Autonomy Rights Research Articles

'It is not the State's fault that we have a person like this': relations, institutions and the meaning of 'rights' to carers of People with Psychosocial Disabilities in Chile.

The UN Convention on the Rights of Persons with Disabilities (CRPD) has been adopted by national governments to advance the interests and wellbeing of people with psychosocial disabilities (PPSD). It is often assumed that the adoption of a 'rights' framework will advance the dignity and autonomy of PPSD. However, little is known about how families and communities understand 'rights'. The present paper, based on research conducted in Santiago, Chile, takes a contextual approach to rights, asking: How do family carers of PPSD understand and use the idea of 'rights'? How does the context of caregiving shape families' understanding of rights? Four focus groups were conducted with a total of 25 family carers (predominantly mothers) of people diagnosed with schizophrenia and other severe neuropsychiatric conditions. Thematic analysis was conducted. Carers' experience of caregiving was marked by isolation, stigmatization, a lack of support and mistreatment by public services. Their family networks did not provide sustained help and support, and the public services they had used were characterized by scarce resources and inadequate support. Carers did not refer to rights of dignity or autonomy. Given an unsupportive context, and worries about who would care for their child after the carer's death, their primary interest in 'rights' was a right to guaranteed, long-term care. While carers endorsed the idea of universal, state-supported rights, appeals to compassion and the exchange of favours were spoken of as the most effective strategies for gaining a minimum level of services and support. Carers' understandings, framed against a background of unmet needs and shaped by a history of unsatisfactory interactions with services and institutions, do not resonate with the principles of the CRPD. We suggest an expanded, relational struggle for rights that acknowledges the role of families and the tensions surrounding the distribution of rights within the family.

Religious Associations: Hosanna-Tabor and the Instrumental Value of Religious Groups

In its 2012 decision in Hosanna-Tabor Evangelical Church & Sch. V. EEOC, the Supreme Court held that the Religion Clauses of the First Amendment require recognition of a “ministerial exception” to general antidiscrimination statutes (in that case, the ADA), because religious institutions must have autonomy in selecting their ministers. In the course of its analysis, however, the Court made a very interesting move. In response to the government’s argument that the case could be resolved under the general First Amendment right of association, the Court responded that this position was “untenable,” and indeed “remarkable,” because the very existence of the Religion Clauses indicated that religious groups must be treated differently from secular groups. It also rejected the view that its groundbreaking decision in Employment Division v. Smith, which interpreted the Free Exercise Clause extremely narrowly, precluded reliance on the Religion Clauses here, curtly distinguishing Smith on the grounds that it did not involve “government interference with an internal church decision that affects the faith and mission of the church itself.” Hosanna-Tabor thus appears to stand for the propositions that religious groups are different from secular groups for constitutional purposes and entitled to extra constitutional protections, and further, that religious institutions such as churches possess broader Free Exercise rights than do individuals. In this article, I argue both these propositions are indefensible in light of the text, history, and purposes of the Religion Clauses. I further argue that granting religious institutions special constitutional rights raises some very difficult, ultimately irresolvable boundary problems regarding the scope of the ministerial exception.Ultimately, I conclude that a much better analytic course for the Court to have followed in Hosanna-Tabor would have been to rely on the freedoms of association and Assembly protected by the First Amendment, which the Court so casually rejected. The effect of relying on Assembly and association would be to grant all groups whose activities are relevant to democratic politics a right of autonomy, including a right to select its members and leaders. Religious groups would certainly qualify for such a right (thus affirming the result in Hosanna-Tabor), but so would many secular groups on the same terms. I discuss the ways in which this vision of associational rights fits well with the overall structure of the First Amendment, and with the instrumental role that religious groups (as opposed to individuals) play in our society. Relying on Assembly and association also avoids the boundary problems raised by the ministerial exception, and defuses the tension with free-speech doctrine created by the Court’s preferential treatment of religious groups in Hosanna-Tabor. I conclude by exploring the ways in which the existence of the Religion Clauses may be relevant to religious groups’ Assembly/associational rights, even if they are not the source of those rights.

Collective Religious Autonomy versus Individual Rights: A Challenge for the ECtHR?

The article will focus on the conflicts between individual rights and collective religious autonomy in Europe. The goal is to analyze the approach taken by the European Court of Human Rights to these conflicts and investigate how it influences both individual and collective religious freedom, how it may affect domestic solutions, and how it may be related to other relevant processes in the fields of law, religion and politics at the European level, e.g., in the context of the Council of Europe and the European Union as well as in the (somewhat specific) context of East European countries. The article will put forward an individual (personal) autonomy-based framework for the court to deal with these conflicts.

