BackgroundIt has been argued that ethics review committees—e.g., Research Ethics Committees, Institutional Review Boards, etc.— have weaknesses in reviewing big data and artificial intelligence research. For instance, they may, due to the novelty of the area, lack the relevant expertise for judging collective risks and benefits of such research, or they may exempt it from review in instances involving de-identified data.Main bodyFocusing on the example of medical research databases we highlight here ethical issues around de-identified data (...) sharing which motivate the need for review where oversight by ethics committees is weak. Though some argue for ethics committee reform to overcome these weaknesses, it is unclear whether or when that will happen. Hence, we argue that ethical review can be done by data access committees, since they have de facto purview of big data and artificial intelligence projects, relevant technical expertise and governance knowledge, and already take on some functions of ethical review. That said, like ethics committees, they may have functional weaknesses in their review capabilities. To strengthen that function, data access committees must think clearly about the kinds of ethical expertise, both professional and lay, that they draw upon to support their work.ConclusionData access committees can undertake ethical review of medical research databases provided they enhance that review function through professional and lay ethical expertise. (shrink)

Key to precision medicine is the development of expert database projects that gather data, integrate them in the pre-existing database, and publish the product of their processing for others to make use of. Increasingly, it is required that data infrastructure managers and curators pursue and lead research projects on the data so as to learn about new ways data could be used or information that could be potentially generated from them. I call these efforts “data curation-research” (...) and use the case study of COSMIC, the Catalogue of Somatic Mutations in Cancer, to analyze the contextual factors shaping the science of data curation-research. I build on March’s organizational learning categories of exploitation and exploration to place these factors within a theory of organizational change and innovation, and contribute to a richer picture of the social drivers of cancer genomics. (shrink)

Saint Basil the Great wrote one of the most important and widely acknowledged Eucharistic texts in the Eastern Orthodox Church, a liturgical anaphora that bears his name. Before the dawn of the second millennium, this was the main Eucharistic text used in Constantinople and in the territories under its authority. In the modern time of digital media, the liturgical research methods have been improved by using the Thesaurus Linguae Graecae database. The emergence of patristic and liturgical texts in (...) this novel format was able to revolutionise the field of Comparative Liturgics, allowing to very quickly find the possible internal clues, which prove the basilian authorship of the anaphora bearing St. Basil's name. By the quick and accurate computer scanning of a part of the post-Sanctus prayer, a relatively complete picture of the relatedness of vocabulary, the author's theological and ascetical nomenclature, the recurring thought patterns, parallel passages and hapax legomena, rare terms and their frequency, is obtained. CONTRIBUTION: The present article aims to demonstrate that Theology has to be connected to modern research methods because the findings of such an academic approach are helpful for the development of ecumenical and interreligious dialogue, that is so well promoted by HTS Teologiese Studies/Theological Studies. (shrink)

The HRAF databases, eHRAF World Cultures and eHRAF Archaeology, each containing large corpora of curated text subject-indexed at the paragraph-level by anthropologists, were designed to facilitate rapid retrieval of information. The texts describe social and cultural life in past and present societies around the world. As of the spring of 2018, eHRAF contains almost three million indexed “paragraph” units from over 8000 documents describing over 400 societies and archaeological traditions. This chapter first discusses concrete problems of scale resulting from large (...) numbers of complex elements retrieved by any given search. Second, we discuss potential and partial solutions that resolve these problems to advance research, whether based on specific hypotheses, classification or identifying and evaluating embedded patterns of relationships. Third, we discuss new kinds of research possibilities that can be further advanced, have not yet been successfully attempted, or have not even been considered using anthropological data because of scale and complexity of achieving a result. (shrink)

RESUMO O Discourse Diversity Database (3D) é um corpus desenvolvido para a pesquisa em linguística clínica. Ele consiste de amostras de fala oral de três gêneros diferentes: narrativas induzidas por imagens, histórias pessoais e instruções baseadas em imagens. As subdivisões do 3D incluem gravações de falantes de russo de três grupos independentes: pessoas com tumores cerebrais antes e depois da remoção do tumor, pessoas com esquizofrenia e indivíduos neurologicamente saudáveis. O presente artigo é dedicado à descrição do procedimento de (...) coleta de dados, do esquema de anotação e das características específicas de cada subdivisão do corpus. (shrink)

