While the accumulation and increased circulation of genomic data have captured much attention ove... more While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been largely overlooked. In this paper, we propose the outline of a framework for assessing privacy risks in multi-omic research and databases. Following a comparison of privacy risks associated with genomic and epigenomic data, we dissect ten privacy risk-impacting omic data properties that affect either the risk of re-identification of research participants, or the sensitivity of the information potentially conveyed by biological data. We then propose a three-step approach for the assessment of privacy risks in the multi-omic era. Thus, we lay grounds for a data property-based, 'pan-omic' approach that moves away from genetic exceptionalism. We conclude by inviting our peers to refine these theoretical foundations, put them to the test in their respective fields, and translate our approach into practical guidance.
Annual Review of Genomics and Human Genetics, 2020
Concerns about genetic discrimination (GD) often surface when discussing research and innovation ... more Concerns about genetic discrimination (GD) often surface when discussing research and innovation in genetics. Over recent decades, countries around the world have attempted to address GD using various policy measures. In this article, we survey these approaches and provide a critical commentary on their advantages and disadvantages. Our examination begins with regions featuring extensive policy-making activities (North America and Europe), followed by regions with moderate policy-making activities (Australia, Asia, and South America) and regions with minimal policy-making activities (the Middle East and Africa). Our analysis then turns to emerging issues regarding genetic testing and GD, including the expansion of multiomics sciences and direct-to-consumer genetic tests outside the health context. We additionally survey the shortcomings of current normative approaches addressing GD. Finally, we conclude by highlighting the evolving nature of GD and the need for more innovative polic...
Private companies have recently started to sell epigenetic tests to the public online, most of th... more Private companies have recently started to sell epigenetic tests to the public online, most of them without supervision by a physician. While the ethical and legal implications of direct-to-consumer genetic testing have received considerable attention over the past decades, other direct-to-consumer ‘omic’ tests have largely escaped scrutiny. Direct-to-consumer epigenetic tests have the potential to reveal sensitive information about individuals, such as disease risk and exposure history. Yet regulation lags behind purely genetics-based tests. In this Comment article, the authors discuss the salient ethical and legal considerations of direct-to-consumer epigenetic tests.
Epigenetics, defined as ‘the study of mitotically and/or meiotically heritable changes in gene fu... more Epigenetics, defined as ‘the study of mitotically and/or meiotically heritable changes in gene function that cannot be explained by changes in DNA sequence’, has emerged as a promissory yet controversial field of scientific inquiry over the past decade. Scholars from many disciplines have formulated both optimistic and cautionary claims regarding its potential normative implications. This article provides a comprehensive review of the nascent literature at the crossroads of epigenetics, ethics, law and society. It describes nine emerging areas of discussion, relating to (1) the impact of epigenetics on the nature versus nurture dualism, (2) the potential resulting biologization of the social, (3) the meaning of epigenetics for public health, its potential influence on (4) reproduction and parenting, (5) political theory and (6) legal proceedings, and concerns regarding (7) stigmatization and discrimination, (8) privacy protection and (9) knowledge translation. While there is some de...
L’épigénétique est un champ d’études qui s’intéresse aux modifications biochimiques et aux change... more L’épigénétique est un champ d’études qui s’intéresse aux modifications biochimiques et aux changements dans la structure tridimensionnelle (3D) de l’ADN ayant pour effet de contraindre ou de faciliter la lecture et l’expression des gènes. Au cours des dix dernières années, l’épigénétique a attiré l’attention d’un nombre croissant de chercheurs en sciences sociales, puisqu’elle semble venir confirmer, cette fois sur le plan moléculaire, le rôle déterminant de l’environnement développemental (physico-chimique et psychosocial) des personnes dans la configuration de leur individualité biologique et dans la programmation de leur santé future. Cet article se penche sur les implications épistémologiques potentielles de l’épigénétique. Nous distinguons et décrivons trois perspectives socio-anthropologiques complémentaires, adoptées par différents auteurs, sur le rapprochement des concepts de « nature » et de « culture » par l’épigénétique : la socialisation du biologique, la biologisation d...