Las múltiples alteridades en el Desarrollo: más allá de la interculturalidad étnica

Development projects impact material and symbolic conditions of existence, not only those of ethnic groups but those of diverse social groups. The article identifies that regulations no dot recognize multiple Otherness in development, even that Otherness within margins of Western selfhood. Even if regulation of ethnic rights has shown progress, it essentializes ethnicity and does not allow that Other subjects claims find resolution through participation and autonomy rights. Understanding development projects as relational spaces, these projects could operate as regimes of Otherness —of lifestyles, identifications, vital spaces, socioenvironmental relationships, development vision—. However, in its current configuration, interculturalism manifests itself as social, environmental and political conflicts, and not, as the possibility of recognizing the Other and Otherness. The article seeks to transcend ethnicity in the conceptualization of Otherness and interculturality in the context of development.

Counterculture, Property, Place, and Time: Nimbin, 1973

Counterculture, Property, Place, and Time: Nimbin, 1973

The beginning of human life at the laboratory: The challenges of a technological future for human reproduction

This paper analyses the underlying principles and social consequences of the increasing detachment between human reproduction and sexuality via the process of technological intervention in the biological body, with a focus on current debates in Portugal. With biomedical techno-sciences, conception has become artificial (in vivo or in vitro fertilization) and independent of the coital activity. The risks and uncertainties concerning the development of Science and Technique in the biomedical field applied to reproduction present important challenges and bring forth critical questions to future generations and to humanity as a whole. For example, gametes donation (heterologous artificial insemination) implies fulfilling some ethical principles such as informed consent, anonymity and gratuitous involvement; other possible problems include the potential development of eugenic aspirations, dilemmas arising from the commercialization of gametes, embryos and fetus or surrogate motherhood, from reproductive cloning or embryonic stem-cell research techniques. In this framework, new entities appear on the scene like gametes donors, cryopreserved embryos or rented wombs that demand new laws and governmental regulation. Therefore, it is essential to study which values the techno-sciences are actually redefining, the range of social choices towards these values and the consequences these choices have – in terms of parenthood rights and family ties, for example. In this context, the paper will reflect upon these new values and will question whether they are compatible or not with democratic principles such as autonomy, human dignity or equal rights. Building upon my post-doctoral research, I will approach this problem theoretically, using tools from the Sociology of Science and of Medicine, and through data analysis (such as reports from ethical committees, legislation and media).

From Rights to Dignity: Lessons from the Movements for Physician-Assisted Death and Reproductive Rights

In Roe v. Wade the Supreme Court identified the abortion right as “inherently, and primarily, a medical decision” to be decided between doctors and their patients. Early abortion case law closely linked the right to the doctor-patient relationship and situated abortion within the context of healthcare. Over the last forty years, however, the abortion right has come to be viewed almost exclusively as a constitutional right of decision-making or “choice.” Under the Court’s current analysis, the abortion right is cabined exclusively as a constitutional right to decide to terminate a pregnancy and, as a result, the Court has upheld significant restrictions on access to abortion-related healthcare. The aid in dying (AID) movement has experienced the opposite trajectory between framings of healthcare and a constitutional right of decsionmaking. Originally identified as a “right to die” by advocates such as Dr. Jack Kevorkian, the movement has since transitioned to a right framed as healthcare. Dr. Timothy Quill’s call for “death with dignity” helped to reframe the AID movement from a narrow focus on decision-making at death to transforming the process of dying more generally. The transition to death with dignity coincided with an expanded public discourse about how poverty, disability, social and family support, and healthcare access impact end-of-life decision-making. At the same time, the goals of the movement expanded from court-won rights to changing healthcare practices, and increasing healthcare access, legal rights and social support for people facing the end of life. It is a critical time to study and draw lessons from these two movements as they are accelerating in opposite directions: Last year pro-AID legislation was passed in California and was pending in twenty-five states, and cases were filed in California and New York. The Supreme Court will hear oral arguments this term in a Texas case on regulatory restrictions of abortion clinics. Further, more state abortion restrictions were enacted between 2011 and 2013 than in the entire previous decade. While other scholarship has compared AID and the abortion right to consider their doctrinal, moral and ethical similarities, this Article is the first to identify that these two movements arc in opposite directions between framings of healthcare and rights, with vastly different efficacy for the rights holder. I draw upon this comparison to consider how the history and discursive development of these two movements offers the possibility of framing healthcare more broadly within the context of dignity to achieve social justice goals beyond narrow constitutional rights status. The transformation of AID from a constitutional rights frame to a healthcare frame highlights the importance of developing a healthcare model related to dignity that is undergirded by social support, legal rights and healthcare access. However, the history of the abortion right cautions against narrowly identifying healthcare within the confines of the individual doctor-patient relationship because it risks subordinating the decisional autonomy of patients to the decision-making of their doctors. Taken together, these movements gesture toward situating rights within a healthcare framing that considers how social, political and economic systems and relationships come to bear upon decision-making. I conclude that while constitutional rights status is important for anchoring a minimum protection of the right of patient decisional autonomy, a healthcare-as-dignity frame brings with it the possibility of addressing underlying conditions that deprive individuals of meaningful choice in these contexts.

