Despite the widespread presence of public arts funding in liberal societies, some liberals find it unjustified. According to the Neutrality Objection, arts funding preferences some ways of life. One way to motivate this challenge is to say that a public goods-styled justification, although it could relieve arts funding of these worries of partiality, cannot be argued for coherently or is, in the end, too susceptible to impressions of partiality. I argue that diversity-based arts funding can overcome this challenge, because it (...) invests in non-excludable infrastructure that fosters cultural literacy. We all have some interest as citizens in living in a society which fosters cultural literacy, seeing as this helps others to understand us, supports us to understand ourselves, and helps alleviate confusion and alienation we feel toward social difference. While some of these benefits can be enjoyed by those who make and consume art, they are also gained by those who don’t, because arts funding affects the makeup of public spaces and the communicative practices we all use to make sense of the world. (shrink)

Social innovations are usually understood as new ideas, initiatives, or solutions that make it possible to meet the challenges of societies in fields such as social security, education, employment, culture, health, environment, housing, and economic development. On the one hand, many citizen science activities serve to achieve scientific as well as social and educational goals. Thus, these actions are opening an arena for introducing social innovations. On the other hand, some social innovations are further developed, adapted, or altered after the (...) involvement of scientist-supervised citizens in research and with the use of the citizen science tools and methods such as action research, crowdsourcing, and community-based participatory research. Such approaches are increasingly recognized as crucial for gathering data, addressing community needs, and creating engagement and cooperation between citizens and professional scientists. However, there are also various barriers to both citizen science and social innovation. For example, management, quality and protection of data, funding difficulties, non-recognition of citizens’ contributions, and limited inclusion of innovative research approaches in public policies. In this volume, we open theoretical as well as empirically-based discussion, including examples, practices, and case studies of at least three types of relations between citizen science and social innovation: domination of the citizen science features over social innovation aspects; domination of the social innovation features over the citizen science aspects; and the ways to achieve balance and integration between the social innovation and citizen science features. Each of these relationships highlights factors that influence the development of the main scales of sustainability of innovations in the practice. These innovations are contributing to a new paradigm of learning and sharing knowledge as well as interactions and socio-psychological development of participants. Also, there are factors that influence the development of platforms, ecosystems, and sustainability of innovations such as broad use of the information and communications technologies including robotics and automation; emerging healthcare and health promotion models; advancements in the development and governance of smart, green, inclusive and age-friendly cities and communities; new online learning centers; agri-food, cohousing or mobility platforms; and engagement of citizens into co-creation or co-production of services delivered by public, private, non-governmental organizations as well as non-formal entities. (shrink)

On paper, class actions run like clockwork. But practice suggests the need for tune-ups: sometimes judges still approve settlements rife with red flags, and professional objectors may be more concerned with shaking down class counsel than with improving class member’s outcomes. The lack of data on the number of opt-outs, objectors, and claims rates fuels debates on both sides, for little is known about how well or poorly class members actually fare. This reveals a ubiquitous problem — information barriers confront (...) judges, objectors, and even reformers. Rule 23’s answer is to empower objectors. At best, objectors are a partial fix. They step in as the adversarial process breaks down in an attempt to resurrect the information-generating function that culture creates. And, as the proposed changes to Rule 23’s handling of objectors reflect, turmoil exists over how to encourage noble objectors that benefit class members while staving off those that namely seek rents from class counsel. The U.S. class-action scheme is not the only one that relies on private actors to perform public functions: citizens privately fund political campaigns, and private lobbyists provide research and information to lawmakers about public bills and policies. Across disciplines, the best responses to those challenges have often been to level up, not down. This Article therefore proposes a leveling up approach to address judges’ information deficit such that they can better perform their monitoring role. By relying on public funds to subsidize data collection efforts and nonprofit objectors’ information-gathering function, we can disrupt private class counsel’s disproportionate influence. (shrink)

In this paper I give some reasons why ‘saving for future generations’ is not as straightforward as it sounds and when we might be skeptical of the permissibility of states saving for future citizens, even though such savings are often seen to be morally praiseworthy. I emerge with an account of when state savings for future citizens through sovereign wealth funds may be morally permissible. I argue that we ought to follow a modified version of Armstrong’s criteria (...) for the moral permissibility of sovereign wealth fund savings. That is, states are entitled to the full proceeds from the sale of a natural resource until their citizens’ basic rights are secured. Once they are, states are entitled only to the improved value of the resource, so long as they have not excluded others from the opportunity also to improve the resource. States may create sovereign wealth funds based on this improved value and, due to justified compatriot partiality, may choose to distribute those funds to current or future members of the state, even if non-citizens may be worse off and/or in greater need. Any residual value of the resource extraction must be redistributed globally. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Liberalism, Art, and FundingDale Francis MurrayLiberalism, Art, and FundingSince Ronald Dworkin published A Matter of Principle, a host of critics have attempted to systematically dismantle his arguments advocating state support for the arts that appear in a chapter entitled, "Can a Liberal State Support Art?"1 The combined critical force of Noël Carroll, Samuel Black, and most recently, Harry Brighouse, has dislodged the main supports of Dworkin's position on this (...) subject.2 However, while I am skeptical that the arguments of liberals who endorse state support for the arts can be fully resurrected, I reckon that a few remarks can be presented to try to deflect at least a fraction of the contentions cast on Dworkin's argument by the critics listed above. In order to refine our understanding of precisely why state support for cultural expression should or should not be permitted, it is imperative that some sort of response to the critics of state support for the arts is offered.In this essay, I focus primarily on Brighouse's objections that Dworkin's arguments supporting arts funding fail primarily because they are not sensitive enough to the ways in which such support violates two demands of justice in a liberal state — state neutrality and publicity. I examine these two objections since they seem to be the most interesting, compelling, and damaging to Dworkin's case if substantiated. If Brighouse is correct, these violations act as heavy bulwarks against state support for arts funding, especially since public distrust of the state's intent (and the state's perceived advocacy of notions of the good with which the public disagrees) is high. I will employ Brighouse's neutrality of intent constraint, because it best represents the alleged specific violations of state neutrality that may undermine Dworkin's case. Additionally, neutrality of intent is the most plausible form of neutrality for advocates of public arts funding to build a case for in the space of a short essay.I also wish to make a distinction, which for the most part, is ignored by Dworkin's critics — that there is a degree to which moral value and aesthetic value are different and that this effects a possible alternative reading of the term "ways of life" as most liberals understand it. As a final note of preface, I will assume that the background conditions of income and wealth are just.3 This proviso will become important when we examine the role of the market in funding arts projects in lieu of the government. Now let us reiterate the two requirements of any just liberal state that are at issue when considering the legitimacy of state support for the arts. [End Page 116]Brighouse sets the pair of constraints on any just liberal state (neutrality and publicity) as the centerpieces of his essay. Neutrality of intent, that he appeals to more specifically, can be understood to mean, as Brighouse himself explains, "[T]hat while it is unobjectionable that state actions will have differential effects on conceptions of the good, the government should not intend to favor some conceptions over others" (NPS, 38, emphasis mine). The publicity constraint can be characterized by saying that in any just, liberal regime, justice must not only be done, but it must also be seen as being done. While this serves as the motto of the publicity constraint, it is significant to acknowledge that it stipulates that the real reasons for governmental action must be comprehensible to, and available for inspection by, reasonable citizens. In addition, it must be readily apparent to citizens that the demands of justice are being met. I will return to this constraint on the state later in this essay.Neutrality is of chief interest, since recent liberal political philosophers have emphasized the primacy of the right over the good (RLD, 245). Presumably, individuals, via their rational autonomy, shall define the good for themselves beyond the dictates of government. Our morality is our own personal affair, just so long as we remain within the confines of the harm principle and do not violate the equal liberty of others.On the surface, it is not apparent that state funding for the... (shrink)

