Judit Sandor

Whilst advances in biotechnology and information technology have undoubtedly resulted in better quality of life for mankind, they can also bring about global problems. The legal response to the challenges caused by the rapid progress of technological change has been slow and the question of how international human rights should be protected and promoted with respect to science and technology remains unexplored. The contributors to this book explore the political discourse and power relations of technological growth and human rights issues between the Global South and the Global North and uncover the different perspectives of both regions. They investigate the conflict between technology and human rights and the perpetuation of inequality and subjection of the South to North. With emerging economies such as Brazil playing a major role in trade , investment and financial law, the book examines how human rights are affected in Southern countries and identifies significant challenges to reform in the areas of international law and policy.

At the beginning of the twenty-first century, the human body has become an ambiguous concept. Not only have questions arisen such as when does life begin and end, but even the boundaries of the body have become blurred. As Carole Pateman noted already in 2002: “Where lines are to be drawn about property and commodification, what should be alienable and inalienable, and where the balance should be between the two are some of the most pressing issues of the new century” (Pateman 2002). And inde..

With the technical possibility of genome editing, we have reached a new phase of transforming human beings and even altering our genetic legacy. Genome editing constitutes new responsibilities in many fields. Science and society have never been as dependent on each other as they are today. We must also learn from the past episodes of eugenics and we need to investigate fraudulent practices and cases of failure in scientific research that have often occurred due to merciless scientific competition, profit-seeking commercial interests, or individual pride. Genome editing raises numerous legal questions, such as: Would it be possible to make a legal difference between specific versions of gene editing? Who decides on what is considered a disease or an anomaly, a condition, or a variation? Which diseases are worth being corrected or treated and which ones are not? What kinds of social implications will gene editing bring about when it becomes widely available? Some normative distinction...

The cells, cell lines, embryos, and gametes that are harvested, isolated, purified, fertilized, frozen, stored, and defrosted, tested, diagnosed, examined and even “edited” in laboratories. As a consequence of this multiple form of intervention human cells and molecules have recently become the subject of vibrant political and ethical debates and targets of legal policymaking. In this scientific and political discourse a new phenomenon has emerged, which was coined as ‘molecularization’ by Nikolas Rose in his book, The Politics of Life Itself. For Rose, molecularization is one of the most important characteristics of contemporary biopolitics. When Foucault elaborated his ideas about biopolitics and subjectivity, he still focused on the body as a whole, and the biopolitical control over it, and not on the parts or fragments of the body (Lemke T. Biopolitics: an advanced introduction, New York University Press, New York, 2011). Today, however, not only scientists, but also regulators view humans more and more on the molecular level by developing special scientific terminology and legal norms in the fields of genetic research and testing, stem cell research, and even assisted reproduction. This phenomenon has appeared in several domains of biotechnology, which I will discuss by highlighting the consequences of this new scientific gaze. In this chapter, therefore, I would like to discuss the practical implications of molecularization, and explore how the new biopolitical thinking determines legal structures and public discussion in the light of the current advances in biotechnology. My goal is to incite a legal dogmatic dispute and to encourage a brainstorming that incorporates an element of criticism in the process of placing biological concepts in a new context. I will examine the relevance of molecularization in selected fields, such as genetic research, biotechnological inventions, sperm donation, mitochondrial donation and surrogacy.

Surrogacy can be of various types and the difference in arrangement may imply very different ethical and legal questions. Surrogacy may be prohibited, ignored, tolerated, restricted or permitted in different parts of the world. But this diversity of the ethical and legal norms around surrogacy becomes problematic during transnational practices when the domestic laws or understanding of families often fail to accommodate the children born out of transnational surrogacy. This chapter discusses the controversies arising out of a legal fallout during transnational surrogacy and based on the lessons drawn from legal cases argues for the need for international norms. It examines the possibility of an adequate international legal framework that would better respond to the challenges of transnational surrogacy agreements.

