The Genetic Privacy Act: An Analysis of Privacy and Research Concerns

1997 ◽  
Vol 25 (4) ◽  
pp. 256-272 ◽  
Author(s):  
Edwin S. Flores Troy

In the last few years, a great deal of attention has been paid to the effects that the achievements of the Human Genome Project will have on the confidentiality of medical information. The Genetic Privacy Act (GPA) is an attempt to address the privacy, confidentiality, and property rights relating to obtaining, requesting, using, storing, and disposing of genetic material. The GPA grew out of concerns over the vast amount of genetic information that is a product of the Human Genome Project. The central goals of the GPA are twofold: (1) to define an individual's right to control access to their genetic material and the privilege to control the information derived therefrom; and (2) to prevent potential and actual abuse of genetic information by third parties, such as insurance companies, employers, and government. The GPA is one of a group of proposals that seek to control the flow of medical information from the individual to health care professionals and to other persons.

1999 ◽  
Vol 8 (3) ◽  
pp. 161-168 ◽  
Author(s):  
Glen A. Evans

The Human Genome Project is a massive government and privately funded undertaking to sequence the entire human genome and discover all 80,000 human genes in less than 15 years. As the project nears completion in the first decade of the 21st century, the ramifications of public availability of this vast amount of biological information are likely to pervade society. The legal, ethical and social issues raised by the genome project and associated biological research are expected to have a profound and long lasting impact on daily life. How society deals with the many emerging issues involving genetic privacy, designer babies, and the transformation of medical care among others will be a major focus of public and governmental discussion in the next decade.


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.


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.


2016 ◽  
Vol 23 (1) ◽  
pp. 21
Author(s):  
Kremema Star ◽  
Barbara Birshtein

The human genome project created the field of genomics – understanding genetic material on a large scale. Scientists are deciphering the information held within the sequence of our genome. By building upon this knowledge, physicians and scientists will create fundamental new technologies to understand the contribution of genetics to diagnosis, prognosis, monitoring, and treatment of human disease. The science of genomic medicine has only begun to affect our understanding of health.


1996 ◽  
Vol 27 (2) ◽  
pp. 3-7
Author(s):  
Rick Houser ◽  
Marilyn Lash

Technological and medical advances have been dramatic over the past several years; particularly impressive have been advances in biotechnology and genetic research. The implications of genetic research as they relate to persons with disabilities are discussed. Additionally, historical and current problems with the use of genetic information are addressed. Finally, the role rehabilitation counselors can play as advocates for people with disabilities in the implementation of research results from the Human Genome Project is presented.


Sign in / Sign up

Export Citation Format

Share Document