“Better Not to Know?”: Justifiable Limits on the Right to Information in the Realm of dtc Genetic Testing. An Analysis of the European and Spanish Legal Framework

2017 ◽  
Vol 24 (2) ◽  
pp. 175-197 ◽  
Author(s):  
Juan María Martínez Otero
Keyword(s):  
Public Health ◽  
Genetic Testing ◽  
Healthcare Professional ◽  
Present Article ◽  
Legal Framework ◽  
Genetic Tests ◽  
Direct To Consumer ◽  
Legal Restrictions ◽  
Right To Information ◽  
The Right

The rapid advance of genetics increases the availability in the market of different genetic tests, which can be acquired directly by consumers without the intermediation of a healthcare professional. Both the European and the Spanish legal framework have restricted the access to these direct-to-consumer (dtc) genetic tests on the grounds of different reasons, such as the protection of consumers or the preservation of public health. The present article discusses these legal restrictions under the light of the right to information.

A Critique of Legal Framework Facilitating Access to Government Information in Tanzania

2015 ◽  
pp. 1737-1762
Author(s):  
John Ubena
Keyword(s):  
Critical Analysis ◽  
Good Governance ◽  
Universal Access ◽  
Case Law ◽  
Legal Framework ◽  
Theory And Practice ◽  
Government Information ◽  
The Media ◽  
Right To Information ◽  
The Right

This chapter provides a critical analysis of the legal framework for access to information particularly information held by government in Tanzania. The analysis intends to establish whether the existing Right To Information (RTI) legal framework and ICT development in Tanzania facilitates universal and requisite access to government information. In order to do that, the chapter utilises a literature review to understand contemporary trends in both theory and practice. In addition, journal articles, books, reports, case law, and pieces of legislation focusing on RTI are visited to obtain deeper insights in the topic under scrutiny. The findings indicate that, despite Tanzania's efforts to embrace democracy virtues, good governance, and technology, the country lacks adequate legal framework to facilitate universal access to government information and ensure that the Right To Information (RTI) is observed in all the socio-economic contexts. To rectify this problem, there is need to enact the RTI law with clear focus of encouraging access to government information. Although two bills (the Media Service Bill [MSB] and the 2011 RTI) are currently being debated, it is not clear yet when they will become law and subsequently practiced.

Direct-to-Consumer Genetic Testing

2012 ◽  
Vol 5 (1) ◽  
pp. 35-67 ◽  
Author(s):  
Richard A. Stein
Keyword(s):  
Health Care ◽  
Genetic Testing ◽  
Health Care Providers ◽  
Double Helix ◽  
Health Care Facilities ◽  
Past Century ◽  
Care Providers ◽  
Genetic Tests ◽  
Direct To Consumer ◽  
Dna Double Helix

Genetics has fascinated societies since ancient times, and references to traits or behaviors that appear to be shared or different among related individuals have permeated legends, literature, and popular culture. Biomedical advances from the past century, and particularly the discovery of the DNA double helix, the increasing numbers of links that were established between mutations and medical conditions or phenotypes, and technological advances that facilitated the sequencing of the human genome, catalyzed the development of genetic testing. Genetic tests were initially performed in health care facilities, interpreted by health care providers, and included the availability of counseling. Recent years have seen an increased availability of genetic tests that are offered by companies directly to consumers, a phenomenon that became known as direct-to-consumer genetic testing. Tests offered in this setting range from the ones that are also provided in health care establishments to tests known as ‘recreational genomics,’ and consumers directly receive the test results. In addition, testing in this context often does not involve the availability of counseling and, when this is provided, it frequently occurs on-line or over the phone. As a field situated at the interface between biotechnology, biomedical research, and social sciences, direct-to-consumer genetic testing opens multiple challenges that can be appropriately addressed only by developing a complex, inter-disciplinary framework.