The year of 2020 will certainly be in all future books on the history of epidemiology and the Covid-19 pandemic will be discussed in them as perhaps the most significant public health challenge since the Spanish flu. But I also hope that it will feature as a new chapter in the books on health and human rights. The suffering of millions of people around the world, the deaths and medical challenges have already presented many lessons to learn from. One of the lessons should be to recognize the right to health as a full-fledged human and constitutional right that deserves a much closer attention whenever annual budgets are drafted and it should be considered as a fundamental human right without which no other rights can be exercised in epidemiological crises and even after that.

Neuroenhancement involves the use of neurotechnologies to improve cognitive, affective or behavioural functioning, where these are not judged to be clinically impaired. Questions about enhancement have become one of the key topics of neuroethics over the past decade. The current study draws on in-depth public engagement activities in ten European countries giving a bottom-up perspective on the ethics and desirability of enhancement. This informed the design of an online contrastive vignette experiment that was administered to representative samples of 1000 respondents in the ten countries and the United States. The experiment investigated how the gender of the protagonist, his or her level of performance, the efficacy of the enhancer and the mode of enhancement affected support for neuroenhancement in both educational and employment contexts. Of these, higher efficacy and lower performance were found to increase willingness to support enhancement. A series of commonly articulated cl...

The law has struggled to justify the unilateral use of individual genomic data, as it could never quite fit either into the narrower data protection or the broader privacy frameworks. This article aims to explore this tension by examining rights and interests of biobank participants. This article offers a legal analysis, by looking at how the biobank model fits into a privacy rights framework. The Hungarian law is the primary focus of analysis, but reference is made to international legal norms, as well. The first biobanks were designed with the purpose of achieving collective goals by providing private data from the individual gene donors to scientific research and to the biotechnology industry. The main focus was on data protection. Today, more and more people, however, opt for an active biological citizenship: they want to have access to the results that are relevant to their health. The paternalistic legal attitude does not seem to fit this request to transfer data. In the long ...

ABSTRACT Law and ethics present a distinct pathway in the social sciences analysis of regenerative medicine. They are both normative systems which establish the boundaries of human activities and social interactions following socially recognised value-based considerations. They pursue different social objectives (Adorno, 2009, p. 224), and demonstrate different characteristics. Ethics is more discursive, flexible when determining boundaries in rapidly developing fields, such as biomedicine, and capable of recognising a plurality of non-exclusive viewpoints and value judgements. Law adheres to demands such as certainty, accessibility, clarity and consistency, follows a mainly binary logic distinguishing between legal and illegal in regulating human activity, and it offers binding normative arrangements enforceable in an attached institutional framework. Its characteristics make law an attractive normative system for the entrenchment and compartmentalisation of boundaries negotiated in ethics. The principles of contemporary bioethics provide a value-based normative framework for human activities in biosciences and medicine. They are concerned mainly with human intervention with human life and the use of the human body and human biological material. The foremost principle is respect for the dignity and integrity of human beings which addresses practices of objectifying, instrumentalising, commodifying and commercialising the human body and its parts. The boundaries established in bioethics under the human dignity principle may reflect universal considerations, such as the autonomy of the person, or represent value-judgements of different value communities manifested in the diversity of biomedical research regulatory regimes on the national level. In the latter case, any attempt at legal regulation on the regional or global level needs to recognise the multiplicity of local normative arrangements. In biomedicine, law is responsible for translating into binding rules social and policy expectations of progress and innovation, the demands of commercial stakeholders in the ‘bioeconomy’, the concerns relating to risk and hazard in human interference with biological matter, and in particular, the boundaries of human activity in biosciences as indicated in bioethics. These rules may contain prohibitions and threaten the breach of those prohibitions with sanctions, require human activities to be licensed, screened, monitored, and reviewed, indicate how the market may penetrate into scientific activity and how scientific activity may benefit from the existence of a market, offer incentives for scientific progress, and generally, provide a clear and predictable framework for actors and stakeholders. A potential shortcoming of law and the legal process is that its coverage may not be comprehensive and may lag behind scientific developments. Law may fail to offer a normative solution for novel scientific and technological developments, or may focus on technologies rendered outdated by new advances in science and technology. Law may also struggle with translating permeable and moving boundaries negotiated extra-legally and with accommodating a plurality of non-exclusive viewpoints on what constitutes good (ethically acceptable) and bad science, or science and non-science. The normative arrangements of ethics and law are not isolated. Law gradually incorporated the principles of bioethics often prompted by great social controversies, such as abortion, assisted reproduction, cloning, or human embryonic research. It reacted by drawing up rule-based solutions following or dictating social perceptions. The reception in law of bioethical principles was helped by a common, if imperfect, rights-based language associated with human dignity and integrity. The human rights which correspond to the principles of bioethics now form part of the legal regulation of biomedical research, healthcare and the ‘bioeconomy’. The translation into law of the normative arrangements of bioethics is of central concern in rapidly evolving biosciences and for the profit oriented stakeholders of the ‘bioeconomy’. Discrepancies, ambiguities, and contradictions in the law, or the silence of law are a cause of misdirection for actors and policy makers, or enable opportunistic behaviour. The enhanced normative response of the law may, however, prove to be crucial in settling questions at the frontiers of biotechnological development. Law creates “order by sorting out the complexities of human experience into categories that can be rationally dealt with” and expresses “binding, collective judgements about the nature of things in the world” (Jasanoff, 2002, p. 895). Law as the gatekeeper of ethically acceptable science produces a final, often quick response entrenching boundaries by selecting between right and wrong (lawful and unlawful) human practices. The credibility and integrity of law depends on how successfully it is able to translate the boundaries…