Human genetic research databases cast a new light on the controversial issue of which uses of the human body are morally permissible. More specifically, banking human tissue raises issues relating to the ownership of the samples that the participants have donated, to the ownership of the data that are derived through processing the donated samples, and to the management arrangements that better balance the interest of genetic research with the protection of participants' rights. Winickoff & Winickoff suggest that (...) the charitable-trust model is a superior legal arrangement for biobanking compared with private biobanking. This paper critically assesses Winickoff & Winickoff's claim by highlighting some areas of implementation where such a model could be problematic. The charitable trust is certainly an advantageous arrangement because (1) it favors the separation between control and use of the samples, (2) it provides a procedural mechanism that facilitates the participation donor groups in the biobank management and (3) it mediates the different interests that are affected. On the other hand, the charitable-trust model leaves unresolved several issues--among them the ownership of the sample, the right of withdrawal, access and funding mechanism. I conclude that further theoretical and empirical analysis is required in the area. (shrink)

Using emotional film clips is one of the most popular and effective methods of emotion elicitation. The main goal of the present study was to develop and test the effectiveness of a new and comprehensive set of emotional film excerpts. Fifty film experts were asked to remember specific film scenes that elicited fear, anger, sadness, disgust, amusement, tenderness, as well as emotionally neutral scenes. For each emotion, the 10 most frequently mentioned scenes were selected and cut into film clips. Next, (...) 364 participants viewed the film clips in individual laboratory sessions and rated each film on multiple dimensions. Results showed that the film clips were effective with regard to several criteria such as emotional discreteness, arousal, positive and negative affect. Finally, ranking scores were computed for 24 classification criteria: Subjective arousal, positive and negative affect (derived from the PANAS; Watson & Tellegen, 1988), a positive and a negative affect scores derived from the Differential Emotions Scale (DES; Izard et al., 1974), six emotional discreteness scores (for anger, disgust, sadness, fear, amusement and tenderness), and 15 “mixed feelings” scores assessing the effectiveness of each film excerpt to produce blends of specific emotions. In addition, a number of emotionally neutral film clips were also validated. The database and editing instructions to construct the film clips have been made freely available in a website. (shrink)

While art is omnipresent in human history, the neural mechanisms of how we perceive, value and differentiate art has only begun to be explored. Functional magnetic resonance imaging studies suggested that art acts as secondary reward, involving brain activity in the ventral striatum and prefrontal cortices similar to primary rewards such as food. However, potential similarities or unique characteristics of art-related neuroscience remain elusive, also because of a lack of adequate experimental tools: the available collections of art stimuli often lack (...) standard image definitions and normative ratings. Therefore, we here provide a large set of well-characterized, novel art images for use as visual stimuli in psychological and neuroimaging research. The stimuli were created using a deep learning algorithm that applied different styles of popular paintings on ordinary animal, plant and object images which were drawn from established visual stimuli databases. The novel stimuli represent mundane items with artistic properties with proposed reduced dimensionality and complexity compared to paintings. In total, 2,332 novel stimuli are available open access as “art.pics” database at https://osf.io/BTWNQ/ with standard image characteristics that are comparable to other common visual stimuli material in terms of size, variable color distribution, complexity, intensity and valence, measured by image software analysis and by ratings derived from a human experimental validation study [n = 1,296, age 30.2 ± 8.8 y.o.]. The experimental validation study further showed that the art.pics elicit a broad and significantly different variation in subjective value ratings as well as in recognizability, arousal and valence across different art styles and categories. Researchers are encouraged to study the perception, processing and valuation of art images based on the art.pics database which also enables real reward remuneration of the rated stimuli and a direct comparison to other rewards from e.g., food or money.Key Messages: We provide an open access, validated and large set of novel stimuli of standardized art images including normative rating data to be used for experimental research. Reward remuneration in experimental settings can be easily implemented for the art.pics by e.g., handing out the stimuli to the participants, as done in the presented validation task. Experimental validation showed that the art.pics’ images elicit a broad and significantly different variation in subjective value ratings across different art styles and categories, while size, color and complexity characteristics remained comparable to other visual stimuli databases. (shrink)

