This opinion piece proposes the establishment of a “basic bibliography” for new drugs as a form o... more This opinion piece proposes the establishment of a “basic bibliography” for new drugs as a form of soft incentive to reinforce scientists' commitment to basic research and to acknowledge their contribution to downstream applications.
This is an early version of an entry to be published in 2020 in the Max Plank Encyclopedia of Com... more This is an early version of an entry to be published in 2020 in the Max Plank Encyclopedia of Comparative Constitutional Law. The “right to benefit from progress in science and technology” (more commonly referred to as “the right to science”) is one of the earliest internationally recognized human rights. It can be found both in the American Declaration of Rights and Duties of Man and the Universal Declaration of Human Rights (1948). This article discusses the incorporation of the so-called “right to science” (or, less succinctly, the right to benefit from progress in science and technology) in national constitutions. It does not address the so-called “rights of science” (i.e. the rights of scientists and those essential for the scientific enterprise, like academic freedom, freedom of expression, freedom of movement etc.). First, the article briefly reviews origin, definition, legal value and limitations of the right to science. Then, it traces the four main components of the right ...
The work done by Sally Engle Merry around governance indicators provides a clear example of how h... more The work done by Sally Engle Merry around governance indicators provides a clear example of how her scholarship has been original and impactful. She devoted more than a decade to studying the emergence and use of indicators, a widely used strategy for assessing governance mechanisms. Her body of work on indicators includes three books and more than a dozen journal articles and book chapters. These contributions have reshaped the discourse and forced readers to confront the hidden truth about indicators: their imperfect nature as with any other human construct. I, selfishly, have borrowed from her work and used her lenses in contributing to the study and production of human rights indicators. I see my borrowing as a tribute to a must-read scholar whose ideas are worth entertaining and sharing through our work
In Italy, assisted reproduction is regulated by a variety of sources, the most important being La... more In Italy, assisted reproduction is regulated by a variety of sources, the most important being Law 40/2004. The paper discusses how the tight legal framework allocates ample discretion to physicians who play a major role in various aspects of assisted reproduction – namely in implementing a gatekeeping role whenever a couple applies for access to assisted reproduction, in choosing the techniques that better suits the couple, and in performing preimplantation embryo testing aiming to select which embryo (or embryos) is suitable for implantation. The paper also highlights the professional, legal and ethical responsibility of physicians that arises whenever a couple seeks treatment for infertility or sterility.
Corporations are contested legal entities. Many see them merely as vehicles for financial and bus... more Corporations are contested legal entities. Many see them merely as vehicles for financial and business elites to acquire and maintain unfettered power. In this paper, I look at the relationship between corporate power and corporate structures, and argue that corporate power is importantly located in the exploitation of the principles of separate personality of corporate entities and shareholder limited liability. Courts’ unwillingness to pierce the corporate veil and to extend the liability of parent company/principal to the acts of a subsidiary/agent contributes to enabling the creation and exploitation of corporate networks. This is particularly problematic when the corporate creditors are tort victims, who do not assent to limited liability through voluntary transactions. The argument is supported by empirical evidence of the strategies of three asbestos firms to avoid accountability for their tortious conduct. These strategies were curbed only by recourse to criminal law by hold...
In 2004, the Italian parliament comprehensively regulated medically assisted reproduction. Law 40... more In 2004, the Italian parliament comprehensively regulated medically assisted reproduction. Law 40/2004 has outlawed several techniques and tightly compressed the freedom of research in the area of human reproduction and regenerative medicine. This article analyses the post-2004 political, bioethical and legal debate on assisted reproduction in Italy. The analysis is grounded on empirical evidence on fertilisation outcomes released in 2007 and 2008 by the Italian government, on recent amendments related to the regulation of preimplantation genetic diagnosis and on the debates on the status of spare embryos as for their availability for scientific researches. The analysis shows that Law 40/2004 has failed to improve the access of infertile couples to assisted reproduction techniques and keeps supporting practices that the other jurisdictions have rejected because they are unwise from a clinical standpoint. Moreover, Law 40/2004 created severe limitations to scientific researches in the fields of medical embryology, gynaecology and regenerative medicine. With the political support of some Italian political parties and the Catholic Church, Law 40/2004 disregards the expectations of the majority of Italian citizens, international guidelines of good clinical practice, international codes of medical ethics, the interests of infertile couples and the social and economic relevance of biomedical research.