Devices that record from and stimulate the brain are currently available for consumer use. The increasing sophistication and resolution of these devices provide consumers with the opportunity to engage in do-it-yourself brain research and contribute to neuroscience knowledge. The rise of do-it-yourself (DIY) neuroscience may provide an enriched fund of neural data for researchers, but also raises difficult questions about data quality, standards, and the boundaries of scientific practice. We administered an online survey to brain–computer interface (BCI) researchers to gather (...) their perspectives on DIY brain research. While BCI researcher concerns about data quality and reproducibility were high, the possibility of expert validation of data generated by citizen neuroscientists mitigated concerns. We discuss survey results in the context of an established ethical framework for citizen science, and describe the potential of constructive collaboration between citizens and researchers to both increase data collection and advance understanding of how the brain operates outside the confines of the lab. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Liberalism, Art, and FundingDale Francis MurrayLiberalism, Art, and FundingSince Ronald Dworkin published A Matter of Principle, a host of critics have attempted to systematically dismantle his arguments advocating state support for the arts that appear in a chapter entitled, "Can a Liberal State Support Art?"1 The combined critical force of Noël Carroll, Samuel Black, and most recently, Harry Brighouse, has dislodged the main supports of Dworkin's position on this (...) subject.2 However, while I am skeptical that the arguments of liberals who endorse state support for the arts can be fully resurrected, I reckon that a few remarks can be presented to try to deflect at least a fraction of the contentions cast on Dworkin's argument by the critics listed above. In order to refine our understanding of precisely why state support for cultural expression should or should not be permitted, it is imperative that some sort of response to the critics of state support for the arts is offered.In this essay, I focus primarily on Brighouse's objections that Dworkin's arguments supporting arts funding fail primarily because they are not sensitive enough to the ways in which such support violates two demands of justice in a liberal state — state neutrality and publicity. I examine these two objections since they seem to be the most interesting, compelling, and damaging to Dworkin's case if substantiated. If Brighouse is correct, these violations act as heavy bulwarks against state support for arts funding, especially since public distrust of the state's intent (and the state's perceived advocacy of notions of the good with which the public disagrees) is high. I will employ Brighouse's neutrality of intent constraint, because it best represents the alleged specific violations of state neutrality that may undermine Dworkin's case. Additionally, neutrality of intent is the most plausible form of neutrality for advocates of public arts funding to build a case for in the space of a short essay.I also wish to make a distinction, which for the most part, is ignored by Dworkin's critics — that there is a degree to which moral value and aesthetic value are different and that this effects a possible alternative reading of the term "ways of life" as most liberals understand it. As a final note of preface, I will assume that the background conditions of income and wealth are just.3 This proviso will become important when we examine the role of the market in funding arts projects in lieu of the government. Now let us reiterate the two requirements of any just liberal state that are at issue when considering the legitimacy of state support for the arts. [End Page 116]Brighouse sets the pair of constraints on any just liberal state (neutrality and publicity) as the centerpieces of his essay. Neutrality of intent, that he appeals to more specifically, can be understood to mean, as Brighouse himself explains, "[T]hat while it is unobjectionable that state actions will have differential effects on conceptions of the good, the government should not intend to favor some conceptions over others" (NPS, 38, emphasis mine). The publicity constraint can be characterized by saying that in any just, liberal regime, justice must not only be done, but it must also be seen as being done. While this serves as the motto of the publicity constraint, it is significant to acknowledge that it stipulates that the real reasons for governmental action must be comprehensible to, and available for inspection by, reasonable citizens. In addition, it must be readily apparent to citizens that the demands of justice are being met. I will return to this constraint on the state later in this essay.Neutrality is of chief interest, since recent liberal political philosophers have emphasized the primacy of the right over the good (RLD, 245). Presumably, individuals, via their rational autonomy, shall define the good for themselves beyond the dictates of government. Our morality is our own personal affair, just so long as we remain within the confines of the harm principle and do not violate the equal liberty of others.On the surface, it is not apparent that state funding for the... (shrink)

As a sovereign wealth fund, the $1 trillion Norwegian Government Pension Fund-Global, which is managed by Norges Bank Investment Management on behalf of the welfare of Norway’s citizens, is supposed to be a flagship for socially responsible investments through its Council of Ethics. However, its investment in Delta Topco, the holding company of Formula 1 world championship that, through Formula One Group, brokered a deal with Russia to host a Formula 1 Grand Prix in 2014, raises the question of (...) whether the Oil Fund should enhance its due diligence processes. Although no evidence of corruption related to the race is introduced, the complex relation between financial logic and the world of sports still raises questions about the ethical solidity of the Oil Fund’s investment. Drawing upon reports of the relationship between political economy and sporting events, this paper therefore analyses, in light of the Oil Fund’s ethical guidelines, the complexities of its investment in Delta Topco. As a result, it is argued that a new set of examination methods by the Council of Ethics may be warranted. (shrink)

