Kalina Kamenova | Independent Scholar (original) (raw)

Papers by Kalina Kamenova

Research paper thumbnail of China's New Regulations on Generative AI: Implications for Bioethics

The American Journal of Bioethics, 2023

In this commentary, we discuss China’s efforts to gain competitive advantage in the global AI rac... more In this commentary, we discuss China’s efforts to gain competitive advantage in the global AI race by strengthening the regulatory oversight of the generative AI ("GAI") technologies. We further consider whether the step toward reigning the GAI industry in China strikes a reasonable balance between the government’s vision of socially responsible AI technologies and its strategic agenda for economic and political dominance.

Research paper thumbnail of Organizational change of synthetic biology research: Emerging initiatives advancing a bottom-up approach

Current Research in Biotechnology, 2024

Bottom-up Synthetic Biology (buSynBio) is an approach focused on the artificial making of minimal... more Bottom-up Synthetic Biology (buSynBio) is an approach focused on the artificial making of minimal functional biosynthetic systems by recombining existent biochemical modules or manufacturing them from scratch. Over the last decade, this emerging orientation has gained new momentum with the development of new bioengineering tools, theories, and technologies. Despite the growing acceptance of buSynBio, few studies have dedicated attention to the analysis of its organizational aspects. This article offers the first systematic investigation of emerging research initiatives in buSynBio and their meaning to bioengineering research. Our analysis is based on a multi-method qualitative study, including expert literature review, bibliometric research and a documentary analysis of online materials such as reports and project descriptions available in official grant data repositories. Our study found that publications of specialized articles on "bottom-up synthetic biology" have increased, both in absolute numbers and normalized to total number of publications. We show how that might be enabled by novel mechanisms of organization that reposition material, intellectual and political resources in synthetic biology. Drawing on theoretical analyses within Science and Technology Studies (STS), we examine 14 research initiatives in 5 selected countries (Germany, United Kingdom, United States, Netherlands, and Switzerland). The bottom-up approach is supported by a variety of "tentative regimes" of scientific governance in different stages of consolidation, but holding in common the establishment of novel basic research in Chemistry, Biology, Engineering and Physics. The study aims to contribute to social science research in synthetic biology by shedding light on the implications of buSynBio as trend driving the current organizational change of bioengineering research.

Research paper thumbnail of The Public Communication and Biopolitics of Human Embryonic Stem Cell Research in the United States and the European Union

Research paper thumbnail of Digital Simulacra Mark an Ontological Shift in Biomedicine with Far-Reaching Consequences for Real Patients

The American Journal of Bioethics, 2023

Research paper thumbnail of Framing Ethical Concerns and Attitudes towards Human Gene Patents in the Chinese Press

Asian Bioethics Review, 2020

Research paper thumbnail of Media portrayal of non-invasive prenatal testing: a missing ethical dimension

Journal of Science Communication, 2016

Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorder... more Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorders in the fetus and mass media may have an impact on shaping the public understanding of its promise and challenges. We conducted a content analysis of 173 news reports to examine how NIPT was portrayed in English-language media sources between January 1 and December 31, 2013. Our analysis has shown that media emphasized the benefits and readiness of the technology, while overlooking uncertainty associated with its clinical use. Ethical concerns were rarely addressed in the news stories, which points to an important dimension missing in the media discourse.

Research paper thumbnail of The gene patent controversy on Twitter: a case study of Twitter users' responses to the CHEO lawsuit against Long QT gene patents

BMC medical ethics, Jan 25, 2015

The recent Canadian lawsuit on patent infringement, filed by the Children's Hospital of Easte... more The recent Canadian lawsuit on patent infringement, filed by the Children's Hospital of Eastern Ontario (CHEO), has engendered a significant public debate on whether patenting genes should be legal in Canada. In part, this public debate has involved the use of social networking sites, such as Twitter. This case provides an opportunity to examine how Twitter was used in the context of this gene patent controversy. We collected 310 English-language tweets that contained the keyword "gene patents" by using TOPSY.com and Twitter's built-in search engine. A content analysis of the messages was conducted to establish the users' perspectives on both CHEO's court challenge and the broader controversy over the patenting of human DNA. More specifically, we analyzed the users' demographics, geographic locations, and attitudes toward the CHEO position on gene patents and the patentability of human genes in principle. Our analysis has shown that messages tweeted by ...