In 2002, I attended the Ninth Session of the International Bioethics Committee of UNESCO in Montreal, and I still vividly remember when the audience discussed the report on preimplantation genetic diagnosis (PGD). There was a heated and passionate debate among the participants, especially between geneticists and disability activists concerning the topic of screening embryos. Strong emotions are understandable as debates on use of PGD encompass issues such as the boundaries of individual choice, the meaning and purpose of reproduction, the contemporary interpretation of eugenic choices, the efficiency and legitimacy of predictive medicine, and the social and medical construction of disability. Selecting the single embryo for transfer may take many different forms. But as technology develops, it seems that the general public is less and less able to follow the newly emerging methods of embryo selection—marked with dry technical acronyms (such as PGD, PGS, FISH)—and, as a result, the ethical relevance and distinction between these methods is often blurred. Partly because of this uncertainty, the scope of PGD and PGS remains largely unregulated, while the accreditations of laboratories provide only technical standards. In my chapter, I will attempt to find distinctions that are relevant from ethical and legal points of view to serve as a basis for a consistent legal approach in preimplantation embryo testing. One may state at the beginning that the mere possibility of choice between genetic traits of the in vitro embryo has already transformed assisted reproduction technologies (ART) which are no longer considered technical solutions for infertility problems. ART gives control to people over reproductive decisions and allows for enhancing the health of the offspring.

Chapter 16 Genetic testing, genetic screening and privacy JUDIT SANDOR Budapest Political Science Department Central European University Budapest, Hungary 1. INTRODUCTION For moral philosophers and lawyers one of the most embarrassing characteristics of ...

