The Genetic Revolution at Work: Legislative Efforts to Protect Employees

2002 ◽  
Vol 28 (2-3) ◽  
pp. 271-283
Author(s):  
Patricia A. Roche
Keyword(s):  
Human Genome ◽  
Genetic Information ◽  
Genomic Medicine ◽  
Genome Project ◽  
Human Beings ◽  
Genome Research ◽  
Genetic Revolution ◽  
Common Illnesses ◽  
The Cost ◽  
The Human Genome Project

In justifying the cost of the Human Genome Project, supporters predicted fantastic benefits would result from decoding the human genome: cures for fatal diseases, effective treatments for common illnesses burdening individuals and society and a greater understanding of ourselves as human beings. Fear that genetic information will be misused to harm individuals, however, casts a shadow over this glowing portrait of the future of genomic medicine. Over the last decade, these concerns have led approximately twenty-six states to enact genetic nondiscrimination laws. Although no similar law has been passed by Congress, many, including Francis Collins, Director of the National Center for Human Genome Research, have repeatedly endorsed proposed federal legislation aimed at prohibiting health insurers and employers from using predictive genetic information. The result has been growing bipartisan support for The Genetic Nondiscrimination in Health Insurance and Employment Act introduced in February of 2001 by Representative Louise Slaughter in the House and by Senators Kennedy and Daschle in the Senate.

2. How to read the book of life

2018 ◽  
pp. 12-27
Author(s):  
John Archibald
Keyword(s):  
Dna Sequencing ◽  
Human Genome ◽  
Single Molecule ◽  
Human Genome Project ◽  
Genome Project ◽  
Chain Termination ◽  
Single Molecule Sequencing ◽  
Semiconductor Sequencing ◽  
The Cost ◽  
The Human Genome Project

For all its biological importance, DNA is a fragile molecule so extracting it is a difficult process. ‘How to read the book of life’ explains the techniques required to sequence DNA. It begins by explaining the techniques developed for protein and RNA sequencing by Frederick Sanger, Robert Holley, and Carl Woese that were then developed further for DNA sequencing. Following the success of the Human Genome Project, the next generation of DNA sequencing was developed in the mid-2000s. Pyrosequencing was capable of generating orders of magnitude more data at a fraction of the cost, but was superceded within a decade by semiconductor sequencing, reversible chain-termination sequencing, and single-molecule sequencing.

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.

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

1997 ◽  
Vol 25 (4) ◽  
pp. 256-272 ◽  
Author(s):  
Edwin S. Flores Troy
Keyword(s):  
Human Genome ◽  
Health Care Professionals ◽  
Human Genome Project ◽  
Genetic Information ◽  
Medical Information ◽  
Genetic Material ◽  
Genome Project ◽  
Genetic Privacy ◽  
Privacy Act ◽  
The Human Genome Project

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.

scholarly journals Personal genomes in progress: from the human genome project to the personal genome project

2010 ◽  
Vol 12 (1) ◽  
pp. 47-60 ◽  
Keyword(s):  
Human Genome ◽  
Significant Rise ◽  
Genome Project ◽  
Personal Genome ◽  
Research Subjects ◽  
Single Nucleotide ◽  
Health Records ◽  
Personal Genomes ◽  
The Cost ◽  
The Human Genome Project

The cost of a diploid human genome sequence has dropped from about $70M to $2000 since 2007--even as the standards for redundancy have increased from 7x to 40x in order to improve call rates. Coupled with the low return on investment for common single-nucleotide polylmorphisms, this has caused a significant rise in interest in correlating genome sequences with comprehensive environmental and trait data (GET). The cost of electronic health records, imaging, and microbial, immunological, and behavioral data are also dropping quickly. Sharing such integrated GET datasets and their interpretations with a diversity of researchers and research subjects highlights the need for informed-consent models capable of addressing novel privacy and other issues, as well as for flexible data-sharing resources that make materials and data available with minimum restrictions on use. This article examines the Personal Genome Project's effort to develop a GET database as a public genomics resource broadly accessible to both researchers and research participants, while pursuing the highest standards in research ethics.

scholarly journals Genomic Interventions in Medicine

2018 ◽  
Vol 12 ◽  
pp. 117793221881610 ◽  
Author(s):  
Oluwadurotimi S Aworunse ◽  
Oluwatomiwa Adeniji ◽  
Olusola L Oyesola ◽  
Itunuoluwa Isewon ◽  
Jelili Oyelade ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Human Genome ◽  
Paradigm Shift ◽  
Biological Function ◽  
Genomic Medicine ◽  
Genome Project ◽  
Biomedical Sciences ◽  
Base Pairs ◽  
Human Dna ◽  
The Human Genome Project