The Economics of Personalization in Prevention and Public Health

2013 ◽  
Vol 16 (2) ◽  
pp. S53-S71 ◽  
Author(s):  
Don S. Kenkel ◽  
Hua Wang
Keyword(s):  
Public Health ◽  
Genetic Testing ◽  
Adverse Selection ◽  
Empirical Studies ◽  
Social Science Research ◽  
Genetic Discrimination ◽  
Future Research ◽  
Genetic Tests ◽  
Term Care ◽  
Predictive Genetic Tests

Abstract Personalized prevention uses family history and predictive genetic testing to identify people at high risk of serious diseases. The availability of predictive genetic tests is a newer and still-developing phenomenon. Many observers see tremendous potential for personalized prevention to improve public health. At the same time, the emergence of these new markets raises familiar health policy concerns about costs, cost-effectiveness, and health disparities. This paper first discusses an economic framework for the analysis of personalized prevention. On the demand side, consumers use personalized prevention as a form of information that allows them to make better choices about prevention, including medical care and health behaviors like diet and exercise. On the supply side, an interplay of complex market forces and regulations will determine the prices, advertising, and insurance coverage of predictive genetic tests. Beyond the question of whether health insurance will cover the costs of predictive genetic tests, there is a great deal of concern about whether consumers’ use of genetic tests might place them at risk of genetic discrimination or might lead to adverse selection. The paper also reports descriptive analysis of data from the 2000, 2005, and 2010 National Health Interview Surveys on the use of predictive genetic tests. The empirical analysis documents large socioeconomic status-related disparities in consumers having heard of genetic tests: for example, consumers with less schooling, Blacks, and Hispanics were substantially less likely to have heard of genetic tests. Evidence from other empirical studies provides little evidence that genetic testing leads to genetic discrimination in insurance markets. There is more evidence suggesting adverse selection, where genetic testing leads consumers to purchase long-term care insurance. The paper concludes with some preliminary thoughts about important directions for future research. The goal of the paper is to review relevant research to help develop an economic approach and social science research agenda into the determinants and consequences of genetic tests for prevention.

scholarly journals Novas considerações sobre o acesso ao Patrimônio Musical no Brasil | New considerations on access to Brazilian musical heritage

2011 ◽  
Vol 7 (2) ◽  
Author(s):  
André Guerra Cotta
Keyword(s):  
Cultural Heritage ◽  
Digital Technologies ◽  
Current Situation ◽  
Legal Restrictions ◽  
Right To Information ◽  
Definition Of ◽  
The Right ◽  
The Impact ◽  
Musical Heritage ◽  
Methodological Difficulties

Resumo Este artigo traz considerações sobre o direito à informação no campo da musicologia no Brasil, especialmente sobre o acesso a fontes musicais manuscritas. O autor compara a situação atual com o contexto de fins da década de 1990, apresentando exemplos concretos de avanço em termos de acessibilidade das fontes e reflexões sobre o impacto das tecnologias digitais na área em foco. Finalmente, aponta aspectos em que não houve tranformações significativas, tais como as restrições legais, as dificuldades metodológicas e a falta de mobilização coletiva para a discussão e definição de políticas públicas voltadas para o tratamento e a conservação do Patrimônio Musical no Brasil. Palavras-chave música brasileira, musicologia histórica, acervos, digitalização, patrimônio cultural Abstract This article presents considerations about the right to information in the field of musicology in Brazil, especially on the accessibility to hand-written musical sources. The author compares the current situation with the context of the late 1990s, giving positive examples in terms of accessibility of the sources and reflections on the impact of digital technologies in the area in focus. Finally, we discuss aspects in which there were no significant transformations, such as legal restrictions, methodological difficulties and the lack of collective mobilization for the discussion and definition of public policies for the care and preservation of musical heritage in Brazil. Keywords brazilian music, historical musicology, collections, digitization, cultural heritage

