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Bioethics, Law and Human Rights: Global Intersections
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Bioethics, Law and Human Rights: Global Intersections

A special issue of Laws (ISSN 2075-471X). This special issue belongs to the section "Human Rights Issues".

Deadline for manuscript submissions: closed (30 April 2015) | Viewed by 51513

Special Issue Editor

Prof. Dr. Aurora Plomer

E-Mail Website
Guest Editor
School of Law, University of Sheffield, Bartolome House, Winter Street, Sheffield S3 7ND, UK
Interests: bioethics; law; human rights; research ethics; regulation of new biotechnologies and patents

Special Issue Information

Dear Colleagues,

The interface between bioethics, law and human rights is complex. Bioethics grew out of the efforts of theologians, philosophers and humanists to address moral dilemmas about life and death prompted by the emergence of new biotechnologies and gross abuses of human participants in medical research. In the US and in other economically advanced countries, the growth of medical ethics and bioethics was paralleled with the emergence of a discrete body of medical and health law on abortion, IVF, assisted suicide, much of it judge-made and steeped in religious and political controversy. In the last two decades, an international and human rights law dimension has also begun to emerge with the adoption of dedicated regional instruments on biomedicine and a number of Declarations from UNESCO, culminating in UNESCO’s Universal Declaration on Bioethics (2005). There is a vast body of literature on the history of bioethics, medical ethics and human rights, much of it written by philosophers and physicians or health lawyers, but very little systematic focus on the relation between bioethics, law and human rights. This Special Issue is intended to provide an opportunity to reflect more closely on the legal dynamics of the interface between bioethics, law and human rights.

As well as being complex, the intersection between bioethics, law and human rights is controversial and little studied from the perspective of law. The term “bioethics” is not defined in UNESCO’s Declaration whilst the choice of “bioethics” as a subject matter for international human rights instruments is also unusual. What precisely is the focus of “bioethics” and how does it relate to the universal and global reach of human rights? Are there different regional and local understandings of “bioethics” and human rights? To what extent is “bioethics” a Western phenomenon primarily reflecting the preoccupations of affluent countries over the use of (bio)technologies whose relevance to the health and development priorities of disadvantaged countries may be questioned? One of the aims of this Special Issue is to help clarify, define and understand the meaning of bioethics in the broader context of current global developments on health and human rights.

A related set of questions concerns the relationship between UNESCO’s instruments on bioethics and other international and regional Treaties which are seeking to address global inequalities in health, food, digital/knowledge divides and environmental security. In terms of substantive content, to what extent does the Bioethics Declaration overlap with, or duplicate other human rights instruments? What, if any, distinctive contribution does UNESCO’s Bioethics Declaration make to other well established major international law and human rights instruments? Contributions to the issue will assist in mapping and analyzing the cross-cutting interface of international law and human rights sources in this field.

Thirdly, the issue is intended to make a novel contribution to the identification of critical themes which will help guide the development of contemporary international norms on bioethics and human rights this century. Contributions will help clarify who is the subject of bioethics and human dignity. Is it persons, human life or simply life? Is it individuals or communities? To what extent does the subject of bioethics coincide with the subject of protection of international and human rights law? Are the rights relating to bioethics of a public or private nature? How do they relate to the universal rights proclaimed in the UDHR, ICESCR and ICCPR and what are the implications for the elaboration of the normative content of these rights?

