To complement his theoretical work, Dr. Asch will also be leading a project to assess the amount of information that couples desire about the risk of CF. The appropriate timing of CF carrier screening, as well as the amount that should be performed, will be investigated. The research team will analyze the decision-making processes of couples who are offered CF carrier testing one partner at a time. In the event of a negative result for the first partner, the team will determine whether or not the couple chooses to have the second partner tested.

The long term objectives of this project are to develop an integrated package of public and professional education materials that would meet the pre-screening needs for education and informed consent of the public, and for the professional offering the testing. The materials would utilize innovative technology such as interactive computers, and would be developed for the average reader.

This project will focus on individuals and families receiving care from a health maintenance organization. The assessment of the ethical and policy issues in CF screening seeks to determine the level of interest in learning more about CF, and factors that distinguish those who are interested in participating in a CF education program from those who are not.

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 objective of this research is to conduct and evaluate a pilot program for the simultaneous screening of carriers for CF, Tay Sachs Disease (TSD) and Gaucher's Disease (GD) in the Ashkenazi Jewish population. This ethnic group is unique since 95 percent of CF and GD carriers can be detected, providing the rationale to introduce CF and GD screening in conjunction with TSD carrier screening programs.

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 explore the breadth of current efforts to structure public health practice to respond to advances in genetics, analyzing these efforts for their consistency with existing public health law and policy and for their responsiveness to the lessons of history. The roles of public health institutions in reproductive genetic testing, state-run newborn screening programs, and predictive genetic testing will receive particular emphasis.

In this study, the Education Development Center, Inc., in collaboration with the International Association of Cystic Fibrosis Adults (IACFA), Temple University, St.

This project will develop video based educational materials to inform new parents about implications of DNA testing for disorders evaluated in the newborn screen, using Cystic Fibrosis (CF) Newborn Screening as a model. The investigators will optimize the impact of the video content based on focus group and post-video evaluation feedback.

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.