We argue that future database systems must provide autonomy for individuals for the privacy of data they manage. We propose a design for such a system, identify challenges and problems, and suggest some approaches to these. We enunciate the reasons for informational self-determination systems, which include legal, organizational and technical issues. Our main goal is to achieve a widely-accepted realistic and practical solution in order to ensure privacy for individuals in our future world, yet without hindering business and (...) class='Hi'>security. (shrink)

In cloud security, intrusion detection system (IDS) is one of the challenging research areas. In a cloud environment, security incidents such as denial of service, scanning, malware code injection, virus, worm, and password cracking are getting usual. These attacks surely affect the company and may develop a financial loss if not distinguished in time. Therefore, securing the cloud from these types of attack is very much needed. To discover the problem, this paper suggests a novel IDS established on (...) a combination of a leader-based k-means clustering (LKM), optimal fuzzy logic system. Here, at first, the input dataset is grouped into clusters with the use of LKM. Then, cluster data are afforded to the fuzzy logic system (FLS). Here, normal and abnormal data are inquired by the FLS, while FLS training is done by the grey wolf optimization algorithm through maximizing the rules. The clouds simulator and NSL-Knowledge Discovery and DataBase (KDD) Cup 99 dataset are applied to inquire about the suggested method. Precision, recall, and F-measure are conceived as evaluation criteria. The obtained results have denoted the superiority of the suggested method in comparison with other methods. (shrink)

Background The concept of “health security” is often used to motivate public health responses, yet the ethical values that underpin this concept remain largely unexamined. The recent Australian responses to COVID-19 serve as an important case study by which we can analyse the pre-existing literature to see what ethical values shaped, and continue to shape, Australia’s response. Methods We conducted a critical interpretive literature review of academic and grey literatures within key databases, resulting in 2,220 sources. After screening for (...) duplicates and relevance, we analysed ninety-six sources. Results First, risk and uncertainty are a leading focus, with a heavy concentration on risks to life and health. Second, free movement, safety, and security were recurringly emphasized, albeit narrowly focused upon the safety of the population. Third, legitimacy was a recurring theme, and it is here that discussions of “health security” figured highly. Conclusion Discussions of harm from government and associated official bodies fail to adequately distinguish between various senses of harm. Moreover, while the literature often discusses the balancing of rights, the steps involved in the weighing of these rights is rarely adequately explained and defended. We suggest that decision-makers should endeavour to clearly identify and defend the values undergirding their decisions in the public sphere. (shrink)

Relational database management system is the most popular database system. It is important to maintain data security from information leakage and data corruption. RDBMS can be attacked by an outsider or an insider. It is difficult to detect an insider attack because its patterns are constantly changing and evolving. In this paper, we propose an adaptive database intrusion detection system that can be resistant to potential insider misuse using evolutionary reinforcement learning, which combines reinforcement learning and (...) evolutionary learning. The model consists of two neural networks, an evaluation network and an action network. The action network detects the intrusion, and the evaluation network provides feedback to the detection of the action network. Evolutionary learning is effective for dynamic patterns and atypical patterns, and reinforcement learning enables online learning. Experimental results show that the performance for detecting abnormal queries improves as the proposed model learns the intrusion adaptively using Transaction Processing performance Council-E scenario-based virtual query data. The proposed method achieves the highest performance at 94.86%, and we demonstrate the usefulness of the proposed method by performing 5-fold cross-validation. (shrink)

ABSTRACT A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that (...) this demand for informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research. (shrink)

ABSTRACT A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that (...) this demand for informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research. (shrink)

Over the last few years, automatic facial micro-expression analysis has garnered increasing attention from experts across different disciplines because of its potential applications in various fields such as clinical diagnosis, forensic investigation and security systems. Advances in computer algorithms and video acquisition technology have rendered machine analysis of facial micro-expressions possible today. Although the study of facial micro-expressions is a well-established field in psychology, it is still relatively new from the computational perspective with many interesting problems. In this survey, (...) we present a comprehensive review of state-of-the-art databases and methods for micro-expressions spotting and recognition. Individual stages involved in the automation of these tasks are also described and reviewed at length. In addition, we also deliberate on the challenges and future directions in this growing field of automatic facial micro-expression analysis. (shrink)

PurposeThe purpose of this paper is to explicate the influence of US national security approach on the Thai Government's national security, the criticisms on the US and Thai intelligence communities and ethical debates on national databases, including the introduction of the concepts of “spiritual computing” and Buddhism to the ethical aspect of intelligence databases.Design/methodology/approachThe methodology of this paper is based on the interpretative approach which includes literature survey and interviews of the intelligence community in Thailand. The relevant literature (...) survey consists of the literature on US intelligence databases for Homeland Security, criticisms of the IC, the ethical debate on national databases in the USA, the Thai National Security Council, ethical debates on the Internal Security Act and Computer Crime Act, Buddhism and “spiritual computing.”FindingsThe findings reflect that the US model of national security has significant influence on the Thai intelligence approach and application of IT for national security while both intelligence communities have similar intelligence problems and have raised ethical debates on violations of human rights.Research limitations/implicationsThe research limitations include the nature of the topic which is a closed subject under legal restrictions in Thailand so that the sources of official information could not be disclosed nor elaborated in details; and literature on this topic has not been widely available except unclassified information which limits a more in‐depth investigation and analysis.Originality/valueThe value of this paper lies in being the first attempt to throw light on a “forbidden” subject in Thailand by discussing the US experiences against the Thai case study. The application of “spiritual computing” and Buddhist precepts to the context of national security and intelligence databases could be a starting point for developing a “happier” and “successful” IC and possibly open a new approach to national security. (shrink)