This book is a collection of multidisciplinary case studies on biopolitical practices and discourses that have been contributed by political scientists and public policy experts, anthropologists and philosophers, biologists and bioethicists, legal scholars and human rights activists, as well as advanced graduate students at the Central European University (CEU). The majority of the authors have participated in graduate courses in political science and gender studies at CEU, focusing on the human rights aspects of biopolitics and the various forms of commercializing the human body. Some of the case studies have emerged from these courses and thus the chapters of this book are not only thematically interrelated but also share similar analytical perspectives. This is the result of long hours of discussion during the classes, following film screenings or emerging after public lectures on biopolitics organized by the Central for Ethics and Law in Biomedicine (CELAB).The cultural diversity and the multilingual academic environment that characterize CEU have made it possible to develop a pool of unique cases on biopolitics from Armenia, Georgia, Germany, Egypt, Hungary, India, Israel, Poland, Romania, Russia, Serbia, Tunisia, and Turkey. For several contributors to this volume, this is their first publication: a first step in their academic carrier — while for others it is a new case explored within the multidisciplinary scholarly network developing around CELAB. This collection of essays reflects not only the lively discussions we had during the CEU courses or CELAB events, but also provide interesting cases for further comparative studies on biopolitics.The chapters in this book are therefore written by established scholars and young experts on cases mostly from their own countries. Some of the essays focus on deeply ingrained cultural norms related to reproduction, others on the developing regulation of newly emerging technologies of assisted reproduction. There are chapters that discuss new, innovative forms of old population control policies, while others explore the consequences of the emerging biotechnologies, including stem cell research. Some of the texts in this book analyze the biopolitics of the state, while others seek to understand the ‘biopractice’ of traditional communities. The book is edited by Judit Sandor.

This article is concerned with the ultimate objectives of genetic biobanks set up to promote the public interest—being the sharing of samples and data for medical research—and the consequences for personal privacy of realising them. Our aim is to chart the values, interests and principles in play, to consider the challenges of realizing biobanking objectives on a global scale, and to propose viable ways forward that ensure, as far as possible, that access provisions remain fit for purpose throughout the entire life of a biobank, while adequately protecting the privacy interests at stake. It is argued that key features in any robust access model must include mechanisms to (a) maintain participant trust in management of the resource and to measure and respond to participants’ expectations, (b) facilitate and promote the sharing of benefits, and (c) respond timeously and effectively to new challenges.

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Ever since the first transplantation this technology raised several ethical and legal issues. The first successful non-regenerative organ transplantation took place in 1954 when Dr. Joseph E. Murray transplanted a kidney from Ronald Herrick to Mr. Herrick's identical twin Richard, who had been diagnosed with end-stage kidney failure. That time the initial ethical dilemma was whether a healthy donor can be operated in order to save the life of the sick brother. That time it was a miracle that without the use of immunosuppressive drugs, ...

When in vitro fertilization (IVF) treatments first appeared in Hungarian legislation, the related experiences and the moral dilemmas of couples who go through these procedures were unknown. Couples have to make a great variety of decisions during the IVF process. In our study, we focus on the journey of the human embryo in IVF treatment through the ethical lenses of women. In order to explore the differences between established ethical and legal frameworks and the perspectives of women who have participated in an IVF procedure in Hungary, we conducted semi-structured interviews. In contrast to the static view of embryos typical to a part of the ethics literature, which also characterizes most established legal frameworks, patients’ view of embryos of interviewees was dynamic: they interpreted embryos in a malleable and constantly changing way. Embryos were perceived differently depending on time, place, and biological characteristics, and primarily in relation to how they could cont...

In this paper, by applying a feminist bioethical perspective, we identify a new form of medical paternalism that still shapes contemporary legal policies on human egg cryopreservation performed without medical reasons. The fear of negligent, careless women who opt to delay their pregnancy for mere convenience is a widely known gender biased stereotype. Nevertheless, the opinions and judgments of medical professionals on this issue have not yet been sufficiently explored by in-depth research. In this essay, therefore, first we look at the broader bioethical, legal, and social aspects of human egg cryopreservation. In the second part of the paper we discuss a unique qualitative study conducted with professionals working at Hungarian IVF clinics. We argue, based on a bioethical analysis of the collected data, that when new reproduction technologies provide opportunities for women to widen their range of reproductive choices, the traditional forms of medical paternalism can be reinforce...

In Europe, there is a wide variety of genetic tests that various private companies offer to patients or to consumers. More and more people have become curious about their genetic predisposition and susceptibility. Most public health-care systems, however, are not adequately prepared for responding to these new demands and to the results of these genetic tests as, quite often, there is no available therapy for the identified genetic condition. This discrepancy between the newly emerging expectations and the insufficient responses contributes to a further rift between the public and private sectors of health care. Individual genetic test results may also trigger the need for personalized medicine and may open up a competition between the two fields in offering further genetic tests and medical exams. Pro-active patients may need a different kind of information on genetic tests and their implications. In this context, how should the public health system deal with the challenges of private testing? Will private genetic testing transform health care from a solidarity-based system to an individualistic one? In this paper, I would like to explore the emerging legal and ethical issues related to genetic testing and the relevant legal framework that has developed so far. In the conclusion, I will examine the possibilities of further legal development.

