Guidance in Social and Ethical Issues Related to Clinical, Diagnostic Care and Novel Therapies for Hereditary Neuromuscular Rare Diseases: “Translating“ the Translational

“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.

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Kleine deeltjes, grote kwesties

Tijdschrift voor Communicatiewetenschappen ◽

10.5117/2013.041.002.122 ◽

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.

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Ethics and equity in rare disease research and healthcare

Personalized Medicine ◽

10.2217/pme-2020-0144 ◽

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.

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Biodiversity Conservation in Human-Prone Landscapes: Social and Ethical Issues

Environmental History - Reconciling Human Needs and Conserving Biodiversity: Large Landscapes as a New Conservation Paradigm ◽

10.1007/978-3-030-38728-0_3 ◽

2020 ◽

pp. 29-44

Author(s):

Bila-Isia Inogwabini

Keyword(s):

Biodiversity Conservation ◽

Ethical Issues ◽

Social And Ethical Issues

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The Middle Ground for Nuclear Waste Management

Moral, Ethical, and Social Dilemmas in the Age of Technology ◽

10.4018/978-1-4666-2931-8.ch021 ◽

2012 ◽

pp. 306-318

Author(s):

Alan Marshall

Keyword(s):

Nuclear Waste ◽

Ethical Issues ◽

Future Generations ◽

Seismic Events ◽

Nuclear Waste Management ◽

Community Acceptance ◽

Present Generation ◽

The Usa ◽

Deep Underground ◽

Social And Ethical Issues

The 2001 terrorist attacks in the USA and the 2011 seismic events in Japan have brought into sharp relief the vulnerabilities involved in storing nuclear waste on the land’s surface. Nuclear engineers and waste managers are deciding that disposing nuclear waste deep underground is the preferred management option. However, deep disposal of nuclear waste is replete with enormous technical uncertainties. A proposed solution to protect against both the technical vagaries of deep disposal and the dangers of surface events is to store the nuclear waste at shallow depths underground. This paper explores social and ethical issues that are relevant to such shallow storage, including security motivations, intergenerational equity, nuclear stigma, and community acceptance. One of the main ethical questions to emerge is whether it is right for the present generation to burden local communities and future generations with these problems since neither local peoples nor future people have sanctioned the industrial and military processes that have produced the waste in the first place.

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Social and ethical issues in remediation

Ethics of Environmental Health ◽

10.4324/9781315643724-15 ◽

2017 ◽

pp. 156-165

Author(s):

Deborah H. Oughton

Keyword(s):

Ethical Issues ◽

Social And Ethical Issues

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The Ethics of Social Information Retrieval

Social Information Retrieval Systems ◽

10.4018/978-1-59904-543-6.ch010 ◽

2011 ◽

pp. 179-188

Author(s):

Brendan Luyt ◽

Chu Keong Lee

Keyword(s):

Information Retrieval ◽

Social Networking ◽

Ethical Issues ◽

Social Information ◽

Democratic Society ◽

Technological Systems ◽

Social Diversity ◽

Technological Design ◽

The Social ◽

Social And Ethical Issues

In this chapter we discuss some of the social and ethical issues associated with social information retrieval. Using the work of Habermas we argue that social networking is likely to exacerbate already disturbing trends towards the fragmentation of society and a corresponding decline reduction in social diversity. Such a situation is not conducive to developing a healthy, democratic society. Following the tradition of critical theorists of technology, we conclude with a call for responsible and aware technological design with more attention paid to the values embedded in new technological systems.

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