Direct to consumer genetic testing and the libertarian right to test

2017 ◽  
Vol 44 (11) ◽  
pp. 787-789 ◽  
Author(s):  
Wendy Elizabeth Bonython ◽  
Bruce Baer Arnold
Keyword(s):  
Genetic Testing ◽  
Physical Properties ◽  
Prima Facie ◽  
Genetic Privacy ◽  
Physical Body ◽  
Direct To Consumer ◽  
Rights And Interests ◽  
Privacy Violation ◽  
The Right ◽  
Regulatory Intervention

Loi recently proposed a libertarian right to direct to consumer genetic testing (DTCGT)— independent of autonomy or utility—reflecting Cohen’s work on self-ownership and Hohfeld’s model of jural relations. Cohen’s model of libertarianism dealt principally with self-ownership of the physical body. Although Loi adequately accounts for the physical properties of DNA, DNA is also an informational substrate, highly conserved within families. Information about the genome of relatives of the person undergoing testing may be extrapolated without requiring direct engagement with their personal physical copy of the genome, triggering rights and interests of relatives that may differ from the rights and interests of others, that is, individual consumers, testing providers and regulators. Loi argued that regulatory interference with exercise of the right required justification, whereas prima facie exercise of the right did not. Justification of regulatory interference could include ‘conflict with other people’s rights’, ‘aggressive’ use of the genome and ‘harming others’. Harms potentially experienced by relatives as a result of the individual’s exercise of a right to test include breach of genetic privacy, violation of their right to determine when, and if, they undertake genetic testing and discrimination. Such harms may justify regulatory intervention, in the event they are recognised; motives driving ‘aggressive’ use of the genome may also be relevant. Each of the above criteria requires clarification, as potential redundancies and tensions exist between them, with different implications affecting different groups of rights holders.

Is There a Right to Human Dignity? The Example of the Right to Education of Refugees

2019 ◽  
Vol 21 (2) ◽  
pp. 261-279
Author(s):  
Anna-Maria Konsta
Keyword(s):  
Present Article ◽  
Human Dignity ◽  
Asylum Seekers ◽  
Case Law ◽  
Legal Framework ◽  
European Law ◽  
Right To Education ◽  
The Right

Abstract The present article attempts a brief presentation of the legal framework in relation to the protection of the right to education and the protection of the human dignity of refugees, with reference to international and emphasis on European law, in an effort to recognize the inviolability of the right to education of refugees. At the same time, the question is raised if there is an independent right to human dignity or if human dignity is merely a framework term in light of which one could interpret, for example, the right to education of refugees. Through the discussed case-law of the European judicial and quasi-judicial bodies, which use the concept of human dignity, in order to protect asylum seekers, a European concept of human dignity has emerged, which may be acknowledged as an absolute fundamental right.

Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?

2016 ◽  
Vol 53 (12) ◽  
pp. 798-799 ◽  
Author(s):  
Serena Oliveri ◽  
Heidi C Howard ◽  
Chiara Renzi ◽  
Mats G Hansson ◽  
Gabriella Pravettoni
Keyword(s):  
Genetic Testing ◽  
Direct To Consumer ◽  
The Right

scholarly journals La publicidad directa al público de los medicamentos con receta: el justo equilibrio entre los beneficios y los riesgos

2017 ◽  
pp. 269-307
Author(s):  
M. Asunción TORRES LÓPEZ
Keyword(s):  
Prescription Drugs ◽  
Freedom Of Expression ◽  
The European Union ◽  
Direct To Consumer ◽  
Rational Drug ◽  
Constitutional Right ◽  
Right To Information ◽  
The One ◽  
The Right ◽  
Direct To Consumer Advertising