Both the European Union and the Council of Europe have a bearing on privacy in genomic databases and biobanking. In terms of legislation, the processing of personal data as it relates to the right to privacy is currently largely regulated in Europe by Directive 95/46/EC, which requires that processing be “fair and lawful” and follow a set of principles, meaning that the data be processed only for stated purposes, be sufficient for the purposes of the processing, be kept only for (...) so long as is necessary to achieve those purposes, and be kept securely and only in an identifiable state for such time as is necessary for the processing. The European privacy regime does not require the de-identification of personal data used in genomic databases or biobanks, and alongside this practice informed consent as well as governance and oversight mechanisms provide for the protection of genomic data. (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)

This research aims to help create a systematic casualty recording database for the civilian casualties of the Russian aggression within Ukraine. It looks at the definitions surrounding casualty recording and human security to help create a baseline for the project. It examines the Register of the Holodomor Victims, the Bosnian Book of the Dead, the Kosovo Memorial Book, and the casualty recording of Iraq Body Count and the Bouderbala Commission, in terms of their recording systems and public databases. (...) The live project is also informed by the work of Action on Armed Violence (AOAV), the United Nations, Children of War, and the Memorial Platform. (shrink)

There is scarce knowledge about the influence of the professional group, education, and age on public perspectives on the risks and benefits of forensic DNA databases. Based on data collected through an online questionnaire applied to 628 individuals in Portugal, this research fills that gap. More than three quarters of the respondents believed that the Portuguese forensic DNA database can help fight crime more efficiently and develop a swifter and more accurate justice, whereas only approximately half thought that it (...) could deter and prevent crime. Lack of security and control over access to data and the future unforeseen misuses of genetic information were the most relevant risks selected by the participants. Health care and life sciences professionals were more likely to agree with all the benefits, as opposed to those working in the field of law enforcement. More educated and older participants disagreed with benefits more often. Concerns with the risks increased with age. (shrink)

Food insecurity, and its extreme form, hunger, occur whenever the accessibility to an adequate supply of nutritional and safe foods becomes restricted or unpredictable. They are recurring problems in certain regions of the US, as well as in many parts of the world. According to nation-wide surveys conducted by the US Bureau of the Census, between 1996 and 1998 an estimated 9.7% of US households were classified as food insecure (6.2% being food insecure without evidence of hunger, and 3.5% being (...) food insecure with moderate to severe hunger). This means that approximately 10 million households each year did not always have access to enough food to meet basic needs. A potential tool in the fight against food insecurity and hunger is information technology (IT), since its use and range of application continue to grow at astonishing rates. The study presented here examined the question of how information technology, particularly the Internet, can be used to promote food security. The study used an action science research approach, and a case study strategy, with the food security system of Oktibbeha County, Mississippi selected as the case for study. The research design was a two-phase process. Phase one consisted of a needs assessment among food assistance organizations in Oktibbeha County, and included interviews of key food assistance personnel. Phase one also included a survey of IT subject matter experts to seek their opinions about the current state of Web-based information technology. Phase two involved an analysis of various IT implementation issues, as well as the development of a Web-based food security information system prototype tool. The needs assessment results indicated that (a) certain food security system and information needs existed among the food assistance organizations in Oktibbeha County, and (b) appropriate information technologies existed that could be applied to these needs. The food security needs related to better communication and coordination of information, such as program information, food site inventory information, client history information, food donation information, and nutrition education information. In regard to technology development, a variety of scenarios were examined. These included client-side approaches, server-side approaches, simple e-mail-based systems, Java-based systems, systems based on the Common Gateway Interface (CGI), and commercial database systems. In applying the needs assessment and survey results, the researcher developed a prototype Web site (including a series of online database tools) that could be used to promote food security in counties such as Oktibbeha County. The results of this research show that appropriate, Internet-based, IT holds promise for the reduction of certain social problems, such as food insecurity and hunger. (shrink)

We examine the relationship between systems and their users from the knowledge discovery perspective. Recently knowledge discovery in databases has made important progress, but it may also bring some potential problems to database design, such as issues related to database security, because an unauthorised user may derive highly sensitive knowledge from unclassified data. In this paper we point out that there is a need for a comprehensive study on knowledge discovery in human-computer symbiosis. Borrowing terms from algorithm (...) design and artificial intelligence literature, we propose a notion called database-user adversarial partnership. We point out that this notion is general enough to cover various knowledge discovery and security of issues related to databases and their users. Furthermore, we point out the notion of database-user adversarial partnership can be further generalised into system-user adversarial partnership. Opportunities provided by knowledge discovery techniques and potential social implications are also discussed. (shrink)

DNA databases have significant commercial value. Direct-to-consumer genetic testing companies have built databanks using samples and information voluntarily provided by customers. As the price of genetic analysis falls, there is growing interest in building such databases by paying individuals for their DNA and personal data. This paper maps the ethical issues associated with private companies paying for DNA. We outline the benefits of building better genomic databases and describe possible concerns about crowding out, undue inducement, exploitation, and commodification. While certain (...) objections deserve more empirical and philosophical investigation, we argue that none currently provide decisive reasons against using financial incentives to secure DNA samples. (shrink)

The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book (...) considers the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media. (shrink)

Digital cultural archives and databases are promising an era of heritage democratization and an enhancement of the role of arts in everyday cultures. It is hoped that mass digitization initiatives in many corners of the world can facilitate the secure preservation of human cultural heritage, with easy access and diverse ways for creative reuse. Understanding the dialogic processes within these increasingly vast databases necessitates a dynamic conceptualization of data they contain. The paper argues that this can be found in Juri (...) Lotman’s cultural semiotic notion of text and text’s functions in culture. It elaborates on the three key characteristics of text – expression, boundary, and structure – as manifested within the digital semiosphere. At the same time, the textual dialogues within digital archives are increasingly conditioned by metadata, which is hereby conceptualized as metalanguage inducing a modeling effect on archived texts and defining their possible sphere of dynamics. To balance the explanations of creative operations of digital archives, the paper also demonstrates their auto-communicative mechanisms for facilitating cultural continuities and stability. (shrink)

