The idea that citizens have a right to receive information that is relevant for their suitable exercise of political rights and liberties is well established in democratic societies. However, this right has never been systematically analyzed, thus remaining a blurry concept. This article tackles this conceptual gap by conceptualizing citizens’ right to information. After reviewing previous approaches to this idea, I locate citizens’ right to information on the map of communication rights, and put forward a systematic framework for (...) both justifying and analyzing it. This framework focuses on this right’s grounds, its function, its holders, its content, and its correlative duties. Although the conceptualization offered here will be incomplete, it will be enough to distinguish the general concept of citizens’ right to information from both its specific conceptions and from the other two best-known rights of the public: freedom of information and the public’s right to know. (shrink)

I propose a model for the development of citizen rights based on the advance of political and social rights and apply it to contemporary claims regarding environmental rights. In terms of this “claims and attenuations” model, I sketch the roles of environmental philosophers and activists, the media and public opinion, and political insiders in the development of positive rights. I then predict a weakeningof environmental claims and a marginalization of environmental philosophies as environmental claims are (...) secured as positive rights. (shrink)

How will citizen rights be affected by global warming and related environmental disasters? Citizen rights have been demanded of and conferred by nation states. As a result, the benefits of citizenship remain highly variable across nations. Several schools of scholarship argue that nations states are weakening due to neoliberalism (Harvey), the rise of a world culture (Meyer), or privileged individuals’ ability to shield themselves from risk (Beck, Giddens). This article addresses those claims against the likely consequences (...) of global warming. I begin with a brief review of theories on the origins of and durability of nationalism and examine how such theories account for variability in social and political rights and group identities across the globe. I then identify the ways in which those theories have been challenged by accounts of neoliberalism, world culture, and risk society. Various reports by scientific societies, global agencies and the US government identify the likely consequences of global warming. I propose the likely reactions by states to those consequences and identify the effects those actions will have on national identity and citizen rights. (shrink)

I propose a model for the development of citizen rights based on the advance of political and social rights and apply it to contemporary claims regarding environmental rights. In terms of this “claims and attenuations” model, I sketch the roles of environmental philosophers and activists, the media and public opinion, and political insiders in the development of positive rights. I then predict a weakeningof environmental claims and a marginalization of environmental philosophies as environmental claims are (...) secured as positive rights. (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)

Taking as its starting point Miri Gur-Arye’s critical discussion of a legal duty to report crime, this paper sketches an idealising conception of a democratic republic whose citizens could be expected to recognise a civic responsibility to report crime, in order to assist the enterprise of a criminal law that is their common law. After explaining why they should recognise such a responsibility, what its scope should be, and how it should be exercised, and noting that that civic responsibility must (...) include a responsibility to report one’s own crimes; it discusses whether that civic responsibility could ground at least a limited legal duty to report certain types of crime. It then turns to the question of whether a civic responsibility to assist the criminal law’s enterprise of bringing wrongdoers to account could include a responsibility to arrest suspected or known offenders if the police cannot or will not do so—a responsibility to make a citizen’s arrest, and the legal power to discharge that responsibility: how far should citizens feel entitled, or duty-bound, thus to ‘take the law into their own hands’? (shrink)

The Rights of Others examines the boundaries of political community by focusing on political membership - the principles and practices for incorporating aliens and strangers, immigrants and newcomers, refugees and asylum seekers into existing polities. Boundaries define some as members, others as aliens. But when state sovereignty is becoming frayed, and national citizenship is unravelling, definitions of political membership become much less clear. Indeed few issues in world politics today are more important, or more troubling. In her Seeley Lectures, (...) the distinguished political theorist Seyla Benhabib makes a powerful plea, echoing Immanuel Kant, for moral universalism and cosmopolitan federalism. She advocates not open but porous boundaries, recognising both the admittance rights of refugees and asylum seekers, but also the regulatory rights of democracies. The Rights of Others is a major intervention in contemporary political theory, of interest to large numbers of students and specialists in politics, law, philosophy and international relations. (shrink)

Avia Pasternak’s account of permissible political rioting includes a constraint that insists only oppressed citizens, and not privileged citizens, are permitted to riot when rioting is justified. This discussion note argues that Pasternak’s account, with which I largely agree, should be expanded to admit the permissibility of privileged citizens rioting alongside and in solidarity with oppressed citizens. The permissibility of privileged citizens participating in riots when rioting is justified is grounded in the notions that it is sometimes necessary, in accordance (...) with Pasternak’s necessity condition, and that it will oftentimes substantially improve the chances of successfully achieving the just aims the rioting seeks to achieve, in accordance with Pasternak’s success condition. Allowing for this improves Pasternak’s already strong account of permissible political rioting on its own terms. (shrink)

