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This study examined the impact of genetic testing for breast-ovarian cancer susceptibility on marital relationships and the quality of life of partners, as well as an examination of how partner responses influence participant distress during the testing process. Participants were members of families in which a disease conferring mutation was been identified and their partners of either gender. Interviews of couples were completed by telephone prior to receiving test results, as well as 1-, 6-, and 12-months after test disclosure. Results indicated that participants who received negative results report decreases in IES scores over the six month period after disclosure of test results, while participants notified that they were carriers of the BRCA genes did not show a significant decrease in IES scores over the same time period. Partners did not evidence significant changes in either distress. Participants who rated higher levels of relationship strain associated with the testing process reported significantly more distress. Participants who rated their partners as responding in an unsupportive manner also reported more distress. Results suggested that the psychological impact of genetic testing on spouses was not significant. However, how partners respond plays a key role in how testing participants handle the genetic testing process.
The present study is a prospective examination of the impact of genetic testing for breast-ovarian cancer susceptibility on marital relationships and the quality of life of husbands. Participants are women (age 18 and older) who are members of families in which a disease conferring mutation has been identified and their spouses. Interviews of husbands and wives are completed by telephone prior to receiving test results, as well as 1-, 6-, and 12-months after test disclosure. The preliminary data showed that wives (n=49) were more likely to use avoidance, have intrusive thoughts, and experience psychological distress compared to husbands (n=35). Wives also rated higher marital satisfaction. The husbands scored lower at baseline on four of the measures of interest (the presence of intrusive thoughts, general psychological distress, state anxiety, and marital adjustment) than at 1-month follow-up (n=6). The results of the preliminary analysis suggest that husbands may experience less psychological distress than wives at the baseline assessment (pre-mutation disclosure). However, the level of distress may increase for the husbands within one month of learning of the wife's mutation status. Further analysis when more disclosures have been completed will elucidate the association between mutation status outcome and these psychological measures.
The purpose of this study was to gain a better understanding of the relationship between couples‟ communication, marital satisfaction, and involvement in a support group for couples where one partner has a genetic mutation that places him/her at a significant risk for developing cancer. Researchers have investigated marital satisfaction in couples with illness, the role of support groups for couples with illness, and communication about illness. Research looking at genetic risk for illness, however, is limited, especially as it relates to couples‟ relationships. Breast cancer is the second most diagnosed cancer in women and ovarian cancer is the fifth most diagnosed cancer in women. About 10% of breast cancers and about 10% of ovarian cancers are related to a deleterious mutation, referred to as BRCA (Breast Cancer), that can be detected through a blood test. There are many decisions facing individuals and families in dealing with this BRCA mutation, and this stress can cause a great deal of strain on the couple relationship. Support groups are available to help wade through the vast amount of information. However, the role of these support groups on relationship satisfaction has not been studied. A correlational research design examined data from 62 couples who were recruited through a support group called FORCE (Facing Our Risk of Cancer Empowered). The couples recruited for the study required that at least one partner be diagnosed with the BRCA mutation. The couples were in a marital or co-habitating relationship. The couples were asked to complete a standardized instrument, the Marital Satisfaction Inventory-Revised, to examine issues impacting their relationship satisfaction. They also completed a demographic questionnaire that included several Likert scale questions regarding support for their BRCA status and involvement in a support group. John Rolland‟s Family Systems-Illness Model (1994) was the lens used in examining the data reported by the participants. The results from this study may provide some information about issues couples with a genetic risk for disease may be facing, how support groups impact coping with this genetic knowledge, and how communication patterns are impacted for these couples. The present study looked at the relationship of the level of involvement in a support group on communication patterns and marital satisfaction in couples where one partner has the BRCA mutation.
"Be informed. Be empowered. Be well." If you are concerned that the cancer in your family is hereditary, you face difficult choices. Should you have a blood test that may reveal whether you have a high likelihood of disease? Do you preemptively treat a disease that may never develop? How do you make decisions now that will affect the rest of your life? This helpful, informative guide answers your questions as you confront hereditary breast and ovarian cancer. Developed by Facing Our Risk of Cancer Empowered (FORCE), the nation’s only nonprofit organization dedicated to supporting families affected by hereditary breast and ovarian cancer, this book stands alone among breast and ovarian cancer resources. Equal parts health guide and memoir, it defines complex issues facing previvors and survivors and provides solutions with a fresh, authoritative voice. Written by three passionate advocates for the hereditary cancer community who are themselves breast cancer survivors, Confronting Hereditary Breast and Ovarian Cancer dispels myths and misinformation and presents practical risk-reducing alternatives and decision-making tools. Including information about genetic counseling and testing, preventive surgery, and fertility and family planning, as well as explanations of health insurance coverage and laws protecting genetic privacy, this resource tackles head-on the challenges of living in a high-risk body. Confronting hereditary cancer is a complex, confusing, and highly individual journey. With its unique combination of the latest research, expert advice, and compelling personal stories, this book gives previvors, survivors, and their family members the guidance they need to face the unique challenges of hereditary cancer.
Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.
Introduction to genetic counseling -- History of genetic counseling -- Practice definition and goals -- Characteristics of clients and genetic counseling -- Characteristics of counselors and genetic counseling -- Applying ethical theories to genetic counseling practice -- Conflict of interest and the code of ethics -- Relational genetic counseling -- Theories for genetic counseling practice -- Research in genetic counseling -- Genetic counseling in the genomic era.
Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.
A respected introduction to biostatistics, thoroughly updated and revised The first edition of Biostatistics: A Methodology for the Health Sciences has served professionals and students alike as a leading resource for learning how to apply statistical methods to the biomedical sciences. This substantially revised Second Edition brings the book into the twenty-first century for today’s aspiring and practicing medical scientist. This versatile reference provides a wide-ranging look at basic and advanced biostatistical concepts and methods in a format calibrated to individual interests and levels of proficiency. Written with an eye toward the use of computer applications, the book examines the design of medical studies, descriptive statistics, and introductory ideas of probability theory and statistical inference; explores more advanced statistical methods; and illustrates important current uses of biostatistics. New to this edition are discussions of Longitudinal data analysis Randomized clinical trials Bayesian statistics GEE The bootstrap method Enhanced by a companion Web site providing data sets, selected problems and solutions, and examples from such current topics as HIV/AIDS, this is a thoroughly current, comprehensive introduction to the field.
What can social science, and demography in particular, reasonably expect to learn from biological information? There is increasing pressure for multipurpose household surveys to collect biological data along with the more familiar interviewer-respondent information. Given that recent technical developments have made it more feasible to collect biological information in non-clinical settings, those who fund, design, and analyze survey data need to think through the rationale and potential consequences. This is a concern that transcends national boundaries. Cells and Surveys addresses issues such as which biologic/genetic data should be collected in order to be most useful to a range of social scientists and whether amassing biological data has unintended side effects. The book also takes a look at the various ethical and legal concerns that such data collection entails.
This is an edited book that addresses critical theoretical and methodological issues in the rapidly advancing field of emotion regulation. It presents empirical findings linking emotion regulation to individual and relationship functioning across the life span, while providing implications for clinical intervention, public policy, and future research. Contributors - who are nationally and internationally recognized for their expertise in social, developmental, and clinical disciplines - offer diverse perspectives on the role of emotion regulation processes in dysfunction and health. In addition to advancing the latest empirical developments, this volume will also be a prime resource for graduate students and practitioners working with children, couples, and families for whom emotion regulation difficulties are targets of clinical intervention.