Research paper thumbnail of Stem cell hype: Media portrayal of therapy translation

Science translational medicine, Jan 11, 2015

In this Perspective, we examine the portrayal of translational stem cell research in major daily ... more In this Perspective, we examine the portrayal of translational stem cell research in major daily newspapers in Canada, the United States, and the United Kingdom between 2010 and 2013, focusing on how timelines for stem cell therapies were represented before and after Geron terminated its pioneering stem cell program. Our content analysis reveals that press coverage has shifted from ethical, legal, and social issues to clinical translation issues, and highly optimistic timelines were provided with no substantial change in representation over time. Scientists were the dominant voice with respect to translation timelines. The findings raise questions about the degree to which the media's overly optimistic slant fosters unrealistic expectations regarding the speed of clinical translation and highlight the ethical responsibility of stem cell researchers as public communicators.

Research paper thumbnail of The First Baby Born After Polygenic Embryo Screening

Voices in Bioethics

This article examines the bioethical discourse on polygenic embryo screening (PES) in reproductiv... more This article examines the bioethical discourse on polygenic embryo screening (PES) in reproductive medicine in blogs and news stories published during 2021 in response to the first baby’s birth using polygenic risk scores (PRS) derived from genome-wide association studies. We further contextualize the findings by synthesizing the emerging peer-reviewed bioethics literature on the issue, which has emphasized considerations regarding the child-parent future relationship, equity of access, and the absence of professional guidelines. Our media content analysis has established that expert opinion was prominently featured in news coverage, with bioethicists and other academics contributing 38 percent of articles and providing extensive commentary on ethical, social, and policy implications in the articles written by journalists. The overall perspective towards the use of PES was primarily negative (59 percent of the articles), without significant differences in negativity and positivity b...

Research paper thumbnail of The Intrinsic Value of Public Deliberation in the Governance of Human Genome Editing

The American Journal of Bioethics, 2023

Research paper thumbnail of Bioethicists Are Not so Divided on Reproductive Testing for Non-Medical Traits: Emerging Perspectives on Polygenic Scores

The American Journal of Bioethics, 2023

Research paper thumbnail of The First Baby Born After Polygenic Embryo Screening: Key Issues Through the Lens of Experts and Science Reporters

Voices in Bioethics, 2022

This article examines the bioethical discourse on polygenic embryo screening (PES) in reproductiv... more This article examines the bioethical discourse on polygenic embryo screening (PES) in reproductive medicine in blogs and news stories published during 2021 in response to the first baby's birth using polygenic risk scores (PRS) derived from genome-wide association studies. We further contextualize the findings by synthesizing the emerging peer-reviewed bioethics literature on the issue, which has emphasized considerations regarding the child-parent future relationship, equity of access, and the absence of professional guidelines. Our media content analysis has established that expert opinion was prominently featured in news coverage, with bioethicists and other academics contributing 38 percent of articles and providing extensive commentary on ethical, social, and policy implications in the articles written by journalists. The overall perspective towards the use of PES was primarily negative (59 percent of the articles), without significant differences in negativity and positivity between experts and science reporters. This indicates a shift from the predominantly neutral attitudes towards the technology in media discourse prior to its deployment in clinical settings. There is heightened awareness that offering these tests to prospective parents is unethical and can create unrealistic expectations, with the two most prominent arguments being uncertainty about the prediction accuracy of polygenic risk scores in this context (72 percent of the articles) and the potential of PES to lead to a eugenic future of human reproduction that normalizes the discrimination of people based on their genetics (59 percent of the articles).

Research paper thumbnail of Framing Ethical Concerns and Attitudes towards Human Gene Patents in the Chinese Press

Asian Bioethics Review, 2020

This study examines the representations of human gene patents in Chinese newspapers.We conducted ... more This study examines the representations of human gene patents in Chinese newspapers.We conducted a qualitative content analysis of news articles published between 2006 and2017 to identify the major themes in media coverage, ethical considerations, perceptions of risks and benefits, and attitudes towards the patentability of human genes. The results show that two key ethical concerns were expressed by journalists: (1) that it is morally wrong to own or patent human genes and (2) that gene patents could potentially impede patients’ access to healthcare services. Nonetheless, the press coverage has tended to be largely favorable (57.8%), rather than opposed (17.8%) to human gene patenting. There were no normative claims that human genes should not be patentable in China, which indicates a generally positive attitude towards patentability in media discourse. Most articles that expressed criticism toward gene patenting discussed challenges in other countries, with significant attention given to the United States Supreme Court’s ruling in the Myriad case that invalidated Myriad Genetics’ patents on theBRCA1andBRCA2genes. Overall, the newspapers were uncritical of the Chinese gene patenting regime.News reporting on the issue was highly suggestive of a strong pro-commercialization stance, although some discussions emphasized potential risks over benefits. Our analysis highlights the need for balanced media reporting on human gene patents in China and atop-down approach to engage the public in substantive discussions on the ethical and societal implications of the existing patent regime.