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

By the late twentieth century, the liberal definition of a citizen as an individual with equal rights under the protection of the law has failed to respond to the demands of the members of contemporary plural societies. The recent discussions in political philosophy between Kantian liberal approaches and their communitarian and republican critics are relevant to this challenge. These criticisms are, in one way or another, related to the main principles of Western liberal thought. The communitarians take a (...) stand against the priority of rights over conceptions of the good in liberal politics. They also criticize the ontological assumption of the individual as an "unencumbered" self. The absence of a substantive common good and the separation of politics and morality are the shortcomings of liberalism that are stressed by both communitarians and republicans. In contrast to liberals' emphasis on rights, republicans underline the role of duties and active participation as the constitutive elements of citizenship. In fact, they reverse the relation between rights and politics as it is understood in liberalism: they regard rights as the products of the political process, rather than its presuppositions. (shrink)

By the late twentieth century, the liberal definition of a citizen as an individual with equal rights under the protection of the law has failed to respond to the demands of the members of contemporary plural societies. The recent discussions in political philosophy between Kantian liberal approaches and their communitarian and republican critics are relevant to this challenge. These criticisms are, in one way or another, related to the main principles of Western liberal thought. The communitarians take a (...) stand against the priority of rights over conceptions of the good in liberal politics. They also criticize the ontological assumption of the individual as an "unencumbered" self. The absence of a substantive common good and the separation of politics and morality are the shortcomings of liberalism that are stressed by both communitarians and republicans. In contrast to liberals' emphasis on rights, republicans underline the role of duties and active participation as the constitutive elements of citizenship. In fact, they reverse the relation between rights and politics as it is understood in liberalism: they regard rights as the products of the political process, rather than its presuppositions. (shrink)

When the brothers Hakob, 13, and Hasmik, 14, had lived in Sweden for 5 years, their applications for residence were rejected, and they were to be deported to Armenia (Dagens Nyheter March 8, 2007,...

The term food citizenship is defined as the practice of engaging in food-related behaviors that support, rather than threaten, the development of a democratic, socially and economically just, and environmentally sustainable food system. Ways to practice food citizenship are described and a role for universities in fostering food citizenship is suggested. Finally, four barriers to food citizenship are identified and described: the current food system, federal food and agriculture policy, local and institutional policies, and the culture of professional nutrition organizations.

Inter-war Australia saw the emergence of a feminist campaign for indigenous rights. Led by women activists who were members of various key Australian women's organizations affiliated with the British Commonwealth League, this campaign proposed a revitalized White Australia as a progressive force towards improving ‘world’ race relations. Drawing upon League of Nations conventions and the increasing role for the Dominions within the British Commonwealth, these women claimed to speak on behalf of Australian Aborigines in asserting their right to reparation (...) as a usurped people and the need to overhaul government policy. Opposing inter-war policies of biological assimilation, they argued for a humane national Aboriginal policy including citizenship and rights in the person. Where white men had failed in their duty towards indigenous peoples, world women might bring about a new era of civilized relations between the races. (shrink)

This paper reviews and analyses the implications of citizenship thinking for building ethical institutional arrangements for business. The paper looks at various stakeholder groups whose relation with the company changes quite significantly when one starts to conceptualize it in terms of citizenship. Rather than being simply stakeholders, we could see those groups either as citizens, or as other constituencies participating in the administration of citizenship for others, or in societal governance more broadly. This raises crucial questions about accountability and democracy (...) in stakeholder relations with the corporation. We sketch out the main currents informing and emerging from the citizenship perspective on firm-stakeholder relations; analyze specific stakeholder groups and their particular relevance in the context of a citizenship perspective; and conclude with a discussion of the broader implications in terms of building ethical institutions. (shrink)

인권은 시민권과 관계없이 독자적 가치를 지니지만, 시민권이 박탈되면 인권도 박탈되는 상황에 처한다. 근대 이후로 민족 국가를 단위로 정체가 형성되었기 때문이다. 그래서 아렌트와 아감벤은 시민권이 없는 인권은 무의미하고 무기력하다고 토로한다. 그러나 이 글은, 인권이 독자적 가치를 지니며 정치적 저항의 동력이라는 점을 발리바르의 인권정치를 통해 논증한다. 발리바르에게 인권과 시민권을 정치적으로 천명한 세계사적 기반은 「인간과 시민의 권리 선언문」이다. 선언문은 인권과 시민권의 동등성, 자유와 평등의 동등성을 개시하지만, 동등성을 이탈하는 모순과 아포리아도 동시에 노정하기 때문에 정치적 봉기의 동력이 된다. 이 글은 동등성의 아포리아를 논증하면서 인권이 지닌 (...) 정치적 가능성을 이주자와 난민 여성이 겪는 배제와 혐오를 극복하는 데 활용하려고 한다. (shrink)

