scholarly journals La conservazione del materiale biologico finalizzato alla ricerca scientifica: questioni giuridiche e riflessioni etiche sulle biobanche

2011 ◽  
Vol 60 (4) ◽  
Author(s):  
Elena Ferioli ◽  
Mario Picozzi
Keyword(s):  
Informed Consent ◽  
Ethical Issues ◽  
Individual Autonomy ◽  
Biomedical Data ◽  
Collective Interest ◽  
The Right To Privacy ◽  
Technical Requirements ◽  
The Individual ◽  
The Right ◽  
New Treatments

La richiesta di istituire biobanche oggi diventa sempre più impellente. Una biobanca è una struttura dove si raccolgono per un tempo lungo materiale biologico e dati di natura biomedica correlati al campione, che può provenire sia da pazienti che da cittadini. Da un lato si riconosce il ruolo che le biobanche possono avere sia nell’acquisire nuove conoscenze sia nel favorire nuovi trattamenti di diagnosi e cura, dall’altro è necessario riflettere sulle delicate e complesse questioni giuridiche ed etiche ad esse sottese. Il presente contributo, dopo aver fatto chiarezza sulla definizione e sui requisiti tecnici necessari per l’istituzione di una biobanca, si sofferma ad analizzare le principali questioni etico-giuridiche: a chi appartiene il tessuto e chi beneficia dei risultati ottenuti? Quale consenso informato è adeguato per protocolli sperimentali non prevedibili al momento del prelievo del tessuto? Come può essere garantita la riservatezza dei dati, anche in funzione dell’analisi genetica? Gli argomenti vengono analizzati a partire dalla letteratura internazionale, mostrando le diverse posizioni. In tema di proprietà del tessuto e di proprietà intellettuale dei risultati si evidenzia come sta emergendo una concezione solidaristica, in cui materiale e informazioni sono da considerarsi risorse a disposizione dell’intera collettività, che ne affida alla biobanca la gestione. Il modello di consenso informato che sembra prevalere è quello definito “ampliato”, di cui si evidenziano pregi e difetti, nell’ottica di un bilanciamento tra autonomia del soggetto, interesse della collettività ed esigenze della ricerca. La questione della riservatezza impone di riflettere sia sul diritto alla privacy sia sulla possibilità di utilizzo del dato per finalità di ricerca. Data la complessità delle questioni emerse, si ritiene che necessariamente la fiducia del paziente/cittadino verso la comunità scientifica giochi un ruolo fondamentale. Il Comitato di etica, a cui vanno assicurate competenze e risorse adeguate, diventa lo strumento di garanzia indispensabile per una gestione eticamente accettabile della biobanca. ---------- Today the request to create biobanks is more and more urgent. A biobank is a structure where biological specimens and related biomedical data, obtained from patients and/or citizens , are stored over time. On one hand, we acknowledge the role that biobanks may have in acquiring new knowledge and fostering new treatments for diagnosis and therapy, on the other we need to reflect upon the delicate and complex legal and ethical issues that biobanks rise. This paper, after defining the concept of biobank and the technical requirements needed to establish one, analyzes some major ethical and legal issues: Who owns the tissues and who can benefit from potential results? Which kind of informed consent is the most appropriate for experimental protocols not yet predictable at the time of tissue collection? How can data confidentiality be guaranteed also in relation to genetic analysis? The topics are analyzed with reference to the international literature, comparing different perspectives. Regarding the ownership of biological samples and the intellectual property rights of the potential research outputs based on the data, the recent literature introduces a new concept of solidarity which consider all samples and information at full disposal of the entire community and which indicates the biobank as the manager of the archive. The model of “broad” informed consent seems to prevail: we indicate its points of strength and weakness, considering a necessary balance among the individual autonomy, the collective interest and the research requirements. Finally, regarding the confidentiality of all data, we need to reflect upon the right to privacy along with the possibility to use the available data for research purpose. Considering the complexity of these issues, we believe that the patient’s trust towards the scientific community is the main matter. The Ethics Committee, to whom adequate resources and expertise must be granted, becomes the assurer entity for an ethically acceptable management of a biobank.

