Abstract «The voluntary consent of the human subject is absolutely necessary». The first sentence of the Nuremberg Code still builds the fundamental bulwark of the Ethics of Biomedical Research. Nonetheless, later declarations, codes and guidelines have deepened and widened this imperative of respect for autonomy and self-determination, either pointing at the conditions required for an actually free and informed consent or linking it to the more comprehensive scope of human rights. This short paper explores these concepts.
{"title":"Bioethical Guidelines: A \"Global\" Overview","authors":"S. Semplici","doi":"10.1515/1941-6008.1175","DOIUrl":"https://doi.org/10.1515/1941-6008.1175","url":null,"abstract":"Abstract «The voluntary consent of the human subject is absolutely necessary». The first sentence of the Nuremberg Code still builds the fundamental bulwark of the Ethics of Biomedical Research. Nonetheless, later declarations, codes and guidelines have deepened and widened this imperative of respect for autonomy and self-determination, either pointing at the conditions required for an actually free and informed consent or linking it to the more comprehensive scope of human rights. This short paper explores these concepts.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"6 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2012-01-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1175","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804892","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract The involvement of the public in the governance of genomics has become a topic of growing interest among scholars, practitioners and policy-makers. The implementation of public involvement programmes may be expensive, and the design and evaluation of public participation is a matter of controversy. Thus, this paper examines the justifications for public participation in the governance of genomics to help understand whether public involvement is worthwhile and to provide a guide to the design of public participation.I identify four primary justifications in support of public involvement. I argue that three of them have serious flaws: neither an increase in the stability of institutions, nor the positive effects on individual virtues, nor the epistemic merits of participatory activities provide a solid ground for the engagement of the public in the governance of genomics. However, the ideal of legitimacy in the exercise of coercive power appears to lend strong support to public involvement programmes. Given that the reasons why public involvement is sought shape the design of the participatory activities, restricting the range of valid justifications promises to simplify the task of designing and evaluating public involvement.
{"title":"Genomics and Public Involvement: Giving Justifications Their Due","authors":"G. Badano","doi":"10.1515/1941-6008.1176","DOIUrl":"https://doi.org/10.1515/1941-6008.1176","url":null,"abstract":"Abstract The involvement of the public in the governance of genomics has become a topic of growing interest among scholars, practitioners and policy-makers. The implementation of public involvement programmes may be expensive, and the design and evaluation of public participation is a matter of controversy. Thus, this paper examines the justifications for public participation in the governance of genomics to help understand whether public involvement is worthwhile and to provide a guide to the design of public participation.I identify four primary justifications in support of public involvement. I argue that three of them have serious flaws: neither an increase in the stability of institutions, nor the positive effects on individual virtues, nor the epistemic merits of participatory activities provide a solid ground for the engagement of the public in the governance of genomics. However, the ideal of legitimacy in the exercise of coercive power appears to lend strong support to public involvement programmes. Given that the reasons why public involvement is sought shape the design of the participatory activities, restricting the range of valid justifications promises to simplify the task of designing and evaluating public involvement.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"6 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2012-01-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1176","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804897","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract Large-scale biobanking, or what Camben-Thomsen (2003) calls – ‘Biobank-omics’, has become a marked trend within the biomedical field. Biobanks have achieved great popularity within epidemiological studies, due to their temporal framework, which is longitudinal and prospective in nature. The purpose of this is to examine gene-disease correlations with the environment, through the inspection of medical and lifestyle information with biological data. However, the inclusion of children within epidemiological studies has raised, Ethical, Legal and Social Issues (ELSI), particularly concerning their competency to consent to participation. This article explores such issues when viewed from the perspective of children, whilst drawing attention to the social constructiveness of concepts central to the child’s decisional power.
{"title":"Children and Biobanks: A Case for Reflexivity","authors":"M. Tonna","doi":"10.1515/1941-6008.1179","DOIUrl":"https://doi.org/10.1515/1941-6008.1179","url":null,"abstract":"Abstract Large-scale biobanking, or what Camben-Thomsen (2003) calls – ‘Biobank-omics’, has become a marked trend within the biomedical field. Biobanks have achieved great popularity within epidemiological studies, due to their temporal framework, which is longitudinal and prospective in nature. The purpose of this is to examine gene-disease correlations with the environment, through the inspection of medical and lifestyle information with biological data. However, the inclusion of children within epidemiological studies has raised, Ethical, Legal and Social Issues (ELSI), particularly concerning their competency to consent to participation. This article explores such issues when viewed from the perspective of children, whilst drawing attention to the social constructiveness of concepts central to the child’s decisional power.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"6 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2011-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1179","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804951","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The closely related debates concerning abortion, the protection of the embryo and stem cell science have captured the legislative agenda in Mexico in recent years. This paper examines some contemporary debates related to stem cell science and the legal and political action that has followed in the wake of the latest Supreme Court judgment on abortion, which debates are directly linked to the degrees of protection of the embryo stipulated in the Mexican Constitution. While some Mexican states have opted to take no further action, others, where conservative political forces are in the majority, have been very active in seeking to ensure that their constitutions are amended to protect human life from conception onwards. This intense legislative activity has not, however, been repeated at the federal level, where there is currently no overarching national regulatory framework governing stem cell research. Although major efforts have been made by the conservative block within the Senate to bring forward legislative proposals for the prohibition of human embryonic stem cell research, and despite the public expression by the federal government of its commitment to encourage inward investment and innovation in the area of biotechnology, stem cell science has, so far, remained unregulated. The legislative challenge is to resist the pressure that has been injected by religious leaders and to act in accordance with the values and principles adopted by the community in the Mexican Constitution. In the final analysis, Mexico faces particular difficulties in accommodating conservative political forces on one hand, while recognising on the other its need, as an emerging economy, to promote a progressive approach to innovation in biotechnology.
