The establishment of the Common European Asylum System by 2012 remains a key policy objective for the European Union. According to the Council of the European Union, the development of a Common Asylum Policy should be based on a full and inclusive application of the 1951 Geneva Convention Relating to the Status of Refugees and other relevant international treaties. In the European Pact on Immigration and Asylum attention is brought to the persistence of wide disparities amongst Member States in the (...) granting of protection and the form of protection granted. This is seen as one of the main problems to be addressed in building the CEAS. It is fairly obvious that existing divergences in policy have a substantial impact upon the aims of the CEAS. It can be assumed that the difference in governmental practices involving recognizing asylum seekers on refugee grounds or subsidiary protection grounds may be a substantial factor in the decision-making process on where to apply for international protection. The European Commission stressed the importance, during the second phase of the CEAS, of paying particular attention to subsidiary and other forms of protection. (shrink)

After the establishment of the independent Slovak Republic, legal and institutional ground rules were set for providing asylum to foreigners present on the territory of the Slovak Republic. The national legislation of the last twenty years was adopted in compliance with international treaties and the European Union instruments covering asylum matters. In the field of asylum policy, the Slovak Republic complies with its traditional pillars and supports new forms of protection following the new challenges faced by the international community. (...) The currently valid Asylum Act regulates the international protection of aliens in the Slovak Republic, by defining the conditions and procedures related to granting asylum and provision of subsidiary protection and temporary shelter. The Asylum Act also covers the rights and obligations of different categories of persons, stay in asylum facilities and, partially, the integration of persons that are granted asylum. This article describes and analyses the development of the Slovak asylum legal framework and the concept of asylum policy. Furthermore, it looks at different protection statuses granted to foreigners and finally deals with the refugee migration trends in the Slovak Republic. (shrink)

Starting from 2009, national courts of the EU Member States for the first time gained a “real” right to request the EU Court of Justice for preliminary rulings in asylum matters. First judgments of this Court demonstrate equivocal tendencies: some are blaming the Court for incompetence in asylum matters, others believe that the adoption of authoritative decisions at the European level will assist in developing consistent practice of applying asylum law in the European Union, something that failed at international level (...) due to absence of a single authoritative body to provide guidance on interpretation and application of the 1951 Refugee Convention. Considering that the judgments of the EU Court are part of the EU law, the Member States should develop their national asylum law with due regard being taken to those judgments. By the beginning of 2012, the Court has issued eight judgments on the interpretation of various problematic issues of EU asylum law. This Article analyses the jurisprudence of the EU Court in asylum cases, related to the granting of refugee status and subsidiary protection. It also provides a critical evaluation of those judgments. The main objective of the Article is to familiarise the relevant Lithuanian institutions and lawyers with the first judgments of the EU Court in asylum cases and encourage discussions concerning the application of rules established by the Court in the Lithuanian context. Due to limited size, this Article presents the analysis of two EU Court judgments adopted on interpretation of the 2004 Qualification Directive: Elgafaji v. The Netherlands (2009) dealing with granting of subsidiary protection, and Abdulla and others v. Bundesrepublik Deutschland (2010), dealing with cessation of refugee status. The value of those judgments first of all lies in the guidance they provided to the Member States on such concepts as: protection in a situation of an armed conflict, agents of protection, effectiveness of protection; as well as determination of a relationship between refugee status and subsidiary protection, relationship of the Qualification Directive with the European Convention on Human Rights and Fundamental Freedoms (ECHR), also cessation of protection. Elgafaji decision, while quite liberal with regard to persons seeking international protection, is not so liberally applied in the Member States’ practice and does not in itself guarantee positive outcome of the application of a concrete individual fleeing from an armed conflict, or a liberal approach to granting subsidiary protection in the Member States. Based on Elgafaji judgment it is clear that: Art. 15(b) of the Qualification Directive correspond to Art. 3 ECHR, while Art. 15(c) provides additional protection and in that it expands the Member States’ obligations beyond the ECHR to provide protection to persons fleeing in situations of armed conflict. While not every person arriving from an armed conflict situation would automatically fall under the granting of subsidiary protection, in certain exceptional situations indiscriminate violence may amount to individual threat without invoking personal circumstances. The EU Court departed from the individualisation requirement applied by the European Court of Human Rights in Art. 3 cases and did not also rely on international humanitarian law, by introducing a “sliding scale” formula for establishing an individual threat in armed conflict situation instead. This formula addressed the alleged internal discrepancy between “individual threat” and “indiscriminate violence”. The Abdulla decision brought in the human rights and law enforcement perspectives to the interpretation of cessation clauses, however it represents a rather superficial approach in the context of the analysed concepts (e.g. towards effectiveness of protection provided by the multinational armed forces) and is likely to be incompatible with the latest legislative trends in the EU asylum instruments (e.g. determination of refugee status and subsidiary protection by means of a single procedure) and the recent jurisprudence under the ECHR (e.g. failure to ensure a minimum standard of living may violate the ECHR). (shrink)

Even though the Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR) does not explicitly address the rights of asylum seekers and refugees, the case law of the European Human Rights Court (ECtHR) confirms that their rights can be successfully defended under this mechanism. In parallel, in its evolving jurisprudence on asylum the Court of Justice of the European Union (CJEU) refers to the Strasbourg case law, where there is a certain interrelationship between these two jurisdictions, in (...) particular given the recent ECtHR pronouncement on “EU Dublin transfers”. The article aims at evaluating protection available for asylum seekers and refugees under the ECHR, while comparing it with protection of asylum relevant fundamental rights under the EU legal order and the most recent jurisprudence of the CJEU in asylum cases. The authors also analyze which of the two systems is more favourable and what are their limitations. Thus, the article offers to students and practitioners a detailed analysis of ECtHR and CJEU jurisprudence in asylum cases through a comparative perspective, as well as the key problematic aspects arising in both jurisdictions and their junction. The jurisprudence of the ECtHR reveals that despite the most developed protection from expulsion under Article 3 of the ECHR, it does not sufficiently secure status for the concerned persons. Effective remedy requirements under the ECHR allow for filling the gaps of national asylum procedures, while recognition of vulnerability and special status of asylum seekers by the ECtHR assist in addressing still commonly prevailing detention problems of asylum seekers in Europe. In the context of family protection, the recognition of positive obligations by states to reunite the refugee families is still rudimentary, thus, clearly Article 3 protection in expulsion cases takes over Article 8. At the same time, the jurisprudence of the CJEU in asylum cases is still inconsistent, as the court sometimes takes decisions without including human rights into its’ analysis (Kadzoev, Arslan, K.), while in other cases refers to the Charter (MA and others), verifies if its’ own decision is in line with the ECtHR jurisprudence (Elgafaji) or shapes secondary legislation in line with Strasbourg arguments and findings (N.S.). Quite likely, the ECtHR practice will have an important influence on the developments of subsidiary protection in the EU, at least in the context of Articles 2 and 3 of the ECHR, and serve as an important reference for interpretation of various concepts under the EU Qualification and Procedures Directives. The comparative analysis of pros and cons of the two mechanisms demonstrates that the main advantage of the ECtHR is individual justice possibility, which is not yet accessible under CJEU preliminary judgement procedure and its input in developing asylum law concepts, such as non-state agents of persecution, internal protection or even subsidiary protection regime under EU asylum law. Thanks to the ECtHR, the realistic possibility to question the application of certain EU norms has emerged (Dublin Regulation). While the ECtHR does not have such a specific competence over asylum issues as the CJEU and is clearly a slow and seriously overburdened mechanism, the pilot judgement procedure seems to be increasingly capable of providing guidelines to the states concerning systematic problems in their asylum procedures. Thus, both jurisdictions in their own ways contribute to strengthening asylum seekers’ protection while forming a common oasis for these individuals in Europe. (shrink)

The intensification of cross-sector collaboration phenomena has occurred in multiple fields of action. Organizations in the private, public, and social sectors are working together to tackle society’s most wicked problems. Some success has resulted in a generalized belief that cross-sector collaborations represent the new paradigm to manage complex problems. Yet, important knowledge gaps remain about how cross-sector alliances generate value for society, particularly to its beneficiaries. This paper answers the question: How cross-sector collaborations lead to systemic change? It uses (...) a qualitative embedded case study design. I use two general cases of alliance-based interventions in the developing country Colombia. Embedded cases within each general case identify evidence of collective action capacity of the beneficiaries. Findings identify and explain alliances’ contributions to beneficiaries’ capacity building: brokering trust and creating spaces where beneficiaries develop an emergent collective action capacity. Alliances also enable beneficiaries to enact that capacity by building bridges, circulating capitals, and buffering relationships to protect people’s initiatives. Alliances and empowered collectives of beneficiaries produce systemic change using five mechanisms: brokering trust, creating spaces, building bridges, circulating capitals, and buffering relationships. Beneficiaries increased capacity for collective action is an outcome that becomes an alliance input, leading overtime to further benefits involving systemic change. (shrink)

