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PubMed2006

Defining the spectrum of genome policy.

Many achievements in the genome sciences have been facilitated by policies that have prioritized genome research, secured funding and raised public and health-professional awareness. Such policies should address ethical, legal and social concerns, and are as important to the scientific and commercial development of the field as the science itself. On occasion, policy issues take precedence over science, particularly when impasses are encountered or when public health or money is at stake. Here we discuss the spectrum of current issues and debates in genome policy, and how to actively engage all affected stakeholders to promote effective policy making.

Advisory Committees↗
PubMed1998

The Human Genome Project after a decade: policy issues.

The Human Genome Project began a decade ago, its early momentum fueled by two reports. A report from the National Research Council (NRC) in February 1998 endorsed the project and provided the basis for the first joint plan by the National Institutes of Health (NIH) and the Department of Energy (DOE). A report from the Office of Technology Assessment (OTA) in April 1988, provided Congress with a means to assess the roles of NIH and DOE. Both reports highlighted the importance of genomics and emphasized the need for a concerted research program. The committees did not predict the large investment of private funds or the extensive patenting of sequences, and they underestimated the rate of progress. Overall, though, the consensus-building provided by the committees helped to set the blueprint for one of the great success stories in modern biology.

Advisory Committees↗
PubMedDate not supplied

National policy development for the clinical application of genetic diagnostic technologies. Lessons from cystic fibrosis.

In recognition of the earlier experiences with genetic diagnostic services and in anticipation of a greater potential for genetic testing for presymptomatic disease and disease susceptibility, this article provides an analysis of policy development for cystic fibrosis carrier screening. The deficiencies of relying on an extemporaneous model for health policy development are described. Preferably, an evidentiary model, based on the evaluation of clinical research and incorporating professional and public attention to underlying normative issues, should define the standard of care. Appropriate procedural mechanisms should be established at both state and federal levels to prevent the unnecessary confusion, expense, and personal or social harms likely to result from a completely unrestrained application of developing genetic technologies or continuing ad hoc responses to rapid increases in genetic diagnostic capabilities. A broadly constituted national advisory commission on the ethical, legal, and social implications of the Human Genome Project would provide an important locus for national decision making and may offer an efficient mechanism for implementing the evidentiary model, promoting public involvement at a time when social policy decisions must be made to restructure the health care system to be more sensitive to issues of access, allocation, and costs.

Advisory Committees↗
PubMed1993

Ethics and the Human Genome Project.

This article provides an overview of ethical issues in genetic testing and screening as they are currently considered in relationship to the Human Genome Project. Previous landmark reports and policy recommendations on genetic testing and screening are briefly described. The goals and research interests of the joint National Institutes of Health/Department of Energy Ethical, Legal, and Social Working Group of the Human Genome Project are outlined. To provide an example of one method by which ethical issues in genetics may be addressed, the ethical framework and practical aspects of a clinical ethics research project at the University of Washington, Seattle, are described. Finally, future directions for the study of ethical and social issues related to genetic testing and screening programs are suggested.

Advisory Committees↗
PubMed2002

Genetic testing considerations for oral medicine.

The availability and integration of genetic information into our understanding of normal and abnormal growth and development are driving important changes in health care. These changes have fostered the hope that the availability of genetic information will promote a better understanding of disease etiology and permit early, even pre-symptomatic diagnosis and preventative intervention to avoid disease onset. Expectations for this proactive health care approach are fueled by the technological and scientific advances that have fundamentally changed how we perceive human diseases. Among the clinical applications of this information, genetic testing applications are likely to expand significantly and may broadly impact the clinical practice of dentistry. In this changing environment, it is vital that dental care providers, policymakers, and consumers become aware of important issues related to genetic testing and the incorporation of genetic information into the diagnosis and treatment of common diseases that involve the oral cavity. We must also guard against unrealistic expectations and calls for genetic tests that are not valid. To realize the promise of this new molecular genetics, we must understand the possibilities and responsibly incorporate newly emergent technologies into the evolving discipline of dentistry. This paper overviews many of the important issues that need to be considered in the application of genetic testing to oral medicine.

Advisory Committees↗
PubMed1994

Behaviour modification by genetic intervention--the law's response.

The Human Genome Initiative has stimulated research worldwide into mankind's genetic structure. It has led to identifying and understanding the function of many genes which cause illnesses, deformities, organ malfunctions and, more recently, behavioural aberrations. The science of gene therapy has developed in tandem and has initiated therapeutic treatment by the replacement of defective genes in humans. In the legal sphere guidelines for the application of gene therapy have been recommended by the Council of Europe, the United Kingdom, France, Denmark and the United States amongst others. South Africa has adopted the guidelines of the American National Institutes of Health. It is however submitted that third world countries such as South Africa have many other more basic health care problems on which to spend their limited resources despite having the technology to practise gene therapy.

Advisory Committees↗
PubMed1991

Mapping the human genome: some thoughts for those who say "There should be a law on it.

... It appears from this discussion that the most effective method of regulating the problems that may arise from the human genome project is to concentrate, not on the research involved in the project, but rather on the uses that may be made of the information gained from it. Furthermore, there is already a good deal of legislation and administrative machinery that is directly or incidentally relevant to the matters in question. This should obviously be used as much as possible, rather than new legislation, to reduce bureaucracy, overlapping provisions and costs.

Abortion, Therapeutic↗