Faith meets the Human Genome Project: religious factors in the public response to genetics

1999 ◽  
Vol 8 (3) ◽  
pp. 207-214 ◽  
Author(s):  
R. Cole-Turner
Keyword(s):  
Genetic Information ◽  
Genome Project ◽  
Religious Community ◽  
Genetic Privacy ◽  
Public Response ◽  
The Public ◽  
Religious People ◽  
Divine Freedom ◽  
The Human Genome Project ◽  
Symptomatic Diagnosis

Providers of genetic services need to be broadly aware of the role that religious beliefs can play in the public's understanding of genetic information and of the choices that are posed. This paper identifies three religious themes that tend to arise when religious people, especially Christians, are involved in genetic testing and pre-symptomatic diagnosis. The first theme of fate and freedom leads to the prediction that religious people will be less likely than others to ascribe fatalistic or deterministic powers to genes but will want to maintain room for human and divine freedom, and that perhaps they will err too much in this direction. The second theme, having to do with religious community, suggests that religious people will experience a tension between the need for genetic privacy and the desire to share personal concerns with their faith community. Third, religious people regard the unborn with respect, even if not all regard the fetus as a person. Those who accept abortion for genetic reasons are likely to grieve the loss and to look for rituals to mark the value of the life that was not continued.

Genetic Exceptionalism and Legislative Pragmatism

2007 ◽  
Vol 35 (S2) ◽  
pp. 59-65 ◽  
Author(s):  
Mark A. Rothstein
Keyword(s):  
Health Insurance ◽  
Genetic Information ◽  
Medical Information ◽  
Genetic Discrimination ◽  
Genome Project ◽  
Genetic Privacy ◽  
State Laws ◽  
Genetic Exceptionalism ◽  
Discrimination In Employment ◽  
The Human Genome Project

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.

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.

The Human Genome Project and public policy

1999 ◽  
Vol 8 (3) ◽  
pp. 161-168 ◽  
Author(s):  
Glen A. Evans
Keyword(s):  
Human Genome ◽  
Human Genome Project ◽  
Social Issues ◽  
Genome Project ◽  
Biological Information ◽  
Biological Research ◽  
Genetic Privacy ◽  
Emerging Issues ◽  
The Many ◽  
The Human Genome Project

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.

The Critical Collaboration between Art and Science: An Experiment on a Bird in the Air Pump and the Ramifications of Genomics for Society

Leonardo ◽  
2005 ◽  
Vol 38 (4) ◽  
pp. 323-329 ◽  
Author(s):  
Tamar Schlick
Keyword(s):  
Human Genome ◽  
Human Genome Project ◽  
18Th Century ◽  
Science And Technology ◽  
Genome Project ◽  
Modern Biology ◽  
The Public ◽  
The Arts ◽  
The Human Genome Project ◽  
Scientific Ideas

Inspired by a famous 18th-century painting by Joseph Wright, the author discerns similarities between issues relevant then and the public's current reception of scientific ideas from modern biology in the wake of the Human Genome Project. She proposes educational and scientific initiatives and advocates more positive and balanced portrayals of scientific themes in the arts to help engage the public in a discourse about the ramifications of genomics science and technology for our lives.

scholarly journals Genetic Discrimination in the Workplace

1998 ◽  
Vol 26 (3) ◽  
pp. 189-197 ◽  
Author(s):  
Paul Steven Miller
Keyword(s):  
Genetic Information ◽  
Medical Information ◽  
Genetic Research ◽  
Early Death ◽  
Genome Project ◽  
Insurance Companies ◽  
Carrier Status ◽  
Genetic Tests ◽  
Increased Risk ◽  
The Human Genome Project

The surge in genetic research and technology, fuelled in large part by the Human Genome Project, has resulted in the continuing expansion of the range of genetic tests and other genetic information available to physicians, insurance companies, employers, and the general public.’ Genetic tests can provide presymptomatic medical information about an individual, including information about an individual's increased risk of future disease, disability, or early death. These tests can reveal information about an individual's carrier status, that is, the likelihood of parents passing on to their children a genetic condition, and about the health of the individual's family members. Although genetic information provides the promise of early detection and treatment of certain illnesses and disorders, it also poses risks. As a result of the increase in genetic testing and information, legal issues regarding employment discrimination on the basis of genetic information are emerging.

Genetic testing and the moral dynamics of family life

1999 ◽  
Vol 8 (3) ◽  
pp. 193-205 ◽  
Author(s):  
Eric T. Juengst
Keyword(s):  
Genetic Testing ◽  
Genome Project ◽  
Blended Families ◽  
Genetic Risk Assessment ◽  
Ethical Problems ◽  
The Public ◽  
Extended Families ◽  
Genetic Risks ◽  
The Human Genome Project ◽  
The Impact

American families are a segment of the public that will feel the impact of the Human Genome Project most acutely: but they are also one of the least well studied segments with regard to that impact. Three sets of ethical problems, in particular, deserve more scrutiny: the effect of increased genetic risk assessment on family members' willingness to assist their kin discover mutually incriminating genetic risks, its impact on the candor with which extended families communicate within themselves about their genetic health risks, and its influence on the ways that families seek to protect the interests of their most vulnerable members. In each of these areas, anecdotal experience already shows how genetic testing can undermine a family's commitment to its own interdependence in these ways, and that traditional, multigenerational, sessile families are likely to experience more disruption than either blended families or “virtual families” linked primarily through electronic communication.

Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations

1995 ◽  
Vol 23 (4) ◽  
pp. 360-366 ◽  
Author(s):  
George J. Annas ◽  
Leonard H. Glantz ◽  
Patricia A. Roche
Keyword(s):  
Genetic Testing ◽  
Genetic Screening ◽  
Genetic Information ◽  
Medical Information ◽  
Legal Protection ◽  
Central Question ◽  
Genetic Privacy ◽  
The Public ◽  
Privacy Act ◽  
Cholesterol Levels

Only 27 percent of Americans in a 1995 Harris poll said they had read or heard “quite a lot” about genetic tests. Nonetheless, 68 percent said they would be either “very likely” or “somewhat likely” to undergo genetic testing even for diseases “for which there is presently no cure or treatment.” Perhaps most astonishing, 56 percent found it either “very” or “somewhat acceptable” to develop a government computerized DNA bank with samples taken from all newborns, and their names attached to the samples. This does not necessarily mean the public is unconcerned about genetic privacy. More likely it means that the public is still uninformed about the risks associated with genetic testing, and has not thought at all about the risks involved in storing identifiable DNA samples.A central question presented by genetic screening and testing is whether the genetic information so obtained is different in kind from other medical information (such as family history and cholesterol levels), and, if so, whether this means that it should receive special legal protection.

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.

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