Research ethics committees in the UK are under criticism for inconsistency in both process and opinion. As chairmen of a multicentre REC and a local REC, we felt that one possible reason was the lack of convenient, up to date guidance for chairmen, administrators, and members.We recognised that there is no shortage of material for REC members to read but it is time consuming to access and difficult to apply to questions raised by review of research projects. International (...) bodies have produced guidance; political organisations and governments have laid down …. (shrink)

This paper reports on a recent symposium seminar series entitled ‘Governing genetic databases – collection, storage and use’ hosted by the Ethox Centre at the University of Oxford. It outlines the inadequacy of the current UK framework for governing genetic databases and biobanks and some of the implications of this. It then briefly describes and reflects on each of the five symposium papers.

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 short article is based on my special lecture entitled "Aristotle and the Philosophy of Education" at Tamagawa University Research Institute in Tokyo on September 19, 2015, through a recording of the spoken language transcribed in written form with some corrections. The lecture delivered on that day consists of two parts: referring to historical research and a statistical survey, the first half focuses on uncovering the fact that the philosophy of education has been slighted both in Japanese and (...) Western academia and that this fact is valid for both Aristotle's and contemporary studies on the philosophy of education; the second half endeavors to describe two possible research projects - namely, a classical-philosophical and interpretative study of Aristotle's philosophy of education and a contemporary-philosophical and Aristotelian study of the philosophy education. Some of these topics have been published but others have not. This short article concerns the first half of the lecture and measures the gap between philosophy and the philosophy of education in Japan through a statistical survey of the largest competitive research funding database in Japan: KAKEN. (shrink)

Although the widespread use of the term “Big Data” is comparatively recent, it invokes a phenomenon in the developments of database technology with distinct historical contexts. The database engineer Jim Gray, known as “Mr. Database” in Silicon Valley before his disappearance at sea in 2007, was involved in many of the crucial developments since the 1970s that constitute the foundation of exceedingly large and distributed databases. Jim Gray was involved in the development of relational database systems (...) based on the concepts of Edgar F. Codd at IBM in the 1970s before he went on to develop principles of Transaction Processing that enable the parallel and highly distributed performance of databases today. He was also involved in creating forums for discourse between academia and industry, which influenced industry performance standards as well as database research agendas. As a co-founder of the San Francisco branch of Microsoft Research, Gray increasingly turned toward scientific applications of database technologies, e. g. leading the TerraServer project, an online database of satellite images. Inspired by Vannevar Bush’s idea of the memex, Gray laid out his vision of a Personal Memex as well as a World Memex, eventually postulating a new era of data-based scientific discovery termed “Fourth Paradigm Science”. This article gives an overview of Gray’s contributions to the development of database technology as well as his research agendas and shows that central notions of Big Data have been occupying database engineers for much longer than the actual term has been in use. (shrink)

Although the widespread use of the term “Big Data” is comparatively recent, it invokes a phenomenon in the developments of database technology with distinct historical contexts. The database engineer Jim Gray, known as “Mr. Database” in Silicon Valley before his disappearance at sea in 2007, was involved in many of the crucial developments since the 1970s that constitute the foundation of exceedingly large and distributed databases. Jim Gray was involved in the development of relational database systems (...) based on the concepts of Edgar F. Codd at IBM in the 1970s before he went on to develop principles of Transaction Processing that enable the parallel and highly distributed performance of databases today. He was also involved in creating forums for discourse between academia and industry, which influenced industry performance standards as well as database research agendas. As a co-founder of the San Francisco branch of Microsoft Research, Gray increasingly turned toward scientific applications of database technologies, e. g. leading the TerraServer project, an online database of satellite images. Inspired by Vannevar Bush’s idea of the memex, Gray laid out his vision of a Personal Memex as well as a World Memex, eventually postulating a new era of data-based scientific discovery termed “Fourth Paradigm Science”. This article gives an overview of Gray’s contributions to the development of database technology as well as his research agendas and shows that central notions of Big Data have been occupying database engineers for much longer than the actual term has been in use. (shrink)

While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been la...

