{"title":"In that case: Shane is a professional rugby player who as a contract with a Super 12 team. Response.","authors":"Clive Dreyer","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87199,"journal":{"name":"New Zealand bioethics journal","volume":"5 2","pages":"34-5"},"PeriodicalIF":0.0,"publicationDate":"2004-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24859675","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}
Two research-related deaths and controversies in the United States during recent years have raised public concern over the safety of research participants. This paper explores the reasons why, in two studies, there was a failure of ethical oversight. The issues exposed by these failures have international relevance as they could possibly occur anywhere where human health research is carried out. Five factors that contributed to these failures are highlighted: 1. failure to support and resource research ethics committees; 2. failure of the research oversight process to adequately assess the risks and benefits of research, while giving undue emphasis to informed consent; 3. conflicts of interest arising from financial relationships and research ethics committee membership; 4. lack of consistent oversight of privately funded research; and 5. incompetent or intentional failure to adhere by ethical guidelines. There is considerable headway to be made in the United States, as in other countries, in the fostering and maintenance of robust systems of human research oversight.
{"title":"Protection of health research participants in the United States: a review of two cases.","authors":"Alison Douglass, Peter Crampton","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Two research-related deaths and controversies in the United States during recent years have raised public concern over the safety of research participants. This paper explores the reasons why, in two studies, there was a failure of ethical oversight. The issues exposed by these failures have international relevance as they could possibly occur anywhere where human health research is carried out. Five factors that contributed to these failures are highlighted: 1. failure to support and resource research ethics committees; 2. failure of the research oversight process to adequately assess the risks and benefits of research, while giving undue emphasis to informed consent; 3. conflicts of interest arising from financial relationships and research ethics committee membership; 4. lack of consistent oversight of privately funded research; and 5. incompetent or intentional failure to adhere by ethical guidelines. There is considerable headway to be made in the United States, as in other countries, in the fostering and maintenance of robust systems of human research oversight.</p>","PeriodicalId":87199,"journal":{"name":"New Zealand bioethics journal","volume":"5 2","pages":"6-12"},"PeriodicalIF":0.0,"publicationDate":"2004-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24859672","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":"In that case: Shane is a professional rugby player who has a contract with a Super 12 team. Response.","authors":"Anton Oliver","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87199,"journal":{"name":"New Zealand bioethics journal","volume":"5 2","pages":"37"},"PeriodicalIF":0.0,"publicationDate":"2004-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24859525","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}
This paper is based on anthropological research in three New Zealand cytogenetics laboratories involving participant observation carried out over three months and interviews with sixteen cytogeneticists in order to elucidate the distinctive characteristics of their views on the social consequences of their work in prenatal genetic testing. The discourses employed by cytogeneticists to describe their work are placed against other discourses in the contemporary debate surrounding prenatal genetic testing, i.e. clinical, ethical, feminist, social science and disability rights. In general, cytogeneticists frame their moral responsibilities in terms of the need to carry out what we have termed 'distanced care' of both the mothers being tested and the foetal cells which they cultivate in the laboratories. Certain paradoxes arise in these accounts of their work however, such as the idea of distanced care versus their demonstrated personalisation of the foetal cells with which they work and also between their burdensome awareness of the consequences for individual women of their karyotyping and their repeated references to the ethical and social consequences of their work as being determined by society not by their own actions.
{"title":"Cytogeneticists' stories around the ethics and social consequences of their work: a New Zealand case study.","authors":"Susanna Finlay, Ruth Fitzgerald, Mike Legge","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>This paper is based on anthropological research in three New Zealand cytogenetics laboratories involving participant observation carried out over three months and interviews with sixteen cytogeneticists in order to elucidate the distinctive characteristics of their views on the social consequences of their work in prenatal genetic testing. The discourses employed by cytogeneticists to describe their work are placed against other discourses in the contemporary debate surrounding prenatal genetic testing, i.e. clinical, ethical, feminist, social science and disability rights. In general, cytogeneticists frame their moral responsibilities in terms of the need to carry out what we have termed 'distanced care' of both the mothers being tested and the foetal cells which they cultivate in the laboratories. Certain paradoxes arise in these accounts of their work however, such as the idea of distanced care versus their demonstrated personalisation of the foetal cells with which they work and also between their burdensome awareness of the consequences for individual women of their karyotyping and their repeated references to the ethical and social consequences of their work as being determined by society not by their own actions.</p>","PeriodicalId":87199,"journal":{"name":"New Zealand bioethics journal","volume":"5 2","pages":"13-24"},"PeriodicalIF":0.0,"publicationDate":"2004-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24859673","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}
Most babies born in New Zealand have a blood sample taken shortly after birth for the purposes of certain screening tests. The samples are retained indefinitely. This paper considers whether such samples are the property of the child and whether the present changes in the Health (National Cervical Screening Programme) Amendment Bill and the Code of Health and Disability Services Consumers' Rights of 1996 are sufficient to resolve the issues. The paper expresses concern about the delegation of decision-making in this area to ethics committees.
