Pub Date : 2016-03-11DOI: 10.1186/s40504-016-0036-4
R. D. Vries, T. Tomlinson, H. M. Kim, C. Krenz, Kerry A Ryan, Nicole Lehpamer, Scott Y. H. Kim, Scott Y. H. Kim
{"title":"The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate","authors":"R. D. Vries, T. Tomlinson, H. M. Kim, C. Krenz, Kerry A Ryan, Nicole Lehpamer, Scott Y. H. Kim, Scott Y. H. Kim","doi":"10.1186/s40504-016-0036-4","DOIUrl":"https://doi.org/10.1186/s40504-016-0036-4","url":null,"abstract":"","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"12 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2016-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-016-0036-4","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"65689708","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}
Pub Date : 2016-02-17DOI: 10.1186/s40504-016-0035-5
Myra Cheng
{"title":"Erratum to: Islet Xeno/transplantation and the risk of contagion: local responses from Canada and Australia to an emerging global technoscience","authors":"Myra Cheng","doi":"10.1186/s40504-016-0035-5","DOIUrl":"https://doi.org/10.1186/s40504-016-0035-5","url":null,"abstract":"","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"12 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2016-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-016-0035-5","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"65689695","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}
Pub Date : 2016-01-20DOI: 10.1186/s40504-016-0034-6
K. P. Manhas, S. Page, Shawn X. Dodd, N. Letourneau, A. Ambrose, Xinjie Cui, S. Tough
{"title":"Parental perspectives on consent for participation in large-scale, non-biological data repositories","authors":"K. P. Manhas, S. Page, Shawn X. Dodd, N. Letourneau, A. Ambrose, Xinjie Cui, S. Tough","doi":"10.1186/s40504-016-0034-6","DOIUrl":"https://doi.org/10.1186/s40504-016-0034-6","url":null,"abstract":"","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"12 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2016-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-016-0034-6","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"65689648","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}
Pub Date : 2016-01-01Epub Date: 2016-04-18DOI: 10.1186/s40504-016-0037-3
Bradley Steven O Thornock
Whole genome sequencing (WGS) can be a cost-effective and efficient means of diagnosis for some children, but it also raises a number of ethical concerns. One such concern is how researchers derive and communicate results from WGS, including future requests for further analysis of stored sequences. The purpose of this paper is to think about what is at stake, and for whom, in any solution that is developed to deal with such requests. To accomplish this task, this paper will utilize stakeholder theory, a common method used in business ethics. Several scenarios that connect stakeholder concerns and WGS will also posited and analyzed. This paper concludes by developing criteria composed of a series of questions that researchers can answer in order to more effectively address requests for further analysis of stored sequences.
{"title":"A strategic stakeholder approach for addressing further analysis requests in whole genome sequencing research.","authors":"Bradley Steven O Thornock","doi":"10.1186/s40504-016-0037-3","DOIUrl":"https://doi.org/10.1186/s40504-016-0037-3","url":null,"abstract":"<p><p>Whole genome sequencing (WGS) can be a cost-effective and efficient means of diagnosis for some children, but it also raises a number of ethical concerns. One such concern is how researchers derive and communicate results from WGS, including future requests for further analysis of stored sequences. The purpose of this paper is to think about what is at stake, and for whom, in any solution that is developed to deal with such requests. To accomplish this task, this paper will utilize stakeholder theory, a common method used in business ethics. Several scenarios that connect stakeholder concerns and WGS will also posited and analyzed. This paper concludes by developing criteria composed of a series of questions that researchers can answer in order to more effectively address requests for further analysis of stored sequences. </p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"12 ","pages":"4"},"PeriodicalIF":3.1,"publicationDate":"2016-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-016-0037-3","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34413726","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2015-12-01DOI: 10.1186/s40504-015-0033-z
H. Mizuno, H. Akutsu, Kazuto Kato
{"title":"Ethical acceptability of research on human-animal chimeric embryos: summary of opinions by the Japanese Expert Panel on Bioethics","authors":"H. Mizuno, H. Akutsu, Kazuto Kato","doi":"10.1186/s40504-015-0033-z","DOIUrl":"https://doi.org/10.1186/s40504-015-0033-z","url":null,"abstract":"","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"11 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2015-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-015-0033-z","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"65689626","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}
Pub Date : 2015-12-01DOI: 10.1186/s40504-015-0031-1
Sakari Tamminen
{"title":"Bio-objectifying European bodies: standardisation of biobanks in the Biobanking and Biomolecular Resources Research Infrastructure","authors":"Sakari Tamminen","doi":"10.1186/s40504-015-0031-1","DOIUrl":"https://doi.org/10.1186/s40504-015-0031-1","url":null,"abstract":"","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"11 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2015-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-015-0031-1","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"65689573","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}
Pub Date : 2015-12-01DOI: 10.1186/s40504-015-0032-0
N. Stephens, R. Dimond
{"title":"Unexpected tissue and the biobank that closed: an exploration of value and the momentariness of bio-objectification processes","authors":"N. Stephens, R. Dimond","doi":"10.1186/s40504-015-0032-0","DOIUrl":"https://doi.org/10.1186/s40504-015-0032-0","url":null,"abstract":"","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"11 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2015-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-015-0032-0","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"65689588","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}
Pub Date : 2015-09-14DOI: 10.1186/s40504-015-0027-x
Christian Haddad
{"title":"Services in the self: embodied labor and the global bioeconomy","authors":"Christian Haddad","doi":"10.1186/s40504-015-0027-x","DOIUrl":"https://doi.org/10.1186/s40504-015-0027-x","url":null,"abstract":"","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"64 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2015-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-015-0027-x","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"65689533","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}
Pub Date : 2015-01-01Epub Date: 2015-07-21DOI: 10.1186/s40504-015-0024-0
Aaro Tupasela, Karoliina Snell, Jose A Cañada
This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to the construction of populations, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian. This bio-objectification process is problematic in relation to policy aspirations ascribed to biobanking engagement since it gives rise to reified notions of different populations.