In 1970, Stewart advocated disenfranchising everyone reaching retirement age or age 70, whichever was earlier. The question of whether senior citizens should be disenfranchised has recently come to the fore due to votes on issues such as Brexit and climate change. Indeed, there is a growing literature which argues that we should increase the voting power of non-senior citizens relative to senior citizens, for reasons having to do with intergenerational justice. Thus, it seems that there are reasons of justice to (...) disenfranchise senior citizens, or at least to grant them a lower voting weight than non-senior citizens. In this paper, we investigate whether there are democratic reasons to do so. To answer this question, we turn to the boundary problem in democratic theory, i.e., the question of who should be included in democratic decision-making. Two prominent solutions, and a more recent one, are particularly relevant: the all-affected principle, the all-subjected principle, and the relational egalitarian principle. When it comes to the all-affected principle and the all-subjected principle, we argue that there is reason to grant most senior citizens a lower voting weight than most non-senior citizens in most decisions. Whether that is the case on the relational egalitarian principle depends on how people relate to each other in society. Indeed, it is sometimes in accordance with the relational egalitarian view to grant senior citizens a greater voting weight than non-senior citizens. (shrink)

This article studies the chronic and acute anomic social impacts of the development of market societies in Europe over the past few decades. Focusing on the firm but linking micro and macro levels, it argues that the passage from the welfare state to disembedded markets and neoliberal governance has generated individual and collective anomie by depriving social actors of agency and voice while caging them in the disciplinary constraints of an ideal competition society. Promoted by public and private governors animated (...) by visions of managerial omnipotence, this reconfiguration has hollowed out the cluster of rights that was the basis of democratic and social citizenship in Europe. The article discusses the manifestations of anomie, stressing the violence flowing from the radical uncertainty to which atomized employees and more broadly citizens are facing in the reification of collective goals, which have been reduced to participation in market society. Drawing on the classical literature (Durkheim, Parsons, Merton) but expanding upon it, the article examines exit solutions, at the individual and collective levels, involving violence against the self (suicide) and others (mobbing, xenophobia, fascism), and concludes that Europe seems to be heading towards a protracted period of danger-laden chronic and acute anomie. (shrink)

Both general publics and elites have long used labels of left and right as cues for political communication and vote choice in Western democracies. This study examines the utility of these spatial semantics as means of encapsulating major political cleavages in East Asian democracies. Through analysis of public opinion surveys, we investigate the influence of organizational affiliation; views on socio-economic, religious, and issues, as well as attitudes toward the political system, as anchors of public understanding of the leftWestern leftright scale (...) in South Korea, the Philippines, and Taiwan, left level of ideological conceptualization are likely related to party system development and democratic experience. (shrink)

Kant limits cosmopolitan right to a universal right of hospitality, condemning European imperial practices towards indigenous peoples, while allowing a right to visit foreign countries for the purpose of offering to engage in commerce. I argue that attempts by contemporary theorists such as Jeremy Waldron to expand and update Kant’s juridical category of cosmopolitan right would blunt or erase Kant’s own anti-colonial doctrine. Waldron’s use of Kant’s category of cosmopolitan right to criticize contemporary identity politics relies on premises that upset (...) Kant’s balanced right to hospitality. An over-extensive right to visit can invoke “Kantian” principles that Kant himself could not have consistently held, without weakening his condemnation of European settlement. I construct an alternative spirit of cosmopolitan right more favorable to the contemporary claims of indigenous peoples. Kant’s analysis suggests there are circumstances when indigenous peoples may choose whether to engage in extensive cultural interaction, and reasonably refuse the risks of subjecting their claims to debate in democratic politics in a unitary public. Cosmopolitan right accorded respect to peoples; any “domestic” adaptation of cosmopolitan right should respect indigenous peoples as peoples, absent a serious public explanation by a democratic state for why it has now become appropriate to treat indigenous peoples merely as individual citizens. (shrink)

