Conferring a Federal Property Right in Genetic Material: Stepping into the Future with the Genetic Privacy Act

1996 ◽  
Vol 22 (1) ◽  
pp. 109-134
Author(s):  
Michael M.J. Lin
Keyword(s):  
Ethical Issues ◽  
Raw Materials ◽  
Genetic Diseases ◽  
Genetic Material ◽  
Genetic Privacy ◽  
Genetic Characteristics ◽  
Dna Evidence ◽  
Privacy Act ◽  
National Rule ◽  
Social And Ethical Issues

“A wise man can hear profit in the wind.”—Pel, quoting the Ferengi Rules of AcquisitionThe expansive biotechnology field includes many facets of medical research, from drug discovery and design, to gene therapy and the diagnosis of genetic diseases, to the use of deoxyribonucleic acid (DNA) evidence to identify individuals and genetic characteristics. The biotechnology industry requires a readily available supply of biological raw materials; much of current research is founded on cells, tissues, organs, fetal tissues and placentas, and other samples derived from human donors. However, this growing need for raw materials presents many economic, social, and ethical issues to society, researchers, and the existing legal regime. Furthermore, because courts and legislatures fail to provide a clear national rule regarding biological materials, the resulting legal uncertainties chill research and investment. Although very few cases address property rights in a person’s organs, tissues, and genetic material, the issues of autonomy and privacy involved evoke analogies to deep-seated issues such as slavery, the freezing of embryos, and abortion.

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.

Using information technology to integrate social and ethical issues into the computer science and information systems curriculum

1997 ◽  
Vol 25 (4) ◽  
pp. 38-47 ◽  
Author(s):  
Mary J. Granger ◽  
Elizabeth S. Adams ◽  
Christina Björkman ◽  
Don Gotterbarn ◽  
Diana D. Juettner ◽  
...  
Keyword(s):  
Information Technology ◽  
Information Systems ◽  
Computer Science ◽  
Ethical Issues ◽  
Social And Ethical Issues ◽  
Information Systems Curriculum

Kleine deeltjes, grote kwesties

2013 ◽  
Vol 41 (2) ◽  
Author(s):  
Lucien Hanssen ◽  
Tim Vos ◽  
Maartje Langeslag ◽  
Bart Walhout
Keyword(s):  
Civil Society ◽  
Ethical Issues ◽  
Civil Society Organizations ◽  
Small Particles ◽  
Academic Organizations ◽  
Civil Society Organisations ◽  
National Debate ◽  
Wide Range ◽  
Social And Ethical Issues ◽  
Issue Analysis

Small particles, big issues. An issue analysis of the Dutch national dialogue nanotechnology Small particles, big issues. An issue analysis of the Dutch national dialogue nanotechnology In 2010 the Dutch government sponsored a national dialogue on nanotechnology. A wide range of activities was organised to bring scientific and societal views into this national debate. Issue analysis showed that risk issues concerning health and environment got most attention. Good legislation and ethical motives also came up as prominent topics in discussions. Next to issue analysis, we analysed the type of organizations that orchestrated the different projects and we looked at possibilities to bring in public voices. It turned out that there is no difference in public outreach or involvement among professional media, civil society, or academic organizations. Civil society organizations often set social and ethical issues on the agenda. Due to a lack of capacity and expertise their actual participation in dialogue projects was limited. To strengthen a more robust societal perspective in further national dialogues one could invest in capacity building for civil society organisations.

Ethics and equity in rare disease research and healthcare

2021 ◽  
Author(s):  
Maria Koromina ◽  
Vasileios Fanaras ◽  
Gareth Baynam ◽  
Christina Mitropoulou ◽  
George P Patrinos
Keyword(s):  
Rare Diseases ◽  
Ethical Issues ◽  
Genetic Diseases ◽  
Ethical Framework ◽  
Middle Income ◽  
Next Generation Sequencing Technology ◽  
Ethical Frameworks ◽  
Rare Genetic Diseases ◽  
Conducting Research ◽  
Key Aspects

