Biobanking: International Norms

2005 ◽  
Vol 33 (1) ◽  
pp. 7-14 ◽  
Author(s):  
Bartha Maria Knoppers
Keyword(s):  
Human Rights ◽  
Genetic Research ◽  
Legal Issues ◽  
Clinical Genetics ◽  
National Guidelines ◽  
United Nations Educational ◽  
Human Reproductive ◽  
Ethical And Legal Issues ◽  
The Subject ◽  
Aids Drugs

While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more recent. Add to this the fact that national guidelines and laws usually precede international policymaking, and the delay in international approaches is understandable. In that regard, the United Nations Educational, Scientific and Cultural Organization’s 1997 Universal Declaration on the Human Genome and Human Rights is unique in its prospective guidance on genetic research. Also, it is in the very nature of international normative instruments to be general, except on specific issues considered to be in the interest of humanity, such as research into human reproductive cloning or access to AIDS drugs.

Psychosurgery

2002 ◽  
Vol 12 (12) ◽  
pp. 443-448
Author(s):  
Marilyn Williams
Keyword(s):  
Surgical Procedures ◽  
Ethical Issues ◽  
Mental States ◽  
Legal Issues ◽  
History Of ◽  
Ethical And Legal Issues ◽  
The Subject ◽  
The Brain

The use of surgical procedures to alter mental states raises many issues. Surgery on the brain has been known for thousands of years, but procedures developed in the 1930s, ‘40s and ‘50s, and the reasons for them, raised many ethical issues that remain with us today. The following article touches on the history of psychosurgery, the conditions treated, the literature on the subject, and the ethical and legal issues.

Reading texts between generations: a proposal concerning theological engagement with genetic research

2004 ◽  
Vol 57 (4) ◽  
pp. 466-478 ◽  
Author(s):  
Rachel Muers
Keyword(s):  
Human Rights ◽  
Human Genome ◽  
Recent Work ◽  
Conservation Biology ◽  
Human Genetics ◽  
Genetic Research ◽  
Future Generations ◽  
Ethical Reflection ◽  
Ethical Status ◽  
The Subject

The issue of the ethical status of future generations is significant in debates about research in human genetics, but key (non-theological) statements on the subject, such as the UNESCO Declaration on Human Rights and the Human Genome, reflect a failure to think of future persons as located within communities of ethical reflection and interpretation. I draw on recent work in the philosophy of conservation biology to explore this failure, and argue that a major contribution of theology to ethical reflection on genetic research would be through discussion of ways of reading, transmitting and interpreting texts.

scholarly journals Medically assisted procreation and fast-moving developments in science and law: ethical and legal issues in heterologous procreation in Italy

2015 ◽  
Vol 4 (2) ◽  
Author(s):  
Paola Delbon ◽  
Adelaide Conti
Keyword(s):  
Human Rights ◽  
Fast Moving ◽  
Legal Issues ◽  
European Countries ◽  
Constitutional Court ◽  
Medically Assisted Procreation ◽  
European Court ◽  
Assisted Procreation ◽  
Third Person ◽  
Ethical And Legal Issues

In Italy, a law on Medically Assisted Procreation was passed in 2004. In 2014 the Constitutional Court declared section 4 para. 3 of this Law to be unconstitutional in the part where it prohibits couples from accessing heterologous medically assisted procreation techniques if a condition which causes complete, irreversible sterility or infertility has been diagnosed. The fast-moving developments in science and law, and the deep implications that the application of <em>new</em> techniques − which involve in the context of procreation a third person − can have in terms of protection of health and not only, makes it appropriate to keep under review this area, taking into account the pronouncements of the European Court of Human Rights and regulations in European countries.

scholarly journals La consulenza genetica in Italia: problemi, regole di consenso informato, trattamento dei dati genetici e privacy

2009 ◽  
Vol 58 (6) ◽  
Author(s):  
Marina Casini ◽  
Claudio Sartea
Keyword(s):  
Human Rights ◽  
Legal System ◽  
Privacy Protection ◽  
Genetic Research ◽  
Genetic Data ◽  
Third Party ◽  
Professional Profile ◽  
The Subject ◽  
Access To Data ◽  
And Diffusion