In late 2012, Hurricane Sandy hit the East Coast of the U.S., causing much suffering and devastation. Those who could have easily helped Sandy’s victims had a duty to do so. But was this a rightfully enforceable duty of justice, or a non-enforceable duty of beneficence? The answer to this question is often thought to depend on the kind of help offered: the provision of immediate bodily services is not enforceable; the transfer of material resources is. I argue that this (...) double standard is unjustified, and defend a version of what I call “Social Samaritanism.” On this view, within political communities, the duty to help the needy—whether via bodily services or resource transfers—is always an enforceable demand of justice, except when the needy are reckless; across independent political communities, it is always a matter of beneficence. I defend this alternative double standard, and consider its implications for the case of Sandy. (shrink)

The flourishing of citizen science is an exciting phenomenon with the potential to contribute significantly to scientific progress. However, we lack a framework for addressing in a principled and effective manner the pressing ethical questions it raises. We argue that at the core of any such framework must be the human right to science. Moreover, we stress an almost entirely neglected dimension of this right—the entitlement it confers on all human beings to participate in the scientific process in all (...) of its aspects. We then explore three of its key implications for the ethical regulation of citizen science: the positive obligations imposed by the right on the state and other agents to recognize and promote citizen science, the convective nature of the participation in science facilitated by the right and the potential to mobilize the right in rolling back the unprecedented expansion of intellectual property regimes. (shrink)

Any liberal democratic state must honour religious and cultural pluralism in its educational policies. To fail to honour them would betray ideals of freedom and toleration fundamental to liberal democracy. Yet if such ideals are to flourish from one generation to the next, allegiance to the distinctive values of liberal democracy is a necessary educational end, whose pursuit will constrain pluralism. The problem of political education is therefore to ensure the continuity across generations of the constitutive ideals of liberal democracy, (...) while remaining hospitable to a diversity of conduct and belief that sometimes threatens those very ideals. Creating Citizens addresses this crucial problem. In lucid and elegant prose, Professor Callan, one of the world's foremost philosophers of education, identifies both the principal ends of civic education, and the rights that limit their political pursuit. This timely new study sheds light on some of the most divisive educational controversies, such as state sponsorship and regulation of denominational schooling, as well as the role of non-denominational schools in the moral and political development of children. Oxford Political Theory presents the best new work in contemporary political theory. It is intended to be broad in scope, including original contributions to political philosophy, and also work in applied political theory. The series will contain works of outstanding quality with no restriction as to approach or subject matter. The series editors are David Miller and Alan Ryan. (shrink)

This essay examines the citizen's apparent agelessness that is foundational to liberal democratic theories. By engaging the notion of citizenship rights, Lanoix challenges this assumed perpetual adulthood and argues for a new way of conceptualizing the citizen. The broader notion of citizen as cohabitant allows for the changing relationship a citizen will have with her citizenship rights and accommodates individuals who are not self-governing but who, nonetheless, share a democratic space.

Lack of supportive workplaces may be depriving babies and mothers of the health advantages of breastfeeding. This citizen science pilot project set out to engage women in photographing and sharing information on the available facilities for breastfeeding and expressing and storing breastmilk in Australian workplaces. While some useful insights were gained, the project failed in the sense that 234 people ‘liked’ the project Facebook page set up to recruit participants, but only nine photographs were submitted. The heaviest loss of (...) participation occurred after the ethics committee requirements were explained, in particular, the requirement for employer consent to take a photograph, or alternatively, for a participant to agree to bear the risk of taking a photo without permission. The ethics committee also made stipulations about the formality of language to be used. Thus, the project’s potential role as an enabler for health action was neutered. We argue that the ethics requirements worked contrary to our purpose and possibly acted to reinforce the powerlessness some women experience at work. (shrink)

This essay aims to vindicate the importance of a theory of ordinary citizens' political prudence in a democratic society. It follows a reconstructive method, by looking at the full range of powers and decisions that are enabled by democratic rights in order to show that in contemporary democracies there is room for the exercise of political prudence by ordinary citizens. By the same method, it also reconstructs the main traits and manifestations of citizens' political prudence in the everyday politics (...) of our democracies. Theorizing citizens' political prudence is important for detecting and correcting the ways in which the citizens of a democratic society, as well as its institutions, may fail to fulfil the mandates of such an essential political virtue. (shrink)

The debate on “safer by design” has primarily been focused on strategies to render products safer during the design process. This article focuses on correlated basic legal rights of citizens. The reference to “trump rights” is helpful in highlighting two normative claims: Firstly, products that are “safer by design” are suitable instruments to protect the bodily integrity and health of potential users. Both figure as trump rights in Ronald Dworkin’s sense. In this perspective, “safer by design” strategies (...) can guarantee some most basic rights of citizens. Secondly, the debate on trump rights also suggests that safety needs to be regarded as part of a more comprehensive normative framework. Even trump rights are competitive in that a plurality of rights needs to be respected. A final section gives evidence that both claims resonate with recent insights in debate on the precautionary principle. This section also highlights the recent emphasis on environmental concerns. (shrink)