Research paper thumbnail of Why Ethical Qualms over Human Embryonic Stem Cells Are No Longer Relevant: An Analysis of the Evolving Public Discourse and Regulatory Context for Stem Cell Research in Canada

Schriften zum Bio-, Ciesundheits-und Medizinrecht 34 Stammzellen -iPS-Zellen - Genomeditierung Stem Cells -iPS Cells -Genome Editing ·o Nomos, 2018

This paper provides an overview of the public controversy surrounding human embryonic stem cell (... more This paper provides an overview of the public controversy surrounding human embryonic stem cell (hESC) research and reproductive technologies in Canada, focusing on the passing of the Assisted Human Reproduction Act in 2004 and the subsequent implementation of heightened ethics oversight for research protocols on derivation and experimentation with hESCs. Key factors are examined that have contributed to the evolution of public discourse on the issue and a gradual normalisation of hESC research such as calming public fears over the possibility for reproductive cloning and the increased use of induced human pluripotent stem cells (iPSCs) as an ethical alternative to embryonic sources of stem cells. While there are still disagreements over the moral status of and the degree of legal protection owed to human embryos, ethical qualms from the past appear to be no longer paramount in a Canadian context. I trace the evolution of public perceptions and news media representations of stem cell therapies to illustrate that hESC research is no longer framed as an area of biomedical research that warrants ethical exceptionalism and heightened oversight. Drawing on media content analyses, I illustrate how since 2010 onward, ethical concerns about the use of human embryonic stem cells and the destruction of human embryos have been displaced from the forefront of news coverage, while issues concerning clinical translation and new discoveries in the field have become more prominently featured. The case is further strengthened through an analysis of shifting public attitudes and changes in regulatory regimes in Canada and internationally indicating that emerging issues in translational stem cell research, such as the management of cell lines, the ethics of clinical trials, and the marketing of unproven stem cell treatments,
rather than the moral status of the human embryo, are currently at the centre of ethical controversy.

Research paper thumbnail of Media portrayal of stem cell research: towards a normative model for science communication

As the field of science communication has matured over the past 50 years, there has been a signif... more As the field of science communication has matured over the past 50 years, there has been a significant move away from the conventional understanding that mass media's role in the public communication of science is limited to reporting new scientific discoveries. Media have been increasingly viewed as important for the legitimation of science and scholars have recognized their agenda-setting effects and ability to facilitate interaction between the public, scientific community, policymakers, interest groups, and other social actors. This article draws on analyses of news media coverage of stem cell research between 1998 and 2013 to demonstrate the active role of mass media in validating scientific claims about discoveries in the field and shaping the public understanding of key bioethical and policy issues. It further assesses whether media, in their attempts to construct the Bright^ position, have instigated a rational-critical discourse on the controversy. I argue that media representations in different cultural contexts have largely failed to meet normative expectations about the democratization of public discussions on biomedical innovation, as set out in the public engagement with science and technology (PEST) model of science communication. Rather than deconstructing the major terms of science policy debates as framed by stem cell advocates and their opponents, media coverage has mostly replicated discussions in political and legislative arenas, presenting the controversy as a strict binary opposition. Media have rarely provided critical reflection on the hype surrounding breakthroughs in stem cell research, thus reinforcing the public's unrealistic expectations about the future of this biomedical innovation.

Research paper thumbnail of Religion, ethics and scientific knowledge in the post-secular society: A case study of the stem cell controversy.

NotaBene ISSN 1313-7859, 2017

This paper compares and contrasts conflicting religious perspectives on the moral status of the h... more This paper compares and contrasts conflicting religious perspectives on the moral status of the human embryos and their use in stem cell research derived from major monotheistic religions such as Catholicism, Judaism and Islam. I examine the validity of such religious arguments in debates on stem cell research and science policy more broadly through a critical analysis of Jurgen Habermas’s theory of the post-secular society, particularly the claim that the clash between science and religion in contemporary liberal democracies could be offset by adopting a new concept of ethical citizenship. This normative perspective mandates epistemic flexibility by both religious and secular citizens who ought to willfully engage in complimentary learning processes in order to transcend the inherent limitations of both non-reflexive religious beliefs and narrow secularist worldviews. My analysis of the role of religion in the stem cell controversy suggests that the value positions of participants in public deliberations are deeply entrenched and ideological differences often translate into conflicting epistemic claims about science. I argue that a meaningful dialogue between science and religious traditions on the issue is largely dependent on how compatible are scientifically derived assessments of embryonic status with the respective religion’s fundamental theological tenets about the beginning of personhood. It is also contingent on the degree of openness of each religious tradition to both rival traditions and scientific knowledge. Additionally, I illustrate how the stem cell controversy is not reducible to the conflict between religion and scientific knowledge on the value of human embryonic life, around which stem cell debates worldwide have often been framed, by undertaking a close examination of three bioethical issues central to the debate: (1) secular perspectives on the contested moral status of the human embryo; (2) the ethics of human cloning technology; and (3) concerns about the exploitation of women as major tissue donors in the global stem cell bioeconomy.

