Ethical Issues in Human Genetics - HILTON BRUCE

. .

Résumé :
In Hay 1970, the Fogarty International Center held a conference on Early Diagnosis of Human Genetic Defects, under the chairman? ship of Dr. Robert Morison.* This conference dealt primarily with the technical aspects of amniocentesis, analysis of genetic defects lJy cytogenetic and biochemical techniques, the culture of arnniotic fluid cells, the risks of amniocentesis, and the technical and ethical problems that arise during screening for defects in homo? zygotes and heterozygotes. The last session of this meeting was devoted to ethical issues that have arisen from the development of amniocentesis in combination with genetic analysis which enables a growing list of defects to be diagnosed as early as 16 weeks in pregnancy. At the close of this meeting in 1970, the chairman, in agree? ment with other mer.iliers of the conference, pointed out to the Fogarty International staff that with one exception, a lawyer, all the invited speakers had becn medical research workers well known as leaders in their various disciplines of genetics, pediatrics, obstetrics, cytology, research administration, and biochemistry.

Sommaire:
Ethical Issues Arising from the Possible Uses of Genetic Knowledge.- Survey of Counseling Practices.- Discussion.- Principal Discussant.- General Discussion.- The Concerns of Doctors and Patients.- Discussion.- Principal Discussant.- General Discussion.- Prenatal Genetic Diagnosis: Status and Problems.- Discussion.- The Significance of Genetic Disease.- Discussion.- Population Perspective.- Discussion.- The Meaning and Significance of Genetic Disease: Philosophical Perspectives.- Discussion.- Principal Discussant.- General Discussion.- Genetic Counseling and the Uses of Genetic Knowledge - An Ethical Overview.- Discussion.- Principal Discussant.- General Discussion.- Screening: A Practitioner's View.- The John F. Kennedy Institute Tay-Sachs Program: Practical and Ethical Issues in an Adult Genetic Screening Program.- Screening: An Ethicist's View.- Discussion.- The Human Right to Life: Its Nature and Origin.- Life and the Right to Life.- Implications of Prenatal Diagnosis for the Human Right to Life.- Implications of Prenatal Diagnosis for the Quality of, and Right to, Human Life: Society as a Standard.- Discussion.- Legal Rights and Moral Rights.- The Comparative Law of Genetic Counseling.- The Need for a Philosophical Anthropology.- Privacy and Genetic Information.- Discussion.- Sociological and Psychological Factors in Applied Human Genetics.- Parents in Genetic Counseling: The Moral Shape of Decision-Making.- Decision-Making and the Interests of Minority Groups.- Discussion.- Prospects for Future Scientific Developments: Ambush or Opportunity.- Social and Scientific Priorities in the Use of Genetic Knowledge.- Social and Scientific Priorities: Process and Content.- Discussion.- Mechanisms for Public Policy Decision-Making.- Discussion.- Principal Discussant.- Principal Discussant.- General Discussion.- Participants.