The disability rights critique of prenatal testing asserts that genetic decision-making occurs in a context of misinformation and devaluation regarding the lives of people with genetic and/or prenatal diagnoses and that health professional attitudes reinforce this bias. This is a three-year project designed to explore the areas in which medical genetic advising is, or is not, informed by the lived experience of persons with genetic and/or prenatally diagnosable disabilities.
As our knowledge of the role of genetic and environmental factors in colorectal cancer grows, population screening and prevention efforts can be modified to incorporate this information. The goal of this study is to develop a framework for evaluating the clinical and economic tradeoffs that occur when considering gene-based strategies directed towards identifying persons at increased risk for colon cancer. We propose to use a unique and valuable resource - the Colorectal Cancer Family Registry (Seattle) - to inform our model. The specific aims are as follows:
Thousands of women have been tested for BRCA1/2 mutations to determine whether they harbor an inherited susceptibility to breast and ovarian cancer. Social and behavioral research conducted with this population suggests that communication of positive test results among mutation carriers to their high-risk family members can be an emotional and difficult task. Though genetic counseling protocols recognize the importance of this behavior to help control the spread of hereditary cancer within the kinship, few patient education resources are available to assist in this process.
The objective of this proposal is to begin to anticipate, analyze and address the ethical, legal and social implications of the use of new genetic information and technologies in a critical non-health care setting, namely the workplace. Genetic technology in the form of genetic testing of workers is already being used in the workplace, and its use can be expected to grow over time.
Young women with a positive BRCA1 and/or BRCA2 mutation test face a potentially deadly genetic legacy at a developmental critical time in their lives. After learning they are at a high risk for hereditary breast and ovarian cancer (HBOC) these women
Phenylketonuria (PKU) has played a prominent role in the development of modern genetic medicine. Individuals with this rare inherited disease are unable to metabolize phenylalanine, an essential amino acid found in all dietary proteins. In the absence of treatment, ingested phenylalanine and its metabolites accumulate to toxic levels in blood and other tissues, leading to serious neuropsychological abnormalities, including profound mental retardation.
The long-term objective of this project is to develop a comprehensive analysis of the emergence of a new technological regime in criminal identification constructed around genetic information. The project is interested in examining and understanding the implicit and explicit connections between archival, forensic, and diagnostic applications of genetic information in the criminal justice system. The project further seeks to elucidate the employment of predatory sex offenders as "poster criminals" for this new regime.
The Human Genome Hispanic Outreach Initiative will be an informal educational outreach project introducing Hispanics adults (25-49 years old) to basic science concepts, technologies, and societal issues related to human genome research. All programs and materials will be developed in the Spanish-language. The project combines the power of Spanish language mass media, in the form of daily, nationally broadcast, radio capsules, weekly longer-format radio segments, and editorial features in newspapers, with an 800 toll free information and referral Helpline and a resource website.
This 3-Year Project (Amended Application) seeks support for an innovative inter-regional public education model, in New York and Arizona, aimed at developing and using public libraries as centers for information, education and discussion of genomics and the Human Genome Project, with outreach emphasis on communities of color, Native Americans, and residents of isolated or low-income communities, to include ethical, legal and social issues and gene environment interactions.
This study entitled "Response of a Sample Population with the Deleterious HD allele" (RESPOND-HD) will examine ethical, legal, and social considerations that may affect the experience of persons following genetic testing for Huntington's disease (HD). HD is a genetic brain disease that typically begins in mid-life. Since predictive testing for HD was one of the first genetic tests available for later onset disorders, research in HD has traditionally helped define issues for ethical, legal and social aspects of genetic disorders.