Using the case of food safety governance reform in Japan between 2001 and 2003, this paper examines the relationship between science and trust. The paper explains how the discovery of the first BSE positive cow and consequent food safety scandals in 2001 politicized the role of science in protecting the safety of the food supply. The analysis of the Parliamentary debate focuses on the contestation among legislators and other participants over three dimensions of risk science, including “knowledge,” “objects,” and “ (...) class='Hi'>beneficiaries.” The metaphor of “seven samurai” and the relationally situated roles of “samurai,” “bandits,” and “beneficiaries” are used to show that in the process of policy making certain moral and ethical expectations on a new expert institution for food safety were contested and negotiated to frame responsibilities and commitments of social actors for creating the food system based on trust. (shrink)

The Ayushman Bharat scheme is a government health insurance program that will cover about 100 million poor and vulnerable families in India providing up to INR 0.5 million per family per year for secondary and tertiary care hospitalization services. In addition, it also proposes to establish 150,000 health and wellness centers all over the country providing comprehensive primary health care. The beneficiaries of the hospital insurance scheme can avail health care services from both public and empanelled private health facilities. (...) This scheme is one of the largest government-sponsored health insurance schemes in the world. Previous experience with government-financed health insurance schemes in India has shown that they are inequitable, inefficient, and do not provide financial protection. There is a lack of clarity on the budgetary provisions over the years when the utilization is likely to increase. The Ayushman Bharat scheme in its current form strengthens the “for profit” private health sector, requiring greater emphasis on its regulation. The scheme, which has primary, secondary, and tertiary care components, places a great focus on the secondary and tertiary care services and requires more investment in comprehensive primary health care. The potential problems of “profit-motivated” supplier-induced demand by private health care providers and corrupt practices are possible ethical burdens of the scheme. For the Ayushman Bharat to meet the ethical principle of justice, it should first address universal coverage of comprehensive primary health care and move on to hospital insurance in a progressive manner. The scheme should have provisions to strictly regulate secondary and tertiary care hospitalization in the private health sector to prevent misuse. It is the ethical responsibility of the government to ensure a strong and robust public health system, but the current provisioning of the Ayushman Bharat scheme does not do this and the reasons for this are explained in this paper. (shrink)

Research on the nutrition transition often treats dietary changes as an outcome of increased trade and urban living. The Northern Food Crisis presents a puzzle since it involves hunger and changing diets, but coincides with a European ban on trade in seal products. I look to insights from economic sociology and decolonizing scholarship to make sense of the ban on seal products and its impacts. I examine how trade arrangements enact power imbalances in ways that are not always obvious. I (...) explain how the ban’s exemption for Inuit-produced seal goods explicitly aims to protect Inuit from the harshness of capitalism and preserve their traditions. In this respect, the Northern Food Crisis is an embodiment of European visions of who Inuit are expected to be and how they are supposed to act in the global economy. (shrink)

During the last twenty – thirty years there has been unprecedented demand for new legal regulation in the field of environmental protection, which influenced the immense growth in both the body of environmental legislation and in re-thinking the idea and principles of the environmental protection itself. The provisions of environmental law are passed, accepted and obeyed with a great resistance in the society. On the one hand, environmental law may be defined as a value system that seeks to (...) induce humans to act as stewards of nature rather than only its exploiters, and therefore the environmental provisions are construed in a manner that the main instruments are limitations of different activities in order to prevent the disruption of natural systems. On the other hand, by doing so the environmental law places nature and future generations (those categories commonly do not have any legal personality) and not the human (the sole addressee and the beneficiary of the traditional legal system) in the centre of environmental regulation. This concept radically transforms the relationship between nature and mankind by subordinating the initiative to benefit from legal regulation. By doing so, the environmental provisions make the opposite and evolve tension in respect of such rights as the right to property, the right to personal life, or individual welfare. In the present research the aim is to disclose the origins and the most important principles of international and regional legal regulation of environmental protection, and to analyse the essence of environmental law in the context of public interest. The environmental law is analysed in the context of such human rights as the right to property and the right to personal life. (shrink)

Definitions and distinctions -- Classification -- Of the ends of punishment -- Cases unmeet for punishment -- Expense of punishment -- Measure of punishment -- Of the properties to be given to a lot of punishment -- Of analogy between crimes and punishment -- Of retaliation -- Popularity -- Simple afflictive punishments -- Of complex afflictive punishments -- Of restrictive punishments--territorial confinement -- Imprisonment -- Imprisonment--fees -- Imprisonment examined -- General scheme of imprisonment -- Of other species of territorial confinement--quasi-imprisonment--relegation--banishment (...) -- Of simply restrictive punishments -- Of active or laborious punishment -- Capital punishment -- Capital punishment examined -- Punishment analyzed -- Of the punishments belonging to the moral sanction -- Forfeiture of reputation -- Of pecuniary forfeitures -- Forfeiture of condition -- Forfeiture of the protection of the law -- Naturally extravasting punishment--rules concerning it -- Punishment apparently, but not really, mis-seated--civil responsibility -- Mis-seated punishment, varieties of -- Vicarious punishment -- Transitive punishment -- Disadvantages of this mode of punishment -- Collective punishment -- Random punishment -- Cause of the frequency of mis-seated punishment -- Inconveniences of complex punishments -- Of transportation -- Panopticon penitentiary -- Felony -- Of præmunire -- Outlawry -- Excommunication -- Choice of punishment--latitude to be allowed to the judges -- Of subsidiary punishments -- Of surety for good conduct -- Defeazance of punishment. (shrink)

Preventive vaccination can protect not just vaccinated individuals, but also others, which is often a central point in discussions about vaccination. To date, there has been no systematic study of self- and other-directed motives behind vaccination. This article has two major goals: first, to examine and distinguish between self- and other-directed motives behind vaccination, especially with regard to vaccinating for the sake of third parties, and second, to explore some ways in which this approach can help to clarify and guide (...) vaccination debates and policy. I propose conceiving of vaccination in terms of three basic elements: the vaccination decision-maker, the vaccine recipient and the primary beneficiary. I develop a taxonomy based on the relations between these elements to distinguish four kinds of vaccination: self-protective, paternalistic, altruistic and indirect. I finally discuss the case of human papillomavirus vaccine regulation for men and women to show how each kind of vaccination is associated with and raises specific ethical questions. (shrink)