A research forum published in Business & Society in 1995 (Issue 2) analyzed whether Fortune magazine's annual Reputation Survey (FRS) is viable as a corporate social performance (CSP) research database. We examine plausible alternative interpretations for a number of assertions and conclusions by the forum authors, including the premise for Brown and Perry's proposed transformation: that the Fortune data are confounded by the presence of a financial "halo," which biases ratings of nonfinancial attributes. Finally, we examine the (...) appropriate roles of the two primary corporate rating systems in the context of CSP. (shrink)

This study presents a description of an open database on scientific output of Vietnamese researchers in social sciences and humanities, one that corrects for the shortcomings in current research publication databases such as data duplication, slow update, and a substantial cost of doing science. Here, using scientists’ self-reports, open online sources and cross-checking with Scopus database, we introduce a manual system and its semi-automated version of the database on the profiles of 657 Vietnamese researchers in social (...) sciences and humanities who have published in Scopus-indexed journals from 2008 to 2018. The final system also records 973 foreign co-authors, 1,289 papers, and 789 affiliations. The data collection method, highly applicable for other sources, could be replicated in other developing countries while its content be used in cross-section, multivariate, and network data analyses. The open database is expected to help Vietnam revamp its research capacity and meet the public demand for greater transparency in science management. (shrink)

Elger splendidly describes the evolving global responses---both creative and misguided---to the ethical challenges arising in research using genetic databases and offers thoughtful suggestions for balancing the interests of science and `donors'. As insightful as it is comprehensive, this book is essential reading not only for bioethicists but for anyone who uses, oversees, or simply wants to understand biobanks, which are playing an increasingly essential role in biomedical and epidemiological research. Alexander M. Capron, University of Southern California, USA --.

Introduction. According to the well-established opinion of specialists in social sciences and humanities, a person diffracts his selves in the modern world: real spaces (professions, statuses) and virtual (accounts, profiles). In the diffraction of a person through spaces of different order, each “new” self acquires relative autonomy (a trace of the self in the network, which is present regardless of the attitude to it), and at the same time there remains the connection that, as it were, keeps the self with (...) his digital images and “prints”. The main questions of the article are: in what relation and in relation to what is it possible to talk about the identity of a modern person; what fundamentally significant do the researches on human identity give us today; what do those who ask questions about personal identity in the digital age focus their attention on? In order to answer these questions, let us turn to scientific articles from domestic and foreign journals. This article presents the analytics of publications from Scopus and RSCI databases, in which the problem of personal identity is posed. The purpose of the article is to analyze scientific publications on human identity and summarize the main ideas presented in those publications. Methods. The research is based on general scientific methods, analysis and synthesis, induction, deduction, and abstraction. The author analyzes scientific publications on the basis of the interpretation method and a systematic approach method. Content analysis was used as a method, but it was used within the scope of the purpose. The publications were selected on the basis of the authors’ research of various aspects of identity and the difference in interpreting the phenomenon. Results. Analysis of Scopus publications made it possible to assert that the problem of identity is moving out of the anthropological context and acquiring new technical and technological frameworks (for example, scholars are raising the problem of the digital data identity, digital identification in the context of online transactions). At the same time, the anthropological view of identity remains. It is found for instance in the context of narratives, texts of a person about self that are posted on the Internet. In this context, the concept of “Person Life View” (M. Schechtman) is presented as a variant of a person’s holistic view of the self. The analysis of domestic publications makes it possible to conclude that representatives of social sciences and humanities in their research strive to overcome the dynamic view of a person (dissolving of identity or an absent self), are in search of models of “stability” of identity. Conclusion. Posing the question about the personal identity of a modern person, it seems that the border between the directly human (consciousness and body, for example) and the technical and technological (the Internet and the objective world) is becoming more and more destabilized every day. This predetermines the direction of the research. Contemporary scholars, who publish the results of their work in journals included in scientific databases, are faced not only with the problem of substantiating human identity as a theoretical concept that reflects the modern situation, but also with the problem of finding models in which a person is able to embody the idea of “stability” of identity in the everyday life. (shrink)