Reflections Upon the Interaction between Domestic and European Personal Data Protection Legislation

The European Council has established the first legal framework for the fundamental right to the protection of personal data, namely the Convention for the Protection of Individuals with Regard to the Automatic Processing of Personal Data (Convention 108). The right to the protection of personal data is closely linked - but not identical - to the right of private life established by Article 8 of the European Convention for the Protection of Human Rights (hereinafter, the ECHR). Article 8 of the Charter of Fundamental Rights of the European Union (hereinafter, the Charter) expressly recognized the right of private life as an autonomous fundamental right. The importance awarded by the EU to the protection of personal data is also highlighted at Article 16 of the TFEU. The protection of personal data arises out of the question of the protection of individual rights by the State and has evolved into the question of how the the State treats and uses its citizens' personal data. On the contrary, in private commercial relationships, the right to the protection of personal data has a horizontal dimension. Does the Charter's fundamental right of personal data protection have direct effect in domestic legal orders? The CJEU has not yet pronounced on the enforceability of this right, however the legal scholar has already considered that Article 16 of the TFEU can be directly invoked. To be directly enforceable in front of domestic jurisdiction, the right to the protection of personal data should be specified by a specific legislation in the EU. To have a full picture it is thus paramount to consider the details of legislation in combination with primary law.Thus, in the next European legislature, a general reform of the data protection framework is envisaged to account for the challenges posed by new technologies of information, globalisation and the increasingly common practice of using personal data to prevent criminal and terrorist actions. The legislative package for the protection of personal data concerns two proposals: a Regulation that generally covers the treatment of personal data within the EU, both in the private and public sectors, and a Directive on Data Retention that aims to prevent, detect or to pursue criminal acts. This contribution not only clarifies the specific content of companies' obligations to respect the European standard for the protection of personal data but also discusses the proposal to revise the general framework to respect the Charter's acknowledgment of the fundamental right of personal data protection. The forthcoming legislative reform will represent an important reference point for countries - such as Switzerland - that are not members of the European Union. This paper assesses whether the European legislative reform on the protection of personal data, in conjunction with national law, responds in a satisfactory manner to the challenges posed by technological evolution and widespread use of the Internet. In recent years, the question of State regulation of the processing of personal data by private companies has become urgent as allegations of unauthorized access to personal data have been hotly debated in the European press. Thus, the paper shall first analyse, the appropriateness of European and States' legislation to properly regulate the effective protection of personal data, in particular of obligations applicable to companies storing and processing personal data on European soil. Does the proposed European legislation in the context of the EU's international agreements with the US provide sufficient legal safeguards to ensure the effective protection of personal data in the post-Snowden era? Specific subparts are devoted to the European reform of companies' criminal liability in cases of cyber-attack (a) and of specific obligations imposed on providers of cloud computing services (b). In the second part, I comment on the interpretation of the European data-protection legislation, provided by the Court of Justice, regarding the obligations imposed upon 'intermediaries' that process personal data, such as the Internet service providers (a) and Internet search engines (b). The Court of Justice has interpreted the European legislation in a manner that allows courts and national authorities to impose on companies a set of safeguards to protect individuals against the infringement of copyright and privacy rights.

