Self-Critical Federal Science? The Ethics Experiment within the U.S. Human Genome Project

1996 ◽  
Vol 13 (2) ◽  
pp. 63-95 ◽  
Author(s):  
Eric T. Juengst
Keyword(s):  
Human Genome ◽  
Human Genome Project ◽  
Human Genetics ◽  
Genome Project ◽  
Social Implications ◽  
Assessment Tests ◽  
American Science ◽  
Human Genes ◽  
Molecular Maps ◽  
The Human Genome Project

On October 1, 1988, thirty-five years after co-discovering the structure of the DNA molecule, Dr. James Watson launched an unprecedented experiment in American science policy. In response to a reporter's question at a press conference, he unilaterally set aside 3 to 5 percent of the budget of the newly launched Human Genome Project to support studies of the ethical, legal, and social implications of new advances in human genetics. The Human Genome Project (HGP), by providing geneticists with the molecular maps of the human chromosomes that they use to identify specific human genes, will speed the proliferation of a class of DNA-based diagnostic and risk-assessment tests that already create professional ethical and health-policy challenges for clinicians. “The problems are with us now, independent of the genome program, but they will be associated with it,” Watson said. “We should devote real money to discussing these issues.” By 1994, the “ELSI program” (short for “Ethical, Legal, and Social Implications”) had spent almost $20 million in pursuit of its mission, and gained both praise and criticism for its accomplishments.

Ethical, Legal, and Social Implications (ELSI) Program National Center for Human Genome Research, National Institutes of Health

1993 ◽  
Vol 12 (2) ◽  
pp. 273-275 ◽  
Author(s):  
Elinor J. Langfelder ◽  
Eric T. Juengst
Keyword(s):  
Human Genome ◽  
Human Genome Project ◽  
Genome Project ◽  
National Institutes Of Health ◽  
Department Of Energy ◽  
Social Implications ◽  
Genome Research ◽  
The Human Genome Project ◽  
The U.S

The program on the Ethical, Legal, and Social Implications (ELSI) of human genome research is a branch of the National Center for Human Genome Research (NCHGR) at the National Institutes of Health (NIH). The NCHGR is responsible, in conjunction with the Office of Health and Environment at the Department of Energy (DOE), for administration and coordination of the U.S. component of the Human Genome Project.

scholarly journals BIOINFORMATICS APPROACHES TO UNDERSTAND GENE LOOPING IN THE HUMAN GENOME

2021 ◽  
pp. 170-173
Author(s):  
Sudheer Menon
Keyword(s):  
Rna Polymerase Ii ◽  
Human Genome ◽  
Dna Sequences ◽  
Human Genome Project ◽  
Genome Project ◽  
Department Of Energy ◽  
Biological Study ◽  
Human Genes ◽  
Protein Functions ◽  
The Human Genome Project

This paper reviews up to date Bioinformatics Approaches to Understand Gene Looping in the Human Genome. Bioinformatics is used to study the sequences of biological molecules. It generally points out to genes, DNA, RNA, or protein, and is especially functional in analogizing genes and other protein sequences. You can believe in bioinformatics. Basically, the linguistics Bioinformatics uses computer programs for various applications, involving deliberate gene and protein functions. The beginning of the human genome project in 1990 and was completed in 2003. The Human Genome Project gave a prime improvement for the progress of bioinformatics. The (HGP) was organized by the National Institutes of Health and the U.S. Department of Energy. Without the interpretation given via bioinformatics, the information obtained from the HGP is not very functional. This page describes HGP bioinformatics research. Informatics is the formation, exploration, and function of databases. Main aim was to find the total set of human genes and make them available for more biological study and discover the total sequence of DNA bases in the human genome. A total and the correct sequence of the 3 billion DNA base pairs create the human genome and search all approximate 20,000 to 25,000 human genes. The genomes sequence of organisms that are main to medical research. To begin new tools to apply and inspect the data and to assemble this information broadly obtainable. DNA sequencing manufactures a sequence that is particularly a hundred bases long. Gene sequences manufacture thousands of bases. To study genes, small intersecting sequences set up long DNA sequences. Loops can clump associated genes into separate transcriptional axis chromatin from neighboring domains. Gene loops in yeast juxtapose promoter-terminator regions. Here we outline gene loops’ finding, the looping need proteins, and transcription by RNA polymerase II is by gen looping

Choosing Who Will Be Disabled: Genetic Intervention and the Morality of Inclusion

1996 ◽  
Vol 13 (2) ◽  
pp. 18-46 ◽  
Author(s):  
Allen Buchanan
Keyword(s):  
Human Genome ◽  
Human Genome Project ◽  
Human Genetics ◽  
Public Support ◽  
Genome Project ◽  
Human Suffering ◽  
Practical Application ◽  
Genetic Intervention ◽  
Comprehensive Knowledge ◽  
The Human Genome Project

The Nobel prize-winning molecular biologist Walter Gilbert described the mapping and sequencing of the human genome as “the grail of molecular biology.” The implication, endorsed by enthusiasts for the new genetics, is that possessing a comprehensive knowledge of human genetics, like possessing the Holy Grail, will give us miraculous powers to heal the sick, and to reduce human suffering and disabilities. Indeed, the rhetoric invoked to garner public support for the Human Genome Project appears to appeal to the best of the Western tradition's enthusiasm for progress: the idea of improving human lives through the practical application of scientific knowledge.

Protecting Genetic Privacy by Permitting Employer Access Only to Job-Related Employee Medical Information: Analysis of a Unique Minnesota Law

1998 ◽  
Vol 24 (4) ◽  
pp. 399-416
Author(s):  
Mark A. Rothstein ◽  
Betsy D. Gelb ◽  
Steven G. Craig
Keyword(s):  
Health Insurance ◽  
Human Genome ◽  
Human Genome Project ◽  
Action Plan ◽  
Genetic Discrimination ◽  
Genome Project ◽  
Social Implications ◽  
Committee Report ◽  
Discrimination In Employment ◽  
The Human Genome Project

One of the most frequently expressed concerns about new scientific discoveries resulting from the Human Genome Project is the potential for genetic discrimination in insurance and employment. The issue of discrimination in insurance, primarily health insurance, has justifiably received widespread attention in the scholarly literature. Among other research, there has been a special task force on insurance of the Joint Working Group on Ethical, Legal, and Social Implications of the Human Genome Project, a special committee report of the National Action Plan on Breast Cancer, a special report of the American Council of Life Insurance and the Health Insurance Association of America and numerous reports and scholarly articles.The ethical, legal and social implications of genetic discrimination in employment, although widely recognized as being very important, have received somewhat less attention than genetic discrimination in health insurance. Undoubtedly, much of the concern about genetic discrimination in employment arises from the relationship between employment and group health insurance. However, there are other problems. The disclosure of sensitive genetic information may result in invasions of privacy and breaches of confidentiality in obtaining the information and the loss of employment means denial of the opportunity to earn a livelihood for individuals determined to be at genetic risk. As a result, many at-risk individuals forego genetic testing because they fear these consequences.

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