Introduction: This article discusses ethical, legal and social issues raised by the collection, storage and use of DNA in forensic databases. Review: The largest and most inclusive forensic database in the world, the UK National DNA database, leads the worldwide trend towards greater inclusivity. The performance of the NDNAD, criteria for inclusion, legislative framework and plans for integrating forensic databases across Europe are discussed. Comparisons are drawn with UK biobank that has started collecting DNA samples linked to medical (...) records and, unlike the NDNAD, requires informed consent from volunteers, allows withdrawal of samples and only includes adults. The potential uses of research into genes associated with violent and ‘antisocial’ behaviour are discussed in the context of an increasing degree of surveillance in the UK. Conclusion: It should not be assumed that the benefits of forensic databases will necessarily override the social and ethical costs, regardless of changes to the criteria for inclusion or the permitted uses of samples and profiles. The expansion of forensic databases raises issues of relevance to the medical profession. (shrink)

In ‘Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases’ (Dupras and Bunnik 2021), we argued against the assessment of privacy risks and protection requirements base...

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Database of Classical Bibliography ed. by Dee. L. ClaymanGerald A. PressDee. L. Clayman, editor. The Database of Classical Bibliography. CD-ROM and manual. Atlanta: Scholars Press, 1997. Pp. xvi + 120. $85 (individual); $340-2400 (institutional).L ’Annee Philologique (APh) has long been one of the most important scholarly resources for students of the history of ancient philosophy. Even though in print form it contains errors and omissions, (...) has become of unwieldy size, and does not appear promptly enough for up-to-date research, there is no other single source of such international comprehensiveness. It is far more inclusive in many respects than The Philosopher’s Index.The Database of Classical Bibliography (DCB) is a long-term project sponsored by the N.E.H., the American Philological Association and others to make the full contents of APh accessible from a CD-ROM either from individual PCs or on a local network. Unlike the Thesaurus Linguae Graecae, the DCB CD-ROM comes with its own search software (DCB CompLex) on the disk. This software is set up both for IBM and MAC machines, installs quickly, and operates extremely well. The manual gives clear instructions both for general use and for detailed search strategies. CompLex enables the user to search DCD in many different ways; e.g., by ancient or modern authors and works, by titles, publisher, place of publication, year of publication, journal, modern language, or series name, as well as by APh volumes, years, page numbers, rubrics, and topics. It can also search by any word in a modern language (i.e., in Roman characters) or for words in a Greek index. And CompLex enables one to perform more complex searches utilizing wildcards and Boolean operators in a user-friendly form.DCB Version 2, containing Volumes 45–60 (1974–1989), fulfills the editor’s initial commitment to make a new release available each year with the addition of three to five years, since it includes four years of APh (1973–74 and 1988–89) not on Version 1. Also new in Version 2 is a French interface and manual.DCB has faults, however. It repeats mistakes that appeared in the print version of APh and contains other mistakes that did not originate in APh. Many were noted in reviews of Version 1, but this should not be surprising in a work of such magnitude as either APh or DCB. What is perhaps disturbing is that errors noted in Version 1 have not been corrected in Version 2, though it would not seem difficult to make use of the information provided by careful reviewers.Nevertheless, DCB is a terrific scholarly tool. No college or university library should be without it. [End Page 619]Gerald A. PressHunter CollegeCopyright © 1998 Journal of the History of Philosophy, Inc... (shrink)

Dupras and Bunnik’s strong statement against the normative approach of genetic exceptionalism, which can no longer be justified in the midst of multi-omic research, is of great importance fo...

A feature of the agro-industrial sphere is the high probability of distribution of production or research sites in areas far from each other for a considerable distance. Moreover, the center for collecting information and processing it, as a rule, is concentrated in one compact place. For research institutions, this feature often acquires a state of rather urgent problem, which requires the search for new innovative approaches. The paper proposes elements of the concept of construction and technological solutions for (...) methods of operational data transfer of field research from agricultural areas to a remote database for data storage with the possibility of feedback. As an example, the procedure of qualification examination of plant varieties with the definition of the criteria of "difference, homogeneity and stability" and "suitability for propagation of the variety in Ukraine" was chosen. (shrink)