continent. 1.4 (2011): 242—252. Introduction The following two works were produced by visual artist Jonas Staal and writer Vincent W.J. van Gerven Oei during a visit as artists in residence at The Bag Factory, Johannesburg, South Africa during the summer of 2010. Both works were produced in situ and comprised in both cases a public intervention conceived by Staal and a textual work conceived by Van Gerven Oei. It was their aim, in both cases, to produce complementary works that could (...) be read “through each other,” in which the movement of artistic construction would be imitated by textual deconstruction and vice versa. Both works deal with the way in which capital, apartheid, and monumentality are interwoven in South-African society. The Missing Link addresses a monument for democracy, erected on the premises of a private corporation running both an amusement park and the Apartheid Museum franchise. The textual intervention accompanying this public intervention investigates the limits of the inclusiveness of the anti-discrimination section in the South-African constitution, itself a monumental work of democracy. The Monument for the Distribution of Wealth deals with the history and eventual dissolution of a monumental square, commemorating the Soweto Uprising, in one of the poorest townships of Johannesburg. The history accompanying this public dismemberment of memory is equally fragmented, which is expressed by the many voices recounting uncertain and perhaps even irrelevant “facts” about the genius loci, the way in which the memorial space has actually entered into the memory of the inhabitants surrounding it. Next to their individual practices, Staal and Van Gerven Oei have worked together on a number of projects ever since 2007, including several art residencies. Their work involves an investigation of the different interfaces between art, politics, and public space in media ranging from theater and public interventions, to video installations and (co-authored) textual works. The Missing Link Missing Link (1) Missing Link (2) Missing Link (3) Intervention on the monument entitled The Seven Pillars of the Constitution , part of the Apartheid Museum in Johannesburg, South Africa. The Seven Pillars represent the constitutional values propagated in South Africa since the abolition of the apartheid regime. The monument and museum were built by the Gold Reef Resorts corporation, which is also responsible for the theme park and casino next to it. By placing the word “capitalism” on the wall surrounding the museum, the capitalist system and the constant social divisions that it implies are interpreted as sophistic continuations of apartheid politics. Through the capitalist system, apartheid is still operational within South African society. Whereas during the apartheid regime, the separation clearly ran along race divisions, in the current, “democratic” system, the same actual separation is sustained without it being an explicit element of the foundations of the country, i.e. the constitution. This intervention foregrounds the constant role of capitalism is both periods. At the same time the intervention acknowledges that contemporary Western artisthood is a mirror of the privileges that are offered by the capitalist system, and the type of artist that it produces. The intervention initiates a critical discourse concerning the capitalist system situated within the disaster of capitalism itself, in other words: through the desire to break with the presumption that art would be able to operate outside the capitalist system and to confirm that art—and the artist himself—is in fact modeled on this system. The public intervention by Staal was supplemented by a textual intervention by Van Gerven Oei: a proposition to alter the seventeenth amendment of the South African constitution. Even though the anti-discrimination legislation in South-Africa is one of the most stringent and inclusive in the world, one factor—wealth—remains outside its scope, thus continuing the schisms along racial lines produced during the apartheid regime: §9.3. The state may not unfairly discriminate directly or indirectly against anyone on one or more grounds, including race, gender, sex, pregnancy, marital status, ethnic or social origin, colour, sexual orientation, age, disability, religion, conscience, belief, culture, language, birth, and wealth. Monument for the Distribution of Wealth Intervention concerning the June 16 Memorial Acre in Central Western Jabavu, one of the poorest townships of Johannesburg. The monument comprises a park on which different are placed recalling an important protest the black population against the former apartheid regime. In 1976, from a school adjacent to the park, they started a massive protest against the introduction of Afrikaans in the school curriculum. The police reacted violently, and shot several hundreds of students. The construction of the June 16 Memorial Acre was started in 2005, and from the start was the paragon of corruption. Coordinated by local politicians, some family members of the protest leader from 1976 gained control of the realization of the monument, outside the regulation through external institutions. The available budget of 41 million rand (at that time well over 5 million euro) was largely embezzled. In the meantime, the monument has become fully dilapidated and defaced. The park has become overgrown with weeds and covered in a layer of dirt, and the local population is slowly plundering the square to use the material for the construction and decoration of their own houses. The Monument for the Distribution of Wealth develops the dynamics already existent around the June 16 Memorial Acre. Without obtaining official permission in advance, several local inhabitants were hired to break down the monument, sort the materials, and offer it to the neighborhood. Thus, the redistribution of wealth after the fall of the apartheid regime is finally taking place, albeit from the mere remains of the capital that was once invested in the community. The words “monument” and “for free” are spray-painted on the stacks of material, both in English and Zulu, as these are locally the most common languages. Van Gerven Oei supplemented Staal’s public intervention with an account of the history of the monument based on a series of interviews. The account clarifies how the different interests within the protest 1976 are reflected in the exceeding decay of the park, and how in the end those interests were represented by the June 16 Memorial Acre. Monument for the Distribution of Wealth 1: Removing stones Monument for the Distribution of Wealth 3: Pulling down statues Monument for the Distribution of Wealth 4: Offering the material Monument for the Distribution of Wealth 5: Offering the material Monument for the Distribution of Wealth 6 The next day A Fragmentary History of the Monument for the Distribution of Wealth, Formerly Known as the June 16 Memorial Acre in Central Western Jabavu, Soweto Vincent W.J. van Gerven Oei The following text, based on interviews and online research aims to provide parts of a history of the park in front of Morris Isaacson High School in Central Western Jabavu, Soweto. The idea for the transformation of the park into a memorial site has its source in the events of June 16, 1976: the start of the the student uprising in Soweto. The development of the park was started in the early 1980s, and the actual transformation into a memorial site, the June 16 Memorial Acre, was initiated in 2005. Over the last few years, several monumental additions have been made to the park: A marble monument with three pillars was revealed on June 16, 2006. A sculpture of a book and several billboards on June 16, 2008. A sculpture of student leader Tsietsi Mashinini on June 16, 2010. The park was transformed into the Monument for the Distribution of Wealth on August 3, 2010. According to the entry “Youth Struggle” on the website South African History Online, the Bantu Education Act was introduced in 1953 . In 1954 , Dr Verwoerd, Minister of Native Affairs, stated: “What is the use of teaching the Bantu child mathematics when it cannot use it in practice? That is quite absurd.” According to the entry “Soweto uprising” on Wikipedia, the Afrikaans Medium Decree was issued in 1974 , forcing all black schools to use Afrikaans and English in a 50-50 mix as languages of instruction. The Regional Director of Bantu Education (Northern Transvaal Region), J.G. Erasmus, told Circuit Inspectors and Principals of Schools that from January 1, 1975 , Afrikaans had to be used for mathematics, arithmetic, and social studies from standard five (7th grade). English would be the medium for general science and practical subjects. Indigenous languages would be used for religion instruction, music, and physical culture. According the entry “Soweto uprising” on Wikipedia, on April 30, 1976 , students from the Orlando West Junior School in Soweto went on strike, refusing to go to school. Their example was followed by other schools in Soweto. A student from Morris Isaacson High School, Toboho “Tsietsi” Mashinini, proposed a meeting on June 13, 1976 to discuss further action. According to Weizmann Hamilton’s article “The Soweto Uprising 1976,” which appeared in the September 1986 edition of Inqaba Ya Basebenzi (Fortress of the Revolution), on June 13, 1976 , the South African Students’ Movement called a meeting at the Donaldson Community Center in Orlando. 