Zniekształcone tożsamości wieloetnicznej Ukrainy

Currently, multiethnic Ukraine is inhabited by over 110 nationalities, assimilated to various extents and mostly russianized, particularly in the south-eastern territories. In the area of the former Soviet Union, the self-identification Post Homo Sovieticus is strictly related to the issue of multiculturalism and the conscious choice of ethnic belonging. Despite the few legal acts of Ukraine which guarantee ”the rights of national-cultural autonomy to all national minorities”, the processes of rebirth and development of ethnic groups’ identities are hindered by the specificity of the collective consciousness Post Homo Sovieticus, which – to a large extent – indicates the socio-cultural system of this country situated at the crossroads.

Fallacy or Functionality: Law and Policy of Patient Treatment Choice in the NHS.

It has been claimed that beneath the government rhetoric of patient choice, no real choice exists either in law or in National Health Service (NHS) policy (Whiteman in Health Care Anal 21:146-170, 2013). Thus, choice is considered to be a fallacy in that patients are not able to demand specific treatment, but are only able to express preferences amongst the available options. This article argues that, rather than considering choice only in terms of patient autonomy or consumer rights, choice ought to be seen as serving other functions: Choice serves as a mechanism of destabilisation, i.e., as a lever for change. This is apparent at the level of patient and doctor, and at the level of patient and health authority, but even more so, at the level of government. Patient choice, rather than benefiting the individual, can have effects on a wider scale. It encourages change and reform in healthcare practices and in the NHS institutions.

The fetus, the "potential child," and the ethical obligations of obstetricians.

The right of pregnant women to refuse obstetric interventions is an established tenet of obstetric ethics. However, that does not mean that fetal considerations are inconsequential. Although respect for negative autonomy is largely a settled issue, what is less clear is the degree to which a pregnant woman's affirmative autonomy (the right to demand) should be controlling. We discuss the ethical basis for deciding when a pregnant woman's affirmative autonomy should be decisive. We focus on the ethical consequences when a fetus is considered a "potential child" because of a woman's decision to continue a pregnancy. Her intention determines the relevance and nature of the interests of the future child. Although fetal interests may temporally approach those of a born child, they are, in all cases, still circumscribed by the de facto circumstance of the potential child, ie, the child cannot be treated without treating the mother. That treatment would implicate the pregnant woman's right to bodily integrity. This right is so fundamental to our conception of autonomy that its trespass should give serious pause to all who respect basic human dignity. Accordingly, the future interests of a child should not constrain a pregnant woman's right of negative autonomy (the right to refuse any intervention intended for the putative benefit of the fetus or herself). However, the interests of the potential child may factor into considerations of affirmative autonomy and, in parallel, on a physician's right to refuse a particular intervention or plan of care.

Do realismo à constitucionalização do direito internacional

Initially characterized the Westphalian paradigm in relations between states, stressing among its main features territoriality, willingness, and in relations between state and subject, the objectification of man based on the absolute sovereignty of the state . Later , in the aftermath of demoralization producer of natural law absolutism of positive law , man transcends the axiology of being- person , which entered the orbit of relations between states as subjects of autonomous right . This axiom weakened by the absolutism of sovereignty acquires, also in international relations, constitutional rules tutelage of his personality recognizer already detached from territoriality required by diplomatic protection. Thus, the direct tutelage of international constitucionaliza to be person and limits the actions of the protagonists of classic international law through the proclamation of the international bill of rights

Do realismo à constitucionalização do direito internacional

Initially characterized the Westphalian paradigm in relations between states, stressing among its main features territoriality, willingness, and in relations between state and subject, the objectification of man based on the absolute sovereignty of the state . Later , in the aftermath of demoralization producer of natural law absolutism of positive law , man transcends the axiology of being- person , which entered the orbit of relations between states as subjects of autonomous right . This axiom weakened by the absolutism of sovereignty acquires, also in international relations, constitutional rules tutelage of his personality recognizer already detached from territoriality required by diplomatic protection. Thus, the direct tutelage of international constitucionaliza to be person and limits the actions of the protagonists of classic international law through the proclamation of the international bill of rights

In Defence of Geo-Cultural Identity: An Argument Against Kymlicka's View of Multiculturalism and Minority Rights

Cultural diversity often appears as a basic phenomenon in the contemporary globalized world. People who are culturally marginalized often claim various rights, such as language rights, rights of territorial autonomy, immigration rights, and environmental rights. Conflicts between majorities and minorities are therefore likely, and have indeed caused deadly violence all over the world. Will Kymlicka argues for a new liberal approach to resolve these issues in multicultural politics. He believes that a comprehensive theory of justice in multiculturalism should include universal human rights as well as certain “group-differentiated rights” for minorities. His arguments for group-differentiated rights, as he calls them, are founded upon on equality-based argument, history-based argument, and cultural diversity argument. This paper critically examines Kymlicka’s view of multiculturalism and minority rights, and explores some of his main critiques. It argues that while culture is important for individuals, multiculturalism should rest on the values of cultural diversity and geo-cultural identity.