SmartData is a research program to develop web-based intelligent agents that will perform two tasks: securely store an individual’s personal and/or proprietary data, and protect the privacy and security of the data by only disclosing it in accordance with instructions authorized by the data subject. The vision consists of a web-based SmartData agent that would serve as an individual’s proxy in cyberspace to protect their personal or proprietary data. The SmartData agent (which ‘houses’ the data and its permitted uses) (...) would be transmitted to, or stored in a database, not the personal data itself. In effect, there would be no personal or proprietary raw data out in the open—it would instead be housed within a SmartData agent, much like we humans carry information in our heads; extending the analogy, it would be the human-like clone that would be transmitted or stored, not the raw data. The binary string representative of a SmartData agent would be located in local or central databases. Organizations requiring access to any of the data resident within the agent would query it once it had been activated. In this paper, we provide a preliminary overview of the SmartData concept, and describe the associated research and development that must be conducted in order to actualize this vision. (shrink)

We are now acutely aware, as if all of the sudden, that data matters enormously to how we live. How did information come to be so integral to what we can do? How did we become people who effortlessly present our lives in social media profiles and who are meticulously recorded in state surveillance dossiers and online marketing databases? What is the story behind data coming to matter so much to who we are? -/- In How We Became Our Data, (...) Colin Koopman excavates early moments of our rapidly accelerating data-tracking technologies and their consequences for how we think of and express our selfhood today. Koopman explores the emergence of mass-scale record keeping systems like birth certificates and social security numbers, as well as new data techniques for categorizing personality traits, measuring intelligence, and even racializing subjects. This all culminates in what Koopman calls the “informational person” and the “informational power” we are now subject to. The recent explosion of digital technologies that are turning us into a series of algorithmic data points is shown to have a deeper and more turbulent past than we commonly think. Blending philosophy, history, political theory, and media theory in conversation with thinkers like Michel Foucault, Jürgen Habermas, and Friedrich Kittler, Koopman presents an illuminating perspective on how we have come to think of our personhood—and how we can resist its erosion. (shrink)

In times of crisis, one of the areas heavily affected has been food, as a direct consequence of the damage caused to family farming and therefore to Food and Nutrition Security (SAN). Climate change, in turn, causes widespread crises, which, due to their impact on humanity, and above all, on SAN, provide complex humanitarian crises, worsening hunger. The military conflict imposes difficulties in access to food and production. This study aimed to critically describe the panorama of climate change and (...) armed conflicts in Africa, relating them to the pandemic of COVID-19 as a factor of aggravating the situation of food insecurity in African countries. A literature review study was carried out in various databases, journals and portals for this purpose, with emphasis on Google Scholar, CAPES and governmental portals. The results point to climate change, as being multicausal, and constitute a risk factor for agriculture and SAN, in African countries, characterized by the destruction of crops and the reduction of food availability. Armed conflicts makes difficult to produce and distribute food, especially for people who’s affected. (shrink)

IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing patients’ (...) and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed, Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests. (shrink)

In 2020, the European Union announced the award of the contract for the biometric part of the new database for border control, the Entry Exit System, to two companies: IDEMIA and Sopra Steria. Both companies had been previously involved in the development of databases for border and migration management. While there has been a growing amount of publicly available documents that show what kind of technologies are being implemented, for how much money, and by whom, there has been limited (...) engagement with digital methods in this field. Moreover, critical border and security scholarship has largely focused on qualitative and ethnographic methods. Building on a data feminist approach, we propose a transdisciplinary methodology that goes beyond binaries of qualitative/quantitative and opacity/transparency, examines power asymmetries and makes the labour of coding visible. Empirically, we build and analyse a dataset of the contracts awarded by two European Union agencies key to its border management policies – the European Agency for Large-Scale Information Systems (eu-LISA) and the European Border and Coast Guard Agency (Frontex). We supplement the digital analysis and visualisation of networks of companies with close reading of tender documents. In so doing, we show how a transdisciplinary methodology can be a device for making datafication ‘intelligible’ at the European Union borders. (shrink)

In this book the authors introduce and study the following notions: Neutrosophic Crisp Points, Neutrosophic Crisp Relations, Neutrosophic Crisp Sets, Neutrosophic Set Generated by (Characteristic Function), alpha-cut Level for Neutrosophic Sets, Neutrosophic Crisp Continuous Function, Neutrosophic Crisp Compact Spaces, Neutrosophic Crisp Nearly Open Sets, Neutrosophic Crisp Ideals, Neutrosophic Crisp Filter, Neutrosophic Crisp Local Functions, Neutrosophic Crisp Sets via Neutrosophic Crisp Ideals, Neutrosophic Crisp L-Openness and Neutrosophic Crisp L-Continuity, Neutrosophic Topological Region, Neutrosophic Closed Set and Neutrosophic Continuous Function, etc. They compute (...) the distances between neutrosophic sets and extend it to Neutrosophic Hesitancy Degree. The authors also generalize the Crisp Topological Space and Intuitionistic Topological Space to the notion of Neutrosophic Crisp Topological Space. At the end, they present applications to Neutrosophic Database, and show a security scheme based on Public Key Infrastructure (PKI) using Neutrosophic Logic Manipulation. The authors utilize neutrosophic sets in order to analyze social networks data conducted through learning activities, and for the Geographical Information Systems (GIS) they employ fundamental concepts and properties of a Neutrosophic Spatial Region. Keywords: Neutrosophic Crisp Points; Neutrosophic Crisp Relations; Neutrosophic Crisp Sets; Neutrosophic Crisp Continuous Function; Neutrosophic Crisp Compact Spaces; Neutrosophic Crisp Nearly Open Sets; Neutrosophic Crisp Ideals; Neutrosophic Crisp Filter; Neutrosophic Crisp Local Functions; Neutrosophic Crisp Sets via Neutrosophic Crisp Ideals; Neutrosophic Crisp L-Openness and Neutrosophic Crisp L-Continuity; Neutrosophic Topological Region; Neutrosophic Closed Set and Neutrosophic Continuous Function; Neutrosophic Hesitancy Degree; Neutrosophic Crisp Topological Space; Neutrosophic Database; Neutrosophic Logic Manipulation; Neutrosophic Spatial Region. (shrink)