Accessing Reproductive Technology in France

2021 ◽  
pp. 151-162
Author(s):  
Laurence Brunet ◽  
Véronique Fournier
Keyword(s):  
United States ◽  
Ethical Issues ◽  
Assisted Reproductive Technologies ◽  
The United States ◽  
Legal Framework ◽  
Best Interest ◽  
The Right To Privacy ◽  
Cultural Foundations ◽  
The Individual ◽  
The Right

This chapter compares French and American approaches to assisted reproductive technologies (ART). These countries are a fascinating (and unexplored) mirror: the United States focuses on the individual, while France emphasizes the best interest of society as a whole. This results in an access to ART largely open in the United States, yet all costs are covered by patients, and an access strictly regulated by law in France (and quite restricted until recent changes), yet costs are fully financed. This chapter introduces readers to the legal framework of access to ART in France and its cultural foundations. It highlights the insistence on the “right to privacy” in the United States, a concept much less valued in France, and concludes with a discussion, using clinical cases, of the ethical issues underlying tensions between reproductive autonomy and public policymaking, which differ in both countries.

Privacy and Security

2006 ◽  
pp. 107-118
Author(s):  
Robert A. Schultz
Keyword(s):  
Ethical Issues ◽  
Security Requirements ◽  
The Internet ◽  
Right To Privacy ◽  
Privacy And Security ◽  
Ethical Implications ◽  
The Right To Privacy ◽  
The Individual ◽  
The Right ◽  
Ethical Basis

Privacy and security are the first topics involving the interface of the individual with information technology. The two topics of privacy and security are connected, because security is required to make privacy possible in an online world and privacy needs drive security requirements. I will first discuss ethical issues connected with privacy and then with security. The questions raised concerning privacy are these: First, what is the ethical basis for the right to privacy? Second, in what way does IT impact or change the right to privacy? Some concerns about security are these: First, what are the ethical implications for security of the answers to these questions about privacy? At a minimum, we are surely ethically required to maintain security to meet the individual’s right to privacy. Additionally, there are ethical requirements involving security that have bases other than privacy, for example, protection of underage children against exploitation on the Internet.1

The Right to Privacy and the Protection of Personal Data in a Digital Era and the Age of Information

2012 ◽  
pp. 34-45
Author(s):  
William Bülow ◽  
Misse Wester
Keyword(s):  
Empirical Evidence ◽  
Personal Information ◽  
Personal Data ◽  
Modern Society ◽  
Right To Privacy ◽  
Policy Makers ◽  
The Right To Privacy ◽  
Digital Era ◽  
The Individual ◽  
The Right

As information technology is becoming an integral part of modern society, there is a growing concern that too much data containing personal information is stored by different actors in society and that this could potentially be harmful for the individual. The aim of this contribution is to show how the extended use of ICT can affect the individual’s right to privacy and how the public perceives risks to privacy. Three points are raised in this chapter: first, if privacy is important from a philosophical perspective, how is this demonstrated by empirical evidence? Do individuals trust the different actors that control their personal information, and is there a consensus that privacy can and should be compromised in order to reach another value? Second, if compromises in privacy are warranted by increased safety, is this increased security supported by empirical evidence? Third, the authors will argue that privacy can indeed be a means to increase the safety of citizens and that the moral burden of ensuring and protecting privacy is a matter for policy makers, not individuals. In conclusion, the authors suggest that more nuanced discussion on the concepts of privacy and safety should be acknowledged and the importance of privacy must be seen as an important objective in the development and structure of ICT uses.

Ethical Issues in Brain Imaging in Psychiatry

2015 ◽  
Author(s):  
Robyn Bluhm ◽  
Gosia Raczek ◽  
Matthew Broome ◽  
Matthew B. Wall
Keyword(s):  
Mental Illness ◽  
Psychiatric Disorder ◽  
Brain Imaging ◽  
Forensic Psychiatry ◽  
Ethical Issues ◽  
Ethical Reasoning ◽  
Biological Psychiatry ◽  
Mind Reading ◽  
The Right To Privacy ◽  
The Right

With the increasing use of neuroimaging research in psychiatry and the role imaging plays in society more generally in how mental illness is understood, it is important to consider the myriad ethical issues raised by imaging technologies, for example, for medicine, for law, and for patients. This chapter provides an overview of major ethical questions concerning: imaging of ethical reasoning in psychiatric disorder; forensic psychiatry, criminality, and responsibility; mindblindness and empathy in autism; the use of neuroimaging for screening, prediction, and diagnosis; “mind reading” and the right to privacy of thoughts; and the implications of imaging for the ethics and politics of biological psychiatry.