In this article, I make a philosophical case for the state to fund religious schools. Ultimately, I shall argue that the state has an obligation to fund and provide oversight of all schools irrespective of their religious or non-religious character. The education of children is in the public interest and therefore the state must assume its responsibility to its future citizens to ensure that they receive a quality education. Still, while both religious schools and the polity have much to (...) be gained from direct funding, I will show that parents and administrators of these schools may have reasons to be diffident toward the state and its hypothetical interference. While the focus of the paper is primarily on the American educational context, the philosophical questions related to state funding and oversight of religious schools transcend any one national context . (shrink)

This book is the culmination of the COST Action CA15212 Citizen Science to Promote Creativity, Scientific Literacy, and Innovation throughout Europe. It represents the final stage of a shared journey taken over the last 4 years. During this relatively short period, our citizen science practices and perspectives have rapidly evolved. In this chapter we discuss what we have learnt about the recent past of citizen science and what we expect and hope for the future.

“Female sexual dysfunction” is the type of contested disease that has sparked concern about the role of the pharmaceutical industry in medical science. Many policies have been proposed to manage industry influence without carefully evaluating whether the proposed policies would be successful. We consider a proposal for incorporating citizen stakeholders into scientific research and show, via a detailed case study of the pharmaceutical regulation of flibanserin, that such programs can be co-opted. In closing, we use Holman’s asymmetric arms race framework (...) as a tool for evaluating policies in industry-funded science. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

Many states offer generous provision of fertility treatment, but this article asks whether and how such state funding can be justified. I argue that, at most, there is limited justification for state funding of fertility treatment as one good among many that could enable citizens to pursue valuable life projects, but not one that should have the privileged access to funding it is currently given. I then consider and reject reasons one might think that fertility treatment has a special (...) claim to funding, over the other goods that might enable life projects. First, I deny that fertility treatment has a special claim to funding on the grounds that infertility is a disease or disability. Second, I argue that individuals do not have a right to assistance with the project of having a child of their own. Third, I deny that providing fertility treatment is a special case on the grounds that having children is good for society. However, there may be one exception: states have a reason to fund fertility treatment for same sex couples that does not apply to heterosexual couples. (shrink)

Organizational sensegiving is a framework that details influencing others in an organization’s process of making meaning of new information. In this study, we examined sensegiving through performance-based funding (PBF) discourse of state actors to Ohio citizens. Utilizing critical discourse analysis, 14 media releases were analyzed, focusing on linguistic construction to examine discursive strategies used by public institution presidents and politicians implementing PBF. This study contributes to the existing literature by exploring how state actors are sensegivers to citizens, stating (...) their responses to implementing PBF. We found two contrasting narratives, the crisis, and collective good narrative, at the core of sensegiving PBF. (shrink)

Background Healthcare systems are increasingly struggling with resource constraints, given demographic changes, technological development, and citizen expectations. The aim of this article is to normatively analyze different suggestions regarding how publicly financed plastic surgery should be delineated in order to identify a well-considered, normative rationale. The scope of the article is to discuss general principles and not define specific conditions or domains of plastic surgery that should be treated within the publicly financed system. Methods This analysis uses a reflective equilibrium (...) approach, according to which considered normative judgements in one area should be logically and argumentatively coherent with considered normative judgements and background theories at large within a system. Results and conclusions In exploring functional versus non-function conditions, we argue that it is difficult to find a principled reason for an absolute priority of functional conditions over non-functional conditions. Nevertheless, functional conditions are relatively easier to establish objectively, and surgical intervention has a clear causal effect on treating a functional condition. Considering non-functional conditions that require plastic surgery [i.e., those related to appearance or symptomatic conditions ], we argue that the patient needs to experience some degree of suffering, which must be ‘validated’ in some form by the healthcare system. This validation is required for both functional and non-functional conditions. Functional conditions are validated by distinguishing between statistically normal and abnormal functioning. Similarly, for non-functional conditions, statistical normality represents a potential method for distinguishing between what should and should not be publicly funded. However, we acknowledge that such a concept requires further development. (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 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)

Faced with the loss of a part of the Polish state’s territory, that is, after the first partitioning of Poland by the neighboring countries—Russia, Austria and Prussia—and fearing even worse possible scenario of the loss of independence, the last king of Poland Stanisław August Poniatowski made a far-sighted decision, which he implemented on 14 October, 1773, by a motion, passed by the Partition Sejm of the Polish-Lithuanian Commonwealth, establishing the Commission for National Education, prefiguring the Ministry for National Education. The (...) source of funding was the post-Jesuit property obtained by the suppression of the Jesuit Order by Pope Clement XIV; the order was abolished in Poland, as well.Cracow and Vilna universities were modernized, and these were also entrusted with the direct supervision of secondary schools, created anew as secular ones. Instruction in parochial elementary schools was carried out in Polish only; few of those were set up in the countryside, though. Entries were invited for course books in natural sciences and the history of Poland. Women were included in the state’s educational effort, too. (shrink)

This article takes a parsimonious conception of a developed State operating under a minimalist conception of democracy and asks whether such a State must fully resource any tertiary (post-compulsory) education for its citizens A key public policy barrier to arguing an absolute obligation for the State to resource any tertiary education is considered; namely, the fact of scarce resources creating competing obligations for the State. This article argues even a minimalist conception of democracy requires that States fully resource some (...) tertiary (post-compulsory) education, regardless of whether directing resources away from other public needs results in the non-prevention of some avoidable suffering and death. A policy recommendation for resourcing this education is considered, and an alternative policy proposed. (shrink)

We are unlikely to stop seeking pleasure, as this would prejudice our health and well-being. Yet many psychoactive substances providing pleasure are outlawed as illicit recreational drugs, despite the fact that only some of them are addictive to some people. Efforts to redress their prohibition, or to reform legislation so that penalties are proportionate to harm have largely failed. Yet, if choices over seeking pleasure are ethical insofar as they avoid harm to oneself or others, public health strategies should foster (...) ethical choice by moving beyond current risk management practices embodied in the harm reduction movement. The neuroscience of pleasure has much to offer neuroethics and public health strategies. Distinguishing between ‘wanting’ and ‘liking’ fosters new understandings of addiction. These hold promise for directing the search for pharmacotherapies which prevent addiction and relapse or disrupt associated neuromechanisms. They could inform new research into creating lawful psychoactive substances which give us pleasure without provoking addiction. As the health and well being of human and other animals rests upon the experience of pleasure, this would be an ethical objective within public health strategy. Were ethical and neurobiological obstacles to ending addiction to be overcome, problems associated with excessive consumption, the lure of unlawful psychoactive substances and the paucity of lawful means to achieve pleasurable altered states would remain. Non-addictive designer drugs, which reliably provided lawful access to pleasures and altered states, would ameliorate these public health concerns insofar as they fostered citizens’ informed, ethical choices according to a neurobiological taxonomy of pleasures. (shrink)

In this article, I share an anecdote about citizen science and use it to reflect on this rapidly growing field of scientific activity, its funding, and its governance. The paper focuses particularly on the epistemic and social challenges that accompany increasing demands for professionalization and institutionalization of the Citizen Sciences.

