New developments in biotechnology, such as the ability to identify the genetic basis of many single gene disorders, and the progress in identifying the genetic basis for more complex disorders have the potential for bringing about dramatic social changes. The present study, funded by NSF in 1988, is designed to trace the evolution of one set of such changes, namely, changes in attitudes and values related to the ability to diagnose genetic disorders without being able to cure them.
The Board on Biology of the National Research Council's Commission on Life Sciences is conducting a study of standards for forensic DNA typing. The development of recombinant DNA and other laboratory techniques to analyze complex genomes has resulted in an increasing array of procedures that have potential forensic applications. What once were basic laboratory techniques used to study genetic variability are now being used to link suspected criminals to crimes and to resolve paternity disputes.
Two short courses are being offered to doctoral, post-doctoral, and professional persons in the fields of ethics and genetics. The purpose is first to familiarize the ethicists with the fundamentals of genetics, and the geneticists with the fundamentals of ethics. The principal ethical and social issues raised by advances in molecular genetics will then be reviewed and analyzed.
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.
This conference was a collaboration of the Mid-Atlantic Regional Human Genetics Network (MARHGN) and the Alliance of Genetic Support Groups. Represented groups included consumers, genetics and other health professionals, industrial representatives, and ethicists.
This project will evaluate CF carrier screening during pregnancy as perceived by the patient, partner, and provider and assess the impact on health costs through analysis of cost-effectiveness. The research team will offer CF carrier testing to women of reproductive age to determine what proportion of women who are offered testing desire it, what proportion of tested women adequately comprehend the significance of the results, and what proportion of partners of the tested women decide to be tested themselves.
Student Pugwash, an international organization for undergraduate science students interested in science and society interactions, developed and implemented a working group within the 7th biennial Student Pugwash USA Conference on 'Ethics and the Use of Genetic Information on June 14-20, 1992. They will follow up the conference with related activities at campus chapters. The working group on Ethics and the Use of Genetic Information was one of the dedicated groups that met every day of the six-day conference to explore specific issues in depth.
This project investigates the area of newborn genetic screening programs and policies governing state sponsorship of genetic screening. Legal aspects of confidentiality and informed consent will be analyzed in the context of genetic science and medicine. A detailed analysis of state-by state statutory schemes will be undertaken in order to identify potential discriminatory policies and mechanisms for protecting privacy and for obtaining informed consent.
This project will assemble persons of diverse religious commitments to study the religious and ethical implications of genome research. Four regional inter-disciplinary study groups will produce preparatory papers for an international, ecumenical conference, in March 1992. The papers will be supplemented by several addresses with respondents, interpretations of case studies on recent genetic research, and by presentations on diverse religious points of view.
The rush of computers into our workplaces, homes, and institutions is drastically altering how we work and live, how we buy and sell, and with whom we communicate. Computers are obliterating traditional political and organizational boundaries, making time zones irrelevant, and bridging diverse cultures. They are fundamentally changing our culture, values, laws, traditions, and identities.