{"title":"Stem Cell Regulation in Mexico: Current Debates and Future Challenges","authors":"María de Jesús Medina-Arellano","doi":"10.2202/1941-6008.1142","DOIUrl":"https://doi.org/10.2202/1941-6008.1142","url":null,"abstract":"The closely related debates concerning abortion, the protection of the embryo and stem cell science have captured the legislative agenda in Mexico in recent years. This paper examines some contemporary debates related to stem cell science and the legal and political action that has followed in the wake of the latest Supreme Court judgment on abortion, which debates are directly linked to the degrees of protection of the embryo stipulated in the Mexican Constitution. While some Mexican states have opted to take no further action, others, where conservative political forces are in the majority, have been very active in seeking to ensure that their constitutions are amended to protect human life from conception onwards. This intense legislative activity has not, however, been repeated at the federal level, where there is currently no overarching national regulatory framework governing stem cell research. Although major efforts have been made by the conservative block within the Senate to bring forward legislative proposals for the prohibition of human embryonic stem cell research, and despite the public expression by the federal government of its commitment to encourage inward investment and innovation in the area of biotechnology, stem cell science has, so far, remained unregulated. The legislative challenge is to resist the pressure that has been injected by religious leaders and to act in accordance with the values and principles adopted by the community in the Mexican Constitution. In the final analysis, Mexico faces particular difficulties in accommodating conservative political forces on one hand, while recognising on the other its need, as an emerging economy, to promote a progressive approach to innovation in biotechnology.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2011-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.2202/1941-6008.1142","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"68800719","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Review of What Is Nanotechnology and Why Does It Matter: From Science to Ethics","authors":"K. Elliott","doi":"10.2202/1941-6008.1138","DOIUrl":"https://doi.org/10.2202/1941-6008.1138","url":null,"abstract":"","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2011-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.2202/1941-6008.1138","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"68800567","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Science matters. Science matters to the development of knowledge, to the sustainability of development, and to the shaping of social mores. Countries transitioning from developing to developed must be prepared to make science work for them and to forge a vision to become competitors in some aspects of science innovation. Drawing on data generated by the “Governing Emerging Technologies: Social Values and Stem Cell Regulation in Argentina” Project (ESRC Award No. RES-000-22-2678), this paper (1) places the current Argentine bioscience setting in context by reviewing the development of biosciences in Argentina, (2) explores understandings of the social dimensions of bioscience innovation in Argentina and the possibilities of enhancing public support for science, and (3) offers some preliminary thoughts on a model for socio-legal activity directed at encouraging social engagement with and the uptake of high technologies in Argentina (i.e., the possibilities for generating a positive and facilitative “sci-tech culture” in Argentina).
{"title":"Ambition and Ambivalence: Encouraging a \"Sci-Tech Culture\" in Argentina through Engagement and Regulatory Reform","authors":"S. Harmon","doi":"10.2202/1941-6008.1134","DOIUrl":"https://doi.org/10.2202/1941-6008.1134","url":null,"abstract":"Science matters. Science matters to the development of knowledge, to the sustainability of development, and to the shaping of social mores. Countries transitioning from developing to developed must be prepared to make science work for them and to forge a vision to become competitors in some aspects of science innovation. Drawing on data generated by the “Governing Emerging Technologies: Social Values and Stem Cell Regulation in Argentina” Project (ESRC Award No. RES-000-22-2678), this paper (1) places the current Argentine bioscience setting in context by reviewing the development of biosciences in Argentina, (2) explores understandings of the social dimensions of bioscience innovation in Argentina and the possibilities of enhancing public support for science, and (3) offers some preliminary thoughts on a model for socio-legal activity directed at encouraging social engagement with and the uptake of high technologies in Argentina (i.e., the possibilities for generating a positive and facilitative “sci-tech culture” in Argentina).","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2011-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.2202/1941-6008.1134","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"68800071","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Energy insecurity is felt, and energy security is desired on a global, regional, national and local level and on the level of households, communities, groups, sectors, regions, countries and cultures. Different strategies and priorities for gaining energy security and avoiding energy insecurity are envisioned and employed by different households, communities, groups, sectors, regions, countries and cultures. This paper introduces the concept of ableism as an analytical framework to analyse strategies and priorities for gaining energy security and for avoiding or reducing energy insecurity, as well as envisioning governance solutions.