In the Canadian health care system, the Government is responsible for allocating scarce resources in a fair and equitable manner. A proposal to implement managed care as a method of reimbursing physicians in Alberta, Canada, needs careful ethical consideration, because physicians are not well prepared, and should not be asked, to make the resulting difficult allocation decisions. The Government must continue to be held responsible for ensuring that all citizens have equal access to necessary medical services, and we must (...) find ways to encourage the public to become more involved in deciding how resources are best allocated. Health professionals other than physicians must take an interest and enter into this debate. (shrink)

The deepening U.S. farm crisis has been accompanied by numerous benefit fund raisers, individual donations and volunteer programs—all an expression of cooperation and concern on the part of U.S. citizens, farmer and non-farmer alike. These responses have received wide media attention and much public praise. A sense of patriotism and self-reliance underlies their popularity. Nevertheless, such efforts work to undermine their own ultimate objective—that of improving the economic circumstances of the family farm and farm family.This irony, it is argued, (...) arises from the fact that these charitable responses typically depoliticize the nature of the U.S. farm crisis. First, they deflect public attention away from the larger economic context and the structural inequities within it. Second they revitalize agrarian-based myths which serve to rationalize and to reproduce the ‘independent’ behavior of small, commercial farmers. Finally, it is argued that the depoliticization of the farm crisis is itself a political strategy, one which supports and legitimizes ‘business as usual’ and is compatible with the interests of corporate agriculture. (shrink)

The Health Impact Fund (HIF) is a project aimed at expanding access to life-saving drugs worldwide and incentivizing pharmaceutical companies to invest in research and development for neglected diseases. The HIF would invert the existing patent framework by rewarding ideas through their diffusion rather than protecting against this diffusion, by encouraging a collective rather than privatized wealth scheme. The basic idea behind the HIF is the creation of a new competitive market that centers on individuals who, under normal circumstances, exert (...) very little force on the tide of market demand. The HIF does not operate on standard market measures of demand, but instead measures demand as a product of needs, while in conventional market scenarios, private citizens and national welfare states pay for needs. The idea is that the HIF would create a functional, competitive market in which pharmaceutical profit is determined by the actual health impact of each new drug, a measure born from pharmacological and distributive efficacy. In this article, the basic features of and main challenges to the HIF are addressed. (shrink)

This article has three main parts, Section 2 considers the nature and extent to which individuals who are well-off have a moral obligation to aid the worlds needy. Drawing on a pluralistic approach to morality, which includes consequentialist, virtue-based, and deontological elements, it is contended that most who are well-off should do much more than they do to aid the needy, and that they are open to serious moral criticism if they simply ignore the needy. Part one also focuses on (...) the United States, and illustrates both how incredibly wealthy the U.S. is and some of the spending habits of its citizens; however, its considerations apply to the well-off generally. Section 3 considers whether justice provides reasons for helping the needy. Noting that justice in an extremely complex notion, it discusses numerous considerations relevant to justices scope and implications, including an extended Rawlsian conception of justice, an absolute conception, a comparative conception, the distinction between natural and social justice, and various elements of common-sense morality. Section 2 also distinguishes between agent-relative justice-based reasons, which are relevant to whether we act justly, and agent-neutral justice-based reasons, which are relevant to whether we have reasons of justicefor acting. Correspondingly, it argues that even if one can ignore the needy without acting unjustly, as philosophers like Robert Nozick and Jan Narveson contend, there may be powerful reasons of justicefor addressing their plight. Section 4 briefly address the responsibilities of international organizations like the World Bank, the International Monetary Fund (IMF), and World Trade Organization (WTO). Drawing on Section 2, it is suggested that in addition to standard reasons to act justlytowards needy members of the worlds community, there will be reasons of justicefor such organizations to aid the needy in both present, and future, generations. The article concludes by contending that the well-off in countries like the U.S. have reason to view international organizations like the World Bank, IMF, and WTO as their agents, and to seek to insure that they alleviate misfortunes amongst the worlds needy. (shrink)

Priority setting is inevitable to control expenditure on expensive medicines, but citizen support is often hampered by the workings of the ‘identified victim effect’, that is, the greater willingness to spend resources helping identified victims than helping statistical victims. In this paper we explore a possible cognitive debiasing strategy that is being employed in discussions on healthcare priority setting, which we call ‘empathy counterbalancing’ (EC). EC is the strategy of directing attention to, and eliciting empathy for, those who might be (...) harmed as a result of one-sided empathy for the very ill who needs expensive treatment. We argue that governments have good reasons to attempt EC because the identified victim effect distorts priority setting in ways that undermine procedural fairness. We briefly outline three areas of application for EC and suggest some possible mechanisms that might explain how EC might work, if at all. We then discuss four potential ethical concerns with EC. First, EC might have the counterproductive effect of reducing overall citizen support for public funding of expensive medical treatments, thereby undermining solidarity. Second, EC may give rise to a ‘competition in suffering’, which may have unintended side effects for patients who feature in attempts at EC. Third, there may be doubts about whether EC is effective. Fourth, it may be objected that EC comes down to emotional manipulation, which governments should avoid. We conclude that insofar these concerns are valid they may be adequately addressed, and that EC seems a promising strategy that merits further investigation. (shrink)