Il contributo presenta una sintetica disamina di alcune delle questioni più rilevanti nell’ambito della consulenza genetica, dell’informazione e del consenso, della tutela della privacy in ordine al trattamento dei dati genetici, alle loro modalità di raccolta e conservazione degli stessi nonché in ordine alle loro modalità di comunicazione e diffusione. Si tratta sicuramente di uno degli ambiti di studio più complessi e densi. Esso nasce, come osservano gli Autori, dalla necessità di armonizzare le grandi promesse della ricerca genetica con l’esigenza di non ledere i diritti fondamentali della persona. Tale esigenza è particolarmente intensa poiché un uso inappropriato dei dati genetici, la loro incontrollabile divulgazione, o un accesso indebito da parte di terzi, possono danneggiare gravemente – sia sotto il profilo professionale, sia nella vita di relazione – il soggetto da cui provengono le informazioni. L’argomento viene trattato esaminando fonti normative e documenti attinenti soprattutto all’ordinamento giuridico italiano, ma non mancano riferimenti a normative comunitarie e internazionali. ---------- The contribution offers a synthetic examination of some of the most remarkable questions within genetic advice, information and consent, privacy protection for genetic data processing, formalities of collection and maintenance as well as for formalities of communication and diffusion of data. It is of course one of the more complex and dense circles of study. As the Authors observes - it derives from the necessity to harmonize the great promises of genetic research with the demand of the respect of human rights. Such demand is particularly intense since an inadequate use of genetic data, their uncontrollable spreading or an undue access to data from a third party, may seriously damage - both under the professional profile, and within the relational life - the subject from which information originate. The matter is dealt examining normative sources and documents connected above all to the Italian legal system, but there are references to community and international commumnity.

scholarly journals Subject (in) Trouble: Humans, Robots, and Legal Imagination

Laws ◽  
2020 ◽  
Vol 9 (2) ◽  
pp. 10 ◽  
Author(s):  
Ana Oliveira
Keyword(s):  
Human Rights ◽  
Science Fiction ◽  
Legal Theory ◽  
Legal Issues ◽  
High Tech ◽  
Legal Personhood ◽  
Legal Subjectivity ◽  
Human Exceptionalism ◽  
The Subject ◽  
The Right

The legal conception and interpretation of the subject of law have long been challenged by different theoretical backgrounds: from the feminist critiques of the patriarchal nature of law and its subjects to the Marxist critiques of its capitalist ideological nature and the anti-racist critiques of its colonial nature. These perspectives are, in turn, challenged by anarchist, queer, and crip conceptions that, while compelling a critical return to the subject, the structure and the law also serve as an inspiration for arguments that deplete the structures and render them hostages of the sovereignty of the subject’ self-fiction. Identity Wars (a possible epithet for this political and epistemological battle to establish meaning through which power is exercised) have, for their part, been challenged by a renewed axiological consensus, here introduced by posthuman critical theory: species hierarchy and anthropocentric exceptionalism. As concepts and matter, questioning human exceptionalism has created new legal issues: from ecosexual weddings with the sea, the sun, or a horse; to human rights of animals; to granting legal personhood to nature; to human rights of machines, inter alia the right to (or not to) consent. Part of a wider movement on legal theory, which extends the notion of legal subjectivity to non-human agents, the subject is increasingly in trouble. From Science Fiction to hyperrealist materialism, this paper intends to signal some of the normative problems introduced, firstly, by the sovereignty of the subject’s self-fiction; and, secondly, by the anthropomorphization of high-tech robotics.

scholarly journals PROTECTION OF HUMAN RIGHTS IN THE CONTEXT OF THE DEVELOPMENT OF BIOETHICS AND GENOMICS (THEMATIC REVIEW OF THE INTERNATIONAL ROUND TABLE)

2019 ◽  
Vol 23 (1) ◽  
pp. 141-154 ◽  
Author(s):  
Elena N Trikoz
Keyword(s):  
Human Rights ◽  
Genetic Research ◽  
Round Table ◽  
Legal Issues ◽  
Law Schools ◽  
Scientific Experts ◽  
Protection Of Human Rights ◽  
International Round ◽  
International Round Table ◽  
Thematic Review

The article presents a description of the main theses of reports and presentations during the thematic meeting in the framework of an interdisciplinary group of scientific experts and students of law schools from Russia and Italy. The problems of the legalization of genetic research, the regulation of ethical, legal-social and international legal issues, as well as the problems of biomedical influence on the sphere of human rights are analyzed.

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