Human rights have a rich life in the world around us. Political rhetoric pays tribute to them, or scorns them. Citizens and activists strive for them. The law enshrines them. And they live inside us too. For many of us, human rights form part of how we understand the world and what must (or must not) be done within it. -/- The ubiquity of human rights raises questions for the philosopher. If we want to understand these (...) class='Hi'>rights, where do we look? As a set of moral norms, it is tempting to think they can be grasped strictly from the armchair, say, by appeal to moral intuition. But what, if anything, can that kind of inquiry tell us about the human rights of contemporary politics, law, and civil society — that is, human rights as we ordinarily know them? -/- This volume brings together a distinguished, interdisciplinary group of scholars to address philosophical questions raised by the many facets of human rights: moral, legal, political, and historical. Its original chapters, each accompanied by a critical commentary, explore topics including: the purpose and methods of a philosophical theory of human rights; the "Orthodox-Political" debate; the relevance of history to philosophy; the relationship between human rights morality and law; and the value of political critiques of human rights. (shrink)

Citizen attitudes and opinions form an important driving force for improvements in the ethical status of farm animals in society. Hence, it is important to understand how attitudes to farm animals vary in society and what factors, mechanisms and social processes influence the development of these attitudes. In this study we examine the relative importance of socio-demographic background, animal related experiences and social-equality attitudes in the formation of attitudes to farm animals in Finland. The research is based on a (...) nationwide survey. Our research findings suggest that female gender, young age, urban residency, a non-farming background and social-equality attitudes are linked to greater concern for farm animals. A farming background, valuing social equality, and gender have the strongest connections to farm animal attitudes, followed by age and place of residence. Having a companion animal and education level have a relatively modest connection to attitudes to farm animals. In order to accumulate comparative evidence of social-group differences in attitudes to farm animals, further research should continue to develop improved indicators for attitudes to farm animal welfare and rights. Moreover, explanations for social-group differences in citizen attitudes to farm animals should be subjected to further empirical testing. (shrink)

Debates about the EU show that the holy trinity of absolute, indivisible sovereignty, nationality/citizenship and national identity/loyalty should be replaced by multilayered, pluralist concepts for descriptive, explanatory and normative purposes. Democratic pluralism criticizes replacement‐strategies (of the nation‐state by a European state, citizenship‐rights by human rights, national obligations by European or global ones). It opts for productive complementarity guided by two principles: “proximity and accountability” and “correspondence of powers and democratic say” and for progressive transdomestic shifts. The inclusion of (...) the articles on citizenship in the EC Treaty has, unintendedly, contributed to such a shift though it missed historical chances to develop a more democratic and social EU living up to minimal global obligations. (shrink)

This timely and important book presents a compelling new theory of political education for liberal democracies. Amidst current concern over the need to encourage a morally sensitive and committed citizenry, Professor Callan's study provides a much-needed balanced discussion of the proper ends of education, as well as the moral rights of parents and children.

: This essay examines the citizen's apparent agelessness that is foundational to liberal democratic theories. By engaging the notion of citizenship rights, Lanoix challenges this assumed perpetual adulthood and argues for a new way of conceptualizing the citizen. The broader notion of citizen as cohabitant allows for the changing relationship a citizen will have with her citizenship rights and accommodates individuals who are not self-governing but who, nonetheless, share a democratic space.

This article assesses an assumption pervasive in one strain of arguments in favor of stringent immigration controls. The assumption affirms that—for the case of regular admissions—to a certain extent states are permitted to prioritize the interests of their citizens and residents by issuing exclusionary immigration policies (call this the priority assumption). Using the normative methodology of applied international ethics, I suggest some broad constraints to this priority assumption that have a bearing on justifications for current practical immigration policy in Europe, (...) North America, and beyond. I do so by redefining borders as domestic-international institutions that open up borders not only to (internal) standards of justice but also to standards of international legitimacy. (shrink)

This essay examines the citizen's apparent agelessness that is foundational to liberal democratic theories. By engaging the notion of citizenship rights, Lanoix challenges this assumed perpetual adulthood and argues for a new way of conceptualizing the citizen. The broader notion of citizen as cohabitant allows for the changing relationship a citizen will have with her citizenship rights and accommodates individuals who are not self-governing but who, nonetheless, share a democratic space.