300-400 Students representing 55 schools decided to hold a mass demonstration on June 16. According to Brian Mokhele, member of the Joint Community Safety Forum, Dr Edelstein was the first victim of the Soweto uprising and killed the day before the march on June 15, 1976 . Edelstein was an administrator at the pass office in Jabavu and gave golf courses to the local community. Edelstein was put in a garbage bin and pierced by pickaxes. The garbage bin was left at the very spot of the murder for many years. A few years ago, a child was beheaded at the same spot, and the basketball court next to it has been abandoned since. According to Marcus Neustetter, founder of the Trinity Session, this story is untrue. According the entry “Soweto uprising” on Wikipedia, on June 16 , Tsietsi Mashinini led students from Morris Isaacson High School to join up with others who walked from Naledi High School. A crowd of between 3,000 and 10,000 eventually ended up near Orlando High School. According to Raymond Marlowe, a local photographer, Tsietsi Mashinini was heading the march. According to the entry “Hector Pieterson” on Wikipedia, Dr Edelstein died on June 16, 1976 , stoned to death by mob and left with a sign around his neck proclaiming “Beware Afrikaaners.” The first child to die that day was called Hastings Ndlovu. According to Pat Motsiri, Orlando West is claiming struggle heritage through the Hector Pieterson Museum, while Hector Pieterson was from Jabavu. According to Pat Motsiri, his generation effectively struggled between 1980 and 1991, forcing the release of Nelson Mandela and negotiations with the apartheid regime while the 1976-generation was safely in exile. Nevertheless, this has not been recognized in any monument. After the abolition of apartheid, the generation from 1976 returned from exile, occupied important government and ANC positions, creating an abundance of 1976 memorials and refusing to acknowledge that this was only possible because of the younger generation’s struggle. He calls this a generational conflict. According to Archibald Dlamini, the park officer responsible for the Memorial Acre, he started working for the municipality in 1978. In 1981/82 , Isaac Makhele from Pimville, who used to work in the cemetery business, was the first developer of the park. It used to be just a normal park until City Parks decided to develop the Memorial Acre in 2006. In 2007 the work was stopped by the community. According to Brian Mokhele, he left the country in 1989 after he participated in the riots of 1986. But when he returned in 1999 he found that nothing had changed. He says that they were promised to be protected by the Constitution, but that reality is different. The police uses fear to suppress them so that they don’t come out to talk openly. He has been arrested twice, both times harassed and tortured by the police, but in the end always released without indictment. He says that this is their way to threaten communities to back off from politics. According to Moses, who is sitting outside rolling a joint, Brian knows everything. He tells Brian to tell me everything he knows. According to Brian Mokhele, Tsietsi Mashinini was possibly murdered in 1990 during his exile in New York. Two weeks before he was supposed to return to South Africa, his papers in order, he was found dead under mysterious circumstances. His coffin was sealed when he was buried. According to Pat Motsiri, he came up with the idea for the Memorial Acre in 2003 . He submitted the documents for the proposal to the council, which sidelined him as soon as the budget came out in 2005 . According to Brian Mokhele, there was on estimation R 41,000,000 spent to redesign the park and turn it into the Memorial Acre. The millions were divided by Amos Masondo, the mayor of Soweto, the local councilor Bongani D. Zondi, and the director of the city of Johannesburg, Pat Lephunya. They were dividing the money between several contractors: Tsietsi Mashinini’s brothers were involved in the development of the park, they got the tender to do the green areas, the landscaping. Construction was done by other companies, some did the paving, the toilets, etc. EMBA, a private company appointed by the municipality was in control of the money flow, but the money was quickly gone. According to Raymond Marlowe, the contractor bought a BMW with the money. According to Archibald Dlamini, the Mashinini brothers got the tender, so the space would look more like the other places around in Soweto. It was agreed that after they were done, they would return the property to the municipality. They did whatever they could do. According to Mafaisa, a member of the Jabavu business community, he was one of the contractors for the landscaping and the pavement under Mpho Mashinini, one of the brothers. He says that I should contact Mavi for information on Mpho. According to Poi Stuurman, a local youth worker, Mafaisa is one of the guys who ran away with the money. According to Mavi, Mpho Mashinini was never a contractor. The contracts were organized by Sbu Butelezi, the former head of the Gauteng Department for Public Works. The June 16 Foundation and the Mashinini brothers will be the beneficiaries of the park when it is finished. According to Brian Mokhele, City Parks did not accept the Memorial Acre because it was not finished. The rest of the year, the unfinished park is not maintained, as should have happened. This was done deliberately so that in the end they can just clean the whole thing up and have a reason to redo the whole park. According to Brian Mokhele, the Mashinini brothers now work for the government. People that manipulate for money purposes always come from the government’s side. Because the park was left unfinished, the people from the neighborhood are taking away the stones to decorate their own homes with. According to Archibald Dlamini, because City Parks doesn’t accept responsibility of the park, he officially has nothing the guard, except for his cottage, which is municipal property. The thieves come at night and destroy the park, but he cannot do anything because he is sleeping. According to the website of the Thanda Foundation on June 16, 2006 a bronze statue of Hector Pieterson, the first child to die in the 1976 protests, made by Kobus Hattingh and Jacob Maponyane was unveiled in the Maponya Mall in Soweto. The statue is sculpted after the famous image shot by Sam Nzima of Mbuyisa Makhubo carrying the dead body of the boy. The sculpture was sponsored by the Thanda Foundation, founded by the Swedish entrepreneur Dan Olofsson and South-African entrepreneur Matthews Phosa. According to the official website of the City of Johannesburg, the Memorial Acre and Artwork were unveiled in 2006. According to a blog post on sowetouprisings.com, the Memorial Acre was still under development on July 24, 2006. According to Archibald Dlamini, City Parks only cleans up the park once a year just before the June 16 celebrations. Everybody is waiting for the Mashinini brothers to finish their job. The last time he talked with them was in 2007 . According to a sign on the school grounds of the Morris Isaacson High School, the June 16 Trail will be finished in 2008 . According to a blog post on sowetouprisings.com, the Memorial Acre contains another monument erected in Tsietsi’s honor. The monument was created as part of the Sunday Times Heritage Public Art program. Its physical form resembles a giant book which symbolizes the crisis in education experienced in 1976. On the face of the book is the map of the route taken by the students from Morris Isaacson High School in Central Western Jabavu to Phefeni Junior Secondary in Orlando West (currently the site of the Hector Pieterson Museum), while the back cover of the ‘book’ is inscribed with a tribute to Tsietsi Mashinini. The monument was revealed on June 16, 2008 . According to Marcus Neustetter, the billboards on the Memorial Acre were part of a school project realized in 2008. Following several workshops, the students from different high schools along the June 16 Trail were invited to work with artists on the billboards, while the neighborhood community was invited to watch the process during the festivities on June 15 and 16, 2008 . The billboards were supposed to be removed because of construction works on the Memorial Acre, which never ended up happening. According to Brian Mokhele, the former toilet facilities were converted into a house for the park officer. This park officer has been working for city parks for more than 12-15 years, but does nothing here, because the park, including the new toilet buildings, is not finished. The government is now moving around looking for people to take this job because they stopped it. They confronted everybody who was going in and chased them away. According to John, in 2009 , some girls, around 16 or 17 years old, were raped by four men who had been drinking in a local shebeen. When the bar quit they said that they would go home by car, but instead raped the girls on the Memorial Acre nearby. This happened in the unfinished toilets, because the doors couldn’t be closed. According to Brian Mokhele, there used to be some fences around the park because of the construction work that was eventually stopped, but these were also stolen. According to Archibald Dlamini, people from the neighborhood started about two and a half years ago, and the last piece was stolen near the end of 2009 . Sometimes he would catch someone with a roll of fence, and then use it for his own cottage. According to the official website of the City of Johannesburg, a statue of Tsietsi Mashinini by Johannes Pokhela was revealed on June 16, 2010 , “Youth Day.” According to Shirley Makutoane, deputy principal of Isaac Morrison High School, the statue of Tsietsi Mashinini, funded by the June 16 Foundation, has temporarily been placed within the school perimeter. The statue will be moved to the Memorial Acre when it will be finished, in 2011 . According to Brian Mokhele, beside the June 16 Foundation, there is also a June 16 Memorial Acre Foundation. Both foundations are quarreling about the money involved in the Memorial Acre project. Nobody knows who’s involved in them. According to Marcus Neustetter, the June 16 Foundation consists of people that were part of 1976 protest movement, local government officials, representatives of the Hector Pieterson Museum, and the council. According to students from the Isaac Morrison High School, the statue of Tsietsi Mashinini is on the school ground because on the Memorial Acre it would be vandalized by youths from White City, an adjacent neighborhood. Accorcing to Brian Mokhele, the statue of Tsietsi should eventually be mounted on the Memorial Acre. It is wrong that the statue is in the school at the moment, because it is not a public school. He wants the statues to depict the massiveness of the force that was coming into Soweto after the protests. According to Brian Mokhele, City Parks, City of Jo’burg, City Lights, and SAPS are making some sort of plan to take the plan back. They want to remove the trees from the Memorial Acre, and redesign the Memorial Acre into a relaxing park, without political content. They want to depoliticize the square. In doing so,they will have their own employment and not use local workforces. According to Brian Mokhele, the community wants to remove the monuments, amphitheater, and sculptures from the Memorial Acre because they do not resemble anything. The sculptures should be depicting the truth of what happened, because the Memorial Acre is a political heritage site. He wants to involve the people that actually participated in the struggle to make the monument so that everyone can enjoy it and get a better understanding of the struggle heritage. Therefore, he proposes collective ideology in which everyone has a say. This would prevent future vandalization of the monument. According to Pat Motsiri, the sculptures must depict the event around June 16, 1976. Like the story of Dr Edelstein, who was pierced by pickaxes, forced into a garbage bin and burned alive. According to Jonas Staal, the Memorial Acre should be destroyed, its elements stacked on pallets, thus forming the Monument for the Distribution of Wealth . According to Mafaisa, his men can do the work quickly. He has about twenty men working under him. (shrink)