A feature of the agro-industrial sphere is the high probability of distribution of production or research sites in areas far from each other for a considerable distance. Moreover, the center for collecting information and processing it, as a rule, is concentrated in one compact place. For research institutions, this feature often acquires a state of rather urgent problem, which requires the search for new innovative approaches. The paper proposes elements of the concept of construction and technological solutions for (...) methods of operational data transfer of field research from agricultural areas to a remote database for data storage with the possibility of feedback. As an example, the procedure of qualification examination of plant varieties with the definition of the criteria of "difference, homogeneity and stability" and "suitability for propagation of the variety in Ukraine" was chosen. (shrink)

Cet article présente le travail de constitution du Corpus International Écologique de la Langue Française (CIEL-F) et ses caractéristiques. Conçu pour mettre à disposition des corpus de données interactionnelles récoltées dans des contextes ordinaires, professionnels et institutionnels authentiques, et afin de promouvoir la recherche comparée sur le français parlé, le corpus CIEL-F comporte des enregistrements effectués en Algérie, Antilles françaises, Belgique, Burkina Faso, Cameroun, Canada, Congo, Côte d’Ivoire, Egypte, France, Inde, La Réunion, Maurice, Sénégal, Suisse et Togo. Dans la première (...) partie, l’article présente les défis et les enjeux de ce type de corpus. Dans la deuxième partie, l’article offre un exemple d’exploitation de ces données, en se penchant sur différents usages de là, allant de l’emploi déictique locatif à des emplois qui relèvent davantage de la particule discursive grammaticalisée. L’analyse propose quelques remarques sur la distribution de ces emplois de là dans différentes aires communicatives et des réflexions sur les possibilités ouvertes par une approche comparative au sein du français parlé dans le monde. (shrink)

Scientometrics has found many applications in describing, explaining and predicting the scientific status of researchers, educational and research groups, universities, organizations and countries in various national and international arenas. By studying the scientific products of different countries, their status in the production of science can be evaluated. Present study was conducted using a scientometrics approach and using co-word analysis and social network analysis (SNA) to investigate relationships in the field of know­ledge organization. In this regard, research indexed in (...) web of science on the topic of “know­ledge organization” has been analyzed using software including VOSviewer, Gephi, Publish or Perish. The findings of the study show that the most frequently used topics and words are know­ledge organization and classification. Also, the most valuable subject areas were identified based on the maps drawn using the closeness and centrality of indexes, taxonomy, ontology and know­ledge organization systems. Co-authorship analysis revealed that the co-authorship network is discrete and has low-density, with a total of 12,491 citations in all articles. Also, the most prolific author is Hjorland, followed by Smiraglia and Dahlberg. using the co-word map of know­ledge organization, policymakers can plan appropriately through the know­ledge of the research and thematic status of know­ledge organization. (shrink)

Many research fields concerned with the processing of information contained in human faces would benefit from face stimulus sets in which specific facial characteristics are systematically varied while other important picture characteristics are kept constant. Specifically, a face database in which displayed expressions, gaze direction, and head orientation are parametrically varied in a complete factorial design would be highly useful in many research domains. Furthermore, these stimuli should be standardised in several important, technical aspects. The present article (...) presents the freely available Radboud Faces Database offering such a stimulus set, containing both Caucasian adult and children images. This face database is described both procedurally and in terms of content, and a validation study concerning its most important characteristics is presented. In the validation study, all frontal images were rated with respect to the shown facial expression, intensity of expression, clarity of expression, genuineness of expression, attractiveness, and valence. The results show very high recognition of the intended facial expressions. (shrink)

For a conference at my college I was asked to think about how my teaching —not my research— would be affected by rapid, cheap, and simple access by computer to all the published literature of the human race. Forget what impediments stand in the way of this hypothetical future and imagine that your campus has the means for you and your students to locate, search, sort, copy, and store anything in digital form that has ever been in print. How (...) would you answer? (shrink)