Among the important ethical challenges that biobanks raise, the shortcoming of the traditional ac... more Among the important ethical challenges that biobanks raise, the shortcoming of the traditional acceptation of informed consent is one of the most debated. The protection of research participants' autonomy is a central theme in current ethical reasoning on biomedical research. In this article, I argue that moral philosophy offers the opportunity to broaden the debate raised by the shortcomings of the established doctrine of informed consent when applied to biobanking activities. The capability approach and deliberative ...
Although the right to science, which includes both the right of scientists to do research and the... more Although the right to science, which includes both the right of scientists to do research and the right of everyone to benefit from that research, was recognised internationally as early as 1948, it is arguably the least known, discussed and enforced international human right. As a result, its binding normative content is not settled and needs to be better clarified and specified. Progress at the conceptual level has been made in the last few years but we are still far from a full understanding of this right and its normative content, and from having a cohesive and authoritative list of duties that states must abide by to fully realise the right. In this chapter, we argue that legal and political mobilisation in international forums provides promising paths to further define the normative content of the right to science. Waiting for the theoretical debate on the right to science to settle before seeking its protection would delay its realisation. Mobilisation through advocacy and li...
Studying publication volumes at the country level is key to understanding and improving a country... more Studying publication volumes at the country level is key to understanding and improving a country’s research system. PubMed is a public search engine of publications in all life sciences areas. Here, we show how this search engine can be used to assess the outputs of life science-related research by country. We have measured the numbers of publications during different time periods based on the country of affiliation of the first authors. Moreover, we have designed scores, which we have named Attraction Scores, to assess the relative focus either toward particular types of studies, such as clinical trials or reviews, or toward specific research areas, such as public health and pharmacogenomics, or toward specific topics, for instance embryonic stem cells; we have also investigated a possible use of these Attraction Scores through a correlation analysis with regulatory policies. We have weighed the statistics against general indicators such as country populations and gross domestic p...
The paper is a draft chapter of a forthcoming book discussing the ethical and legal issues of hum... more The paper is a draft chapter of a forthcoming book discussing the ethical and legal issues of human genetic databases. Reporting data collected as part of a qualitative research project, the present chapter discusses some issues of ownership of samples and data as well a cross-national transfer of samples and data. Regarding ownership issues, data show that the question of patrimonial rights in human genetic material is much contested in theory and in practice. Views on this subject diverge in interesting ways between the industrial world and developing countries, in particular those with a colonial past. Regarding territorial restriction, reasonable arguments for and against were offered by the respondent. In an age of increasing global exchange of ideas, territorial restrictions may look a surprising (if not anachronistic) strategy to protect something - a national, genetic treasure - that by its very nature defies geographical containment. Yet, restrictions do not seem to violate...
This opinion piece proposes the establishment of a “basic bibliography” for new drugs as a form o... more This opinion piece proposes the establishment of a “basic bibliography” for new drugs as a form of soft incentive to reinforce scientists' commitment to basic research and to acknowledge their contribution to downstream applications.
This is an early version of an entry to be published in 2020 in the Max Plank Encyclopedia of Com... more This is an early version of an entry to be published in 2020 in the Max Plank Encyclopedia of Comparative Constitutional Law. The “right to benefit from progress in science and technology” (more commonly referred to as “the right to science”) is one of the earliest internationally recognized human rights. It can be found both in the American Declaration of Rights and Duties of Man and the Universal Declaration of Human Rights (1948). This article discusses the incorporation of the so-called “right to science” (or, less succinctly, the right to benefit from progress in science and technology) in national constitutions. It does not address the so-called “rights of science” (i.e. the rights of scientists and those essential for the scientific enterprise, like academic freedom, freedom of expression, freedom of movement etc.). First, the article briefly reviews origin, definition, legal value and limitations of the right to science. Then, it traces the four main components of the right ...