Research paper thumbnail of Research ethics and stem cells

Research paper thumbnail of Non-invasive Prenatal Testing and the Unveiling of an Impaired Translation Process

Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a va... more Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a variety of clinical benefits, including a reduction in miscarriages, via a decline in invasive testing. However, there is also concern that the economic and near-future clinical benefits of NIPT have been overstated and the potential limitations and harms underplayed. NIPT, therefore, presents an opportunity to explore the ways in which a range of social pressures and policies can influence the translation, implementation, and use of a health care innovation. NIPT is often framed as a potential first tier screen that should be offered to all pregnant women, despite concerns over cost-effectiveness. Multiple forces have contributed to a problematic translational environment in Canada, creating pressure towards first tier implementation. Governments have contributed to commercialization pressure by framing the publicly funded research sector as a potential engine of economic growth. Members of industry have an incentive to frame clinical value as beneficial to the broadest possible cohort in order to maximize market size. Many studies of NIPT were directly funded and performed by private industry in laboratories lacking strong independent oversight. Physicians' fear of potential liability for failing to recommend NIPT may further drive widespread uptake. Broad social endorsement, when combined with these translation pressures, could result in the " routinization " of NIPT, thereby adversely affecting women's reproductive autonomy. Policymakers should demand robust independent evidence of clinical and public health utility relevant to their respective jurisdictions before making decisions regarding public funding for NIPT. Résumé Le dépistage prénatal non effractif (DPNE) est une technologie remarquable ayant le potentiel d'offrir une multitude d'avantages cliniques, notamment une réduction des fausses couches, grâce à la diminution du nombre d'examens invasifs. Cependant, certains soupçonnent que les avantages économiques et cliniques à court terme du DPNE ont été surévalués, et ses limites et méfaits, minimisés. Il y a donc lieu d'étudier de quelle façon les pressions sociales et les politiques influencent l'application concrète, la

Research paper thumbnail of Un jury de citoyens d’Edmonton se penche sur le vote par Internet

Du 23 au 25 novembre dernier, un jury de citoyens regroupant 17 participants d’Edmonton s’est pen... more Du 23 au 25 novembre dernier, un jury de citoyens regroupant 17 participants d’Edmonton s’est penché sur la possibilité d’offrir de voter par Internet comme autre solution lors des prochaines élections municipales. Ce processus unique de mobilisation du public, premier en son genre au Canada, a été conçu par le Centre for Public Involvement de l’Université de l’Alberta. Pour prendre sa décision, le jury a entendu les témoignages de différents experts, il a évalué les données probantes qui lui ont été présentées et, après de longues délibérations, il a rendu un verdict en faveur du vote par Internet. Dans le présent article, les auteures résument le processus adopté par le jury, en analysent les résultats et exposent les leçons apprises dans le cadre de cette approche de l’élaboration de politiques participatives et du processus décisionnel.

Research paper thumbnail of Media portrayal of non-invasive prenatal testing: a missing ethical dimension

Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorder... more Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorders in the fetus and mass media may have an impact on shaping the public understanding of its promise and challenges. We conducted a content analysis of 173 news reports to examine how NIPT was portrayed in English-language media sources between January 1 and December 31, 2013. Our analysis has shown that media emphasized the benefits and readiness of the technology, while overlooking uncertainty associated with its clinical use. Ethical concerns were rarely addressed in the news stories, which points to an important dimension missing in the media discourse. Abstract Health communication; Representations of science and technology Keywords Context The years since the discovery of cell-free fetal DNA (cffDNA)

Research paper thumbnail of China's New Regulations on Generative AI: Implications for Bioethics

The American Journal of Bioethics, 2023

In this commentary, we discuss China’s efforts to gain competitive advantage in the global AI rac... more In this commentary, we discuss China’s efforts to gain competitive advantage in the global AI race by strengthening the regulatory oversight of the generative AI ("GAI") technologies. We further consider whether the step toward reigning the GAI industry in China strikes a reasonable balance between the government’s vision of socially responsible AI technologies and its strategic agenda for economic and political dominance.

