the HDSA guidelines are reasonable, a conclusion with which I agree. However, I believe that DeGrazia, by placing his analysis within the framework of autonomy versus paternalism, overlooks both the fundamental rationale for the testing procedures and the true barriers to testing.... The difficulties encountered during the testing process clearly demonstrated the failure of abstract principles to deal with real life.

Counseling↗

PubMed1999

Potassium leak test predicts outcome in interstitial cystitis.

PURPOSE: We tested whether the potassium leak test predicts the outcome of therapy with heparinoids and antidepressants in interstitial cystitis. MATERIALS AND METHODS: We retrospectively reviewed the records of 38 evaluable patients with interstitial cystitis who underwent a potassium leak test at the initial evaluation and who were treated intravesically with heparin or oral sodium pentosan polysulfate for a minimum of 6 months. All but 1 patient were also treated with tricyclic antidepressants. Changes in average pain score during voiding, urinary frequency and nocturia were evaluated. RESULTS: The potassium leak test was positive and negative in 23 and 15 patients, respectively. There was no significant difference in the 2 groups at baseline in regard to the male-to-female ratio, patient age, years of symptoms, pain score, urinary frequency, nocturia or anesthetic capacity. After a minimum of 6 months of therapy patients in whom the potassium leak test was positive were more likely to have improvement than those in whom it was negative, as shown by a decrease of greater than 25% in pain score (78 versus 40%, p = 0.01), frequency (83 versus 47%, p = 0.02) and nocturia (83 versus 53%, p = 0.05). However, potassium leak test results showed no significant difference at the 50% decrease level in pain score, frequency or nocturia. CONCLUSIONS: The potassium leak test may predict outcome in patients with interstitial cystitis who are treated with combined heparinoid and tricyclic antidepressant medication.

Anti-Inflammatory Agents, Non-Steroidal↗

PubMed2005

High distress in parents whose children undergo predictive testing for long QT syndrome.

OBJECTIVES: To assess the psychological effect of predictive testing in parents of children at risk for long QT syndrome (LQTS) in a prospective study. METHODS: After their child was clinically screened by electrocardiography and blood was taken for DNA analysis, and shortly after delivery of the DNA test result, 36 parents completed measures of psychological distress. RESULTS: 24 parents were informed that at least one of their children is a mutation carrier. Up to 50% of the parents of carrier children showed clinically relevant high levels of distress. Parents who were familiar with the disease for a longer time, who had more experiences with the disease in their family and who received positive test results for all their children were most distressed. CONCLUSIONS: Predictive ECG testing together with DNA testing has a profound impact on parents whose minors undergo predictive testing for LQTS.

Adolescent↗

PubMed2006

Depression and suicidal ideation after predictive testing for Huntington's disease: a two-year follow-up study.

The present study reports a two-year follow-up of psychological effects of predictive testing for Huntington's disease. Questionnaires assessing depression, general health, well-being, self injurious behavior, life satisfaction, and lifestyle were completed by 35 carriers and 58 non-carriers before the predictive test, and 2, 6, 12, and 24 months afterwards. Both carriers and non-carriers showed high suicidal ideation before the predictive testing. Depression scores and frequency of suicidal thoughts increased for carriers, compared to non-carriers, over time. There were no differences regarding life satisfaction or life style between carriers and non-carriers. Predictive testing was beneficial in reducing overall ill-health symptoms and increasing well-being for those initially expressing concern about Huntington's disease. The importance of assessing suicidal ideation and of continuing to provide adequate support is emphasized.

Depression↗