Within the context of the insurable interest in cargo insurance contracts, in this publication the writer analyses the theoretical aspects of the insurable interest and the relevant laws. Dealing with the problems of determining the insurable interest in cargo insurance contracts the writer has examined the possible options of insurance of the cargo in transit, and while analysing the law governing transport and the sale of goods he examines a person‘s insurable interest in the cargo insured and legal remedies to (...) protect such an interest by concluding a cargo insurance contract. The writer believes that the legal regulation of the insurable interest in Lithuania, interpreting the insurable interest as a loss sustained by a policyholder, the insured or the beneficiary upon an event insured against, fails to guarantee the protection of proprietary and economic interests of persons engaged in the circulation of commodities. Laws governing cargo insurance contracts in Lithuania do not provide a flexible protection of interests of the participants in trade operations and impedes the development of trade and transit, therefore the legal regulation of cargo insurance, especially of the insurable interest should be improved. (shrink)

This article is an attempt to take a philosophical approach to the powerful text of the parable of the Good Samaritan in light of the opportunities of the 21st century. The text starts with presenting variousways in which modern Christians can answer the question “who is my neighbour?” and comparing them to the typical response assumed by the effective altruism movement. On the basis of one of the interpretations, a framework is offered for determining whether the beneficiaries of help (...) in the cause areas of effective altruism can be categorized as neighbours. For this inquiry, the so-called "less demanding"interpretation is chosen since prima facie it does not seem to provide a justification for the thesis that all people fall under the category of neighbour. This article claims that due to the development of technology and research as well as due to the global increase in wealth, the less demanding interpretation of the parable of the Good Samaritan conceives of people distant in space as neighbours but not of animals and not of the unidentified people distant in time. It is argued that Christians have moral reasons and ways to support treating animals as neighbours, as well as to support cooperation for the sake of protecting future humanity, at least from the threats that are of human origin. (shrink)

The focus of this study is to explore the impact of transformation from living as a community and perceiving cooperation as a responsibility to meet each other’s needs to individualized society of the modern life due to the capitalist market system on religious obligations with economic implications through emerging institution in the modern period. This study will first analyze how the proxy-embeddedness has led to a transformation in the society from the perspective of Islamic economics under four categories: (1) the (...) weakening of Muslims’ relations with their relatives and neighbours; (2) Equalization of worship for different purposes on a common denominator; (3) Lack of social awareness due to deprivation of the experience of performing worship personally; and (4) the prioritization of those capable of being productive over unproductive people in terms of being beneficiaries of zakat or other types of benefits. Worships such as zakāt and sacrifice are among the acts of worshipping that enable wealthy Muslims to help those in need financially. Although the transfer of material resources to the needy people through modern institutions ensures the fulfilment of worship, through which principles and objectives this transfer is carried out are also important. Significant transformations are observed in the way these worships are performed compared to the pre-modern period, as institutions that carry out zakāt and sacrificial meat collection and distribution activities in line with capitalist principles such as low transaction costs and efficiency. First, it is expected from a Muslim to be aware of the social environment he/she is in, be aware of the needy, and maintain social relations within this awareness. All kinds of charity and financial aid at the level of individual relations, especially zakāt and sacrifice, ensure the continuation of this awareness. If Muslims perform these worships and charity activities through institutions, the awareness of one’s environment will weaken. A second transformation is to make these worships indistinguishable from each other by equating them to the common denominator of paying money. This situation leads to the equalization of worship at the material level and causes the differences to be invisible for Muslims who perform the worship. A third transformation is that the realization of worship by institutions through the proxy system causes Muslims to be deprived of the experience of performing worship individually. While these prayers are performed through institutions in an efficient and low-cost way, the only thing expected from Muslims is to make the necessary payment through the bank. In this case, the spiritual contributions expected to be realized during the fulfilment of the worship decrease. Finally, we see that some institutions utilize capitalist principles and goals to decide who should receive financial aid. For this reason, people who can become a productive factor due to the help they receive are prioritized over others. There is a rational choice behind this decision mechanism: It is aimed to reduce the number of needy people in society by transforming zakat recipients into zakāt payers. On the other hand, Islamic sources do not consider such a priority among those who deserve to receive zakāt. Moreover, this situation will lead to the permanent postponement of people who are not included as a productive factor in the capitalist system but in need. In the second part of the study, an analysis of the agency (vekalet) system, which allows individuals to transfer some of their responsibilities to private institutions to spend time more efficiently, is conducted through the example of nursing houses. Another example of the fulfilment of zakat and sacrifice through the proxies given to institutions is that Muslims fulfil their responsibilities towards their relatives through institutions such as nursing houses. The reason for such a need arises from the fact that people, who take place as human capital in the capitalist system, are required to spend their time to improve themselves, get new education and gain more experience, instead of spending their time taking care of their relatives so that the production process can continue to grow. Although this type of service contract is formally valid in terms of Islamic law when evaluated in terms of the bond that Islamic morality envisages to be established between Muslims and their relatives and the protection of this bond, institutions such as nursing houses can lead to the commodification of family ties due to the transfer of responsibilities to relatives in return for a service fee. (shrink)

Latin American social protection systems show that the fundamental ambivalence of modernity is captured by the twin notion of liberty and discipline in the context of a plurality of modes of socio-political organization. According to this understanding, this article analyses the potential of the so-called Conditional Cash Transfer programmes, which are widespread in the region, to strength or reduce personal autonomy. These programmes are promoted by claiming their virtues to reduce poverty and impose good behaviour on poor people in (...) order to improve the ‘human capital’ of future generations. However, numerous elements challenge these alleged virtues: arbitrary selection of beneficiaries, interference in people’s lives, stigmatization of recipients, inability to achieve universal coverage and act in a preventive manner with regards to urgent needs, the creation of poverty traps and informal working, etc. Taking these elements into account, this article explains how these programmes do not improve people’s autonomy and political independence. (shrink)

Directive 96/9/EC of the European Parliament and of the Council on the legal protection of databases of 11 March 1996, which was intended to protect the interests of the makers of databases, determined that databases could be protected by double rights: copyright and sui generis right. The article first of all analyses what persons are entitled to be acknowledged as holders of copyright and sui generis right in respect of a newly created database. As the issue of the owner (...) of copyright is not regulated by the 1996 Directive, this is determined by the application of national provisions. Pursuant to the Law on Copyright and Related Rights of the Republic of Lithuania, the owner of copyright may mean, depending on the situation, a natural person – the author of a database or a group of authors, the holder of the right to a collective work, or an employer. The analysis presented in the articleindicates that predominantly it is the author (authors) of a database who is held to be the owner of the copyright. Courts tend to interpret the rule concerning the transfer of copyright to the employer in a restrictive way; besides, in accordance with the specifics of the Lithuanian legal regulation, economic rights are transferred to the employer only for the period of 5 years. The category of collective work is of a subsidiary character and may be applied only in exclusive cases. Therefore, when a database is created upon the commission of another person, including the employer, the customer is expected to form a written agreement where the transfer of economic rights to the customer is clearly defined. (shrink)

A just society must provide a range of goods: police protection, education, medical care, legal representation, to name only a few. But how should a just society organize production of these goods? To ask this question is to broach the topic of productive justice. We need a theory of this topic in order to explain the content of the ideal of social justice. A certain theory of productive justice is now widely taken for granted. It has the following commitments. (...) Every able beneficiary of just institutions owes some productive contribution. There is no free-loading on just institutions. Therefore, income support from the state should normally be conditioned on working. Those who would be idle must find a way to support themselves. Beyond this general requirement, however, each citizen gets to decide his own contribution, because each citizen has a right to choose his occupation. The state may not assign occupations or specify anyone’s place of work. Nor may it direct anyone to work longer than he prefers, provided he is not loafing on public support. Instead, labor must be allocated through a market, where everyone is free to decline any given job offer. The labor market thus fixes the possibilities of just production: the socioeconomic goals that a society may justly accomplish are limited to those that can be pursued in or alongside a labor market. This theory is now widely accepted. I argue that its central elements are importantly mistaken. Income support from the state should not normally be conditioned on working. To think this is to misunderstand the nature of each citizen’s contributory duty. Nor is it the case that a just state may never assign urgent jobs or otherwise restrict occupational decisions. To think this is to misunderstand several of the basic rights and liberties of citizenship. In my dissertation, I defend a different theory, with three elements. The first is a theory of every citizen’s right to free choice of occupation. The second is a theory of the scope and basis of the economic duties of modern citizenship. The third is a theory of the permissibility conditions of restricting labor market liberties. Together these three elements comprise a new theory of productive justice. (shrink)

Employing the case of theredwood Headwaters forest in rural NorthernCalifornia, this paper investigates the extentto which an anti-corporate progressive alliancebetween labor and the environmental movement ispossible in contemporary global capitalism.Progressive alliances between labor and theenvironmental movement have been historicallydifficult. This has been particularly the casein the timber industry, where companies havebeen able to mobilize workers againstenvironmentalists' designs. The caseillustrates the events that led to the purchaseof the Headwaters Forest by the state ofCalifornia and the Federal Government fromPacific Lumber. This is (...) a subsidiary of Maxxam,a corporation with interests in a variety ofeconomic sectors. The objective was to haltMaxxam's rampant deforestation of old growthredwood. Though conflict between labor andenvironmentalists existed, the casedemonstrates that the labor and theenvironmental movement were united againstMaxxam. They, however, were not completelysuccessful in their struggle as Maxxam greatlybenefited from the state-sponsored landpurchase. Maxxam gained economically, was ableto shape the ideological framework throughwhich the purchasing agreement was achieved,and extended its hegemony over the state. Thisoutcome cast doubts on the possibility thatcurrent forms of environmental protection couldtranscend commodified and reductionistpostures. Simultaneously, the existence of acommon anti-corporate consciousness among largesegments of labor and the environmentalmovement makes the environment a contestedterrain and allows for some optimism about thefuture of the struggle for ecologically soundsocial arrangements. (shrink)