Research paper thumbnail of Organizational change of synthetic biology research: Emerging initiatives advancing a bottom-up approach

Current Research in Biotechnology, 2024

Bottom-up Synthetic Biology (buSynBio) is an approach focused on the artificial making of minimal... more Bottom-up Synthetic Biology (buSynBio) is an approach focused on the artificial making of minimal functional biosynthetic systems by recombining existent biochemical modules or manufacturing them from scratch. Over the last decade, this emerging orientation has gained new momentum with the development of new bioengineering tools, theories, and technologies. Despite the growing acceptance of buSynBio, few studies have dedicated attention to the analysis of its organizational aspects. This article offers the first systematic investigation of emerging research initiatives in buSynBio and their meaning to bioengineering research. Our analysis is based on a multi-method qualitative study, including expert literature review, bibliometric research and a documentary analysis of online materials such as reports and project descriptions available in official grant data repositories. Our study found that publications of specialized articles on "bottom-up synthetic biology" have increased, both in absolute numbers and normalized to total number of publications. We show how that might be enabled by novel mechanisms of organization that reposition material, intellectual and political resources in synthetic biology. Drawing on theoretical analyses within Science and Technology Studies (STS), we examine 14 research initiatives in 5 selected countries (Germany, United Kingdom, United States, Netherlands, and Switzerland). The bottom-up approach is supported by a variety of "tentative regimes" of scientific governance in different stages of consolidation, but holding in common the establishment of novel basic research in Chemistry, Biology, Engineering and Physics. The study aims to contribute to social science research in synthetic biology by shedding light on the implications of buSynBio as trend driving the current organizational change of bioengineering research.

Research paper thumbnail of The Public Communication and Biopolitics of Human Embryonic Stem Cell Research in the United States and the European Union

Research paper thumbnail of Digital Simulacra Mark an Ontological Shift in Biomedicine with Far-Reaching Consequences for Real Patients

The American Journal of Bioethics, 2023

Research paper thumbnail of Framing Ethical Concerns and Attitudes towards Human Gene Patents in the Chinese Press

Asian Bioethics Review, 2020

Research paper thumbnail of Media portrayal of non-invasive prenatal testing: a missing ethical dimension

Journal of Science Communication, 2016

Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorder... more Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorders in the fetus and mass media may have an impact on shaping the public understanding of its promise and challenges. We conducted a content analysis of 173 news reports to examine how NIPT was portrayed in English-language media sources between January 1 and December 31, 2013. Our analysis has shown that media emphasized the benefits and readiness of the technology, while overlooking uncertainty associated with its clinical use. Ethical concerns were rarely addressed in the news stories, which points to an important dimension missing in the media discourse.

Research paper thumbnail of The gene patent controversy on Twitter: a case study of Twitter users' responses to the CHEO lawsuit against Long QT gene patents

BMC medical ethics, Jan 25, 2015

The recent Canadian lawsuit on patent infringement, filed by the Children's Hospital of Easte... more The recent Canadian lawsuit on patent infringement, filed by the Children's Hospital of Eastern Ontario (CHEO), has engendered a significant public debate on whether patenting genes should be legal in Canada. In part, this public debate has involved the use of social networking sites, such as Twitter. This case provides an opportunity to examine how Twitter was used in the context of this gene patent controversy. We collected 310 English-language tweets that contained the keyword "gene patents" by using TOPSY.com and Twitter's built-in search engine. A content analysis of the messages was conducted to establish the users' perspectives on both CHEO's court challenge and the broader controversy over the patenting of human DNA. More specifically, we analyzed the users' demographics, geographic locations, and attitudes toward the CHEO position on gene patents and the patentability of human genes in principle. Our analysis has shown that messages tweeted by ...

Research paper thumbnail of Stem cell hype: Media portrayal of therapy translation

Science translational medicine, Jan 11, 2015

In this Perspective, we examine the portrayal of translational stem cell research in major daily ... more In this Perspective, we examine the portrayal of translational stem cell research in major daily newspapers in Canada, the United States, and the United Kingdom between 2010 and 2013, focusing on how timelines for stem cell therapies were represented before and after Geron terminated its pioneering stem cell program. Our content analysis reveals that press coverage has shifted from ethical, legal, and social issues to clinical translation issues, and highly optimistic timelines were provided with no substantial change in representation over time. Scientists were the dominant voice with respect to translation timelines. The findings raise questions about the degree to which the media's overly optimistic slant fosters unrealistic expectations regarding the speed of clinical translation and highlight the ethical responsibility of stem cell researchers as public communicators.

