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

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.

1993 ◽  
Vol 12 (2) ◽  
pp. 273-275 ◽  
Author(s):  
Elinor J. Langfelder ◽  
Eric T. Juengst

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.


2007 ◽  
Vol 35 (S2) ◽  
pp. 59-65 ◽  
Author(s):  
Mark A. Rothstein

One of the most important and contentious policy issues surrounding genetics is whether genetic information should be treated separately from other medical information. The view that genetics raises distinct issues is what Thomas Murray labeled “genetic exceptionalism,” borrowing from the earlier term “HIV exceptional-ism.” The issue of whether the use of genetic information should be addressed separately from other health information is not merely an academic concern, however. Since the Human Genome Project began in 1990, nearly every state has enacted legislation prohibiting genetic discrimination in health insurance; two-thirds of the states have enacted laws prohibiting genetic discrimination in employment, and other state laws have been enacted dealing with genetic discrimination in life insurance, genetic privacy, and genetic testing. Bills in Congress also would prohibit genetic discrimination in health insurance and employment.


1996 ◽  
Vol 13 (2) ◽  
pp. 63-95 ◽  
Author(s):  
Eric T. Juengst

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.


1998 ◽  
Vol 24 (4) ◽  
pp. 443-480
Author(s):  
Jeremy A. Colby

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness … it was the spring of hope, it was the winter of despair … we were all going direct to Heaven, we were all going direct the other way.—Charles DickensThe Human Genome Project (HGP) provides information about the human genome that will forever alter society and the way we view ourselves. The genetic age offers great potential, including a future where gene and germ-cell therapy may virtually eliminate genetic disease. However, genetic information may also result in a world characterized by genetic discrimination and genetic determinism. Although genetic information will be used to develop revolutionary treatments, such as gene therapy and other molecular medicine, it will also bring genetic discrimination and heretofore unrealized invasions into the privacy of our genetic codes.


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