In discussions on the ethics of genome collections and biobanks, the main worry about whether we are permitted to collect and use individuals’ genomic and genetic data is the potential for the violation of individuals’ right to informational privacy. Yet, if we do not permit these endeavors, we risk giving up on the future benefits of biomedical research. In this paper, I describe a private venture in blockchain genomics that seeks to provide an apt solution to concerns about potential privacy (...) violations in genome collections and biobanks. I then provide some reasons to doubt the kind of solution to the dilemma that such start-ups propose. I argue that the sort of autonomy that grounds the value of the right to informational privacy cannot be secured with blockchain technology alone. So, blockchain genomics ventures are insufficient to establish the permissibility of genome collections and biobanks. I then discuss an additional ethical challenge to genomic biobanks. This challenge takes the form of doubting that future benefits that result from biomedical research dependent on genomic databases will outweigh the costs. Despite criticisms of genomic research, I claim that it is reasonable to think that future net benefits will be gained from research on such databases. Therefore, I conclude that there remains a dilemma in the ethics of genomic biobanks. (shrink)

We examine enforcement action in China’s emerging markets by focusing on the agents that impose this action and the role played by supervisory boards. Using newly available databases, we find that supervisory boards play an active role when Chinese listed companies face enforcement action. Listed firms with larger supervisory boards are more likely to have more severe sanctions imposed upon them by the China Security Regulatory Commission, and listed companies that face more severe enforcement actions have more supervisory board (...) meetings. Our findings are of interest, as supervisory boards in China are generally perceived to be dysfunctional. This study contributes to the existing literature in three ways. First, we shed light on the effects of supervisory boards whose role in a fraud setting has not yet been examined. Second, the study has important policy implications for governance reform. Finally, our analyses provide the most up-to-date picture of fraud and governance issues in China’s ever-growing markets. (shrink)

Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...) sensors Population biobanks, cohort studies, and genome databases Clinical and public health data Direct-to-consumer genetic testing Social media Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections. Although health research conducted using these collections is broadly recognized as beneficent, secondary uses of these data and samples may be controversial. We examine both documented and hypothetical scenarios of secondary uses of health data and samples. In particular, we focus on the use of health data for purposes of: Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Current safeguards relating to the use of health data and samples include research ethics oversight and privacy laws. These safeguards have a strong focus on informed consent and anonymization, which are aimed at the protection of the individual research subject. They are not intended to address broader societal implications of health data and sample collections. As such, existing arrangements are insufficient to protect against subversion of health databases for non-sanctioned secondary uses, or to provide guidance for reasonable but controversial secondary uses. We are concerned that existing debate in the scholarly literature and beyond has not sufficiently recognized the secondary data uses we outline in this paper. Our main purpose, therefore, is to raise awareness of the potential for unforeseen and unintended consequences, in particular negative consequences, of the increased availability and development of health data collections for research, by providing a comprehensive review of documented and hypothetical non-health research uses of such data. (shrink)

Increasingly, medical records are being stored in computer databases that allow for efficiencies in providing treatment and in the processing of clinical and financial services. Computerization of medical records has also diminished patient privacy and, in particular, has increased the potential for misuse, especially in the form of nonconsensual secondary use of personally identifiable records. Organizations that store and use medical records have had to establish security measures, prompted partially by an inconsistent patchwork of legal standards that vary from (...) state to state. There is widespread appreciation among policy makers regarding the need for legal reform. The Health Information and Portability Accountability Act of 1996 mandated that the Administration develop regulations regarding the control of medical records. The Administration has offered regulations from the Department of Health and Human Services. Survey data reveal what healthcare professionals who have access to sensitive medical records believe are the greatest threats to patients' privacy. The overlap between Administration proposals and the responses of healthcare professionals is striking. (shrink)

Formålet med nærværende oversigtsartikel er at undersøge den stigende digitalisering og deling af personlige informationer i sundhedsvæsenet, samt hvilke etiske udfordringer denne udvikling har for den enkelte borger. Mere præcis vil vi rammesætte denne diskussion i en dansk kontekst eksemplificeret ved Det Fælles Medicinkort. Det Fælles Medicinkort er en obligatorisk database for danske borgere indeholdende informationer om patienters medicinske historie to år tilbage. Denne database kan tilgås af en bred vifte af sundhedsprofessionelle i Danmark.På trods af lovede sundhedsmæssige (...) fordele, såsom en højere grad af sikkerhed i forbindelse med medicinering, en øget effektivisering af sundhedsvæsenet og dermed besparelser på de offentlige budgetter, plæderer vi i artiklen for, at implementeringen af Det Fælles Medicinkort kompromitterer den enkeltes privathed. Den enkelte borger er ikke i tilstrækkelig grad informeret om brugen af Det Fælles Medicinkort. Ydermere finder vi ikke, at borgerens autonomi i forhold til indholdet af personlige oplysninger i Det Fælles Medicinkort er opretholdt på en tilfredsstillende måde.Artiklens primære perspektiv er deontologisk, men for at nuancere vores diskussion inddrages lejlighedsvist også utilitaristiske argumenter. Endvidere inddrages i artiklen Helen Nissenbaum, Tom L. Beauchamp og James F. Childress samt John Rawls. I artiklen vil tre konkrete problemstillinger blive diskuteret i relation til Det Fælles Medicinkort: Deler vi relevante og passende data? Er distributionen af disse data til en så bred vifte af sundhedsprofessionelle på sin plads? Og slutteligt: Er den enkelte borgers beslutningsdygtighed, og dermed mulighed for autonomi i forhold til personrelaterede informationer, tilstrækkelig.Nøgleord: digitalisering, privathed, Danmark, sundhedsvæsen, Det Fælles MedicinkortEnglish summary: The right to privacy in Danish healthcareThe scope of this paper is to assess the growing digitalization of personal information in healthcare and the ethical challenges this development poses to the citizen. Specifically the paper discusses the right to privacy in a Danish context, namely in relation to the use of The Shared Medical Record. The Shared Medical Record is a default digital health record consisting of every patient’s medical history for the previous two years, accessible to a broad range of health professionals in Denmark.In this paper we discuss three aspects of The Shared Medical Record, primarily from a normative point of view: 1) Are the personal data shared by The Shared Medical Record relevant and appropriate? 2) Is the distribution of this information to the current array of health professionals appropriate? And 3) Does The Shared Medical Record adequately support and account for the quorum and autonomy of the individual citizen with regards to personal information?We argue that, advantages such as heightened security, efficiency and convenience aside, the citizens’ right to privacy is to some extent compromised by the terms and use of this record. The citizen is not extensively informed on the use of the record, and does not hold a sufficient degree of autonomy over the content and distribution of their personal data. The primary ethical perspective of the paper is deontological, but in order to properly nuance our stance we have chosen to include traditionally utilitarian points of view throughout our discussions.In the paper we introduce Helen Nissenbaum’s notion of contextual integrity in order to thoroughly assess the service’s ethical implications for Danish citizens and their future privacy, as well as points from John Rawls, Tom L. Beauchamp and James F. Childress. (shrink)

Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members. Sharing patients’ and family members’ data collectively raises an ethical tension between the value of datasets and the (...) rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members’ clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants. Families have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them. (shrink)

In most European countries, the first wave of the COVID-19 pandemic led to the imposition of physical distancing rules, resulting in a drastic and sudden reduction of real-life social interactions. Even people not directly affected by the virus itself were impacted in their physical and/or mental health, as well as in their financial security, by governmental lockdown measures. We investigated whether the combination of these events had changed people's appraisal of social scenes by testing 241 participants recruited mainly in (...) Italy, Austria, and Germany in an online, preregistered study conducted about 50 days after the beginning of the COVID-19 outbreak in Europe. Images depicting individuals alone, in small groups, and in large groups were rated in terms of valence, arousal, and perceived physical distance. Pre-pandemic normative ratings were obtained from a validated database. Several self-report measures were also taken, and condensed into four factors through factor analysis. All images were rated as more arousing compared to the pre-pandemic period, and the greater the decrease in real-life physical interactions reported by participants, the higher the ratings of arousal. As expected, only images depicting large gatherings of people were rated less positively during, compared to before, the pandemic. These ratings of valence were, however, moderated by a factor that included participants' number of days in isolation, relationship closeness, and perceived COVID-19 threat. Higher scores on this factor were associated with more positive ratings of images of individuals alone and in small groups, suggesting an increased appreciation of safer social situations, such as intimate and small-group contacts. The same factor was inversely related to the perceived physical distance between individuals in images of small and large groups, suggesting an impact of lockdown measures and contagion-related worries on the representation of interpersonal space. These findings point to rapid and compelling psychological and social consequences of the lockdown measures imposed during the COVID-19 pandemic on the perception of social groups. Further studies should assess the long-term impact of such events as typical everyday life is restored. (shrink)

Economic and sanitary crises have great repercussions on access to food and the health of the population. In this context, austerity policies can have devastating effects on social rights. The purpose of this essay is to reflect on the impact of various types of crises on the Human Right to Adequate Food and Nutrition (DHANA) and on Food and Nutritional Security (SAN) of vulnerable populations and to identify of public policies, programs and actions developed based on the relief of (...) the damage caused by the COVID-19 pandemic. From the collection of information carried out in a non-systematic way on government websites and scientific databases, documents were read in full, categorized, and critically analyzed. Three different contexts, Africa, Latin America, and Portugal, are presented by the authors who work in these realities, with the intention of contributing to mitigate the food problems that worsen and are derived from the pandemic situation. (shrink)

Since its origins in the mid-1980s, DNA profiling has become the most powerful tool for identification in contemporary society. Practitioners have deployed it to determine parentage, verify claims to identity in various civil contexts, identify bodies in wars and mass disasters, and infer the identity of individuals who have left biological traces at crime scenes. Thus DNA profiling can be used to implicate or exonerate individuals from participation in particular social relations and activities; this affords it a growing importance in (...) major social institutions such as the family, the criminal justice system, immigration services, and health services. There are key state, security, civil liberty, personal, and commercial considerations surrounding the reliability and social implications of DNA profiling in establishing the identities of “family members,” “claimants,” “customers,” “suspects,” and “citizens.”Given that DNA profiling is increasingly influential in forensic inquiries, the recently-developed practice in the UK of “familial searching” of DNA databases has the potential to become a significant aspect of investigations. (shrink)

In a digital communication environment, information security is mandatory. Three essential parameters used in the design process of a steganography algorithm are Payload, security, and fidelity. However, several methods are implemented in information hiding, such as Least Significant Bit (LBS), Discrete Wavelet Transform, Masking, and Discrete Cosine Transform. The paper aims to investigate novel steganography techniques based on agent technology. It proposes a Framework of Steganography based on agent for secret communication using LSB. The most common image steganography (...) databases are explored for training and testing. The methodology in this work is based on the statistical properties of the developed agent software using Matlab. The experiment design is based on six statistical feature measures, including Histogram, Mean, Standard deviation, Entropy, Variance and Energy. For steganography, an Ensemble classifier is used to test two scenarios: embedding a single language message and inserting bilingual messages. ROC Curve represents the evaluation metrics. The result shows that the designed agent-based system with 50% training/testing sample set and 0.2 Payload can pick out the best cover image for the provided hidden message size to avoid visual artifact. (shrink)