This is an opportunity for law and human rights scholars in particular to contribute to an important special issue which will coincide with the 10th anniversary of UNESCO’s Bioethics Declaration in October 2015. It will be based on an international symposium "Law and Human Rights: Global Intersections", which will be held at the University of Sheffield on 15 May 2015. For more information of the symposium, you may refer to the website: http://www.sheffield.ac.uk/law/research/conferences/bioethics2015"

Prof. Aurora Plomer
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All papers will be peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a double-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Laws is an international peer-reviewed open access semimonthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • intersection of bioethics
  • law and human rights
  • bio-law; health rights
  • universality of human rights
  • global health
  • development and justice
  • unity and fragmentation of international law

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Published Papers (8 papers)

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Research

768 KiB  
Article
Fair and Equitable Benefit-Sharing at the Cross-Roads of the Human Right to Science and International Biodiversity Law
by Elisa Morgera
Laws 2015, 4(4), 803-831; https://doi.org/10.3390/laws4040803 - 21 Dec 2015
Cited by 22 | Viewed by 12234
Abstract
As the debate about the need to clarify the content of the human right to science intensifies, this article assesses opportunities for opening a scholarly and policy dialogue on fair and equitable benefit-sharing between international human rights and biodiversity lawyers. To that end, [...] Read more.
As the debate about the need to clarify the content of the human right to science intensifies, this article assesses opportunities for opening a scholarly and policy dialogue on fair and equitable benefit-sharing between international human rights and biodiversity lawyers. To that end, the article contrasts the emerging conceptualizations of the right to science in the context of international cultural rights and of fair and equitable benefit-sharing under international biodiversity law. It then critically assesses the potential for cross-fertilization with specific regard to: the sharing of scientific information and promotion of scientific cooperation, the transfer of technology, and the protection and valorization of traditional knowledge of indigenous peoples and local communities. While acknowledging that both the right to science and fair and equitable benefit-sharing are far from being fully understood or operationalized, the article argues that developments in international biodiversity law concerning the latter may provide insights into how a vague and optimistic concept can (and when it cannot) lead to tangible outcomes, rather than remaining merely rhetorical. Full article
(This article belongs to the Special Issue Bioethics, Law and Human Rights: Global Intersections)
768 KiB  
Article
Bioethics and Human Rights in the Constitutional Formation of Global Health
by Atina Krajewska
Laws 2015, 4(4), 771-802; https://doi.org/10.3390/laws4040771 - 18 Dec 2015
Cited by 3 | Viewed by 5928
Abstract
“Global health” is an increasingly important area of research and practice, concerned with the profound implications of globalisation for individual and communal health (particularly in developing countries) and focused on achieving health equity for all people worldwide. As such, it is often viewed [...] Read more.
“Global health” is an increasingly important area of research and practice, concerned with the profound implications of globalisation for individual and communal health (particularly in developing countries) and focused on achieving health equity for all people worldwide. As such, it is often viewed as overlapping with public health and, thus, conceptually distinct from the field of biomedicine and bioethics. Both fields bear an uneasy relationship with the field of human rights, which remains largely unexplored. The paper constructively utilises insight derived from theories of global legal pluralism and global constitutionalism to argue, perhaps controversially, that recent developments in international biomedical law and bioethics, constitute an important phase in the constitutional construction of a global health law system. In doing so, the paper analyses the role of human rights in the growing constitutional autonomy and organization of global health. Full article
(This article belongs to the Special Issue Bioethics, Law and Human Rights: Global Intersections)
676 KiB  
Article
Embryonic Human Life and Dignity: The French Connection
by Dimitrios Tsarapatsanis
Laws 2015, 4(4), 755-770; https://doi.org/10.3390/laws4040755 - 7 Dec 2015
Cited by 1 | Viewed by 3994
Abstract
Human dignity is considered by a number of commentators as a normative concept that could potentially bridge the gap between bioethics and human rights. The purpose of this article is to question this assumption insofar as it applies to embryonic human life by [...] Read more.