The authors discussed the reasons for the recent economic collapse as caused by the lack of large businesses and global corporations losing touch with the people they serve. Losing touch has caused a distancing of understanding of the customers as people by these businesses and corporations. An antidote to this is that decisions that have to be made in global businesses as well as domestic organizations reflect some level of empathy. The objective is to highlight the fact that these businesses (...) are corporate citizens and in themselves must be aware of the culture in which they conduct themselves. The authors discuss how empathie decision-making can become part of the corporate fabric without losing any sense of appropriate business judgment. A process is defined to enable the empathie process. Finally, a straw man is set up to fund/enable the process while creating a positive and profitable business environment. (shrink)

The faith in progress that propelled the West for over four centuries is in decline due to its own success. The emergence of capitalism with its novel market imperatives has created both the poverty that causes political crises and the material growth that has destabilized the Earth’s climate. There is a growing sense that we are dominated by the technologies and social organizations that we hoped would liberate us. Individualism and secularity have left people feeling isolated and without a sense (...) of higher purpose, leading some to reject Enlightenment values in favor of traditionalisms and even neofascism. In universities, faculty struggle to prove their utility and relevance, because they cannot guarantee their graduates a decent living in a world of automation and globalized production. As a result of these trends, the West’s ability to produce responsible citizens is in question. Our students are largely inured to appeals to transcendent values because they are urged to be “practical.” Faculty are no longer encouraged to care about the character-building nature of a liberal education. United States universities are in danger of not having an independent voice, as those departments that can consistently get major external funding seek commercial applications for the products of their research. In the United States, ideologically based harassment and censorship of unpopular ideas takes place regularly and is a major deterrent to pursuing a career in higher education. Given these challenges, can intellectuals still make a difference in universities? Many have taken to social media and other ways of getting their ideas around the increasingly steep paywalls of academic publications and the de facto censorship in their institutions. Some of the most vibrant exchanges of ideas are now happening in other places, largely online. These venues draw in people who are trying their best to learn something they are unlikely to learn at universities. But are such alternatives truly sustainable or good enough? Higher education is at a crossroads in which even this “retreat and regroup” strategy is highly problematic. (shrink)

Introduction. The inadequacy of the support measures provided to children with orphan diseases is exacerbated by the trend towards an increase in the number of children with such a diagnosis. Orphan diseases also include diseases caused by primary immunodeficiency or congenital errors of immunity, which are life-threatening. However, these people are part of society and require attention from it, and social and economic measures from the state. Most of them, with proper treatment, socialization and appropriate government support, can lead a (...) normal life and live a full life. Scientific novelty of the research. On the basis of the study results, the authors contribute to clarifying the principles used in the implementation of the security function of the social state. The targeting of social support measures must be supplemented with the principles of social justice and freedom to choose ways to meet the needs of specific categories of citizens, understood as follows. The welfare state supports those citizens who need it most of all, namely, the poor. Specific categories of citizens can satisfy their needs, while having the opportunity to choose. This opportunity arises thanks to the receipt of targeted assistance in the form of monthly or annual subsidies. Families with children with orphan diseases should also be included in these categories. If they have the right to receive annual government subsidies, they will be able to spend these funds depending on the current needs due to the state of health of their children with orphan diseases (for the purchase of socially important food products; medicines, medical nutrition, and various services). The aim of the work is to study the problems of providing support measures to children with orphan diseases in the context of the current model of the welfare state. The article analyzes the satisfaction of patients with congenital immunity errors with various types of state support, identifies problems that reduce their satisfaction. Methods. The authors use methods such as comparative analysis, study of regulatory legal acts, sociological analysis. Results. On the basis of the study results the effectiveness of measures of state support for children with orphan diseases, studying the best experience of foreign countries, proposals were made to clarify the principles used to implement the security function by the social state, to expand the composition of the subjects involved in providing support measures analyzed in the article. Conclusions. The results obtained make it possible to assert that the targeted approach, which is basic in the model of the welfare state, does not cover most of the problems of children with innate immunity errors and, accordingly, the families that represent their interests. (shrink)

The main aim of this paper is to investigate the micro and macro predictors of Portuguese willingness to pay (WTP) more taxes to bolster funds channelled to the National Health Service (NHS). An online questionnaire was used to collect data from 584 Portuguese citizens. The statistical analysis was performed through the application of logistic regressions. The research shows that willingness to support increasing taxes depended on socioeconomic, behavioural, and psychological factors. The WTP more taxes to finance the NHS (...) were associated with younger ages, life satisfaction and dispositional optimism, satisfaction with the NHS performance, current perceived risk exposure, and risk orientation. Identifying and understanding the main influencing factors associated with WTP more taxes for NHS is essential to assist policy-makers in developing healthcare reforms. Decision-makers may take this opportunity to improve the NHS since those who ultimately benefit from the measures can provide an additional source of health financing. (shrink)

Nonprofit organizations play a crucial role in society. Unfortunately, many such organizations are chronically underfunded and struggle to meet their objectives. These facts have significant implications for corporate philanthropy and Kant’s notion of imperfect duties. Under the concept of imperfect duties, businesses would have wide discretion regarding which charities receive donations, how much money to give, and when such donations take place. A perceived problem with imperfect duties is that they can lead to moral laxity; that is, a failure on (...) the part of businesses to fulfill their financial obligations to nonprofit organizations. This article argues the problem of moral laxity rests on a misinterpretation of Kantian ethics and, therefore, is really not a problem at all. As such, we argue corporate philanthropy while an imperfect duty should be interpreted more akin to perfect duties and, as a consequence, moral laxity does not arise for those corporations committed to acting on the basis of the moral law. More specifically, firms have duty-based obligations on the basis of benevolence, and as good corporate citizens, to help fund non-profit organizations. (shrink)

Australia, Canada, and New Zealand currently apply health requirements to prospective immigrants, denying residency to those with health conditions that are likely to impose an “excessive demand” on their publicly funded health and social service programs. In this paper, I investigate the charge that such policies are wrongfully discriminatory against persons with disabilities. I first provide a freedom-based account of the wrongness of discrimination according to which discrimination is wrong when and because it involves disadvantaging people in the exercise of (...) their freedom on the basis of morally arbitrary features of their identity. Discrimination is permissible, I suggest, when it is necessary to advance a valuable exercise of the discriminating agent’s freedom. I then apply this account to the case of social cost health requirements. Against critics of these requirements, I argue that it is sometimes permissible for states to discriminate against prospective immigrants with disabilities. States may do so, I suggest, when such discriminatory treatment is necessary to prevent an increase in rates of mortality and/or morbidity amongst citizens. Alongside critics of social cost health requirements however, I argue that existing policies are likely a form of wrongful discrimination insofar as they are too broad to satisfy this standard. (shrink)