In this paper, I explore the question of how the costs of undertaking an important type of climate change mitigation should be shared amongst states seeking an environmentally effective and equitable response to global climate change. While much of the normative literature on climate mitigation has focused on burden sharing within the context of reductions in emissions of greenhouse gas, I explore the question of how the costs of protecting tropical forests in order to harness their climate mitigation potential should (...) be distributed amongst developing and developed states. In response to this question, I outline and defend a ‘beneficiary pays’ account of forestry mitigation burden sharing that requires affluent states to finance measures supporting avoided deforestation while less affluent states, within whose territory these forests tend to be located, implement these measures. The normative basis for this account, I argue, is a principle of ‘unjust enrichment’ according to which developed states must bear much of the cost of avoided deforestation for its climate mitigation potential because of the huge economic benefits their citizens have accumulated from productive activities that have contributed to climate change. (shrink)

This report, the first of the project, presents original research evidence based on 1,516 face-to-face interviews with young Syrian international protection beneficiaries and applicants, 18-32 years old, which were conducted in the UK, Lebanon and Greece, between April and October 2017. Key findings from this comparative analysis inform our policy recommendations concerning the settlement, training and skills provision for young forced migrants in the UK. Key Findings: - Young Syrian refugees in the UK have the highest levels of (...) skills and training, and are most eager to remain and contribute to the host country, compared with those in Greece and Lebanon. - Young Syrian refugees are faced with higher levels of unemployment in the UK than citizens, while many of them who are in employment are doing jobs for which they are over-qualified. - Refugees in the UK receive better support and have an overall more positive experience and evaluation of actors compared to those in Greece and Lebanon, but access to key provisions designed to enhance labour market participation remains patchy. - Syrian refugees who have been resettled to the UK report overall more positive experiences than those coming through the asylum route, despite higher levels of employment among the latter and the government supposedly taking the more vulnerable among the former. - Young Syrians in Scotland are better supported, and more positive about their engagement with people and institutions, although they are currently more distanced from re-integration into the labour market compared to those settled in England. (shrink)

BackgroundPromoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been intense debate within academic (...) bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide.MethodsWe reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services.ResultsAccess to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries.ConclusionAlthough in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context. (shrink)

Emotions are typically dual-faced: they involve both an evaluative and a practical aspect. What is more, an emotion's evaluative and practical aspects tend to exhibit a kind of fit. For example, Sakshi's fear of the bear involves apprehending the bear as a threat to something she cares about, i.e., her wellbeing. And it motivates her to act on behalf of this care: it motivates her to act in ways that protect her wellbeing. Both dimensions of Sakshi's fear are about her (...) wellbeing. Typically, characterizations of gratitude speak to both its evaluative and practical dimensions. Gratitude is described as a way of apprehending the significance of one's benefactor's kindness, and it is said to involve a disposition to thank one's benefactor and to return the kindness. In this article I show that this characterization is incomplete insofar as it leaves us without the resources needed to discern the link between gratitude's two dimensions. I argue that discerning the fit requires an account of gratitude's focus and goal. I urge that the beneficiary's communal relationship with her benefactor is gratitude's focus and that promoting this relationship is gratitude's goal. Both dimensions of a beneficiary's gratitude are about her communal relationship with her benefactor. (shrink)

Organizations such as multinational corporations are the most important form of business globally. The defining role on the world economy could be seen at the onset of the financial crisis of 2008, but also in the recent events related to the Covid-19 pandemic, when corporations transformed their production lines to respond to the need for protective equipment for the frontline workers in the health system, but also for the broader population. Through Foreign Direct Investment, multinational corporations make a positive impact (...) on economies around the world. In addition to contributing to the local development of areas where they setup subsidiaries, multinational corporations are a form of integration of a local economy into the global economy. In the Romanian economy, multinational corporations play a decisive role, representing the companies with the highest turnover, but also the most desired employers for those looking for a job. (shrink)

Ethical dilemmas affect several essential elements of humanitarian aid, such as the adequate selection of crises to which to provide aid and a selection of beneficiaries based on needs and not political or geostrategic criteria. Other challenges encompass maintaining neutrality against aggressors, deciding whether to collaborate with governments that violate human rights, and managing the allocation and prioritization of limited resources. Additionally, issues arise concerning the safety and protection of aid recipients, the need for cultural and political sensitivity, (...) and recognition of the importance of local knowledge, skills, and capacity. The appropriateness, sustainability, and long-term impact of actions; security risks for aid personnel; and the need for transparency and accountability are also crucial. Furthermore, humanitarian workers face the duty to report and engage in civil activism in response to human rights violations and the erosion of respect for international humanitarian law. Lastly, the rights of affected groups and local communities in the decision-making and implementation of humanitarian aid are vital. The traditional foundations and approaches of humanitarian aid appear insufficient in today’s landscape of disasters and crises, which are increasingly complex and divergent, marked by a diminished capacity and shifting roles of various actors in alleviating suffering. This article reviews the historical evolution of the conceptualization of humanitarian aid and addresses some of its ethical challenges and dilemmas. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and informed (...) consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

My main aims in this paper are to further clarify and defend the Duty View of punishment, outlined in my book The Ends of Harm, by responding to some objections to it, and by exploring some variations on that view. I briefly lay out some steps in the justification of punishment that I defend more completely in Chapter 12 of The Ends of Harm. I offer some further support for these steps. They justify punishment of an offender for general deterrence (...) reasons if the beneficiary of general deterrence is the victim of the crime. They do so firstly on the basis that offenders incur compensatory duties to victims. I then show that duties incurred through serious wrongdoing are not limited to the duty to provide full compensation. Because offenders incur the relevant duties, and the duties are enforceable, harming them to protect their victims does not wrong them. I then consider whether an offender can be harmed in order to protect people other than the victims of her crime. In this section, I respond to an important challenge to the general idea that we can justify punishment on the basis of duties incurred as a result of wrongdoing, a challenge that I had met only in part in The Ends of Harm. It might be argued that the duties that we incur through serious wrongdoing are owed only to victims of crime. In punishing offenders, in contrast, we aim to protect people in a society more generally, and not just crime victims. A plausible theory of punishment must demonstrate that we are justified in pursuing this aim. Hence, it might be argued, the Duty View fails. I will respond by showing that the duties incurred through wrongdoing are not limited to duties owed to victims, and hence this challenge to the Duty View can be met. (shrink)

An important contribution of Christian ethics in the pluralistic world of the twenty-first century is to emphasize inclusivity. Rather than promoting the interests of certain groups at the expense of the most vulnerable, society does well to prioritize ways forward that benefit all. For stem cell research, inclusivity entails benefiting or at least protecting the beneficiaries of treatment, the sources of materials, and the subjects of research. Adult stem cells are already benefiting many ill patients without causing harm, and (...) select adult cells may prove even more beneficial in the future. Other types of stem cells require other bodily materials such as eggs and somatic cells that should be obtained without unduly harming those who provide them. Research subjects, especially the most vulnerable, require protection as well. Should human embryos be included among them? Considerations of location, formation, individuation, and intention are here examined. Ultimately, for safety reasons as well as workability, pluripotency, and compatibility, relatively new types of pluripotent stem cells, especially induced pluripotent stem cells, warrant special priority according to an inclusive ethics. (shrink)

Within a liberal, ‘law of things’ understanding of property, the donative trust is seen as a species of gift. Control over trust property passes from the hands of settlors to beneficiaries, from owners to owners. Trust property, like all other property, is silent and passive, its fate determined by its owners. This article questions this understanding of the trust by showing how beneath the facade of ownership, the trust inverts the relation between owner and owned, person and thing. It (...) analyses the relation that trustees, beneficiaries and settlors have to the trust property and argues that the role of each of these parties can be shown to consist in furthering the interests of the trust property rather than their own. It claims that this protects things from their owners at the same time as it ensures these owners’ ongoing care towards the things they own. This raises questions about the trust’s status within the institution of private property, justified as it is by the human autonomy it is said to enable. (shrink)

As a negative protective right, freedom of science is – within the limits marked by other fundamental liberty rights – widely accepted. This also applies, pars pro toto, to the field of medical research. It is far less clear, however, whether a positive claim to medical research can be justified as well. Research of this kind could be articu- lated by potential beneficiaries of its applications as a welfare right. If one bases pub- lic obligations on the concept of (...) fostering individual liberties and, in addition, bears in mind the existential importance of effective therapies especially for severe dis- eases, the presumption of such a claim may not be unfounded. Yet, if such a claim can be justified its proper addressee still needs to be identified. Against the back- ground of frequent criticism directed against pharmaceutical companies, asserting that they disregard certain patient groups or types of diseases in their research activ- ities in a morally irresponsible way, the attempt to clarify this issue gains immediate practical relevance. (shrink)

This chapter engages with Roger Cotterrell's characterisation of the trust as 'ideological.' However, rather than agreeing with Cotterrell that the trust disguises the true ownership of the beneficiary, it shows that the family trust subverts this idea of a one-sided ownership relation altogether by effecting a reversal in the hierarchical distinction between persons and things. Under the appearance of wealth, beneficial owners are serving the very things they own by ensuring their protection and continuous reproduction.