Human dignity is considered by a number of commentators as a normative concept that could potentially bridge the gap between bioethics and human rights. The purpose of this article is to question this assumption insofar as it applies to embryonic human life by way of a case study. The article will chart the way dignity has been historically used in French political and legal debates since the 1990s to attempt to afford constitutional protection to human embryos. It then proposes an interpretation of why such attempts failed, which could have wider significance for current debates. Full article
(This article belongs to the Special Issue Bioethics, Law and Human Rights: Global Intersections)
1082 KiB  
Article
What Role for Law, Human Rights, and Bioethics in an Age of Big Data, Consortia Science, and Consortia Ethics? The Importance of Trustworthiness
by Edward S. Dove and Vural Özdemir
Laws 2015, 4(3), 515-540; https://doi.org/10.3390/laws4030515 - 20 Aug 2015
Cited by 15 | Viewed by 6078
Abstract
The global bioeconomy is generating new paradigm-shifting practices of knowledge co-production, such as collective innovation; large-scale, data-driven global consortia science (Big Science); and consortia ethics (Big Ethics). These bioeconomic and sociotechnical practices can be forces for progressive social change, but they can also [...] Read more.
The global bioeconomy is generating new paradigm-shifting practices of knowledge co-production, such as collective innovation; large-scale, data-driven global consortia science (Big Science); and consortia ethics (Big Ethics). These bioeconomic and sociotechnical practices can be forces for progressive social change, but they can also raise predicaments at the interface of law, human rights, and bioethics. In this article, we examine one such double-edged practice: the growing, multivariate exploitation of Big Data in the health sector, particularly by the private sector. Commercial exploitation of health data for knowledge-based products is a key aspect of the bioeconomy and is also a topic of concern among publics around the world. It is exacerbated in the current age of globally interconnected consortia science and consortia ethics, which is characterized by accumulating epistemic proximity, diminished academic independence, “extreme centrism”, and conflicted/competing interests among innovation actors. Extreme centrism is of particular importance as a new ideology emerging from consortia science and consortia ethics; this relates to invariably taking a middle-of-the-road populist stance, even in the event of human rights breaches, so as to sustain the populist support needed for consortia building and collective innovation. What role do law, human rights, and bioethics—separate and together—have to play in addressing these predicaments and opportunities in early 21st century science and society? One answer we propose is an intertwined ethico-legal normative construct, namely trustworthiness. By considering trustworthiness as a central pillar at the intersection of law, human rights, and bioethics, we enable others to trust us, which in turns allows different actors (both nonprofit and for-profit) to operate more justly in consortia science and ethics, as well as to access and responsibly use health data for public benefit. Full article
(This article belongs to the Special Issue Bioethics, Law and Human Rights: Global Intersections)
284 KiB  
Article
Privacy, Personhood, and Property in the Age of Genomics
by Wendy Bonython and Bruce Baer Arnold
Laws 2015, 4(3), 377-412; https://doi.org/10.3390/laws4030377 - 30 Jul 2015
Cited by 1 | Viewed by 3756
Abstract
Revolutions in genetic technology have heralded the age of population-scale genomic metadata. This article analyzes the tensions and gaps between traditional conceptions of personhood and international legal responses to a person’s right over disembodied data obtained from his/her body. The opportunities for breakthroughs [...] Read more.
Revolutions in genetic technology have heralded the age of population-scale genomic metadata. This article analyzes the tensions and gaps between traditional conceptions of personhood and international legal responses to a person’s right over disembodied data obtained from his/her body. The opportunities for breakthroughs in healthcare by interrogating population-scale genomic databases are accompanied by questions about privacy, property, dignity, and the nature of information regulation in a global economy. This article highlights instances where law and policy makers have grappled with these challenges, and foreshadows some emerging future challenges. It also highlights differences between jurisdictions, and calls for greater global participation in the development of a coherent framework, rather than continued reliance on a small number of stakeholders, to develop that framework. Full article
(This article belongs to the Special Issue Bioethics, Law and Human Rights: Global Intersections)
264 KiB  
Article