scholarly journals Protection of privacy in Malaysia: A law for the future

2021 ◽  
Author(s):  
◽  
Zuryati Mohamed Yusoff
Keyword(s):  
Private Information ◽  
Freedom Of Expression ◽  
Legal Framework ◽  
The Right To Privacy ◽  
Privacy Law ◽  
Privacy Act ◽  
Federal Constitution ◽  
The Law ◽  
The Individual ◽  
The Right

<p>In Malaysia, the rights and liberties of the individual are recognised in the Federal Constitution of Malaysia. However, the right to privacy does not have the express constitutional recognition enjoyed by other rights such as the right to life and liberty and freedom of expression. This thesis identifies gaps in the protection of privacy interests in the current legal framework. There is no self-standing law on privacy in Malaysia, though there are several laws which provide limited rights to privacy such as the laws on data protection and criminal law. The existing laws are inadequate to protect private information and to protect against the intrusion of privacy. The importation of foreign principles through the reception of English Common Law offers only limited protection. Malaysia should, therefore, have a specific law to protect privacy. With a view to attaining that goal for Malaysia, this thesis undertakes a comparative analysis of two different experiences of the development of the law of privacy. They are the privacy law in England, which is largely based on the law of breach of confidence, and the privacy law in New Zealand, which has a distinct privacy tort recognised in its case law. The conclusion is that those countries’ experience can inform developments in Malaysia, and that the best way for Malaysia to develop its law now is by the enactment of a specific Privacy Act.</p>

scholarly journals IMPLEMENTATION OF THE RIGHT TO TEACHER’S ACADEMIC FREEDOM IN THE EDUCATIONAL SYSTEM OF UKRAINE

2020 ◽  
pp. 65-71
Author(s):  
Tetiana Motuz
Keyword(s):  
Academic Freedom ◽  
School Teacher ◽  
Educational Institution ◽  
Educational Process ◽  
Professional Activity ◽  
Research Education ◽  
National Education ◽  
Collective Interest ◽  
The Individual ◽  
The Right

The article analyzes the phenomenon of academic freedom of teachers in the context of democratization of the educational process. It is proved that the academic freedom of the general secondary school teacher is the basic principle of modern educational reform in Ukraine. Academic freedom of the teacher implies freedom and independence in the issues of teaching, research, education (advanced training). It is substantiated that the intensification of the implementation of the principles of academic freedom in the practice of teacher work is connected with the processes of the bureaucratization of national education (2014 – present), as well as the implementation of the Concept of the New Ukrainian School (2016). Among the key components of the New Ukrainian School is a motivated teacher who «has the freedom of creativity and develops professionally». The concept also emphasizes the interconnection of academic freedom of the teacher with real institution autonomy and decentralization of management, and the New Ukrainian School can be successful in effectively combining these two components. An important direction of the state policy on ensuring the freedom of professional activity of teachers, democratization of the management of the educational process was the process of debureaucratization, which began in 2014 and envisaged the release of pedagogical staff from reporting, not stipulated by the legislation, as well as the ability to independently choose information resources, materials, materials teaching. In exercising the teacher’s right to academic freedom, there is a possible conflict of interest that arises between the individual teacher and the general staff of the educational institution, whose rights are exercised through a self-governing body – the pedagogical council. The resolution of the conflict between the right of the institution of education to academic autonomy and the right of the teacher to academic freedom depends on socio-political, economic factors, but, as a rule, public, collective interest prevails.

scholarly journals Warrantless Search and Seizures by the South African Police Service: Weighing up the Right to Privacy versus the Prevention of Crime

2021 ◽  
Vol 24 ◽  
pp. 1-27
Author(s):  
Windell Nortje
Keyword(s):  
South Africa ◽  
Search And Seizure ◽  
Constitutional Court ◽  
Right To Privacy ◽  
The Right To Privacy ◽  
Reasonable Suspicion ◽  
The Individual ◽  
Search Warrant ◽  
Prevention Of Crime ◽  
The Right

The constitutional right to privacy is enshrined in section 14 of the Constitution of the Republic of South Africa, 1996. It is premised on the notion that all persons should be protected from intrusions on their privacy by any person or institution. The Constitutional Court has also, on numerous occasions, held that the right to privacy is bolstered by its connection with the right to human dignity. It is undeniable that every person's right to privacy should be protected. However, a person's right to privacy is violated when police officials conduct warrantless search and seizure operations. Generally section 22 of the Criminal Procedure Act provides for warrantless search and seizure operations when a police official has a reasonable suspicion that a search warrant will be issued to him and that a delay in obtaining such a warrant would defeat the object of the search. Warrantless searches are important for the prevention of crime, but recent case law has suggested that there has been a progressive shift towards protecting the right to privacy of the individual subjected to warrantless searches, since there are a number of laws besides section 22 that regulate warrantless searches and which have been declared to be constitutionally invalid. This article seeks to demonstrate that the current regulatory framework for warrantless searches should be reviewed in order to protect the legitimacy of the police as well as the dignity and privacy of the citizens of South Africa.