The work done by Sally Engle Merry around governance indicators provides a clear example of how h... more The work done by Sally Engle Merry around governance indicators provides a clear example of how her scholarship has been original and impactful. She devoted more than a decade to studying the emergence and use of indicators, a widely used strategy for assessing governance mechanisms. Her body of work on indicators includes three books and more than a dozen journal articles and book chapters. These contributions have reshaped the discourse and forced readers to confront the hidden truth about indicators: their imperfect nature as with any other human construct. I, selfishly, have borrowed from her work and used her lenses in contributing to the study and production of human rights indicators. I see my borrowing as a tribute to a must-read scholar whose ideas are worth entertaining and sharing through our work
In Italy, assisted reproduction is regulated by a variety of sources, the most important being La... more In Italy, assisted reproduction is regulated by a variety of sources, the most important being Law 40/2004. The paper discusses how the tight legal framework allocates ample discretion to physicians who play a major role in various aspects of assisted reproduction – namely in implementing a gatekeeping role whenever a couple applies for access to assisted reproduction, in choosing the techniques that better suits the couple, and in performing preimplantation embryo testing aiming to select which embryo (or embryos) is suitable for implantation. The paper also highlights the professional, legal and ethical responsibility of physicians that arises whenever a couple seeks treatment for infertility or sterility.
Corporations are contested legal entities. Many see them merely as vehicles for financial and bus... more Corporations are contested legal entities. Many see them merely as vehicles for financial and business elites to acquire and maintain unfettered power. In this paper, I look at the relationship between corporate power and corporate structures, and argue that corporate power is importantly located in the exploitation of the principles of separate personality of corporate entities and shareholder limited liability. Courts’ unwillingness to pierce the corporate veil and to extend the liability of parent company/principal to the acts of a subsidiary/agent contributes to enabling the creation and exploitation of corporate networks. This is particularly problematic when the corporate creditors are tort victims, who do not assent to limited liability through voluntary transactions. The argument is supported by empirical evidence of the strategies of three asbestos firms to avoid accountability for their tortious conduct. These strategies were curbed only by recourse to criminal law by hold...
In 2004, the Italian parliament comprehensively regulated medically assisted reproduction. Law 40... more In 2004, the Italian parliament comprehensively regulated medically assisted reproduction. Law 40/2004 has outlawed several techniques and tightly compressed the freedom of research in the area of human reproduction and regenerative medicine. This article analyses the post-2004 political, bioethical and legal debate on assisted reproduction in Italy. The analysis is grounded on empirical evidence on fertilisation outcomes released in 2007 and 2008 by the Italian government, on recent amendments related to the regulation of preimplantation genetic diagnosis and on the debates on the status of spare embryos as for their availability for scientific researches. The analysis shows that Law 40/2004 has failed to improve the access of infertile couples to assisted reproduction techniques and keeps supporting practices that the other jurisdictions have rejected because they are unwise from a clinical standpoint. Moreover, Law 40/2004 created severe limitations to scientific researches in the fields of medical embryology, gynaecology and regenerative medicine. With the political support of some Italian political parties and the Catholic Church, Law 40/2004 disregards the expectations of the majority of Italian citizens, international guidelines of good clinical practice, international codes of medical ethics, the interests of infertile couples and the social and economic relevance of biomedical research.
Among the important ethical challenges that biobanks raise, the shortcoming of the traditional ac... more Among the important ethical challenges that biobanks raise, the shortcoming of the traditional acceptation of informed consent is one of the most debated. The protection of research participants' autonomy is a central theme in current ethical reasoning on biomedical research. In this article, I argue that moral philosophy offers the opportunity to broaden the debate raised by the shortcomings of the established doctrine of informed consent when applied to biobanking activities. The capability approach and deliberative ...
Although the right to science, which includes both the right of scientists to do research and the... more Although the right to science, which includes both the right of scientists to do research and the right of everyone to benefit from that research, was recognised internationally as early as 1948, it is arguably the least known, discussed and enforced international human right. As a result, its binding normative content is not settled and needs to be better clarified and specified. Progress at the conceptual level has been made in the last few years but we are still far from a full understanding of this right and its normative content, and from having a cohesive and authoritative list of duties that states must abide by to fully realise the right. In this chapter, we argue that legal and political mobilisation in international forums provides promising paths to further define the normative content of the right to science. Waiting for the theoretical debate on the right to science to settle before seeking its protection would delay its realisation. Mobilisation through advocacy and li...