ABSTRACTFilm clips are widely used in emotion research due to their relatively high ecological validity. Although researchers have established various film clip sets for different cultures, the few that exist related to Chinese culture do not adequately address positive emotions. The main purposes of the present study were to establish a standardised database of Chinese emotional film clips that could elicit more categories of reported positive emotions compared to the existing databases and to expand the available film clips (...) that can be used as neutral materials. Two experiments were conducted to construct the database. In experiment 1, 111 film clips were selected from more than one thousand Chinese movies for preliminary screening. After 315 participants viewed and evaluated these film clips, 39 excerpts were selected for further validation. In experiment 2, 147 participants watched and rated these 39 film clips, as well as another 8 excerpts chosen from the existing databases, to compare their validit... (shrink)

Brain in a vat scenarios in analytic philosophy feature both brains and technological apparatus. The relation between specimens and technology is an interesting aspect of these scenarios, and in order to explore this relation, I contrast here two kinds of scientific collecting practices: the collection of post-mortem brains versus the compilation of digital brain atlases. This contrast highlights a novel configuration of the relation between brains and new information technologies. This new configuration is traced back to the late 1980s, which (...) saw the rise of a new kind of collection of brains, with a markedly different scope and nature: the neuroscience database. Brains are now easily captured in vivo, so that while post-mortem brains were precious and few, scanners provide an embarrassment of riches in the form of terabytes of data. The rise of the virtual brain as a new digital object for research is reliant on the development of new imaging technologies, but also on the growth of computerised tools, informatics, and electronic networks in this field. These developments contribute to an informational turn in scientific research. This article considers what is involved in the shift in type of object, from the scarce, wet, biological brain to a plentiful, digital, virtual one. It discusses the significance of this new object in terms of collections, institutions, and research practices. (shrink)

ABSTRACT Discourse Diversity Database (3D) is a corpus designed for clinical linguistics research. It consists of oral speech samples of three different genres: picture-elicited narratives, personal stories, and picture-based instructions. The sub-sections of 3D include recordings by Russian speakers from three independent groups: people with brain tumors before and after tumor removal, people with schizophrenia, and neurologically healthy individuals. This article is devoted to the description of the data collection, the annotation scheme, and the specific characteristics of each (...) sub-section of the corpus. (shrink)

In 2016, the National Book Council, the ISBN agency for Malta, released its ISBN database online. A few months later, the ISBN database was enhanced with an open-data feature that enables users to download the search results in a single file with read and write access. The database includes all the ISBN data of Malta except for some records and data that were lost during the period before 2013 when paper data storage of ISBN records was the (...) common practice. The implementation of an ISBN electronic database now ensures that no data go missing and facilitates the preservation of metadata. As added value, the open-data system provides access to all of the ISBN records as listed in the database, which means that virtually all of the ISBN data elements can be downloaded from the database. Researchers, publishers, authors, and booksellers all stand to benefit from this open ISBN data system. (shrink)

This original web-based database was developed at the University of Lausanne as part of the international research project “Drawings of gods”, which explores children's representations of supernatural agents. Its primary purpose is to store and organize data and metadata to be easily accessible to all affiliated researchers. However, anyone interested in the matter can view the drawings, as they were made publicly available. At present, our corpus is composed of over 5'100 drawings collected in different parts of the (...) world and yet constantly developing. (shrink)

The academic databases such as Scopus or Web of Science are commonly used to measure performance of universities, departments, and even single researchers. However, to what extent such databases can represent real outcomes of aforementioned units especially in the field of art and humanities where local languages and cultural phenomena play an important role is not clear. This article focuses on understanding how research in this field, as seen through the case of aesthetics in non-English speaking countries, Finland in (...) particular, is represented through major academic databases. This question is tackled by applying a data mining approach. First, we identify major academic databases, and afterwards test what is the proportion of Finnish aesthetics presented in those databases. Our approach allows us to critically look into representation of local art or humanities related research in general academic databases, and understand to what extent we can trust those sources in representing real pictures of the field. Results strengthen the well-known fact that most common academic databases draw a rather poor picture. In more particular this article shows that there are certain factors that influence analysis of the field: spread data, multilingual content, non-standard categorization, variability of venues, different publishing patterns, and unsuitable impact metrics. However, our results propose that alternative databases can be formed from university or meta-data databases. We also provide further directions for designing of such databases. (shrink)

How a senior researcher from a developing country can build an organic academic enterprise. Drawing from childhood experience with nature, past works with the business sector, and philosophy of data-driven research, the essay presents a compelling case of letting young graduates work on big database-building projects: one on Vietnamese social sciences; the other is more than 80 years of the pioneer science in Vietnam—mathematics. Two national databases have enabled meaningful data-driven interactions with scientific policymakers.

