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PubMed1994

Human genome research and the public interest: progress notes from an American science policy experiment.

This essay reviews the efforts of the U.S. Human Genome Project to anticipate and address the ethical, legal, and social implications of new advances in human genetics. Since 1990, approximately $10 million has been awarded by the National Institutes of Health and the Department of Energy, in support of 65 research, education, and public discussion projects. These projects address four major areas of need: (1) the need for both client-centered assessments of new genetic services and for improved knowledge of the psychosocial and ethnocultural factors that shape clients' clinical genetic experiences; (2) the need for clear professional policies regarding human-subject research, clinical practice standards, and public health goals in human genetics; (3) the need for social policy protection against unfair access to and use of personal genetic information; and (4) the need for improved public and professional understanding and discussion of these issues. The Human Genome Project's goal is to have defined, by 1995, policy options and programs capable of addressing these needs.

Advisory Committees↗
PubMed1997

UNESCO, genetics, and human rights.

In response to a mandate conferred on the International Bioethics Committee (IBC) of UNESCO in November 1993, the IBC has drafted a "universal declaration on the human genome and human rights," which will be considered by the General Conference of UNESCO in November 1997. This article discusses the development of the document and provides the text of the "revised preliminary draft" of the declaration.

Advisory Committees↗
PubMed2003

The high road to success: how investing in ethics enhances corporate objectives.

There is a growing gap between the tidal wave of information emerging from the Human Genome Project and other molecular biology initiatives, and the clinical research needed to transform these discoveries into new diagnostics and therapeutics. While genomics-based technologies are being rapidly integrated into pharmaceutical R&D, many steps in the experimental process are still reliant on traditional surrogate model systems whose predictive power about human disease is incomplete or inaccurate. There is a growing trend underway in the research community to introduce actual human disease understanding as early as possible into discovery, thereby improving accuracy of results throughout the R&D continuum. Such an approach (known as clinical genomics: the large scale study of genes in the context of actual human disease) requires the availability of large quantities of ethically and legally sourced, high-quality human tissues with associated clinical information.Heretofore, no source could meet all of these requirements. Ardais Corporation was the first to address this need by pioneering a systematized, standardized network for the collection, processing, dissemination and research application of human tissue and associated clinical information, all of which rest on the highest ethical standards. Based on a novel model of collaboration between industry and the academic/medical community, Ardais has created procedures, structures, technologies, and information tools that collectively compromise a new paradigm in the application of human disease to biomedical research. Ardais now serves as a clinical genomics resource to dozens of academic researchers and biopharmaceutical companies, providing products and services to accelerate and improve drug discovery and development.

Advisory Committees↗
PubMed1992

The Human Genome Project and the social contract: a law policy approach.

For the first time in history, genetics will enable science to completely identify each human as genetically unique. Will this knowledge reinforce the trend for more individual liberties or will it create a 'brave new world'? A law policy approach to the problems raised by the human genome project shows how far our democratic institutions are from being the proper forum to discuss such issues. Because of the fears and anxiety raised in the population, and also because of its wide implications on the everyday life, the human genome analysis more than any other project needs to succeed in setting up such a social assessment.

Advisory Committees↗
PubMed1999

Rewriting the "points to consider": the ethical impact of guidance document language.

Human gene transfer research has been under way for nearly 10 years, with few clinically significant results to date; yet public and professional expectations still run high. Exaggerated expectations and misconceptions about gene transfer research are attributable in part to the terminology used to describe this research, which is misleading but, in the absence of more precise language, is commonly used. In particular, use of the term "gene therapy" to describe gene transfer research and use of the term "patient" in place of "subject" tend to cause both professionals and the public to confuse research with proven effective treatment. Investigators preparing to engage in human gene transfer research must use the NIH guidance document, "The Points to Consider in the Design and Submission of Protocols for the Transfer of Recombinant DNA Molecules into the Genome of One or More Human Subjects," written by the Recombinant DNA Advisory Committee, to prepare for the submission of a research protocol. Several corrections in the terminology employed by this guidance document could help to avoid misconceptions about gene transfer research and clarify both the promise and the limits of the research enterprise for investigators and subjects.

Ethics, Medical↗
PubMed1990

Britain needs ELSI.

Explore the source record for details and available documents.

Advisory Committees↗
PubMed2004

The human genome, property of all: opportunities under the ALRC inquiry into gene patenting and human health.

This article highlights the revolutionary and dramatic implications brought about by the advances in genetics. Among the myriad of legal problems involved, gene patenting is regarded as one of the most controversial. In a critical evaluation of the current inquiry into gene patenting and human health, the author argues that the Australian Law Reform Commission falls short of a thorough recommendation by failing to grant due recognition to the Universal Declaration on the Human Genome and Human Rights. Starting with the fundamental premise that the human genome is the 'heritage of humanity', it is argued that the fruits of genetic research must flow back to humankind, and any law reform process must thereby ensure that the economic and health benefits of genetic research are available to all. Specifically, the Patents Act 1990 (Cth) should be amended to include the 'medical treatment' defence to patent infringement, following the lead of overseas jurisdictions. It should also incorporate an 'experimental use' defence to ensure an unhindered approach to research and development. In doing so, the patent law regime will be truly balancing the interests at stake, which will accommodate more fully Australia's domestic needs and international obligations.

Advisory Committees↗