Studying publication volumes at the country level is key to understanding and improving a country... more Studying publication volumes at the country level is key to understanding and improving a country’s research system. PubMed is a public search engine of publications in all life sciences areas. Here, we show how this search engine can be used to assess the outputs of life science-related research by country. We have measured the numbers of publications during different time periods based on the country of affiliation of the first authors. Moreover, we have designed scores, which we have named Attraction Scores, to assess the relative focus either toward particular types of studies, such as clinical trials or reviews, or toward specific research areas, such as public health and pharmacogenomics, or toward specific topics, for instance embryonic stem cells; we have also investigated a possible use of these Attraction Scores through a correlation analysis with regulatory policies. We have weighed the statistics against general indicators such as country populations and gross domestic p...
The paper is a draft chapter of a forthcoming book discussing the ethical and legal issues of hum... more The paper is a draft chapter of a forthcoming book discussing the ethical and legal issues of human genetic databases. Reporting data collected as part of a qualitative research project, the present chapter discusses some issues of ownership of samples and data as well a cross-national transfer of samples and data. Regarding ownership issues, data show that the question of patrimonial rights in human genetic material is much contested in theory and in practice. Views on this subject diverge in interesting ways between the industrial world and developing countries, in particular those with a colonial past. Regarding territorial restriction, reasonable arguments for and against were offered by the respondent. In an age of increasing global exchange of ideas, territorial restrictions may look a surprising (if not anachronistic) strategy to protect something - a national, genetic treasure - that by its very nature defies geographical containment. Yet, restrictions do not seem to violate...
Although the right to science, which includes both the right of scientists to do research and the... more Although the right to science, which includes both the right of scientists to do research and the right of everyone to benefit from that research, was recognised internationally as early as 1948, it is arguably the least known, discussed and enforced international human right. As a result, its binding normative content is not settled and needs to be better clarified and specified. Progress at the conceptual level has been made in the last few years but we are still far from a full understanding of this right and its normative content, and from having a cohesive and authoritative list of duties that states must abide by to fully realise the right. In this chapter, we argue that legal and political mobilisation in international forums provides promising paths to further define the normative content of the right to science. Waiting for the theoretical debate on the right to science to settle before seeking its protection would delay its realisation. Mobilisation through advocacy and litigation can provide both a remedy to victims of violations in specific cases and cause the development of a body of opinions and other policy outcomes which can contribute, with authority, to defining the content of the right. In the first part of this chapter, we map out the recognition of the right to science under international law, both at the global and regional level. We then look at important international developments, and in particular, the work of the United Nations Special Rapporteur on Cultural Rights, and the emergence of an academic debate on the right to science. We then turn to legal and political strategies to mobilise the right to science. By 'legal mobilisation' we mean the use of courts and tribunals (i.e. judicial remedies) to seek vindication of the right to science for violation of this right. We identify international judicial and quasi-judicial institutions that have jurisdiction over violations of this right, and discuss the procedural requirements and some of the challenges claimants face. With regard to 'political mobilisation', we identify venues where human rights advocates, scientific societies and other civil society organisations could push for the realisation of the right to science. At the global level, we identify opportunities
Human Germline Genome Modification and the Right to Science, Jan 31, 2020
It is the version sent to the publisher, before editing. Please, cite to the published book. This... more It is the version sent to the publisher, before editing. Please, cite to the published book. This chapter is the conclusions of the book. It gives the reader a summary of the current national regulatory standards in the 18 States discussed in the book, and asks to what extent they meet international human rights standards, and, in particular, the five foundational principles that a reading of international bioethics law combined with international human rights standards suggests: i) freedom of research; ii) benefit sharing; iii) solidarity; iv) respect for dignity; and v) the obligation to respect and to protect the rights and individual freedoms of others.
Loyola of Los Angeles International & Comparative Law Review, 2021
During the past three years, we carried out a comparative study of national regulatory frameworks... more During the past three years, we carried out a comparative study of national regulatory frameworks of HGGM, and published the results in a volume entitled “Human Germline Modification and the Right to Science: A Comparative Study of National Laws and Policies.” This article further elaborates on the data presented in the essays in the book to facilitate comparison across national borders. For each state discussed in the book, we highlight fundamental statutory and administrative regulations and substantive provisions pertaining to germline modifications. We show that national legal frameworks are fragmented and outdated, and thus inadequate. We conclude by identifying steps that states can take to clarify and modernize their regulatory frameworks.
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