Rubén Lisker1, Alessandra Carnevale. 1. Dirección de Investigación, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, México, DF, México. rlisker@quetzal.innsz.mx
Abstract
BACKGROUND: The discussion of ethical issues in the practice of medical genetics is quite recent in Mexico. However, in the present report we were able to compare the results obtained with the same instrument in two surveys performed with a 12-year interval. METHODS: A semistructured questionnaire including 52 questions that explore many different situations in the form of case vignettes related to ethical dilemmas was sent on two occasions to geneticists certified by the Mexican Board of Human Genetics. The first survey was performed in 1993, obtaining a response rate of 72% (64 individuals) and the second in 2005 with a 61% response rate (86 individuals). The areas explored were fairness of access to genetic services, full disclosure of all relevant information, respect for parental choices, protection of patients' privacy, use of prenatal diagnosis only for information about the health of the fetus, voluntary vs. mandatory screening and patients' confidentiality vs. the defense of third party interests. RESULTS: All questions analyzed in the paper were answered by at least 80% of the geneticists surveyed, although in many instances their experience with the situation explored was limited. The complete results of the 2005 survey are given in the text and tables, whereas the 1993 results are used mainly for comparison and given in full only when practical. There was a tendency to answer general questions one way and later change opinions when confronted with specific cases. There was a clear paternalistic attitude and a generalized opinion that one of the goals of medical genetics is to diminish the proportion of individuals with genetic diseases, not for eugenics reasons, but to avoid suffering of the patients and their families. CONCLUSIONS: Comparison of both surveys clearly shows a tendency towards increasing respect for privacy and autonomy of the patients.
BACKGROUND: The discussion of ethical issues in the practice of medical genetics is quite recent in Mexico. However, in the present report we were able to compare the results obtained with the same instrument in two surveys performed with a 12-year interval. METHODS: A semistructured questionnaire including 52 questions that explore many different situations in the form of case vignettes related to ethical dilemmas was sent on two occasions to geneticists certified by the Mexican Board of Human Genetics. The first survey was performed in 1993, obtaining a response rate of 72% (64 individuals) and the second in 2005 with a 61% response rate (86 individuals). The areas explored were fairness of access to genetic services, full disclosure of all relevant information, respect for parental choices, protection of patients' privacy, use of prenatal diagnosis only for information about the health of the fetus, voluntary vs. mandatory screening and patients' confidentiality vs. the defense of third party interests. RESULTS: All questions analyzed in the paper were answered by at least 80% of the geneticists surveyed, although in many instances their experience with the situation explored was limited. The complete results of the 2005 survey are given in the text and tables, whereas the 1993 results are used mainly for comparison and given in full only when practical. There was a tendency to answer general questions one way and later change opinions when confronted with specific cases. There was a clear paternalistic attitude and a generalized opinion that one of the goals of medical genetics is to diminish the proportion of individuals with genetic diseases, not for eugenics reasons, but to avoid suffering of the patients and their families. CONCLUSIONS: Comparison of both surveys clearly shows a tendency towards increasing respect for privacy and autonomy of the patients.