PROJECT NARRATIVE: Genetic counseling and health education are essential components of any early diagnosis program for sickle cell disease to ensure that risk results are effectively communicated by healthcare workers to those at-risk couples and their families. These are also important within the context of culture and health literacy because health beliefs and attitudes of the general public have a significant impact on health seeking behaviors that substantially influence reproductive decisions made by individuals and families.
This statute states that health and disability insurers may not deny applicants insurance coverage because of a diagnosis of sickle cell anemia.
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The objectives of this project are to determine the impact of the HGP on women, to examine whether this impact meets standards of fairness or gender justice, and to identify ways of avoiding or reducing the possibility of unfairness or gender injustice in the formulation of institution and social policies.
The purpose of this project is to contribute empirical data concerning the values, beliefs, and experiences of persons (or family members of persons) with genetic conditions regarding informational privacy and access to health insurance in the context of health care reform. These data then will be analyzed for their normative and legal implications for public policy. Using a cross-sectional design, data will be obtained by personal interviews with 450 persons affected by genetic conditions or their family members.
This project will investigate the nature of disability to articulate, for public policy, the purposes for which emerging testing capabilities ought ethically to be used. To analyze the nature of disability, the project participants--including experts from disability studies, medical geneticists, genetic counselors, philosophers, and others--will examine two distinctions that are not well addressed in the literature: the distinction between nondisease and disease traits, and the distinction between medical and social disabilities.
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.