Investigators' Abstract): This project will investigate the ethical views of geneticists in 34 nations. The project's purpose is provide information on which to base discussions of law, government policy, and professional ethics within the various nations that may collaborate on the Human Genome Initiative and between the United States and other nations. This project will serve as an extension of an ongoing survey of 1,300 geneticists and genetic counselors in the United States and 100 in Canada, under NICHD-CRMC-91-02. Using anonymous questionnaires developed with the assistance of a panel of geneticists, ethicists, consumers, and legal experts under the NICHD contract, the project will survey geneticists in 16 nations that participated in a 1985 survey of ethics and 18 nations where the genetics community has grown to sufficient size since 1985. Scientists from 20 of these nations are members of the Human Genome Organization (HUGO).Questions, presented as case vignettes, will include issues of privacy, full disclosure, indications for prenatal diagnosis, dilemmas of family DNA testing, screening in the workplace, screening for cystic fibrosis, embryo research, embryo selection, forensic uses of DNA, ownership of DNA, newborn screening, and directiveness/nondirectiveness in counseling. Demographic questions will include gender, specialty, whether trained in the United States, Canada, or United Kingdom, years in genetics, age, religious background, religiosity. Geneticist collaborators in each nation will distribute the questionnaires to approximately 2,319 geneticists, with an expected response rate of 75% (1,739). Data will be entered into an SPSSX computer program, will be checked for respondent bias and internal consistency, and will be compared with responses from 1,300 geneticists in the United States gathered under the NICHD contract. Data analysis will examine potential effects of personal and professional characteristics (e.g., gender, whether trained in United States) on responses to ethical dilemmas. Results will be distributed to the 34 collaborating geneticists, each of whom will write an article for a publication in her/his own country as part of the agreement to collaborate. The principal investigator and ethics consultant will prepare articles for United States journals in genetics, law, and public health, and will present results at the next International Congress of Human Genetics.