LABURPENA: Ikerketa honetan, jendarteari sendagaien gaineko zuzeneko publizitateaegiteak dituen arriskuen eta onuren inguruan eztabaidatu nahi da; bereziki, medikuaren agindua behar duten edo errezeta behar duten medikamentuei dagokienez. Europar Batasunak ezarri duen esparru juridikoa medikamentuen zentzuzko erabilera lortzeari begirakoa da. Horretarako, hainbat neurri hartu dira; hala nola, errezeta behar duten medikamentuen gaineko publizitatea egiteko erabateko debekua edo errezetarik behar ez duten medikamentuen gaineko publizitate-jarduerari zenbait baldintza eskatzea. Egun, bi herrialdek bakarrik baimentzen dute beren zuzenbidean publizitate mota hori egitea: Estatu Batuek eta Zeelanda Berriak. Artikulu honetan, Estatu Batuetako eredu juridikoaren berri emango dugu, bai eta publizitate-jarduera horren arriskuei eta onurei buruzko doktrina-eztabaidaren eta botere publikoek horren gainean duten kezkaren berri eman ere. Artikulu honetan, bi kontu jartzen dira mahai gainean: babesa merezi duten bi ondasun juridikoren arteko gatazka eta zein den edo izan behar den horien babes-maila. Batetik, publizitatea egiteko eskubidea eta eskubide hori adierazpen-askatasunerako oinarrizko eskubidetzat edo enpresa-askatasunerako eskubidetzat hartzea dago, eta, bestetik, osasun-eskubide izendatutakoaren babesa dago, edota norainokoa den estatuaren erantzukizuna sendagaien zentzuzko erabileran justifikatuta jarduera pribatuan esku hartzeari dagokionez. Gainera, publizitatearen erabiltzaileek informazioa edukitzeko duten eskubidearen funtsezko balorazioa aipatzen da, bai eta jarduera horrek iragartzen den medikamentuaren onuren eta arriskuen arteko bidezko oreka izan dezala eskatzeari buruzko balorazioa ere. RESUMEN: En este estudio se pretende discutir sobre los riesgos y beneficios de hacer una publicidad directa al público de los medicamentos, en especial de los medicamentos que requieren una prescripción médica o medicamentos con receta. El marco jurídico establecido desde la Unión Europea, gira en torno a la consecución de un uso racional de los medicamentos, para lo que se adoptan una serie de medidas como la prohibición absoluta de realizar publicidad de los medicamentos con receta, así como exigir ciertas condiciones a la actividad publicitaria cuyo objeto sea un medicamento sin receta. En la actualidad solo dos países permiten en su Derecho realizar esta publicidad, los Estados Unidos de América y Nueva Zelanda; damos cuenta en esta artículo del modelo jurídico estadounidense, así como del debate doctrinal y la preocupación del poder público sobre los riesgos y beneficios de esta actividad publicitaria. En este artículo se pone sobre la mesa de debate el conflicto entre dos bienes jurídicos dignos de protección, y cuál es o debe ser su nivel de protección: por una parte, el derecho a realizar publicidad y su consideración como derecho fundamental a la libertad de expresión o bien como derecho a la libertad de empresa; por otra parte, la protección del denominado derecho a la salud; y hasta dónde alcanza la responsabilidad del Estado en cuanto a su intervención en la actividad privada con la justificación en el uso racional de los medicamentos. Además, se hace referencia a la valoración sustancial del derecho a la información del usuario de la publicidad y la exigencia de que esta actividad presente un justo equilibrio entre los beneficios y riesgos del medicamento que publicita. ABSTRACT: This study aims to discuss the risks and benefits of direct-toconsumer advertising of drugs and prescription drugs. The general objetive of the regulation in the European Union is to protect the rational use of drugs , and impose on Member States a ban on direct-to-consumer advertising of prescription drugs. Also, when the object of publicity is others drugs, this european regulation stablishs some conditions. Currently, only in USA and New Zealand direct-to consumer advertising of prescription drugs is allowed; we explain the American System, and expose the public debat in this subject. This article presents the conflict between two constitutional right that deserve protection: on the one hand, the right to freedom of expression, also the right to freedom of enterprise or commercial freedom; on the other hand, the so-called right to health; and what is the responsability of the State regarding its intervention in the private sector justified in rational drug use. The article also refers to the right to information and the need for advertising to show a fair balance between the benefits and risks of the advertising drug.

Sign in / Sign up

Export Citation Format

Share Document