Research paper thumbnail of The First Baby Born After Polygenic Embryo Screening

Voices in Bioethics

This article examines the bioethical discourse on polygenic embryo screening (PES) in reproductiv... more This article examines the bioethical discourse on polygenic embryo screening (PES) in reproductive medicine in blogs and news stories published during 2021 in response to the first baby’s birth using polygenic risk scores (PRS) derived from genome-wide association studies. We further contextualize the findings by synthesizing the emerging peer-reviewed bioethics literature on the issue, which has emphasized considerations regarding the child-parent future relationship, equity of access, and the absence of professional guidelines. Our media content analysis has established that expert opinion was prominently featured in news coverage, with bioethicists and other academics contributing 38 percent of articles and providing extensive commentary on ethical, social, and policy implications in the articles written by journalists. The overall perspective towards the use of PES was primarily negative (59 percent of the articles), without significant differences in negativity and positivity b...

Research paper thumbnail of The Intrinsic Value of Public Deliberation in the Governance of Human Genome Editing

The American Journal of Bioethics, 2023

Research paper thumbnail of Bioethicists Are Not so Divided on Reproductive Testing for Non-Medical Traits: Emerging Perspectives on Polygenic Scores

The American Journal of Bioethics, 2023

Research paper thumbnail of The First Baby Born After Polygenic Embryo Screening: Key Issues Through the Lens of Experts and Science Reporters

Voices in Bioethics, 2022

This article examines the bioethical discourse on polygenic embryo screening (PES) in reproductiv... more This article examines the bioethical discourse on polygenic embryo screening (PES) in reproductive medicine in blogs and news stories published during 2021 in response to the first baby's birth using polygenic risk scores (PRS) derived from genome-wide association studies. We further contextualize the findings by synthesizing the emerging peer-reviewed bioethics literature on the issue, which has emphasized considerations regarding the child-parent future relationship, equity of access, and the absence of professional guidelines. Our media content analysis has established that expert opinion was prominently featured in news coverage, with bioethicists and other academics contributing 38 percent of articles and providing extensive commentary on ethical, social, and policy implications in the articles written by journalists. The overall perspective towards the use of PES was primarily negative (59 percent of the articles), without significant differences in negativity and positivity between experts and science reporters. This indicates a shift from the predominantly neutral attitudes towards the technology in media discourse prior to its deployment in clinical settings. There is heightened awareness that offering these tests to prospective parents is unethical and can create unrealistic expectations, with the two most prominent arguments being uncertainty about the prediction accuracy of polygenic risk scores in this context (72 percent of the articles) and the potential of PES to lead to a eugenic future of human reproduction that normalizes the discrimination of people based on their genetics (59 percent of the articles).

Research paper thumbnail of Framing Ethical Concerns and Attitudes towards Human Gene Patents in the Chinese Press

Asian Bioethics Review, 2020

This study examines the representations of human gene patents in Chinese newspapers.We conducted ... more This study examines the representations of human gene patents in Chinese newspapers.We conducted a qualitative content analysis of news articles published between 2006 and2017 to identify the major themes in media coverage, ethical considerations, perceptions of risks and benefits, and attitudes towards the patentability of human genes. The results show that two key ethical concerns were expressed by journalists: (1) that it is morally wrong to own or patent human genes and (2) that gene patents could potentially impede patients’ access to healthcare services. Nonetheless, the press coverage has tended to be largely favorable (57.8%), rather than opposed (17.8%) to human gene patenting. There were no normative claims that human genes should not be patentable in China, which indicates a generally positive attitude towards patentability in media discourse. Most articles that expressed criticism toward gene patenting discussed challenges in other countries, with significant attention given to the United States Supreme Court’s ruling in the Myriad case that invalidated Myriad Genetics’ patents on theBRCA1andBRCA2genes. Overall, the newspapers were uncritical of the Chinese gene patenting regime.News reporting on the issue was highly suggestive of a strong pro-commercialization stance, although some discussions emphasized potential risks over benefits. Our analysis highlights the need for balanced media reporting on human gene patents in China and atop-down approach to engage the public in substantive discussions on the ethical and societal implications of the existing patent regime.

Research paper thumbnail of Why Ethical Qualms over Human Embryonic Stem Cells Are No Longer Relevant: An Analysis of the Evolving Public Discourse and Regulatory Context for Stem Cell Research in Canada

Schriften zum Bio-, Ciesundheits-und Medizinrecht 34 Stammzellen -iPS-Zellen - Genomeditierung Stem Cells -iPS Cells -Genome Editing ·o Nomos, 2018