{"title":"Guthrie test samples: is the problem solved?","authors":"Cordelia Thomas","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Most babies born in New Zealand have a blood sample taken shortly after birth for the purposes of certain screening tests. The samples are retained indefinitely. This paper considers whether such samples are the property of the child and whether the present changes in the Health (National Cervical Screening Programme) Amendment Bill and the Code of Health and Disability Services Consumers' Rights of 1996 are sufficient to resolve the issues. The paper expresses concern about the delegation of decision-making in this area to ethics committees.</p>","PeriodicalId":87199,"journal":{"name":"New Zealand bioethics journal","volume":"5 2","pages":"25-33"},"PeriodicalIF":0.0,"publicationDate":"2004-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24859674","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":"In that case: Shane is a professional rugby player who has a contract with a Super 12 team. Response.","authors":"Glenys Godlovitch","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87199,"journal":{"name":"New Zealand bioethics journal","volume":"5 2","pages":"36-7"},"PeriodicalIF":0.0,"publicationDate":"2004-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24859676","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}
Debate on the regulation of human stem cells needs to bring together scientific, ethical and policy considerations if it is to be adequately informed. Scientific issues of importance include the relevance of the environment in appreciating the extent of stem cell plasticity, and the relative potential of embryonic and adult stem cells to produce other cell types. An awareness that blastocysts (early embryos) and stem cells in the laboratory are pluripotential and not totipotential has implications for ethical and policy debate. The regulations on stem cell research are reviewed, showing that four positions have emerged. Position A corresponds to the prohibition of all embryo research, position B confines the use of embryonic stem cells to those currently in existence and therefore extracted prior to some specified date, position C allows for the use and ongoing isolation of embryonic stem cells from surplus in vitro fertilization embryos, and position D approves of the creation of human embryos specifically for research. Position B which has been adopted by the United States, Germany, and Australia (with subtle differences between them) and which is regarded as a compromise position, is critiqued. This is principally on the basis that, in spite of claims made about it, the ongoing destruction of human embryos will continue. This is because these countries allow in vitro fertilization programs, inherent within which is embryo destruction. It is argued that position C would be a more consistent ethical position for these countries. The possibility of moving to position D is also raised.
{"title":"Stem cells: public policy and ethics.","authors":"Cindy R Towns, D Gareth Jones","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Debate on the regulation of human stem cells needs to bring together scientific, ethical and policy considerations if it is to be adequately informed. Scientific issues of importance include the relevance of the environment in appreciating the extent of stem cell plasticity, and the relative potential of embryonic and adult stem cells to produce other cell types. An awareness that blastocysts (early embryos) and stem cells in the laboratory are pluripotential and not totipotential has implications for ethical and policy debate. The regulations on stem cell research are reviewed, showing that four positions have emerged. Position A corresponds to the prohibition of all embryo research, position B confines the use of embryonic stem cells to those currently in existence and therefore extracted prior to some specified date, position C allows for the use and ongoing isolation of embryonic stem cells from surplus in vitro fertilization embryos, and position D approves of the creation of human embryos specifically for research. Position B which has been adopted by the United States, Germany, and Australia (with subtle differences between them) and which is regarded as a compromise position, is critiqued. This is principally on the basis that, in spite of claims made about it, the ongoing destruction of human embryos will continue. This is because these countries allow in vitro fertilization programs, inherent within which is embryo destruction. It is argued that position C would be a more consistent ethical position for these countries. The possibility of moving to position D is also raised.</p>","PeriodicalId":87199,"journal":{"name":"New Zealand bioethics journal","volume":"5 1","pages":"22-8"},"PeriodicalIF":0.0,"publicationDate":"2004-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24859663","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":"In that case: Helen is a 23-year-old woman referred to a gynaecologist (Dr Gregg) by her GP. Response.","authors":"Bertram Young","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87199,"journal":{"name":"New Zealand bioethics journal","volume":"5 1","pages":"36"},"PeriodicalIF":0.0,"publicationDate":"2004-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24859668","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}