It is now a common belief that the truths of our lives are hidden in the databases streamed from our interactions in smart environments. In this current hype of big data, the Internet of Things has been suggested as the idea to embed small sensors and actuators everywhere to unfold the truths beneath the surfaces of everything. However, remaining the technology that promises more than it can provide thus far, more important for the IoT’s actual expansion to various social domains (...) than the actual discovery of hidden truths has been people’s speculations about the unknown problems, such as hidden security issues or lifestyle concerns, beyond the narrow human knowability but assumed to leave their traces in the IoT-collected big data. This paper discuss this speculation as the concealed cognitive labor of IoT users that projects some fictitious values to the big data IoT companies accumulate. By the term pan-kinetics, the systemic operation of smart actuators is analyzed as the process through which fictitious values of data are converted to the real values as these actuators draw some profitable correlations from physical domains of the IoT. Analyzing smart electroencephalogram headsets as the unique IoT devices operating on human brains, it argues how the IoT translates this speculative realism of unknown problems into its big data, which the IoT developers believe to be full of machine-learnable correlations that would lead to the smart solutions of the problems. (shrink)

Malian farmers’ traditional system for managing seed of sorghum, an indigenous crop of vital importance for food security and survival, can be conceptualized as a commons. Although this system maintains a wide range of varieties and helps ensure access to seed, its ability to create and widely disseminate new varieties to meet evolving opportunities and challenges is limited. A network of farmer groups, public breeding programs, and development organizations collaborating in decentralized creation and dissemination of sorghum varieties in Mali (...) is examined regarding (1) how the network developed and what activities it conducts; (2) the resulting varietal diversity, varietal performance and organizational models; and (3) the elements of the traditional seed system that were maintained, strengthened or transformed. A single-case study approach was used that relies on published literature, official catalogues of released varieties and a database of farmer seed-cooperative requests for foundation seed. The functioning of the network and its varietal-, seed-, and organizational- outcomes are documented and the elements of the traditional sorghum seed system that are maintained or strengthened are analyzed. The evolution of the network’s reliance on commoning as a social process and its strengthening of core Seed Commons features are discussed with a view to the network’s contributions to targeted development outcomes and potential replicability. The case demonstrates how creating a framework for collaboration, enabling actors and organizations to take on collective responsibility while maintaining distributed decision-making at local level, opens opportunities for transforming farming- and food-systems towards sustainability and resilience. (shrink)

The rapid development of quantum technologies, such as quantum computing, quantum internet, and quantum sensing, has led to a growing awareness of the ethical issues surrounding these technologies. This literature review aims to analyze the existing research on these ethical issues using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) literature review approach. The literature search was conducted using the following databases: Scopus ArXiv, and IEEE Xplore, and the search terms used were “quantum computing,” “quantum internet,” “quantum sensing,” (...) “quantum technology,” AND “ethics.” Inclusion criteria were: (1) articles that addressed ethical issues related to quantum technologies and (2) articles that were written in English. A total of 14 articles were included in the review. The majority of the articles (64 percent) were published in the last 5 years. The majority of the articles (78 percent) focused on the potential impact of quantum technologies on privacy and security, with a particular emphasis on the potential for quantum computers to break encryption and the subsequent impact on privacy and security. Approximately 50 percent of the articles focused on the accessibility and responsibility dimensions of quantum technologies. This scoping review has demonstrated that there is a growing awareness of the ethical issues surrounding quantum technologies and an increasing number of researchers, policymakers, and industry leaders working to address them. Future research should continue to explore these ethical issues in more depth and develop recommendations for addressing them. (shrink)

