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PSPD  l  People's Solidarity for Participatory Democracy

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  • 2001.09.15
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Details on the Genome Project Hearing


Four outside experts gathered together on August 1 to review the negative impacts of the controversial human genome project. The Center for Democracy in Science and Technology at the People's Solidarity for Participatory Democracy (PSPD) held a hearing on the expected social and ethical problems of the use of genetic information. This hearing was geared to making the general public aware of the expected impacts of the controversial genome project. The issue area was divided in four broad categories: legal and social problems in making individual's genome information accessible to insurance companies or employers, several misconceptions, and genome testing for criminal investigation.

In a keynote address, Kim Whan Suk, chief of the Center, initiated the hearing, saying science and technology are not a holy realm only for scientists, and citizens should positively take part in the decision-making process of the genome project.

Sin Dong Il, fellow of the Korean Institute for Criminal Policy, started the session by pointing out potential risks with making individuals' genetic information accessible to the public, in particular, to businesses and governments. He said a specific law system to protect individuals' genome information is needed. The law should have detailed clauses on specific standards for misuses of the information, and measures for legal relief when agents or individuals invaded the privacy. He also said reconsideration should be made on the right understanding of genome information by quoting leading figures in the genetic engineering field, who agreed that the role of gene therapy expected from genome information is no more than a hypothesis.

Medical experts from the Association of Physician for Humanism invested their time in focusing on several misconceptions about the genetic testing. They praised the Human Genome Project for completing the human gene map and deciphering the gene code. They argued, however, that a major task remained to be done figuring out what exactly each individual gene's function is, and how they all interact each other. Without full understanding of that, there is no way to judge whether a particular gene will work as an effective therapy for diseases.

Experts from universities focused their debate on the possibility of discrimination. Buying insurance and seeking jobs are clear manifestations of the case. Individuals who get negative feedback from genetic testing may be at risk when an insurance company considers genome information in the contracting process with the recipient. The company would isolate an applicant with negative genetic information from some benefits. The same example will be applied to the job market. The future employer is not likely to hire people who have the potential for a disease. These things ignore the fact that the potential disease may not develop into a real one, so depriving someone of a job opportunity or a benefit just because of the genetic testing result is not reasonable.

Meanwhile, Hong Sung Su, CEO of Embiogen Inc., a startup business using genetic testing technology, said that genome analysis technology will bring great strides in genome treatment and information technology. Learning from the ethics controversy on technology-oriented development, he suggested that more measures be taken in solving this tension in the future.

At the end of the session, Lee Young Hee, who hosted the hearing, concluded that debate on human genome project should not evolve in the direction of a black or white decision. Diverse input from the general public is needed before making a critical decision. The Center for Democracy in Science and Technology is scheduled to have a second hearing on the expected social and ethical issues in stem-cell research in October. More information on the hearing is available on the web (cdst.jinbo.net).

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