The orthodox view on higher education financing is that students should bear some of the costs of attending and, where necessary, meet that cost through debt financing. New economic realties, including protracted economic slowdown and increasing austerity of the state with respect to the public funding of goods and services has meant that the same generation who have to borrow the most in order to attend face significantly fewer employment prospects upon graduation. In this context, is the current approach of (...) shifting the costs of post-secondary education from the general public to individual students justified? Most debate on the issue has focused on the demands of distributive justice within the modern higher education system and on the whole accepts the idea that students ought to pay. I argue that distributive arguments alone are insufficient because they tacitly endorse the provision of higher education as being much like a consumer's choice. As an alternative, I explore the place and importance of higher education in supporting personal autonomy as a central liberal democratic value. I then argue that debt financing of higher education places unreasonable constraints on student's choices with respect to the kind of democratic citizens that they would otherwise aspire to be. This constraint has negative implications for the wellbeing of individual students and the larger society. (shrink)

International uproar followed the recent announcement of the birth of twin girls whose genomes had been edited with a breakthrough DNA editing-technology. This technology, called clustered regularly interspaced short palindrome repeats or CRISPR-Cas9, can alter any DNA, including DNA in embryos, meaning that changes can be passed to the offspring of the person that embryo becomes. Should we use gene editing technologies to change ourselves, our children, and future generations to come? The potential uses of CRISPR-Cas9 and other gene editing (...) technologies are unprecedented in human history. By using these technologies, we eradicate certain dreadful diseases. Altering human DNA, however, raises enormously difficult questions. Some of these questions are about safety: Can these technologies be deployed without posing an unreasonable risk of physical harm to current and future generations? Can all physical risks be adequately assessed, and responsibly managed? But gene editing technologies also raise other moral questions, which touch on deeply held, personal, cultural, and societal values: Might such technologies redefine what it means to be healthy, or normal, or cherished? Might they undermine relationships between parents and children, or exacerbate the gap between the haves and have-nots? The broadest form of this second kind of question is the focus of this book: What might gene editing--and related technologies--mean for human flourishing? In the new essays collected here, an interdisciplinary group of scholars asks age--old questions about the nature and well-being of humans in the context of a revolutionary new biotechnology--one that has the potential to change the genetic make-up of both existing people and future generations. Welcoming readers who study related issues and those not yet familiar with the formal study of bioethics, the authors of these essays open up a conversation about the ethics of gene editing. It is through this conversation that citizens can influence laws and the distribution of funding for science and medicine, that professional leaders can shape understanding and use of gene editing and related technologies by scientists, patients, and practitioners, and that individuals can make decisions about their own lives and the lives of their families. (shrink)

English abstract: On last day of the year 1999, Russia has entered another era of despotism, that of Vladimir Putin. During his reign, the Putin‘s clan has undermined and infiltrated the mass media, the parliament and the judicial system. Deliberate violation of basic citizen‘s rights, compulsory acquisition of property, government-funded racket, misuse of mass media to scarify and to disinform the peoples belong to the diabolic methods of self-constituted disposers. All this lawlessness has led to exorbitant corruption, mass poverty, economic (...) stagnation, and escalation of crimes. The actual manuscript investigates the roots of Putinism putting the person of Vladimir Putin in the focus of investigation. -/- Russian abstract: В 1999 году, в последний день столетия и тысячелетия, Россия вступила в новую эру деспотизма, эру Владимира Путина. В продолжение его правления, клан Путина коррумпировал и инфильтрировал средства массовой информации, парламент, правовую систему. Умышленное нарушение основных гражданских прав, конфискация собственности, государственный рэкет, злоупотребление средств массовой информации с целью запугивания и дезинформации населения стали дьявольскими методами самоназванных правителей. Всё это привело к безмерной продажности, массовой бедности, экономической стагнации и взрыву преступности. Данный манускрипт исследует корни Путинизма, помещая личность Владимира Путина в центр исследования. (shrink)

In modern representative democracies, much healthcare is publicly funded or provided and so the question of what healthcare systems should do is a matter of public policy. Given that public resources are inevitably limited, what should be done and who should benefit from healthcare? It is a dilemma for policymakers and a subject of debate within several disciplines, but rarely across disciplines. In this paper, I draw on thinking from several disciplines and especially philosophy, economics, and systems theory. I conclude (...) that economist and philosopher John Broome’s writing provides the framework for an answer: a healthcare system in a democracy should do as much good as possible, although sometimes we should sacrifice some overall good for the sake of fairness. This leaves open some detailed questions about what in practice we consider to be good and fair, and about when some good should be traded off in order to be fair. The answers to these questions depend on our values, or as explained by systems theory, our weltanschauung. How policy decisions should be made when citizens’ values differ is a subject of extensive academic debate. However, it is a separate question. Representative democracies have mechanisms for resolving such debates. (shrink)

For more than 30 years, beginning with the Reagan administration's refusal to support and provide oversight for embryo research, and continuing to the present in congressionally imposed limits on funding for such research, progress in infertility medicine and the development of stem cell therapies has been seriously delayed by a series of political interventions. In almost all cases, these interventions result from a view of the moral status of human embryo premised largely on religious assumptions. Although some believe that these (...) interventions are valid expressions of religious values in the public sector, it is argued here that they, in fact, contradict Rawls's conception of public reasoning. Both the prohibition of research involving the human embryo as well as bans on federal funding for embryo-related research place the particular religious views of some citizens above the pressing health needs of almost all, and thus violate the ideal of civility implicit in the Rawlsian standard. (shrink)