Lately, the term “genomics” has become ubiquitous in many scientific articles. It is a rapidly growing aspect of the biomedical sciences that studies the genome. The human genome contains a torrent of information that gives clues about human origin, evolution, biological function, and diseases. In a bid to demystify the workings of the genome, the Human Genome Project (HGP) was initiated in 1990, with the chief goal of sequencing the approximately 3 billion nucleotide base pairs of the human DNA. Since its completion in 2003, the HGP has opened new avenues for the application of genomics in clinical practice. This review attempts to overview some milestone discoveries that paved way for the initiation of the HGP, remarkable revelations from the HGP, and how genomics is influencing a paradigm shift in routine clinical practice. It further highlights the challenges facing the implementation of genomic medicine, particularly in Africa. Possible solutions are also discussed.

An Analysis of Genetic Discrimination Legislation Proposed by the 105th Congress

1998 ◽  
Vol 24 (4) ◽  
pp. 443-480
Author(s):  
Jeremy A. Colby
Keyword(s):  
Human Genome ◽  
Charles Dickens ◽  
Genetic Disease ◽  
Human Genome Project ◽  
Genetic Information ◽  
Genetic Discrimination ◽  
Genome Project ◽  
Molecular Medicine ◽  
Genetic Codes ◽  
The Human Genome Project

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.

scholarly journals Genomic Medicine

2016 ◽  
Vol 23 (1) ◽  
pp. 21
Author(s):  
Kremema Star ◽  
Barbara Birshtein
Keyword(s):  
Human Genome ◽  
Human Disease ◽  
Human Genome Project ◽  
Large Scale ◽  
New Technologies ◽  
Genomic Medicine ◽  
Genetic Material ◽  
Genome Project ◽  
The Human Genome Project

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.

scholarly journals What motivates the sharing of consumer-generated genomic information?

2020 ◽  
Vol 8 ◽  
pp. 205031212091540 ◽  
Author(s):  
Rachele M Hendricks-Sturrup ◽  
Christine Y Lu
Keyword(s):  
Genetic Testing ◽  
Human Genome ◽  
Human Genome Project ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Genome Project ◽  
Genomic Information ◽  
Financial Return ◽  
Direct To Consumer ◽  
The Human Genome Project

Genomic medicine is an emerging practice that followed the completion of the Human Genome Project and that considers genomic information about an individual in the provision of their clinical care. Large and start-up direct-to-consumer genetic testing companies like Ancestry, 23andMe, Luna DNA, and Nebula Genomics have capitalized on findings from the Human Genome Project by offering genetic health testing services to consumers without a clinical intermediary. Genomic medicine is thus further propelled by unprecedented supply and demand market forces driven by direct-to-consumer genetic testing companies. As government entities like the National Human Genome Research Institute question how genomics can be implemented into routine medical practice to prevent disease and improve the health of all members of a diverse community, we believe that stakeholders must first examine how and scenarios in which stakeholders can become motivated to share or receive genomic information. In this commentary, we discuss consumers three scenarios: satisfying personal curiosity, providing a social good, and receiving a financial return. We examine these motivations based on recent events and current avenues through which have engaged or can engage in genomic data sharing via private, secure (e.g. centralized genomic databases and de-centralized platforms like blockchain) and public, unsecure platforms (e.g. open platforms that are publicly available online). By examining these scenarios, we can likely determine how various stakeholders, such as consumers, might prefer to extract value from genomic information and how privacy preferences among those stakeholders might vary depending on how they seek to use or share genomic information. From there, one can recommend best practices to promote transparency and uphold privacy standards and expectations among stakeholders engaged in genomic medicine.

Implications of Research from the Human Genome Project for Rehabilitation Counselors

1996 ◽  
Vol 27 (2) ◽  
pp. 3-7
Author(s):  
Rick Houser ◽  
Marilyn Lash
Keyword(s):  
Human Genome ◽  
Human Genome Project ◽  
Genetic Information ◽  
Genetic Research ◽  
Genome Project ◽  
Rehabilitation Counselors ◽  
Persons With Disabilities ◽  
The Past ◽  
The Human Genome Project ◽  
Medical Advances

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.

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