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Human Genome News Archive Edition

Vol.12, Nos.1-2   February 2002

 

Available in PDF
 
In this issue...

In the News

Special Meeting Report

Web, Publications, Resources

Funding Information

Meeting Calendars & Acronyms

  • Genome and Biotechnology Meetings
  • Training Courses and Workshops
  • Acronyms

Genes, Justice, and Human Rights

International Judiciaries Consider Opportunities and Challenges of New Technologies

From left, Justice Michael Kirby (Supreme Court of Australia), Vijaya Melnick (University of the District of Columbia), and Judge Barbara Rothstein (U.S. District Court for the Western District of Washington).

In an increasingly globalized world, the impact of scientific discoveries and applications quickly transcends national boundaries through the rapid exchange of products, people, and ideas. Such advances in the genomics arena have spurred impassioned debate on complex and often contentious issues likely to affect every corner of the world. Questions concern privacy and ownership of human genes; access to revolutionary agricultural, reproductive, and medical technologies; the presence of genetically enhanced products in the world's food supplies; the exploitation of natural resources, including human DNA sequences, from indigenous populations; and the release of novel organisms into the environment.

Some 80 judges and 40 scientists from Europe, Asia, Canada, and the United States gathered in July 2001 in Kona, Hawaii, for the Courts First International Conversation on EnviroGenetics Disputes and Issues. They considered the potential impact of genomics on courts as well as possible mechanisms for facilitating dispute resolution.

The new paradigms faced in global economics and communications offer new opportunities for discovering and processing truth, Artemio Panganiban (Justice, Supreme Court of the Phillipines) said, but are the judiciaries of the world ready to greet this challenge?

“The complexity of the science these days cries out for international cooperation and judicial education,” said Claire LHeureux-Dube (Justice, Supreme Court of Canada). She noted that “the law cannot lag behind science; in the best-case scenario they will complement each other and thus serve the public interest optimally.”

The meeting was cochaired by U.S. District Court Judges Andre Davis (District of Maryland) and Gladys Kessler (District of Columbia). Meeting cosponsors were the DOE Human Genome Program (HGP) and the NIH National Institute of Environmental Health Sciences (NIEHS).

The conference was organized by the Einstein Institute for Science, Health, and the Courts (EINSHAC), under the leadership of Franklin Zweig. An educational and research organization serving the judiciary, EINSHAC is a longtime grantee of the Ethical, Legal, and Social Issues program of the DOE HGP.

Surveying a Changing Terrain
The meeting flowed around a series of plenary sessions, science workshops, and breakout discussion groups. In the opening session, NIEHS Director Kenneth Olden observed that the Human Genome Projects output presents a major societal challenge to use the new information and technologies to improve the quality of human existence. The scope of this challenge, he said, is expanded further when the question is asked about who will benefit most from these advances and who will bear the greater share of the risk.

Discussions that followed the plenaries were far ranging, generally going beyond the suggested topics of genetically modified (GM) foods and agriculture, bioscience and criminal jurisprudence, biological property, genetic testing, and human subjects in biomedical research. During these sessions, judges related how their nations courts have managed science and technology issues and the problems they have encountered. As groups attempted to anticipate issues likely to arise in the next two decades, researchers in their turn offered opinions on the current state of the science as well as some forecasts of advances on the near horizon. Several participants emphasized the need to recognize the varying political, economic, and social realities faced by different nations, particularly disparities between developed and undeveloped countries.

Highlights of sessions on GM technologies are found in the following articles: Debate Over GM Products and Technologies and What Are Genetically Modified (GM) Organisms and Foods?

Dispensing Justice
A common vision among those gathered at the meeting, observed Shiranee Tilakawardena (Justice, Sri Lanka Court of Appeals, was their concern that justice be “carried out in the language of human rights, with fundamental guarantees.” It is a judicial burden, she emphasized, to stand guard for the people.

And, in doing so, judges often must make decisions about competing scientific opinions, said Timothy Evans (Presiding Judge, Circuit Court of Illinois for Cook County). To resolve disputes, they first look to existing laws to decide relevance but must then listen to scientists.

But in the new and rapidly changing world of genomics, legal precedent and accepted scientific consensus may not exist. Future judges may need to search for truth in other ways, Evans said, on a case-by-case basis in partnership with scientists, until the necessary guidelines are passed into law.

“It is essential that we develop dispute-resolution methods that are as intelligent as the discoveries themselves,” added Richard Guy (retired Chief Justice, Supreme Court of Washington). Guy observed that mediation is very effective in resolving the vast majority of disputes and reduces costs and time. A drawback, however, is that it doesn’t create precedent to guide other judicial decisions. Another possible resource may be the creation of an international science and technology reference body that would render neutral advisory opinions to resolve complex disputes involving genetics and biotechnology.

As proposed by EINSHAC, the decisions of such a specialty court would be nonbinding but could serve as written precedents for evaluation by potential litigants and traditional courts dealing with similar problems. This forum could serve as a useful alternative to litigation, arbitration, or mediation, where multiple parties and complex issues require knowledgeable judges. The next international meeting, scheduled for June in Ottawa, will explore this proposition in more detail.

As the conference drew to a close, Zweig observed, “In most countries, the judiciary is still looked to for the preservation of human rights. At this conference we truly have come to work together on that score. Our objective is to create an invested global judicial core who can take ideas back to their courts and build bridges with their scientists. This Hawaii conversation has merely initiated a discourse and suggested the agenda for further deliberation.” A meeting is planned for Melbourne in 2003.

Full meeting proceedings at www.einshac.org - click on Kona Round.

Reported by Denise K. Casey, HGMIS, with contributions from Laurie Gordon, LLNL.

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The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v12n1-2).

Human Genome Project 1990–2003

The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.