This paper provides an overview of the public controversy surrounding human embryonic stem cell (... more This paper provides an overview of the public controversy surrounding human embryonic stem cell (hESC) research and reproductive technologies in Canada, focusing on the passing of the Assisted Human Reproduction Act in 2004 and the subsequent implementation of heightened ethics oversight for research protocols on derivation and experimentation with hESCs. Key factors are examined that have contributed to the evolution of public discourse on the issue and a gradual normalisation of hESC research such as calming public fears over the possibility for reproductive cloning and the increased use of induced human pluripotent stem cells (iPSCs) as an ethical alternative to embryonic sources of stem cells. While there are still disagreements over the moral status of and the degree of legal protection owed to human embryos, ethical qualms from the past appear to be no longer paramount in a Canadian context. I trace the evolution of public perceptions and news media representations of stem cell therapies to illustrate that hESC research is no longer framed as an area of biomedical research that warrants ethical exceptionalism and heightened oversight. Drawing on media content analyses, I illustrate how since 2010 onward, ethical concerns about the use of human embryonic stem cells and the destruction of human embryos have been displaced from the forefront of news coverage, while issues concerning clinical translation and new discoveries in the field have become more prominently featured. The case is further strengthened through an analysis of shifting public attitudes and changes in regulatory regimes in Canada and internationally indicating that emerging issues in translational stem cell research, such as the management of cell lines, the ethics of clinical trials, and the marketing of unproven stem cell treatments,
rather than the moral status of the human embryo, are currently at the centre of ethical controversy.

Research paper thumbnail of Media portrayal of stem cell research: towards a normative model for science communication

As the field of science communication has matured over the past 50 years, there has been a signif... more As the field of science communication has matured over the past 50 years, there has been a significant move away from the conventional understanding that mass media's role in the public communication of science is limited to reporting new scientific discoveries. Media have been increasingly viewed as important for the legitimation of science and scholars have recognized their agenda-setting effects and ability to facilitate interaction between the public, scientific community, policymakers, interest groups, and other social actors. This article draws on analyses of news media coverage of stem cell research between 1998 and 2013 to demonstrate the active role of mass media in validating scientific claims about discoveries in the field and shaping the public understanding of key bioethical and policy issues. It further assesses whether media, in their attempts to construct the Bright^ position, have instigated a rational-critical discourse on the controversy. I argue that media representations in different cultural contexts have largely failed to meet normative expectations about the democratization of public discussions on biomedical innovation, as set out in the public engagement with science and technology (PEST) model of science communication. Rather than deconstructing the major terms of science policy debates as framed by stem cell advocates and their opponents, media coverage has mostly replicated discussions in political and legislative arenas, presenting the controversy as a strict binary opposition. Media have rarely provided critical reflection on the hype surrounding breakthroughs in stem cell research, thus reinforcing the public's unrealistic expectations about the future of this biomedical innovation.

Research paper thumbnail of Religion, ethics and scientific knowledge in the post-secular society: A case study of the stem cell controversy.

NotaBene ISSN 1313-7859, 2017

This paper compares and contrasts conflicting religious perspectives on the moral status of the h... more This paper compares and contrasts conflicting religious perspectives on the moral status of the human embryos and their use in stem cell research derived from major monotheistic religions such as Catholicism, Judaism and Islam. I examine the validity of such religious arguments in debates on stem cell research and science policy more broadly through a critical analysis of Jurgen Habermas’s theory of the post-secular society, particularly the claim that the clash between science and religion in contemporary liberal democracies could be offset by adopting a new concept of ethical citizenship. This normative perspective mandates epistemic flexibility by both religious and secular citizens who ought to willfully engage in complimentary learning processes in order to transcend the inherent limitations of both non-reflexive religious beliefs and narrow secularist worldviews. My analysis of the role of religion in the stem cell controversy suggests that the value positions of participants in public deliberations are deeply entrenched and ideological differences often translate into conflicting epistemic claims about science. I argue that a meaningful dialogue between science and religious traditions on the issue is largely dependent on how compatible are scientifically derived assessments of embryonic status with the respective religion’s fundamental theological tenets about the beginning of personhood. It is also contingent on the degree of openness of each religious tradition to both rival traditions and scientific knowledge. Additionally, I illustrate how the stem cell controversy is not reducible to the conflict between religion and scientific knowledge on the value of human embryonic life, around which stem cell debates worldwide have often been framed, by undertaking a close examination of three bioethical issues central to the debate: (1) secular perspectives on the contested moral status of the human embryo; (2) the ethics of human cloning technology; and (3) concerns about the exploitation of women as major tissue donors in the global stem cell bioeconomy.