This book explicitly addresses policy options in a democratic society regarding cognitive enhancement drugs and devices. The book offers an in-depth case by case analysis of existing and emerging cognitive neuroenhancement technologies and canvasses a distinct political neuroethics approach. The author provides an argument on the much debated issue of fairness of cognitive enhancement practices and tackles the tricky issue of how to respect preferences of citizens opposing and those preferring enhancement. The author persuasively argues the necessity of a (...) laws and regulations regarding the use of cognitive enhancers. He also argues that the funds for those who seek cognitive enhancement should be allocated free of charge to the least advantaged. The work argues that the notion of autonomy has been mistakenly associated with the metaphysical concept of free will, and offers a political definition of autonomy to clarify how responsibility is implicitly grounded in the legal and political system. As such, this book is an essential read for everyone interested in neuroethics, and a valuable resource for policy makers, as well as scholars and students in philosophy, law, psychiatry and neuroscience. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kenneth Burke, John Dewey, and the Pursuit of the PublicPaul StobIn Deliberation Day, Bruce Ackerman and James Fishkin argue for the creation of a national holiday, "Deliberation Day," in which citizens come together over a two-day period in their local schools and community centers to deliberate over the merits of presidential candidates and their platforms (Ackerman and Fishkin 2004). While Ackerman and Fishkin propose that the government pay (...) each citizen a $150 stipend for voluntary participation, the purpose is not so much to monetarily to reward citizens for "showing up" as it is to foster an enriched civic culture that would send shockwaves through America's political infrastructure: "If Deliberation Day succeeded, everything else would change: the candidates, the media, the activists, the interest groups, the spin doctors, the advertisers, the pollsters, the fund raisers, the lobbyists, the political parties. All would have no choice but to adapt to a more attentive and informed public" (3). The task of Deliberation Day would be to create a new social context in which citizens could become enlightened through public participation. As the authors conclude the book, "We can, through an act of political imagination, create new institutions for redeeming the ancient promise of democratic citizenship. Ordinary men and women need not be the hapless playthings of the powerful. They can and must find new ways to hold their leaders to account, and redeem their dignity as human beings by responsibly shaping their collective destiny" (219).Ackerman and Fishkin's proposal is indeed filled with political imagination. I bring their proposal to light not to critique the possibilities and limitations of Deliberation Day, but to understand the way in which the authors understand "the public." At the bottom, what the polity needs, Ackerman and Fishkin believe, is a public space dedicated to the reinvigoration [End Page 226] of political culture. It is not that the citizenry is incapable of hammering out intelligent political solutions, but that it needs access to social contexts that facilitate deliberation and the emergence of a common good. To foster a culture of political intelligence, the public needs only the chance to enter the forums that will facilitate thorough, cooperative political decision-making.Ackerman and Fishkin are not alone in calling for access to or creation of these types of forums. Habermas's bourgeois public sphere—a public space in which citizens could come together and rationally debate the activities of the state—essentially represents the evolution of a context, a social space, a public arena (Habermas 1989). The bourgeois public sphere is meant to be egalitarian, providing citizens a forum in which to debate openly and foster a common political consciousness.1 But this sphere has proved problematic for a number of scholars. Oskar Negt and Alexander Kluge (1993), for example, propose a proletarian public sphere to counter capitalism's socioeconomic domination over public resources. Joan Landes (1988) argues that the bourgeois public sphere entails male domination in public life, to the exclusion of women. Nancy Fraser (1992) builds on the feminist critique by adopting the term "counterpublics," collectives of citizens—women, peasants, the working class, and other groups demarcated by issues of race, gender, and ethnicity—that arise in reaction to the dominant public sphere.2In the introduction to Counterpublics and the State (2001), Robert Asen and Daniel Brouwer argue that critiques of the bourgeois public sphere specifically and public sphere theory generally amount to three "reconfigurations" in the way in which scholars think of the public. First, scholars have come to recognize the existence and interaction of multiple public spheres. Second, they have come to acknowledge permeable boundaries of access to the multiple public spheres. Third, scholars have come to recognize the dynamic role of the state in shaping public discourse. One considerable result of these three reconfigurations is an increasing recognition of the political divisions that permeate society (Asen and Brouwer 2001, 17-25).If Asen and Brouwer are right, and I think they are, these three reconfigurations represent the general thrust of contemporary public sphere scholarship, including as it is understood among communication scholars.3 And however diverse such scholarship may be, a few common themes seem to recur across... (shrink)

Should governments pay ransoms to terrorist organisations that unjustly kidnap their citizens? The United Kingdom and the United States refuse to negotiate with terrorist groups that kidnap and threaten to kill their people. In contrast, continental European countries, such as France and Germany, have regularly paid ransoms to rescue hostages. Who is right? This debate has raged in the public domain in recent years, but no sustained attempt has been made to subject the matter to philosophical scrutiny. This article (...) explores this issue, focusing on the case of ransom payments to terrorist organisations. It contends that the state's duty to protect its citizens from murder grounds a defeasible obligation to pay ransoms. It considers the objection that a policy of paying ransoms endangers citizens abroad by increasing the likelihood of future kidnappings, and it explains why this objection is not sufficiently weighty. It then identifies a more powerful objection: namely, that a state's payment of ransoms makes the state complicit in the serious injustices that its ransom payments fund. It concludes that unless states can offset their contributions to such injustices, paying ransoms is wrong. (shrink)

Crowdfunding is regarded a financing mechanism that could improve the funding opportunities of businesses with a pro-social orientation. Indeed, it is assumed that on digital platforms, citizens are inclined to provide more support to projects with a social benefit than to those without such an orientation, with significant ethical implications for the common good. Yet, extant empirical evidence regarding such a claim is still inconclusive. To advance this discussion, the present paper analyzes the conditions that influence crowd support for (...) projects displaying a pro-social orientation on a reward-based crowdfunding platform. To build our hypotheses, we adopt the lens of framing theory, and we relate it to the digital context. Beginning from the premise that, on crowdfunding platforms, information about projects has a hierarchical structure, we argue that a project’s success crucially depends on how much its proponent emphasizes the pro-social cues within this structure. Moreover, we propose that because pro-social cues demarcate a project over others, the effectiveness of pro-social framing is enhanced when the number of projects on the platform, i.e., its crowdedness, increases. Logit estimates on 8631 Kickstarter projects indicate that pro-social framing is positively associated with success as we expected, yet only when it is moderately emphasized. Further, we find that crowdedness on the platform positively moderates the effect of pro-social orientation on success. (shrink)