In this essay I would like to outline the Christian perspective on solving economic issues based on documents of the Catholic Church. The term ‘economic personalism’ appeared in literature several years ago and has been used as a proposal of a new economic model which is supposed to be a synthesis of achievements of economic sciences and Christian moral theology. Pope John Paul II is believed to be one of its precursors or even founding-fathers. We shall sum up these significant (...) elements of papal personalism under the following heads: (1) A man is a person, namely an independent existence in material and personal, spiritual and material sense, rational and free. All these characteristics of a human being constitute a basis for his dignity and greatness; (2) A man is a free being. This means that he has to make choices between various values. Human freedom is closely related to the truth. The final objective of human freedom is love; (3) We can protect ourselves against alienation by acting and being together with others. We will avoid the danger of alienation when we make ourselves a gift for the other person and especially for God. Economic personalism develops John Paul II’s personalistic view in a creative way. Its program can be summarized by the following theses: (1) a man is the centre of economy; (2) a human being is the most important economic good; (3) work is part of the man’s calling; (4) reproducibility of goods is subordinated to the man’s integral development; (5) the right to participate constitutes inalienable human right; (6) the principle of subsidiary is an „intellectual” frame for social and economic order; (7) the market should not be absolutized; (8) solidarity with the poor and social justice constitute a basis of each economy. (shrink)

Fiduciary law is in a state of flux. We know that the core obligation of a fiduciary is an obligation of loyalty, but we are less sure what ‘fiduciary loyalty’ encompasses. We know a fiduciary has duties not to profit or put himself in positions of conflict, but how these duties interact with other non-fiduciary duties (whether tortious or contractual or otherwise) is more difficult to discern. Against this background, Conaglen has made a recent contribution to our understanding of the (...) fiduciary doctrine. He suggests that fiduciary loyalty offers a subsidiary and prophylactic form of protection for non-fiduciary duties. This article considers his analysis, and argues that it is not supported by case law and creates a number of inexplicable implications for the fiduciary doctrine. In view of these difficulties, Conaglen's analysis should be rejected. (shrink)

BackgroundCommunity Advisory Boards (CAB) have become essential organs of involving communities in HIV clinical trials especially in developing countries. However, limited empirical evidence exists on the role of CABs in low and middle-income countries including Tanzania. This study aims at exploring the role of CABs in community-based HIV clinical trials conducted in Tanzania.MethodologyWe adopted a phenomenological approach to purposefully select HIV clinical trial stakeholders. These included CAB members, researchers and Institutional Review Board (IRB) members in Tanzania. We conducted In-depth Interviews (...) (IDIs) with ten participants and three Focus Group Discussions (FGDs) with eighteen participants. The data were thematically analyzed with the aid of MAXQDA software version 20.2.1.ResultsThe findings indicate that at every stage of implementation of a community-based HIV clinical trial, a functioning CAB is important for its success. This importance is based on contextualization of the informed consent process and protocol, managing rumours in the community, weighing trial risks and benefits, sensitizing the community, assisting participant recruitment, tracing and retention. However, being perceived as financial beneficiaries than community representatives emerged as a challenge to CAB members. ConclusionThe study empirically indicates the need for functioning CABs in every stage of implementation of community-based HIV clinical trials. The roles of which are interwoven in serving research goals and protecting the interests of the community and that of trial participants. (shrink)

Among American adults 20 years and older, 59 percent take at least one prescription drug on a regular basis. Unlike most branded drugs, which are generally drugs that have a trade name and are protected by a patent, off‐patent generic drugs make up approximately 90 percent of prescriptions annually filled in the United States; yet in 2017, generic drugs made up only 23 percent of total drug costs in the U.S. The U.S. Food and Drug Administration has taken the lead (...) in encouraging increased competition in the nation's prescription drug marketplace, most recently with its release of the agency's Drug Competition Action Plan, but also with its regulatory guidance and enforcement efforts to eliminate “gaming” of the regulatory process by both branded and generic pharmaceutical manufacturers. Such “gaming” activities include “pay‐for‐delay” agreements involving financial compensation between branded and generic pharmaceutical manufacturers to forestall the emergence into the market of generic pharmaceuticals to compete against a formerly patent‐protected branded drug. A combination of new enabling legislation, federal judicial guidance, and agency regulatory activities show promise in encouraging increased competition in the prescription drug marketplace, with the American consumer the ultimate beneficiary of lower health care costs and improved overall personal health. (shrink)

This dissertation explores the ethics of human subjects research with particular attention to how clinical research on vaccines differs from research on therapies. The major differences are rooted in the fact that the benefits of vaccines and vaccine research accrue to the community to which vaccines belong by inducing herd immunity and thereby protecting both vaccinated and unvaccinated individuals. Therapeutics have no corresponding benefit to the community, the primary beneficiary is the individual. The ethical justification for conducting vaccine research in (...) a given community therefore should include an evaluation of the risks and benefits to the community as well as to involved individuals. Respect for individuals extends to respect for communities and for individuals as members of communities. A three way partnership between investigators, the community, and the community members is suggested as an ethical foundation for vaccine research. ;This model is then applied to the particular and complex case of testing a preventive HIV vaccine. HIV is an unique virus which continues to cause extraordinary devastation worldwide. The characteristics of HIV, its transmission and epidemiology, along with unprecedented scientific possibilities present a formidable challenge to the development and testing of an HIV vaccine. Using the community model, specific suggestions are made for the ethical conduct of clinical efficacy trials of HIV preventive vaccines. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and informed (...) consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

This paper examines the responsibilities of states to assist and to receive stateless people who are forced to leave their state territory due to rising seas and other unavoidable climate change impacts and the rights of ‘climate refugees’ to choose their host state. The paper employs a praxeological method of non-ideal theorising, which entails identifying and negotiating the unavoidable tensions and trade-offs associated with different framings of state responsibility in order to find a path forward that maximises the protection (...) of climate refugees within the constraints imposed by political feasibility. It argues that the responsibility of states to support climate refugees through financial and technical assistance should be treated separately from their responsibility to receive them. The former is a differentiated responsibility grounded in the ability to pay principle, or relative capability, while the latter is a common responsibility grounded in the fact that all states have causally contributed to their plight, albeit in varying degrees which cannot be, and need not be, precisely determined. A common state ‘responsibility to receive’ is linked with a right on the part of climate refugees to choose their host to suit their circumstances, which would provide a form of partial compensation for the injustice and trauma of their loss and damage. This right is expected to become more viable, and the political willingness of states to receive them more likely, the more that climate refugees are assured of adequate support for resettlement according to states’ differentiated responsibilities to assist. (shrink)

The paper shows relationships between the characteristics of residents and the places, where they live. A combination of three criteria of place attractiveness was chosen to classify places, and profiles of their beneficiaries on the theoretical level. The results of the empirical study partially con­firm the developed theoretical typologies. Two methods to segment place market are equal only if expectations of population are constant. Study results allow place marketers to identify emerging shifts in the structure of beneficiaries of (...) specific places and predict their further evolution. (shrink)

Associative duties are agent-centered duties to give defeasible moral priority to our special ties. Our strongest associative duties are to close friends and family. According to reductionists, our associative duties are just special duties—i.e., duties arising from what I have done to others, or what others have done to me. These include duties to abide by promises and contracts, compensate our benefactors in ways expressing gratitude, and aid those whom we have made especially vulnerable to our conduct. I argue, though, (...) that reductionism faces a problem: special duties are not strong enough to account for the strength of our associative duties. At the bar of associative duties, we are required to do what no special duty can warrant. I then present an alternative reductionist analysis of associative duties—the ‘Identity-Enactment Account’—which not only accounts for the peculiar strength of our associative duties, but also characterizes them in an intuitively compelling way. On this account, our strongest associative duties are special duties to protect or promote the welfare of the duty’s beneficiary by adopting and enacting a practical identity in which the duty’s beneficiary features prominently. There are persons who can legitimately demand a prominent place in our mental lives, for the protection and intimacy it affords. They can, in effect, legitimately demand to be among our nearest and dearest. The correlative of such a demand is, on our part, an associative duty we have toward them. (shrink)