Information privacy: protecting freedom and individual autonomy

2021 ◽  
Vol 4 (2) ◽  
pp. 145-157
Author(s):  
Lesya Chesnokova
Keyword(s):  
Personal Information ◽  
Information Privacy ◽  
Private Life ◽  
Social Recognition ◽  
The Body ◽  
Individual Autonomy ◽  
Human Right ◽  
Right To Information ◽  
The Individual ◽  
The Right

The article examines the individual’s right to information privacy as an opportunity to have a non-public area of life. It is argued that a person, being a vulnerable creature, feels the need for secrecy, closeness and opacity of his or her personality. The right to information privacy does not mean complete concealment of private life, but the possibility of regulating access, when individuals can choose whom, when and to what extent to reveal the details of their lives. This presupposes both a person who feels him or herself to be an autonomous person and a society that respects his or her rights and freedoms. There is a duty of restraint and tact, which prohibits violating someone else’s privacy. As one of the aspects of privacy, in addition to the inviolability of the body and home, the human right to information protection is recognized. The theoretical foundation of the right to privacy is the philosophy of liberalism, which protects the individual from unwanted interference from the state and society. The need for private space has evolved in human history along with the growth of individualism. Currently, the right to information privacy is gaining special relevance in connection with the development of digital technologies that allow collecting, storing and processing large amounts of data. As a result, a person, on the one hand, does not know who, when and for what purpose collects his or her data, and, on the other hand, he or she often voluntarily, in connection with the need for social recognition, leaves information about him or herself on social networks. As a result of such actions, the loss of control over personal information can lead to undesirable consequences.

Genetics and the Law

2021 ◽  
Author(s):  
Mette Hartlev
Keyword(s):  
Human Rights ◽  
Genetic Testing ◽  
Informed Consent ◽  
Genetic Research ◽  
Biomedical Science ◽  
The European Union ◽  
Human Beings ◽  
Legal Principles ◽  
The Right To Privacy ◽  
The Right

This chapter discusses how the legal and ethical aspects of gene technology are both a national concern for European states and a European concern addressed by both the Council of Europe (CoE) and the European Union (EU). The CoE has been engaged in bioethical issues since the beginning of the 1980s and has adopted a number of recommendations and resolutions concerned with developments in biomedical science and technologies. Most notable is the adoption of the CoE Convention on Human Rights and Biomedicine (Oviedo Convention) in 1997, which focuses on a number of selected human rights aspects of developments in biomedicine. The Convention includes a number of general legal principles applying to medical interventions on human beings, including informed consent and the right to privacy. The chapter then assesses informed consent and genetic counselling, as well as specific issues related to genetic testing of adults, children, fetuses, and embryos. It also considers genetic research, direct-to-consumer genetic testing, genetic discrimination, gene therapy, and the protection of genetic information.

Art.22 Respect for Privacy

2018 ◽  
Author(s):  
Land Molly ◽  
Giannoumis Anthony ◽  
Kitkowska Aga ◽  
Mikhaylova Maria
Keyword(s):  
United Nations ◽  
Personal Health ◽  
Right To Privacy ◽  
Persons With Disabilities ◽  
Control Information ◽  
The Right To Privacy ◽  
Disability Status ◽  
United Nations Convention ◽  
The Individual ◽  
The Right

This chapter examines the legal and normative obligations of states under Article 22 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) to protect individuals with disabilities against unlawful and arbitrary interference with their privacy, both in general and in particular with respect to their personal, health, and rehabilitation information. For persons with disabilities, the right to privacy plays a particularly important role in helping to guarantee rights such as the rights to equality, to freedom from discrimination, to employment, and to education, among others. This is because the right to privacy provides individuals with the right to control information about themselves, including information related to their disability status. The ability to control and limit discovery and disclosure of one’s disability status is essential in helping to protect the individual from discrimination and stigma.

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