In view of the explanatory significance of joblessness, some social scientists, policymakers, and commentators have advocated strong measures to ensure that the ghetto poor work, including mandating work as a condition of receiving welfare benefits. Indeed, across the ideological political spectrum, work is often seen as a moral or civic duty and as a necessary basis for personal dignity. And this normative stance is now instantiated in federal and state law, from the tax scheme to public benefits. This Article reflects (...) critically on this new regime of work. I ask whether the normative principles to which its advocates typically appeal actually justify the regime. I conclude that the case for a pro tanto moral or civic duty to work is not as strong as many believe and that there are reasonable responses to joblessness that do not involve instituting a work regime. However, even if we grant that there is a duty to work, I maintain that the ghetto poor would not be wronging their fellow citizens were they to choose not to work and to rely on public funds for material support. In fact, I argue that many among the black urban poor have good reasons to refuse to work. Throughout, I emphasize what too few advocates of the new work regime do, namely, that whether work is an obligation depends crucially on whether background social conditions within the polity are just. (shrink)

Massive amounts of data are collected and stored on a routine basis in virtually all domains of human activities. Such data are potentially useful to biomedicine. Yet, access to data for research purposes is hindered by the fact that different kinds of individual-patient data reside in disparate, unlinked silos. We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. Data cooperatives enable direct control over personal data, as well as more democratic (...) governance of data pools. This model can realize a specific kind of data economy whereby citizens and communities are empowered to steer data use according to their motivations, preferences, and concerns. Policy makers can promote this model by recognizing citizens’ rights to access and to obtain a copy of their own data, and by funding distributed data infrastructures piloting new data aggregation models. (shrink)

In modern representative democracies, much healthcare is publicly funded or provided and so the question of what healthcare systems should do is a matter of public policy. Given that public resources are inevitably limited, what should be done and who should benefit from healthcare? It is a dilemma for policymakers and a subject of debate within several disciplines, but rarely across disciplines. In this paper, I draw on thinking from several disciplines and especially philosophy, economics, and systems theory. I conclude (...) that economist and philosopher John Broome’s writing provides the framework for an answer: a healthcare system in a democracy should do as much good as possible, although sometimes we should sacrifice some overall good for the sake of fairness. This leaves open some detailed questions about what in practice we consider to be good and fair, and about when some good should be traded off in order to be fair. The answers to these questions depend on our values, or as explained by systems theory, our weltanschauung. How policy decisions should be made when citizens’ values differ is a subject of extensive academic debate. However, it is a separate question. Representative democracies have mechanisms for resolving such debates. (shrink)

Current law in Victoria, Australia requires that all prospective assisted reproduction patients provide a criminal background check and child protection order check prior to being eligible for treatment. These presumptions against treatment stipulated in the Assisted Reproductive Treatment Act are discriminatory against all people that are infertile. Requiring assistance in founding a family says nothing about whether someone will be a minimally decent parent to their child. The most plausible justifications for this differential treatment of family builders that require assistance (...) are unsound. The wellbeing of the resulting child is something that the prospective patient should be presumed to have at heart, as this is the default assumption with other kinds of family builders that do not require assistance. That assisted reproduction treatment is publicly funded does not mean that the state is thereby justified in putting moral conditions on access to treatment. As we should not accept discriminatory laws, especially about practices that are of fundamental importance to the lives of citizens, the presumptions against treatment stipulated in ARTA should be eradicated. (shrink)

Since autumn 2012, higher education institutions in England have been able to charge undergraduate students up to £9,000 a year in tuition fees. Full-time students are expected to take out loans large enough to cover their tuition fees and living costs for the duration of their studies. They must start repaying these loans if and when their earnings reach £21,000 a year. In this bold and timely pamphlet, Christopher Martin argues that forcing students to borrow is a serious mistake. He (...) contends that higher education is a welfare good on a par with basic schooling and health care. To flourish in liberal democratic societies, citizens must be personally autonomous, and the educational demands of personal autonomy are too heavy to be met by compulsory schooling alone. To lead autonomous lives, adult citizens need ongoing educational support, support that the liberal democratic state has an obligation to provide. Higher education should therefore be a universal entitlement and free at the point of use. The global debate about who should pay for higher education is by no means settled. As England shifted the financial burden from taxpayers to students, Germany moved in the opposite direction: all German universities have offered free tuition since 2014. Christopher Martin's distinctive contribution to the debate is to lay out a principled argument, based on a plausible assessment of the purpose of higher education, for the view that students should not have to pay for their education. His argument is controversial, to be sure, but it represents a serious and considered attempt to set the question of higher education funding on sure normative foundations. (shrink)

The public sphere should be regulated so the distribution of political speech does not correlate with the distribution of income or wealth. A public sphere where people can fund any political speech from their private holdings is epistemically defective. The argument has four steps. First, if political speech is unregulated, the rich predictably contribute a disproportionate share. Second, wealth tends to correlate with substantive political perspectives. Third, greater quantities of speech by the rich can “drown out” the speech of the (...) poor, because of citizens’ limited attention span for politics. Finally, the normative problem with all this is that it reduces the diversity of arguments and evidence citizens become familiar with, reducing the quality of their political knowledge. The clearest implication of the argument is in favour of strict contribution limits and/or public funding for formal political campaigns, but it also has implications for more informal aspects of the public sphere. (shrink)

The classic case for why government must support science—with a new essay by physicist and former congressman Rush Holt on what democracy needs from science today Science, the Endless Frontier is recognized as the landmark argument for the essential role of science in society and government’s responsibility to support scientific endeavors. First issued when Vannevar Bush was the director of the US Office of Scientific Research and Development during the Second World War, this classic remains vital in making the case (...) that scientific progress is necessary to a nation’s health, security, and prosperity. Bush’s vision set the course for US science policy for more than half a century, building the world’s most productive scientific enterprise. Today, amid a changing funding landscape and challenges to science’s very credibility, Science, the Endless Frontier resonates as a powerful reminder that scientific progress and public well-being alike depend on the successful symbiosis between science and government. This timely new edition presents this iconic text alongside a new companion essay from scientist and former congressman Rush Holt, who offers a brief introduction and consideration of what society needs most from science now. Reflecting on the report’s legacy and relevance along with its limitations, Holt contends that the public’s ability to cope with today’s issues—such as public health, the changing climate and environment, and challenging technologies in modern society—requires a more capacious understanding of what science can contribute. Holt considers how scientists should think of their obligation to society and what the public should demand from science, and he calls for a renewed understanding of science’s value for democracy and society at large. A touchstone for concerned citizens, scientists, and policymakers, Science, the Endless Frontier endures as a passionate articulation of the power and potential of science. (shrink)