Research paper thumbnail of Research ethics and stem cells

Research paper thumbnail of Non-invasive Prenatal Testing and the Unveiling of an Impaired Translation Process

Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a va... more Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a variety of clinical benefits, including a reduction in miscarriages, via a decline in invasive testing. However, there is also concern that the economic and near-future clinical benefits of NIPT have been overstated and the potential limitations and harms underplayed. NIPT, therefore, presents an opportunity to explore the ways in which a range of social pressures and policies can influence the translation, implementation, and use of a health care innovation. NIPT is often framed as a potential first tier screen that should be offered to all pregnant women, despite concerns over cost-effectiveness. Multiple forces have contributed to a problematic translational environment in Canada, creating pressure towards first tier implementation. Governments have contributed to commercialization pressure by framing the publicly funded research sector as a potential engine of economic growth. Members of industry have an incentive to frame clinical value as beneficial to the broadest possible cohort in order to maximize market size. Many studies of NIPT were directly funded and performed by private industry in laboratories lacking strong independent oversight. Physicians' fear of potential liability for failing to recommend NIPT may further drive widespread uptake. Broad social endorsement, when combined with these translation pressures, could result in the " routinization " of NIPT, thereby adversely affecting women's reproductive autonomy. Policymakers should demand robust independent evidence of clinical and public health utility relevant to their respective jurisdictions before making decisions regarding public funding for NIPT. Résumé Le dépistage prénatal non effractif (DPNE) est une technologie remarquable ayant le potentiel d'offrir une multitude d'avantages cliniques, notamment une réduction des fausses couches, grâce à la diminution du nombre d'examens invasifs. Cependant, certains soupçonnent que les avantages économiques et cliniques à court terme du DPNE ont été surévalués, et ses limites et méfaits, minimisés. Il y a donc lieu d'étudier de quelle façon les pressions sociales et les politiques influencent l'application concrète, la

Research paper thumbnail of Un jury de citoyens d’Edmonton se penche sur le vote par Internet

Du 23 au 25 novembre dernier, un jury de citoyens regroupant 17 participants d’Edmonton s’est pen... more Du 23 au 25 novembre dernier, un jury de citoyens regroupant 17 participants d’Edmonton s’est penché sur la possibilité d’offrir de voter par Internet comme autre solution lors des prochaines élections municipales. Ce processus unique de mobilisation du public, premier en son genre au Canada, a été conçu par le Centre for Public Involvement de l’Université de l’Alberta. Pour prendre sa décision, le jury a entendu les témoignages de différents experts, il a évalué les données probantes qui lui ont été présentées et, après de longues délibérations, il a rendu un verdict en faveur du vote par Internet. Dans le présent article, les auteures résument le processus adopté par le jury, en analysent les résultats et exposent les leçons apprises dans le cadre de cette approche de l’élaboration de politiques participatives et du processus décisionnel.

Research paper thumbnail of Media portrayal of non-invasive prenatal testing: a missing ethical dimension

Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorder... more Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorders in the fetus and mass media may have an impact on shaping the public understanding of its promise and challenges. We conducted a content analysis of 173 news reports to examine how NIPT was portrayed in English-language media sources between January 1 and December 31, 2013. Our analysis has shown that media emphasized the benefits and readiness of the technology, while overlooking uncertainty associated with its clinical use. Ethical concerns were rarely addressed in the news stories, which points to an important dimension missing in the media discourse. Abstract Health communication; Representations of science and technology Keywords Context The years since the discovery of cell-free fetal DNA (cffDNA)

Research paper thumbnail of The Public Communication and Biopolitics of Human Embryonic Stem Cell Research in the United States and the European Union

This dissertation uses the methods of interpretive social science to explore the multidimensional... more This dissertation uses the methods of interpretive social science to explore the multidimensional nature of the stem cell controversy, its competing epistemologies, and types of resolution and policy closure that have been sought in the United States and the European Union. It provides a comparative perspective on the social dynamics of public involvement in stem cell research and evaluates efforts by governments and bioethics advisory bodies to integrate dialogue and deliberation in science policy and decision making. The analysis highlights the agenda-setting and framing roles of the print and electronic news media in the public discourse over stem cells and human cloning, including their ability to validate conflicting knowledge claims about stem cell science and frame uncertainty about its clinical promise. I argue that stem cell policy debates are deeply embedded in particular socio-political and cultural contexts, and therefore regulatory responses to the societal challenges arising from this biomedical innovation have largely been shaped by non-epistemic factors (considerations external to science and its epistemologies). In the US, the issue of human embryonic stem cell research was right from the outset framed in terms of the contentious politics of abortion, became caught up in America’s culture wars, and the funding policy debate revived salient political themes of earlier controversies over abortion and fetal transplantation research. By contrast, efforts by EU policymakers to develop a framework for the ethical governance of stem cell technologies and their applications in regenerative medicine were intertwined with fundamental questions of EU federalism, common European cultural values, and the traditional consensus-oriented politics. I claim that in both cases the moral and policy dilemma was brought to a conclusion by non-epistemic procedural closure. By sealing off the debate through legislative and administrative procedures, policymakers have failed to achieve a morally justifiable resolution of the issues central to the stem cell controversy either through the method of consensus closure or on the basis of epistemic (knowledge-based) factors.