Over more than two decades, various policies have been adopted worldwide to restrict the use of i... more Over more than two decades, various policies have been adopted worldwide to restrict the use of individual genetic information for non-medical reasons by third parties and prevent 'genetic discrimination'. In this paper, we bring attention to the growing interest for individual by insurers and forensic scientists. We question whether such interest could lead to 'epigenetic discrimination' - the differential adverse treatment or abusive profiling of individuals or groups based on their actual or presumed epigenetic characteristics - and argue that we might already be facing the limitations of recently adopted normative approaches against genetic discrimination. First, we highlight some similarities and differences between genetic and epigenetic modifications, and stress potential challenges to regulating epigenetic discrimination. Second, we argue that most existing normative approaches against genetic discrimination fall short in providing oversight into the field of...
Non-invasive prenatal testing (NIPT) using cell-free fetal DNA (cffDNA) from maternal blood has r... more Non-invasive prenatal testing (NIPT) using cell-free fetal DNA (cffDNA) from maternal blood has recently entered clinical practice in many countries, including Canada. This test can be performed early during pregnancy to detect Down syndrome and other conditions. While NIPT promises numerous benefits, it also has challenging ethical, legal and social implications (ELSI). This paper reviews concerns currently found in the literature on the ELSI of NIPT. We make four observations. First, NIPT seems to exacerbate some of the already existing concerns raised by other prenatal tests (amniocentesis and maternal serum screening) such as threats to women’s reproductive autonomy and the potential for discrimination and stigmatization of disabled individuals and their families. This may be due to the likely upcoming large scale implementation and routinization of NIPT. Second, the distinction between NIPT as a screening test (as it is currently recommended) and as a diagnostic test (potential...
Journal of Developmental Origins of Health and Disease, 2017
The use of assisted reproductive technologies (ART) has increased significantly, allowing many co... more The use of assisted reproductive technologies (ART) has increased significantly, allowing many coping with infertility to conceive. However, an emerging body of evidence suggests that ART could carry epigenetic risks for those conceived through the use of these technologies. In accordance with the Developmental Origins of Health and Disease hypothesis, ART could increase the risk of developing late-onset diseases through epigenetic mechanisms, as superovulation, fertilization methods and embryo culture could impair the embryo’s epigenetic reprogramming. Such epigenetic risks raise ethical issues for all stakeholders: prospective parents and children, health professionals and society. This paper focuses on ethical issues raised by the consideration of these risks when using ART. We apply two key ethical principles of North American bioethics (respect for autonomy and non-maleficence) and suggest that an ethical tension may emerge from conflicting duties to promote the reproductive au...
ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb2... more ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb20 Race in the Postgenomic Era: Social Epigenetics Calling for Interdisciplinary Ethical Safeguards Katie M. Saulnier & Charles Dupras To cite this article: Katie M. Saulnier & Charles Dupras (2017) Race in the Postgenomic Era: Social Epigenetics Calling for Interdisciplinary Ethical Safeguards, The American Journal of Bioethics, 17:9, 58-60, DOI: 10.1080/15265161.2017.1353182 To link to this article: http://dx.doi.org/10.1080/15265161.2017.1353182
The American journal of bioethics : AJOB, Sep 1, 2017
ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb2... more ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb20 Biopolitical Barriers to a Potterian Bioethics: The (Potentially) Missed Opportunity of Epigenetics Charles Dupras, Bryn Williams-Jones & Vardit Ravitsky To cite this article: Charles Dupras, Bryn Williams-Jones & Vardit Ravitsky (2017) Biopolitical Barriers to a Potterian Bioethics: The (Potentially) Missed Opportunity of Epigenetics, The American Journal of Bioethics, 17:9, 15-17, DOI: 10.1080/15265161.2017.1353173 To link to this article: http://dx.doi.org/10.1080/15265161.2017.1353173
While the accumulation and increased circulation of genomic data have captured much attention ove... more While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been largely overlooked. In this paper, we propose the outline of a framework for assessing privacy risks in multi-omic research and databases. Following a comparison of privacy risks associated with genomic and epigenomic data, we dissect ten privacy risk-impacting omic data properties that affect either the risk of re-identification of research participants, or the sensitivity of the information potentially conveyed by biological data. We then propose a three-step approach for the assessment of privacy risks in the multi-omic era. Thus, we lay grounds for a data property-based, 'pan-omic' approach that moves away from genetic exceptionalism. We conclude by inviting our peers to refine these theoretical foundations, put them to the test in their respective fields, and translate our approach into practical guidance.