Aims: The law has struggled to justify the unilateral use of individual genomic data, as it could never quite fit either into the narrower data protection or the broader privacy frameworks. This article aims to explore this tension by examining rights and interests of biobank participants.

Method: This article offers a legal analysis, by looking at how the biobank model fits into a privacy rights framework. The Hungarian law is the primary focus of analysis, but reference is made to international legal norms, as well.

Results: The first biobanks were designed with the purpose of achieving collective goals by providing private data from the individual gene donors to scientific research and to the biotechnology industry. The main focus was on data protection. Today, more and more people, however, opt for an active biological citizenship: they want to have access to the results that are relevant to their health. The paternalistic legal attitude does not seem to fit this request to transfer data.

Discussion/Conclusion: In the long run, people should have the possibility to contact a biobank and to ask for the return of results. Practical barriers do not constitute a valid argument against the individual's need for disclosure. The law should be on people's side.

In this paper I will analyze the right to health and right to health care in a special context, in the field of organ and tissue donation. I will argue that the cases of organ and tissue transplantation provide a useful means for the discussion of the main conceptual challenges to these twin rights. Furthermore the investigation of the scope of these rights in the context of transplantation provide an important aspect to understand to what extent can right to health encompass not only the claim to have access to basic health services but also to what extent non pecuniary solidarity in the form of relying the others' altruism can shape the contours of these rights. For the purposes of concentrating on right to health I will not differentiate between cadaver and living organ donation, only when it is absolutely necessary to make such a distinction. In order to demonstrate how existing European legislation created a special field to right to health, I will start my analysis with exploring the nature and main sources of right to health then I will demonstrate how new fields might be developed, such as the right to health in the context of organ donation. When I started to work as a lawyer, just two years before the political transition in Hungary, a very unusual legal trial reached the Supreme Court,

This article is an analytical and chronological review of the changing course of abortion law in Hungary since the end of the second world war. During that period, official attitudes toward abortion, and the legal and policy frameworks that give concrete expression to them, have changed several times, sometimes moving back and forth between restrictiveness and permissiveness. Prof. Sandor examines these developments and situates them within the larger context of Hungarian law and public policy, with a view to illuminating the issues at stake in the current abortion debates going on in Hungary.

This article examines the development of the law relating to the application Directive 98/44/EC on the legal protection of biotechnological inventions (Directive) to patents on human embryonic stem cells. Our investigation was prompted by decisions under Article 6 of the Directive concerning the patentability of inventions consisting of or containing human embryonic stem cells (hES cells), a material (a research tool) promising unprecedented breakthrough in biomedical research, by the organs of the European Patent Organisation (EPO), on the national level by the German Federal Patent Court, and by the EU Court of Justice in its recent judgment in the Brüstle case. The three decisions, following a similar logic in interpreting the Directive, excluded the patentability of hES cells erecting a significant obstacle to biopatenting in Europe. Our central question is how the law dealt with the challenges of moral and legal pluralism dominating the selected area, the patenting of human bio...

The present book chapter intends to provide a conceptual framework on the use and misuse of anonymity in biobank projects. The major point of departure is the comparative analysis of various functions of anonymity in the biomedical field. By applying this method, the authors also highlight differences between traditional and contemporary notions anonymity. The other aim of the chapter is

Page 1. 155 JAHR │ Vol. 1 │ No. 1 │ 2010 Judit Sándor* Center for Ethics and Law in Biomedicine, CEU (Budapest, Hungary) * Director of the Center for Ethics and Law in Biomedicine, Professor at the Central European University, Budapest, Hungary. ...