Regulating Gamete Donation in the U.S.: Ethical, Legal and Social Implications
by Maya Sabatello
Laws 2015, 4(3), 352-376; https://doi.org/10.3390/laws4030352 - 28 Jul 2015
Cited by 13 | Viewed by 4196
Abstract
This article explores the practice of gamete donation in the U.S. having in mind the larger question of what do we as a society owe children born as a result (donor-conceived children). Do recipient-parents have a duty to tell their donor-conceived child about [...] Read more.
This article explores the practice of gamete donation in the U.S. having in mind the larger question of what do we as a society owe children born as a result (donor-conceived children). Do recipient-parents have a duty to tell their donor-conceived child about his/her genetic origins? Should the identity of the donor be disclosed or remain anonymous? Does the child have a right to know her conception story and to receive information, including identifying information, about the donor? Furthermore, if a donor-conceived child has a right to know, who has the duty to tell her/him about it? The Article underscores the ethical, legal and social dilemmas that arise, comparing and contrasting with international developments in this arena. It highlights the market-based and more specific medical justifications for regulating this field, explores the emerging so-called right of the child to know his/her genetic origins (“the right to know”), and considers the challenges such a right evokes to existing legal culture and principles of medical ethics in the U.S. as well as other broader societal implications of such a right. Full article
(This article belongs to the Special Issue Bioethics, Law and Human Rights: Global Intersections)
234 KiB  
Article
Solidarity and the Encapsulated and Divided Histories of Health and Human Rights
by Su-Ming Khoo
Laws 2015, 4(2), 272-295; https://doi.org/10.3390/laws4020272 - 12 Jun 2015
Cited by 3 | Viewed by 9447
Abstract
This article examines the central but neglected principle of solidarity in human rights, health and bioethics, a concept subject to contention, evasion and confusion. It addresses the general ambivalence toward solidarity within law, philosophy and politics by discussing solidarity’s co-evolution with inegalitarian encapsulations [...] Read more.
This article examines the central but neglected principle of solidarity in human rights, health and bioethics, a concept subject to contention, evasion and confusion. It addresses the general ambivalence toward solidarity within law, philosophy and politics by discussing solidarity’s co-evolution with inegalitarian encapsulations and divisions of human rights. It argues that a renewed conception of solidarity is essential to meet increasingly salient ethical demands, as gender equality and the individualization of responsibilities coincide with deficits of care and collective responsibility. Questions of embodiedness, (inter)dependence, care and asymmetry are neglected by dominant liberal approaches, but are key to rethinking solidarity. Full article
(This article belongs to the Special Issue Bioethics, Law and Human Rights: Global Intersections)
200 KiB  
Article
Physician Charity Care in America: Almost Always an Illusion, Ever More Commercial
by Bruce D. White and Marleen Eijkholt
Laws 2015, 4(2), 201-215; https://doi.org/10.3390/laws4020201 - 26 May 2015
Viewed by 4976
Abstract
The first Code of Medical Ethics promulgated by the American Medical Association (AMA) in 1847 included a provision that essentially obligated physicians to care for those in their communities who could not afford to pay for professional services. The spirit of that provision [...] Read more.
The first Code of Medical Ethics promulgated by the American Medical Association (AMA) in 1847 included a provision that essentially obligated physicians to care for those in their communities who could not afford to pay for professional services. The spirit of that provision remains embodied in today’s Code. However, a “charity care” ethical obligation may not make as much professional sense as it once did. Health care institutions have assumed a much greater role in providing charity care and many physicians are now under legal and quasi-legal obligations to provide care in some cases. Under the recently enacted Affordable Care Act (ACA)—if fully implemented—it is theorized that as many as 95% of Americans will be covered by some basic insurance plan. Perhaps today’s physicians should tailor the charity care mandate into a new jacket, which envisions that all doctors share equally in the care for those without adequate means. An individual obligation may have to make way for a more communal one in professional codes. Moreover, it may be wise to consider if there are any lessons to draw from other health care systems (e.g., the Dutch), where questions about charity care still exist within a universal health care system context. Full article
(This article belongs to the Special Issue Bioethics, Law and Human Rights: Global Intersections)
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