Annual Review of Genomics and Human Genetics, 2020
Concerns about genetic discrimination (GD) often surface when discussing research and innovation ... more Concerns about genetic discrimination (GD) often surface when discussing research and innovation in genetics. Over recent decades, countries around the world have attempted to address GD using various policy measures. In this article, we survey these approaches and provide a critical commentary on their advantages and disadvantages. Our examination begins with regions featuring extensive policy-making activities (North America and Europe), followed by regions with moderate policy-making activities (Australia, Asia, and South America) and regions with minimal policy-making activities (the Middle East and Africa). Our analysis then turns to emerging issues regarding genetic testing and GD, including the expansion of multiomics sciences and direct-to-consumer genetic tests outside the health context. We additionally survey the shortcomings of current normative approaches addressing GD. Finally, we conclude by highlighting the evolving nature of GD and the need for more innovative polic...
Private companies have recently started to sell epigenetic tests to the public online, most of th... more Private companies have recently started to sell epigenetic tests to the public online, most of them without supervision by a physician. While the ethical and legal implications of direct-to-consumer genetic testing have received considerable attention over the past decades, other direct-to-consumer ‘omic’ tests have largely escaped scrutiny. Direct-to-consumer epigenetic tests have the potential to reveal sensitive information about individuals, such as disease risk and exposure history. Yet regulation lags behind purely genetics-based tests. In this Comment article, the authors discuss the salient ethical and legal considerations of direct-to-consumer epigenetic tests.
Epigenetics, defined as ‘the study of mitotically and/or meiotically heritable changes in gene fu... more Epigenetics, defined as ‘the study of mitotically and/or meiotically heritable changes in gene function that cannot be explained by changes in DNA sequence’, has emerged as a promissory yet controversial field of scientific inquiry over the past decade. Scholars from many disciplines have formulated both optimistic and cautionary claims regarding its potential normative implications. This article provides a comprehensive review of the nascent literature at the crossroads of epigenetics, ethics, law and society. It describes nine emerging areas of discussion, relating to (1) the impact of epigenetics on the nature versus nurture dualism, (2) the potential resulting biologization of the social, (3) the meaning of epigenetics for public health, its potential influence on (4) reproduction and parenting, (5) political theory and (6) legal proceedings, and concerns regarding (7) stigmatization and discrimination, (8) privacy protection and (9) knowledge translation. While there is some de...
L’épigénétique est un champ d’études qui s’intéresse aux modifications biochimiques et aux change... more L’épigénétique est un champ d’études qui s’intéresse aux modifications biochimiques et aux changements dans la structure tridimensionnelle (3D) de l’ADN ayant pour effet de contraindre ou de faciliter la lecture et l’expression des gènes. Au cours des dix dernières années, l’épigénétique a attiré l’attention d’un nombre croissant de chercheurs en sciences sociales, puisqu’elle semble venir confirmer, cette fois sur le plan moléculaire, le rôle déterminant de l’environnement développemental (physico-chimique et psychosocial) des personnes dans la configuration de leur individualité biologique et dans la programmation de leur santé future. Cet article se penche sur les implications épistémologiques potentielles de l’épigénétique. Nous distinguons et décrivons trois perspectives socio-anthropologiques complémentaires, adoptées par différents auteurs, sur le rapprochement des concepts de « nature » et de « culture » par l’épigénétique : la socialisation du biologique, la biologisation d...
Over more than two decades, various policies have been adopted worldwide to restrict the use of i... more Over more than two decades, various policies have been adopted worldwide to restrict the use of individual genetic information for non-medical reasons by third parties and prevent 'genetic discrimination'. In this paper, we bring attention to the growing interest for individual by insurers and forensic scientists. We question whether such interest could lead to 'epigenetic discrimination' - the differential adverse treatment or abusive profiling of individuals or groups based on their actual or presumed epigenetic characteristics - and argue that we might already be facing the limitations of recently adopted normative approaches against genetic discrimination. First, we highlight some similarities and differences between genetic and epigenetic modifications, and stress potential challenges to regulating epigenetic discrimination. Second, we argue that most existing normative approaches against genetic discrimination fall short in providing oversight into the field of...
