Ethics and Genetics: A Survey of Approaches in the US and Canada

1600 geneticists and genetic counselors in the United States and 100 in Canada will be surveyed to determine their attitudes toward ethical dilemmas in genetic counseling, screening, and prenatal diagnosis situations. 900 obstetricians, pediatricians and general practitioners will receive similar questionnaires. 1300 patients at clinics in the U.S. and Canada will receive questionnaires before and after counseling. 1000 members of the general public will be surveyed by the Roper Organization, using 20 questions from the patient questionnaire. The data will make possible comparisons between geneticists, other professionals, patients, and the general public. The questionnaires will be anonymous. Questions presented as case vignettes will focus on the following issues related to the HGP: informed consent; access to test results by family members and third parties; the right 'not to know' test results; ownership of DNA; DNA banking; workplace screening; screening for susceptibility to common disorders; DNA fingerprinting; prenatal testing for late-onset disorders; eugenics; and testing children for adult-onset disorders.