The remarkable growth in the application of information and communications technologies indicates a great shift toward a globally integrated society. The urban metropolises are turning into intersections of transit and migration of goods, capital, services, cultures, knowledge and especially people. Moreover the flow of bodies, information and money is changing the rules of what defines national territory, space and identity. Social realities with specific qualities are appearing, implying a new spatial correlation between the local and the global. International airports and (...) within emerging extraterritorial zones have become an important threshold controlling the flow of people in a free market economy. The airport border mutates into an abstract space permeating the physical territory of the airport and beyond. This abstract border space, within which mobile bodies operate, is created by a bureaucratic system of inclusion and exclusion particular to transition states. Transit zones at airports emerge because of a complex set of factors: border crossing as well as increasingly stringent security and safety regulations. The innumerable thresholds within these transit zones are points of congestion governed and increasingly supported by technological systems of identification. Within the transnation state, the movement of bodies is the constant subject of streaming and proceduralization. Increasingly, the conventional system of control based on face-to-face interaction between the controlling and the controlled is being replaced by the algorithmic precision of database logic. The paradigm of pattern matching ensures precise verification of the uniqueness of the body, in turn offering new potentials for permeability and flux. These different orders of legal and economic categorization create manifold sub-territories accessible to select groups of travellers. Nowadays, the airport is a transnation state spatialized through a new order of architecture, a manifestation of technology of abstract procedures of transition, inclusion and exclusion, adopting emergent patterns of socio-spatial mobility in a globalized network. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Basic Resources in Bioethics*Mary Carrington Coutts (bio)OrganizationsKennedy Institute of Ethics Georgetown University Washington, DC 20057 National Reference Center for Bioethics Literature 800-MED-ETHX or 202-687-3885The Hastings Center 255 Elm Road Briarcliff Manor, NY 10510 914-762-8500Society for Health and Human Values 6728 Old McLean Village Drive McLean, VA 22101 703-556-9222NOTE: There are numerous organizations in the United States and abroad that deal with bioethical issues. For a more comprehensive listing of (...) those organizations, see:American Hospital Association. Directory of Biomedical Ethics Organizations. Chicago: American Hospital Association, 1989.National Reference Center for Bioethics Literature. International Directory of Bioethics Organizations edited by Robert Iosco. Washington, DC: Georgetown University, 1986.Encyclopedia and DictionaryDictionary of Medical Ethics. Edited by A.S. Duncan, G.R. Dunstan, and R.B. Welborn. New rev. ed. New York: Crossroad, 1981. [End Page 75]Encyclopedia of Bioethics. Edited by Warren T. Reich. 4 vols. New York: Macmillan-Free Press, 1978; or 1982 reprint in 2 volumes available to members of the Kennedy Institute of Ethics through the membership office, 202-687-8099.Online DatabaseBioethicsline. Produced by the Kennedy Institute of Ethics for the National Library of Medicine. Searchable through the MEDLARS system. Focuses on questions of ethics and public policy in the fields of health care and biomedical research. Searches available upon request to the National Reference Center for Bioethics Literature. For information on securing a personal access code from the National Library of Medicine, call 800-638-8480.BibliographiesBibliography of Bioethics. Edited by LeRoy Walters and Tamar Joy Kahn. Washington, DC: Kennedy Institute of Ethics, Georgetown University. Issued annually since 1975. Corresponds to the BIOETHICSLINE database. Provides references to resources on ethical and public policy issues in medicine and biomedical research. Includes abstracts; arranged by broad subject categories.Ethics in Nursing. Edited by Terry Pence. 2nd ed. New York: National League for Nursing, 1986. An annotated bibliography of nursing ethics. Includes author and subject indexes.Goldstein, Doris M. Bioethics: A Guide to Information Sources. Detroit: Gale Research, 1982. A selected, annotated bibliography to the literature of bioethics.The Hastings Center's Bibliography of Ethics, Biomedicine and Professional Responsibility. Compiled by the staff of the Hastings Center. Frederick, MD: University Publications of America, 1984.Medical Ethics: An Annotated Bibliography. Edited by Mark Siegler, Peter A. Singer and David L. Schiedermayer. Philadelphia: American College of Physicians, 1988.Current Awareness ServicesNOTE: Several journals have sections where they highlight new publications. See, for example, the "In The Literature" section of the Hastings Center Report, or the "Medicolegal Reference Shelf" section of Law, Medicine and Health Care. Other services include:BioLaw. Edited by James F. Childress and Ruth D. Gaare. Frederick, MD: [End Page 76] University Publications of America, 1983 to present. Annual with bimonthly updates. (Previous title: Bioethics Reporter.) A compendium of articles and legal documents on ethical and legal issues in medicine, health care administration and human experimentation. Includes the text of important legal decisions in the Resources section.New Titles in Bioethics. Edited by Luanda Fitch Huttlinger. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. Published monthly 1975-1989; quarterly 1990—present. List of acquisitions by the National Reference Center for Bioethics Literature. Organized by subject categories. Includes ordering information for difficult-to-find items. Annual cumulation available.Scope Notes Series. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. A series of issue briefs including annotated bibliographies on the following popular bioethical topics:No 1. Dangerousness, September 1982, 5 p.No 2. Living Wills and Durable Powers of Attorney: Advance Directive Legislation and Issues, Revised February 1990, 15 p.No 3. Ethics Committees in Hospitals, Revised June 1989, 12 p.No 4. Diagnosis Related Groups and the Prospective Payment System, June 1984, 11 p.No 5. Baby Fae, January 1985, 19 p.No 6. Surrogate Mothers, Revised January 1988, 12 p.No 7. Withholding or Withdrawing Nutrition or Hydration, Revised September 1988, 12 p.No 8. AIDS: Law, Ethics and Public Policy, April 1988, 12 p.No 9. Bioethics Audiovisuals 1982 to Present, September 1988, 12 p.No 10. Ethical Issues in... (shrink)

Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and (...) privacy debates. Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis. Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data. Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data. (shrink)

The Political Economy of Terrorism presents a widely accessible political economy approach to the study of terrorism. It applies economic methodology – theoretical and empirical – combined with political analysis and realities to the study of domestic and transnational terrorism. In so doing, the book provides both a qualitative and quantitative investigation of terrorism in a balanced up-to-date presentation that informs students, policy makers, researchers and the general reader of the current state of knowledge. Included are historical aspects, a discussion (...) of watershed events, the rise of modern-day terrorism, examination of current trends, the dilemma of liberal democracies, evaluation of counterterrorism, analysis of hostage incidents and much more. The new edition expands coverage of every chapter, adds a new chapter on terrorist network structures and organization, accounts for changes in the Department of Homeland Security and the USA Patriot Act and insurance against terrorism. Rational-actor models of terrorist and government behavior and game-theoretic analysis are presented for readers with no prior theoretical training. Where relevant, the authors display graphs using data from International Terrorism: Attributes of Terrorist Events, the Global Terrorism Database, and other public-access data sets. (shrink)

Disputes at the intersection of national security, surveillance, civil liberties, and transparency are nothing new, but they have become a particularly prominent part of public discourse in the years since the attacks on the World Trade Center in September 2001. This is in part due to the dramatic nature of those attacks, in part based on significant legal developments after the attacks (classifying persons as “enemy combatants” outside the scope of traditional Geneva protections, legal memos by White House counsel (...) providing rationale for torture, the USA Patriot Act), and in part because of the rapid development of communications and computing technologies that enable both greater connectivity among people and the greater ability to collect information about those connections. -/- One important way in which these questions intersect is in the controversy surrounding bulk collection of telephone metadata by the U.S. National Security Agency. The bulk metadata program (the “metadata program” or “program”) involved court orders under section 215 of the USA Patriot Act requiring telecommunications companies to provide records about all calls the companies handled and the creation of database that the NSA could search. The program was revealed to the general public in June 2013 as part of the large document leak by Edward Snowden, a former contractor for the NSA. -/- A fair amount has been written about section 215 and the bulk metadata program. Much of the commentary has focused on three discrete issues. First is whether the program is legal; that is, does the program comport with the language of the statute and is it consistent with Fourth Amendment protections against unreasonable searches and seizures? Second is whether the program infringes privacy rights; that is, does bulk metadata collection diminish individual privacy in a way that rises to the level that it infringes persons’ rights to privacy? Third is whether the secrecy of the program is inconsistent with democratic accountability. After all, people in the general public only became aware of the metadata program via the Snowden leaks; absent those leaks, there would have not likely been the sort of political backlash and investigation necessary to provide some kind of accountability. -/- In this chapter I argue that we need to look at these not as discrete questions, but as intersecting ones. The metadata program is not simply a legal problem (though it is one); it is not simply a privacy problem (though it is one); and it is not simply a secrecy problem (though it is one). Instead, the importance of the metadata program is the way in which these problems intersect and reinforce one another. Specifically, I will argue that the intersection of the questions undermines the value of rights, and that this is a deeper and more far-reaching moral problem than each of the component questions. (shrink)