Rapid advances in next-generation sequencing technology, particularly whole exome sequencing and whole genome sequencing, have greatly affected our understanding of genetic variation underlying rare genetic diseases. Herein, we describe ethical principles of guiding consent and sharing of genomics research data. We also discuss ethical dilemmas in rare diseases research and patient recruitment policies and address bioethical and societal aspects influencing the ethical framework for genetic testing. Moreover, we focus on addressing ethical issues surrounding research in low- and middle-income countries. Overall, this perspective aims to address key aspects and issues for building proper ethical frameworks, when conducting research involving genomics data with a particular emphasis on rare diseases and genetics testing.

scholarly journals Understanding the Future Impacts of Electric Vehicles—An Analysis of Multiple Factors That Influence the Market

Vehicles ◽  
2021 ◽  
Vol 3 (4) ◽  
pp. 851-871
Author(s):  
Jonathan Wellings ◽  
David Greenwood ◽  
Stuart R. Coles
Keyword(s):  
Electric Vehicle ◽  
Electric Vehicles ◽  
Ethical Issues ◽  
Raw Materials ◽  
New Technology ◽  
Vast Number ◽  
Wide Range ◽  
Key Issues ◽  
The Impact ◽  
Vehicle Market

The electric vehicle market is an increasingly important aspect of the automotive industry. However, as a relatively new technology, several issues remain present within the industry. An analysis is utilised to examine these issues, along with how they affect the industry and how they can be tackled. Several key issues that affect the electric vehicle market, as well as how efforts to address these issues influence the market, are identified. The analysis also includes the examination of ethical issues, with the issues that arise from the production of raw materials for electric vehicles. The analysis and examination of ethical issues display a wide range of problems in the industry. However, it did highlight the efforts being made to lessen the effect of these problems by various groups, such as regulation by EU and US governing bodies on the materials mined. From this analysis, this paper identifies that many of the other factors examined are directly or indirectly influenced by political and economic factors, also examined in this review. This highlights the impact that governing bodies and businesses have on a vast number of issues that are present within the market and how they can resolve the harmful factors examined.

Genetic Disease and Therapy

2021 ◽  
Vol 16 (1) ◽  
pp. 145-166
Author(s):  
Theodore L. Roth ◽  
Alexander Marson
Keyword(s):  
Dna Sequences ◽  
Current Practice ◽  
Genetic Diseases ◽  
Genetic Material ◽  
Nuclear Genome ◽  
Genetic Alterations ◽  
Genetic Diagnostics ◽  
Gene Therapies ◽  
Disease Risks ◽  
Diagnosis Therapy

Genetic diseases cause numerous complex and intractable pathologies. DNA sequences encoding each human's complexity and many disease risks are contained in the mitochondrial genome, nuclear genome, and microbial metagenome. Diagnosis of these diseases has unified around applications of next-generation DNA sequencing. However, translating specific genetic diagnoses into targeted genetic therapies remains a central goal. To date, genetic therapies have fallen into three broad categories: bulk replacement of affected genetic compartments with a new exogenous genome, nontargeted addition of exogenous genetic material to compensate for genetic errors, and most recently, direct correction of causative genetic alterations using gene editing. Generalized methods of diagnosis, therapy, and reagent delivery into each genetic compartment will accelerate the next generations of curative genetic therapies. We discuss the structure and variability of the mitochondrial, nuclear, and microbial metagenomic compartments, as well as the historical development and current practice of genetic diagnostics and gene therapies targeting each compartment.

REACTION OF SPRING WHEAT LINES WITH FOREIGN GENETIC MATERIAL TO THE IMPACT OF ARTIFICIALLY CREATED STRESSES

2021 ◽  
Author(s):  
O. V. Pavlova ◽  
◽  
L. A. Marchenkova ◽  
R. F. Chavdar ◽  
T. G. Orlova ◽  
...  
Keyword(s):  
Sodium Chloride ◽  
Environmental Factors ◽  
Spring Wheat ◽  
Genetic Material ◽  
Growth Processes ◽  
Genetic Characteristics ◽  
Early Stages ◽  
Inhibition Of Growth ◽  
Wheat Lines ◽  
The Impact

The adaptive properties of spring wheat lines with foreign genetic material at the early stages of ontogenesis on the backgrounds of salinization with sodium chloride and prolonged flooding of seeds in water were evaluated. In the course of the work, different degrees of inhibition of growth processes were revealed, depending on the factor used and the genetic characteristics of the studied forms, a comprehensive (summary) assessment of the index of stability characterizing adaptability to adverse environmental factors was shown.

Sign in / Sign up

Export Citation Format

Share Document