An increasing number of genetic carrier screening tests pose a challenge to adequate prenatal patient education. Clinic based computer patient education programs may be an effective response to this challenge. Before mounting a RCT to assess their effectiveness it is essential to study the feasibility of operating such programs in clinic settings. We propose a feasibility study.
The purpose of this project is to produce several professional articles that identify and analyze the ethical, legal, and social issues that surround screening and altering human embryos, thus helping society and relevant decision-makers come to grips with these issues. Year 1 of the project will focus on embryo screening as a form of negative genetic selection, and its use in screening embryos for transfer based on reasons other than avoidance of severe genetic disease, i.e., for susceptibility mutations, for HLA matching, for gender, and for non-medical traits.
This proposal addresses the question posed in the RFA for the ELSI program 'Will continuing research in molecular biology and functional genomics affect how individuals and society view the relationship of humans to one another and to the rest of the living world?' Specifically, the purpose of this application is to address the impact of current and future knowledge of genetics and genomics on the scientific and cultural definition of race, an issue for the Human Genome Project (HGP).
New screening technologies and new knowledge about the origin and treatment of genetic conditions are changing the genetic screening environment. This project will focus on the impact of these changes on newborn screening, an on-going public health program that tests virtually all newborns for genetic disorders. The long-term objective is to provide guidance to the professionals, policymakers, and members of the public who must make decisions about newborn screening in this new environment. The specific aims are:1.
Some socially identifiable groups have historically perceived genetic research with considerable mistrust. For this reason, and to better understand the salience of community-based ethical, legal and social issues (ELSI) with emerging genetic knowledge, a need exists to systematically engage communities simultaneously with conducting human genetic research. Community engagement processes also intended to provide protection assurances from potential harms by identifying and minimizing group perceived risks that may be acute or ongoing barriers to genetic research participation.
The overall goal is to study the licensing policies and practices of 24 academic institutions regarding their DNA-based patents. The proposed project is conceived as a pilot study that will test the feasibility of conducting a more comprehensive follow-up study of such policies and practices. Specific aims are as follows:
-provide a clear, concise definition of the phrase 'DNA-based patents';
-analyze DNA-based patents into subtypes, using categories that are useful for understanding the policies and practices under which they are commercialized;
This pilot project explores the values, attitudes and beliefs of affected adults and parents of affected youths about genetic testing for obesity. Obesity is an extensive problem in health care, with a rapid rise in prevalence among both adults and children during the last decade. This highly stigmatizing condition has proved especially difficult to treat in adults using behavioral approaches. Recent evidence suggests it may be genetically encoded, and in the future, genetic tests may be useful for identifying appropriate pharmacological treatment and/or for preventive screening.
This is a proposal for undertaking community engagement, donor collection, and follow-up in four predominantly African American towns in the Oklahoma City metropolitan area. The precise four towns are not yet specified as there is interest in this project among a larger number of appropriate municipalities.
The Haplotype Map (HapMap) Project is an international collaborative project to produce a haplotype map of the human genome. The HapMap is expected to be a key resource for more efficient genome-wide scans associating genetic variation with phenotypic variation, particularly in disease risk and drug response. The overall project will include a number of components, including community engagement, collection of blood samples from various populations, genotyping of these samples, and analysis of the resulting data.
The aim of this proposal is to add to the limited store of knowledge available about public values and attitudes relevant to various aspects of genetic technology. The proposal has two specific aims. The major aim is to investigate experimentally the determinants of people's beliefs about the relative contribution of heredity and environment to differences in such behavioral characteristics as aggression, shyness, and alcoholism.