Addressing ESG issues has become a point of interest for investors, shareholders, and governments as a risk management concern, while for firms it has become an emerging part of competitive strategy. In this study, a database from an independent ratings agency is used to examine, longitudinally, how Australian Securities Exchange (ASX) 300 firms are responding to ESG issues. Following institutional theory predictions, ASX300 firms are improving ESG performance over the 2002–2009 timeframe. Furthermore, over this timeframe, performance on the governance (...) dimension improved at a greater rate than environmental or social performance, as predicted. Lastly, high impact industries are predicted to demonstrate overall improved ESG performance relative to medium or low impact industries over the timeframe, but this hypothesis was not confirmed. Results are discussed along with implications and future research directions. (shrink)

Crimes are increasing in our society as a serious worldwide issue. Fast reporting of crimes is a significantly important area in anticrime. This problem is visible in Iraq as people avoid information-sharing due to the lack of trust in the security system despite some contact lines between citizens and police in Iraq. Furthermore, there has been a little empirical study in this field. We proposed a multi-approach for crime reporting and police control to address these issues. First, this study (...) has two goals: investigating the adopted method in reporting crimes to police sectors to identify the gap and, developing a mobile application for crime reporting and keeping it undisclosed and exclusive for crime witnesses to report. The approach utilised 200 participants to develop the proposed app. Results have shown that the proposed system can quickly monitor and track criminals based on a cloud-based online database. In addition, the application user will specify certain details to be sent, such as location, case type and time. Other information will be sent directly by the system following the designed algorithm. (shrink)

An article by Melissa Gymrek and colleagues, published this January in Science, described how the researchers used surname inferences from commercial genealogy databases and Internet searches to deduce the identity of nearly fifty research participants whose supposedly private data were stored in large, publicly available datasets. This news comes just months after the Presidential Commission for the Study of Bioethical Issues published a report that expressed serious concerns about personal privacy and security in whole genome sequencing. The bioethics commission (...) (on which we serve as chair and vice‐chair) highlighted the importance of reconciling the enormous public benefits anticipated from research in this area with the potential risks to individuals’ privacy, and it offered several policy proposals to help balance the potential of scientific progress with privacy and respect for persons. The human subjects research protections laid out in the federal regulations are triggered by the identifiability of data. The participants in the Gymrek et al. study were not “readily identifiable”; however, the data proved far more easily identifiable than expected. With rapidly evolving technology, a precise definition of that notion may be impossible. But if we move the debate from the rhetoric of identifiability to the ethical principles of public beneficence and the centrality of respecting all persons, we find that the real ethical focus must be on promoting generalizable progress while at all times respecting individual privacy. (shrink)

Internal misconduct is a universal problem in prisons and affects the maintenance of social order. Consequently, correctional institutions often develop rehabilitation programs to reduce the likelihood of inmates committing internal offenses and criminal recidivism after release. Therefore, it is necessary to identify the profile of each offender, both for the appropriate indication of a rehabilitation program and the level of internal security to which he must be submitted. In this context, this work aims to discover the most significant characteristics (...) in predicting inmate misconduct from ML methods and the SHAP approach. A database produced in 2004 through the Survey of Inmates in State and Federal Correctional Facilities in the United States of America was used, which provides nationally representative data on prisoners from state and federal facilities. The predictive model based on Random Forest performed the best, thus, we applied the SHAP to it. Overall, the results showed that features related to victimization, type of crime committed, age and age at first arrest, history of association with criminal groups, education, and drug and alcohol use are most relevant in predicting internal misconduct. Thus, it is expected to contribute to the prior classification of an inmate on time, to use programs and practices that aim to improve the lives of offenders, their reintegration into society, and consequently, the reduction of criminal recidivism. (shrink)

Objective:Fear of Cancer Recurrence (FCR), Health Anxiety (HA), worry, and uncertainty in illness are psychological concerns commonly faced by cancer patients. In survivorship research, these similar, yet different constructs are frequently used interchangeably and multiple instruments are used in to measure them. The lack of clear and consistent conceptualization and measurement can lead to diverse or contradictory interpretations. The purpose of this scoping review was to review, compare, and analyze the current conceptualization and measurements used for FCR, HA, worry, and (...) uncertainty in the breast cancer survivorship literature to improve research and practice.Inclusion Criteria:We considered quantitative, qualitative, and mixed methods studies of breast cancer survivors that examined FCR, HA, worry, or uncertainty in illness as a main topic and included a definition or assessment of the constructs.Methods and Analysis:The six-staged framework was used to guide the scoping review process. Searches of PubMed, CINAHL, and PsycINFO databases were conducted. The principle-based qualitative analysis and simultaneous content analysis procedures were employed to synthesize and map the findings.Findings:After duplicate removal, the search revealed 3,299 articles, of which 82 studies met the inclusion criteria. Several critical attributes overlapped the four constructs, for example, all were triggered by internal somatic and external cues. However, several unique attributes were found (e.g., a sense of loss of security in the body is observed only among survivors experiencing FCR). Overall, findings showed that FCR and uncertainty in illness are more likely to be triggered by cancer-specific factors, while worry and HA have more trait-like in terms of characteristics, theoretical features, and correlates. We found that the measures used to assess each construct were on par with their intended constructs. Eighteen approaches were used to measure FCR, 15 for HA, 8 for worry, and 4 for uncertainty.Conclusion:While consensus on the conceptualization and measurement of the four constructs has not yet been reached, this scoping review identifies key similarities and differences to aid in their selection and measurement. Considering the observed overlap between the four studied constructs, further research delineating the unique attributes for each construct is warranted. (shrink)