scholarly journals ELSI Bibliography: Ethical legal and social implications of the Human Genome Project

1993 ◽  
Author(s):  
M.S. Yesley
Keyword(s):  
Human Genome ◽  
Human Genome Project ◽  
Genome Project ◽  
Social Implications ◽  
The Human Genome Project

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.

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.

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.

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