Suicide: rationality and responsibility for life.

Death by suicide is widely held as an undesirable outcome. Most Western countries place emphasis on patient autonomy, a concept of controversy in relation to suicide. This paper explores the tensions between patients' rights and many societies' overarching desire to prevent suicide, while clarifying the relations between mental disorders, mental capacity, and rational suicide. A literature search was conducted using search terms of suicide and ethics in the PubMed and LexisNexis Academic databases. Article titles and abstracts were reviewed and deemed relevant if the paper addressed topics of rational suicide, patient autonomy or rights, or responsibility for life. Further articles were found from reference lists and by suggestion from preliminary reviewers of this paper. Suicidal behaviour in a person cannot be reliably predicted, yet various associations and organizations have developed standards of care for managing patients exhibiting suicidal behaviour. The responsibility for preventing suicide tends to be placed on the treating clinician. In cases where a person is capable of making treatment decisions--uninfluenced by any mental disorder--there is growing interest in the concept of rational suicide. There is much debate about whether suicide can ever be rational. Designating suicide as an undesirable event that should never occur raises the debate of who is responsible for one's life and runs the risk of erroneously attributing blame for suicide. While upholding patient rights of autonomy in psychiatric care is laudable, cases of suicidality warrant a delicate consideration of clinical judgment, duty of care, and legal obligations.

New Roles and Rules for Patient-Centered Care

New Roles and Rules for Patient-Centered Care

Why are civil liberties more important than executive constraints in economic development? A property rights approach

This paper develops a simple model that helps understand an important fact concerning cross-country pattern of growth and institutions shown by BenYishay and Betancourt (2010). They show that civil freedoms, especially one of their components called Autonomy and Individual Rights, are more important determinants of economic development than constraints on executives, a widely used measure in the literature on institutions and growth. The paper provides an interpretation of this fact through the lense of an argument that puts emphasis on three insights. The first is that civil freedoms can be seen as property rights broadly understood. The second is that with a higher scope of property rights enforced, the government must be able to commit to a lower level of expropriation of income. Third, institutions of freedom are sticky: they must be in line with the culture of the country so that they can be enforced with a reasonable cost. By addressing this specific question of constraints on executives versus civil freedoms the paper joins the literature which emphasizes the importance of culture in economic development.

A legitimação do aborto à luz dos pressupostos do estado democrático de direito

From the perspective of the theory of the constitutionality of abortion rights, we will attempt to present a critical study on the validity of the assumptions of modern and contemporary democratic theories. Casting a critical eye on the model of the deliberative process, centered on the major criterion, we will expose the conflicting positions about the distinction between the level of individual morality and political morality, with the intention to propose the definition of a quadrant for the reasonable exercise of the right of autonomy and self-determination. Finally, we will indicate as central foundation of the demand for control of women’s reproductive process without the interference of the state, the model of moral and political pluralism and its requirement for admitting multiple persons beliefs and convictions in the context of public space.

The fiduciary relationship model for managing clinical genomic "incidental" findings.

This paper examines how the application of legal fiduciary principles (e.g., physicians' duty of loyalty and care, duty to inform, and duty act within the scope of authority), can serve as a framework to promote management of clinical genomic "incidental" or secondary target findings that is patient-centered and consistent with recognized patient autonomy rights. The application of fiduciary principles to the clinical genomic testing context gives rise to at least four physician fiduciary duties in conflict with recent recommendations by the American College of Medical Genetics and Genomics (ACMG). These recommendations have generated much debate among lawyers, clinicians, and bioethicists hence I believe this publication will be of value and interest to your readership.

Strange bedfellows? The action for adultery and the South African Bill of Rights

The action for adultery does not sit comfortably with the Bill of Rights in the South African Constitution, 1996. Historically, the adultery action was designed to protect the husband’s honour in the context of the European honour code. In a recent court judgement, Wiese v Moolman, the court attempted to update the remedy to conform to constitutional requirements, arguing that adultery is an infringement of inherent human dignity. This paper traces the history of the adultery remedy and its links to reflexive honour. It then examines whether the evolved action meets the requirements of the Constitution by focusing on the rights to privacy, freedom of intimate association, and human dignity as a personal autonomy right.