In response to criticisms made by Keith Dowding (hereafter KD) of `Capitalists Rule OK', this article argues (1) that there is a genuine structural conflict of interest between consumers and producers, voters and politicians, and capitalists and governments, and (2) that only by ad hoc and arbitrary limitations on the scope of the concept of power can it be denied that consumers collectively have power over producers and capitalists (collectively) have power over government. KD accepts that voters (collectively) have power (...) over governments. Ironically, however, this is by far the most tenuous and generally problematic of the three putative power relations. Furthermore, there is no plausible way of conceding that voters (collectively) have power over politicians without also having to accept the validity of a power relation in the other two cases. The implication is that the thesis that is supposed to justify the standard North American or western European politico-economic system, according to which consumers and voters have power but capitalists do not, is nothing more than ideology, in Marx's sense of a fantastical picture of the world designed by the beneficiaries of the status quo to protect their privileged positions against legitimate demands for revolutionary change. The article concludes by taking up KD's primary objection to `Capitalists Rule', which is its rejection of the proposal to equate power with resources. According to KD's official definition, `resources' are the means of raising and lowering others' utilities. I pointed out in `Capitalists Rule' that KD himself acknowledges the inadequacy of this definition, since he almost immediately goes on to say that people do not necessarily have the power that is attributed to them. Obviously, `power' in this new sense must be something different, and is, in fact, the ability to get people to do what you want them to do or to refrain from doing things you do not want them to do. This is precisely my own proposed definition in `Capitalists Rule'. The only remaining disagreement arises from KD's wish to turn everything that lies between power in his first sense and power in his second (and my) sense into a further `resource'. I argue that this is obfuscatory and, in any case, infeasible. Key Words: power • democracy • capitalism. (shrink)

Administraation of antiretroviral therapy to women during pregnancy, labor and delivery, and to infants postnatally can dramatidy reduce mother-to- child HIV transmission. However, pregnant women need to know that they are HIV-infected to take advantage of antiretroviral therapy, and many women do not know their HIV status. One-half of HIV-infected infants in the United States were bornto women who had not been tested for HIV or for whom the time of testing was not known. Although fewer than 400infants are infected (...) perinatally in the United States each year, that number could be reduced even further through policies aimed at HIV testing during pregnancy.The reasons toadopt such a policy are strong: the pathophysiology of perinatal transmission is clear, prophylaxis is effective and safe, and the intended beneficiaries of the intervention - babies - cannot protect themselves. (shrink)

Marxism accepted the notion of social justice, but realized it through liquidation of private property and violence of the totalitarian state. Liberalism and neoliberalism, in the name of maximal economic liberalism, reject the idea of social justice and postulate a minimal state. Republicanism and communitarianism accept ideas of common good and social justice. The social teaching of the Church proposes a subsidiary state which is not a protective one. Contemporary popes – Pius XI (Quadragesimo anno), John XXIII (Mater et (...) Magistra), Paul VI (Populorum progressio), John Paul II (Sollicitudo rei socialis, Centesimus annus) – postulate participation of the state in social justice. The main of its obligations are: protection and financial aid for key sectors of economic life (including agriculture), profamily policy, fighting against unemployment and providing fair salary, limited economic intervention (while respecting the rules of the free market economy at the same time), medical and social care. (shrink)

Defenders of current restrictions on EU immigrants’ access to welfare rights in host member states often invoke a principle of reciprocity among member states to justify these policies. The argument is that membership of a system of social cooperation triggers duties of reciprocity characteristic of welfare rights. Newly arriving EU immigrants who look for work do not meet the relevant criteria of membership, the argument goes, because they have not yet contributed enough to qualify as members on the grounds of (...) reciprocity. Therefore, current restrictions on their access to welfare rights are justified. In this article, I challenge this argument by showing how restrictions on EU immigrants’ access to welfare rights are inconsistent with duties of international reciprocity. There are different variations of this challenge, but my focus here will be on one that uses a veil of ignorance device to support this claim. What matters from a perspective concerned with international reciprocity, I will argue, is what kind of welfare policy EU member states would choose were they not to know whether those receiving EU migrants were net contributors or net beneficiaries to the relevant scheme of international cooperation made possible by the four freedoms, and freedom of movement in particular. I argue that framing the requirement of reciprocity in this way provides a more comprehensive understanding of what should count as an ‘unreasonable burden’ on the welfare systems of host member states. The paper also examines alternative accounts of ‘unreasonable burdens’. It shows when and how the current institutional structure of the EU could take steps to deal with such burdens by preventing member states from gaming a comprehensive system of welfare rights protections across member states and by recognising the achievements of those member states that best serve them. (shrink)

This paper challenges one line of argument which has been advanced to justify imposing risks of collateral harm on prospective beneficiaries of armed humanitarian interventions. This argument - the ‘Beneficiary Principle’ - holds that non-liable individuals’ immunity to being harmed as a side effect of just armed humanitarian interventions may be diminished by their prospects of benefiting from the intervention. Against this, I defend the view that beneficiary status does not morally distinguish beneficiaries from other non-liable individuals in (...) such a way as to permit exposing them to greater risks of being harmed. The argument proceeds in four steps. I first show that the BP can neither be grounded in liability-based nor in lesser-evil justifications for harming. I then argue that a standalone justification for unintended harming based on beneficiary status would face at least two critical challenges. The first concerns the BP’s applicability to collectives; the second questions the normative weight we can plausibly ascribe to beneficiary status when beneficiaries are such by virtue of being victims of wrongful threats of harm. I argue that standing to benefit is morally irrelevant when the benefit consists in the mitigation or prevention of wrongful harms, and consequently suggest that the BP may only serve as a distributive principle in allocating risks of harm if it is disambiguated in a number of critical aspects and applied in a more narrowlydefined set of circumstances. (shrink)

While mitigation and adaptation will help to protect us from climate change, there are harms that are beyond our ability to adapt. Some of these harms, which may have been instigated from historical emissions, plausibly give rise to duties of compensation. This chapter discusses several principles that have been discussed about how to divide climate duties – the polluter pays principle, the beneficiary pays principle, the ability to pay principle, and a new one, the polluter pays, then receives principle. The (...) chapter introduces several challenges to these principles from the literature, before discussing which policies and institutions might be relevant to compensation, whether internationally (e.g., the Green Climate Fund) or intergenerationally (e.g., Broome and Foley’s World Climate Bank). It also describes some recent successful climate cases that require both the Dutch government and a private firm to act in accordance with climate targets to avoid potential rights violations. Finally, it discusses one of the most important international concepts with respect to compensation: the Loss & Damage pillar of climate policy. (shrink)

While mitigation and adaptation will help to protect us from climate change, there are harms that are beyond our ability to adapt. Some of these harms, which may have been instigated from historical emissions, plausibly give rise to duties of compensation. This chapter discusses several principles that have been discussed about how to divide climate duties—the polluter pays principle, the beneficiary pays principle, the ability to pay principle, and a new one, the polluter pays, then receives principle. The chapter introduces (...) several challenges to these principles from the literature, before discussing which policies and institutions might be relevant to compensation, whether internationally (e.g. the Green Climate Fund) or intergenerationally (e.g. Broome and Foley’s World Climate Bank). It also describes some recent successful climate cases which require both the Dutch government and a private firm to act in accordance with climate targets to avoid potential rights-violations. Finally, it discusses one of the most important international concepts with respect to compensation: the Loss & Damage pillar of climate policy. (shrink)

The view that innocent beneficiaries of injustice bear special duties to victims of injustice has recently come under attack. Luck egalitarian theorists have argued that thought experiments focusing on the way innocent beneficiaries should distribute the benefits they’ve received provide evidence against this view. The apparent special duties of innocent beneficiaries, they hold, are wholly reducible to general duties to compensate people for bad brute luck. In this paper we provide empirical evidence in defense of the view (...) that innocent beneficiaries have genuine special duties to victims of injustice. Through a series of four experiments, we show that judgments about the kinds of cases that luck egalitarian critics have provided do not undermine but rather support this view. We also explore a number of other questions that theorists working in this area have yet to discuss and provide suggestions for further research on the moral significance of benefiting from injustice. (shrink)