{"title":"Constructing populations in biobanking.","authors":"Aaro Tupasela, Karoliina Snell, Jose A Cañada","doi":"10.1186/s40504-015-0024-0","DOIUrl":"10.1186/s40504-015-0024-0","url":null,"abstract":"<p><p>This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to the construction of populations, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian. This bio-objectification process is problematic in relation to policy aspirations ascribed to biobanking engagement since it gives rise to reified notions of different populations. </p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"11 ","pages":"5"},"PeriodicalIF":3.1,"publicationDate":"2015-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4508277/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34025368","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2015-01-01Epub Date: 2015-10-23DOI: 10.1186/s40504-015-0030-2
Myra Cheng
This paper situates the public debate over the use of living animal organs and tissue for human therapies within the history of experimental islet transplantation. Specifically, the paper compares and contrasts the Canadian and Australian responses on xenotransplantation to consider what lessons can be learnt about the regulation of a complex and controversial biotechnology. Sobbrio and Jorqui described public engagement on xenotransplantation in these countries as 'important forms of experimental democracy.' While Canada experimented with a novel nation-wide public consultation, Australia sought public input within the context of a national inquiry. In both instances, the outcome was a temporary moratorium on all forms of clinical xenotransplantation comparable to the policies adopted in some European countries. In addition, the Australian xenotransplantation ban coincided with a temporary global ban on experimental islet allotransplantation in 2007. Through historical and comparative research, this paper investigates how public controversies over organ and tissue transplantation can inform our understanding of the mediation of interspeciality and the regulation of a highly contested technoscience. It offers an alternative perspective on the xenotransplantation controversy by exploring the ways in which coinciding moratoriums on islet allograft and xenograft challenge, complicate and confound our assumptions regarding the relationships between human and animal, between routine surgery and clinical experimentation, between biomedical science and social science, and between disease risks and material contagion.
{"title":"Islet Xeno/transplantation and the risk of contagion: local responses from Canada and Australia to an emerging global technoscience.","authors":"Myra Cheng","doi":"10.1186/s40504-015-0030-2","DOIUrl":"10.1186/s40504-015-0030-2","url":null,"abstract":"<p><p>This paper situates the public debate over the use of living animal organs and tissue for human therapies within the history of experimental islet transplantation. Specifically, the paper compares and contrasts the Canadian and Australian responses on xenotransplantation to consider what lessons can be learnt about the regulation of a complex and controversial biotechnology. Sobbrio and Jorqui described public engagement on xenotransplantation in these countries as 'important forms of experimental democracy.' While Canada experimented with a novel nation-wide public consultation, Australia sought public input within the context of a national inquiry. In both instances, the outcome was a temporary moratorium on all forms of clinical xenotransplantation comparable to the policies adopted in some European countries. In addition, the Australian xenotransplantation ban coincided with a temporary global ban on experimental islet allotransplantation in 2007. Through historical and comparative research, this paper investigates how public controversies over organ and tissue transplantation can inform our understanding of the mediation of interspeciality and the regulation of a highly contested technoscience. It offers an alternative perspective on the xenotransplantation controversy by exploring the ways in which coinciding moratoriums on islet allograft and xenograft challenge, complicate and confound our assumptions regarding the relationships between human and animal, between routine surgery and clinical experimentation, between biomedical science and social science, and between disease risks and material contagion. </p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":"11 ","pages":"12"},"PeriodicalIF":3.1,"publicationDate":"2015-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4617985/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34181234","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}