Since the inception of the Human Genome Project, human genetics has frequently been conducted through big science projects, combining academic, state and industrial methods, interests and resources. The legitimacy of such projects has been linked to national prestige and images of the nation, the purity of scientific endeavour, the entrepreneurial spirit, medical progress and the public health. A key complication in these discourses is that large-scale genetic research has yet to show major results when considered in terms of the (...) objectives used to legitimate investment and social support for these projects. The main area showing promise at present is the developing field of pharmacogenetics, which is now attracting major industry and government investment. Sociological, ethical and philosophical study of human genetic sample-based research and pharmacogenetics has developed in parallel with inquiry in the biological and biomedical sciences. This paper introduces a symposium on the ethical and social aspects of this field of biomedical research. (shrink)

Genetic database initiatives have given rise to considerable debate about their potential harms and benefits. The question arises as to whether existing ethical frameworks are sufficient to mediate between the competing interests at stake. One approach is to strengthen mechanisms for obtaining informed consent and for protecting confidentiality. However, there is increasing interest in other ethical frameworks, involving solidarity — participation in research for the common good — and the sharing of the benefits of research.

This paper develops three arguments for increasing the strength of database protection under U.S. law. First, stronger protections would encourage private investment in database development, and private databases have many potential benefits for science and industry. Second, stronger protections would discourage extensive use of private licenses to protect databases and would allow for greater public control over database laws and policies. Third, stronger database protections in the U.S. would harmonize U.S. and E.U. laws and would thus (...) enhance international trade, commerce, and research. The U.S. should therefore follow the European example and develop two tiers of protection for databases: 1) protection for creative databases under copyright law; 2) protection for non-creative databases through a special type of sui generis protection. In order to balance private control of data and public access to data, sui generis protections should define a “fair use” exemption that permits some unauthorized extraction of data for private, educational, and research purposes, provided that such extraction does not adversely impact the economic value of the database. (shrink)

Since the inception of the Human Genome Project, human genetics has frequently been conducted through big science projects, combining academic, state and industrial methods, interests and resources. The legitimacy of such projects has been linked to national prestige and images of the nation, the purity of scientific endeavour, the entrepreneurial spirit, medical progress and the public health. A key complication in these discourses is that large-scale genetic research has yet to show major results when considered in terms of the (...) objectives used to legitimate investment and social support for these projects. The main area showing promise at present is the developing field of pharmacogenetics, which is now attracting major industry and government investment. Sociological, ethical and philosophical study of human genetic sample-based research and pharmacogenetics has developed in parallel with inquiry in the biological and biomedical sciences. This paper introduces a symposium on the ethical and social aspects of this field of biomedical research. (shrink)

Conducting research during or in the aftermath of disasters poses many specific practical and ethical challenges. This is particularly the case with research involving human subjects. The extraordinary circumstances of research conducted in disaster settings require appropriate regulations to ensure the protection of human participants. The goal of this study is to systematically and qualitatively review the existing ethical guidelines for disaster research by using the constant comparative method. We performed a systematic qualitative review of disaster (...) research ethics guidelines to collect and compare existing regulations. Guidelines were identified by a three-tiered search strategy: 1) searching databases, 2) an Internet search, and 3) a search of the references in the included documents from the first two searches. We used the constant comparative method for analysis of included guidelines. Fourteen full text guidelines were included for analysis. The included guidelines covered the period 2000-2014. Qualitative analysis of the included guidelines revealed two core themes: vulnerability and research ethics committee review. Within each of the two core themes, various categories and subcategories were identified. Some concepts and terms identified in analyzed guidelines are used in an inconsistent manner and applied in different contexts. Conceptual clarity is needed in this area as well as empirical evidence to support the statements and requirements included in analyzed guidelines. (shrink)