Non-invasive prenatal testing (NIPT) using cell-free fetal DNA (cffDNA) from maternal blood has r... more Non-invasive prenatal testing (NIPT) using cell-free fetal DNA (cffDNA) from maternal blood has recently entered clinical practice in many countries, including Canada. This test can be performed early during pregnancy to detect Down syndrome and other conditions. While NIPT promises numerous benefits, it also has challenging ethical, legal and social implications (ELSI). This paper reviews concerns currently found in the literature on the ELSI of NIPT. We make four observations. First, NIPT seems to exacerbate some of the already existing concerns raised by other prenatal tests (amniocentesis and maternal serum screening) such as threats to women’s reproductive autonomy and the potential for discrimination and stigmatization of disabled individuals and their families. This may be due to the likely upcoming large scale implementation and routinization of NIPT. Second, the distinction between NIPT as a screening test (as it is currently recommended) and as a diagnostic test (potential...
Journal of Developmental Origins of Health and Disease, 2017
The use of assisted reproductive technologies (ART) has increased significantly, allowing many co... more The use of assisted reproductive technologies (ART) has increased significantly, allowing many coping with infertility to conceive. However, an emerging body of evidence suggests that ART could carry epigenetic risks for those conceived through the use of these technologies. In accordance with the Developmental Origins of Health and Disease hypothesis, ART could increase the risk of developing late-onset diseases through epigenetic mechanisms, as superovulation, fertilization methods and embryo culture could impair the embryo’s epigenetic reprogramming. Such epigenetic risks raise ethical issues for all stakeholders: prospective parents and children, health professionals and society. This paper focuses on ethical issues raised by the consideration of these risks when using ART. We apply two key ethical principles of North American bioethics (respect for autonomy and non-maleficence) and suggest that an ethical tension may emerge from conflicting duties to promote the reproductive au...
ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb2... more ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb20 Race in the Postgenomic Era: Social Epigenetics Calling for Interdisciplinary Ethical Safeguards Katie M. Saulnier & Charles Dupras To cite this article: Katie M. Saulnier & Charles Dupras (2017) Race in the Postgenomic Era: Social Epigenetics Calling for Interdisciplinary Ethical Safeguards, The American Journal of Bioethics, 17:9, 58-60, DOI: 10.1080/15265161.2017.1353182 To link to this article: http://dx.doi.org/10.1080/15265161.2017.1353182
The American journal of bioethics : AJOB, Sep 1, 2017
ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb2... more ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb20 Biopolitical Barriers to a Potterian Bioethics: The (Potentially) Missed Opportunity of Epigenetics Charles Dupras, Bryn Williams-Jones & Vardit Ravitsky To cite this article: Charles Dupras, Bryn Williams-Jones & Vardit Ravitsky (2017) Biopolitical Barriers to a Potterian Bioethics: The (Potentially) Missed Opportunity of Epigenetics, The American Journal of Bioethics, 17:9, 15-17, DOI: 10.1080/15265161.2017.1353173 To link to this article: http://dx.doi.org/10.1080/15265161.2017.1353173
Recent technological progresses have made technological modifications of human beings a real poss... more Recent technological progresses have made technological modifications of human beings a real possibility. Many normal traits may be artificially enhanced. Sooner or latter, individuals will have the possibility to exchange their healthy limbs and organs for better artificial ones and transplantations of human brains into artificial carriers are already under study. Therefore, socio-ethical issues related to human enhancement have started to be seriously considered by scholars around the world. While such a technological revolution concerns the society as a whole, debates addressing the socio-ethical issues related to human enhancement have mainly been restricted to academics. Lay people are largely unaware of the discussions. The objective of this book is to inform lay people of the already existing and potential future possibilities to enhance humans through emerging technologies as well as the socio-ethical issues that are already raised by such technological modifications. This book constitutes a first step to encourage democratic and interdisciplinary involvement and discussion about some of the socio-ethical issues related to the technological modifications of human beings. Enjoy your journey through the augmented world ! http://future-human.life
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Papers by Charles Dupras