{"title":"Ableism and Energy Security and Insecurity","authors":"G. Wolbring","doi":"10.2202/1941-6008.1113","DOIUrl":"https://doi.org/10.2202/1941-6008.1113","url":null,"abstract":"Energy insecurity is felt, and energy security is desired on a global, regional, national and local level and on the level of households, communities, groups, sectors, regions, countries and cultures. Different strategies and priorities for gaining energy security and avoiding energy insecurity are envisioned and employed by different households, communities, groups, sectors, regions, countries and cultures. This paper introduces the concept of ableism as an analytical framework to analyse strategies and priorities for gaining energy security and for avoiding or reducing energy insecurity, as well as envisioning governance solutions.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2011-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.2202/1941-6008.1113","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"68799091","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Review of Gene Transfer and the Ethics of First-in-Human Research","authors":"D. Resnik","doi":"10.2202/1941-6008.1137","DOIUrl":"https://doi.org/10.2202/1941-6008.1137","url":null,"abstract":"","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2011-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.2202/1941-6008.1137","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"68800244","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
In recent years, technological progress has flourished and engulfed American society. The landscape of our nation is rapidly changing due to scientific advancement, and it is only logical that our educational scheme will soon follow suit integrating newfound technological developments. In particular, this paper will focus on a lawsuit involving Amazon.com’s (“Amazon”) Kindle Reader (“Kindle”) and its application in a pilot program at Arizona State University (“ASU”). This paper will be divided into seven sections and will center on the following: I. Introduction; II. Integration of Technology within America’s Educational Paradigm; III. Amazon’s Kindle Reader; IV. Amazon’s Kindle Pilot Program within American Universities; V. Legal Issues Concerning the Application of Amazon’s Kindle Reader at ASU; VI. Lawsuit against ASU by the National Federation of the Blind (“NFB”) and the American Council of the Blind (“ACB”); and VII. Concluding Remarks.
{"title":"Pilot Program Kindles a Spark","authors":"Allison J Landwehr","doi":"10.2202/1941-6008.1132","DOIUrl":"https://doi.org/10.2202/1941-6008.1132","url":null,"abstract":"In recent years, technological progress has flourished and engulfed American society. The landscape of our nation is rapidly changing due to scientific advancement, and it is only logical that our educational scheme will soon follow suit integrating newfound technological developments. In particular, this paper will focus on a lawsuit involving Amazon.com’s (“Amazon”) Kindle Reader (“Kindle”) and its application in a pilot program at Arizona State University (“ASU”). This paper will be divided into seven sections and will center on the following: I. Introduction; II. Integration of Technology within America’s Educational Paradigm; III. Amazon’s Kindle Reader; IV. Amazon’s Kindle Pilot Program within American Universities; V. Legal Issues Concerning the Application of Amazon’s Kindle Reader at ASU; VI. Lawsuit against ASU by the National Federation of the Blind (“NFB”) and the American Council of the Blind (“ACB”); and VII. Concluding Remarks.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"550 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2011-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.2202/1941-6008.1132","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"68799994","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
In a two week period in the first half of 2009, I bought theatre tickets from a virtual box office, browsed a social networking site a handful of times, and read a leading metropolitan newspaper online every day. All three of these activities, whether or not I was aware of it at the time, were intended by the service providers to be subject to contractual terms. For two of these activities I was asked to click on a button to indicate I agreed to these terms; for the other, I never even noticed a reference to the terms until I returned to the site for research purposes. I will admit freely that during my initial web activity, I was foolhardy enough to read none of the proffered terms. This paper asks the question: will the service providers nevertheless be able to rely on the protection of those terms?
{"title":"Enforceability of Clickwrap and Browsewrap Terms in Australia: Lessons from the U.S. and the U.K.","authors":"Kayleen Manwaring","doi":"10.2202/1941-6008.1102","DOIUrl":"https://doi.org/10.2202/1941-6008.1102","url":null,"abstract":"In a two week period in the first half of 2009, I bought theatre tickets from a virtual box office, browsed a social networking site a handful of times, and read a leading metropolitan newspaper online every day. All three of these activities, whether or not I was aware of it at the time, were intended by the service providers to be subject to contractual terms. For two of these activities I was asked to click on a button to indicate I agreed to these terms; for the other, I never even noticed a reference to the terms until I returned to the site for research purposes. I will admit freely that during my initial web activity, I was foolhardy enough to read none of the proffered terms. This paper asks the question: will the service providers nevertheless be able to rely on the protection of those terms?","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2011-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.2202/1941-6008.1102","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"68798705","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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