Emmanuelle Rial‐Sebbag
Biographic Data
| ID | 6308035 |
|---|---|
| NAME | Emmanuelle Rial‐Sebbag |
| GIVEN NAMES | Emmanuelle |
| FAMILY NAME | Rial‐Sebbag |
| SIGNATURE | SEBBAG E R |
| AFFILIATIONS | Université Toulouse III - Paul Sabatier |
| ORCID | 0009-0005-3818-0101 |
| VERIFIED | Yes |
| TOTAL WORKS | 17 |
| TOTAL CITATIONS | 5 |
| WORKS AS AUTHOR | 17 |
| WORKS AS EDITOR | 0 |
| FIRST PUBLICATION YEAR | 2007 |
| LATEST PUBLICATION YEAR | 2025 |
| H-INDEX | 1 |
The human body and the body elements—Conditions for their use in genetics under the French bioethics law and beyond
French legislation has strictly regulated genetic analysis since the adoption of the bioethics laws in 1994. Following a historical perspective, we discuss how French laws have provided a stable legal regime for access to and use of the human body and its elements until the recent revision of the laws. We present the main bioethical principles attached to the human body and their jurisprudential treatment. We balance this approach of stability by…
The Emergence of AI in Public Health Is Calling for Operational Ethics to Foster Responsible Uses
This paper discusses the responsible use of artificial intelligence (AI) in public health and in medicine, and questions the development of AI ethics in international guidelines from a public health perspective. How can a global ethics approach help conceive responsible AI development and use for improving public health? By analysing key international guidelines in AI ethics (UNESCO, WHO, European High-Level Expert Group on AI) and the available …
Chapitre 5. From individuals to social
Dans le cadre de la médecine personnalisée, la pharmacogénomique (PGx) permet aux praticiens de délivrer le bon médicament à un patient donné, en fonction des résultats d’un test génétique. Cette pratique soulève de nombreuses questions éthiques qui sont discutées dans la littérature, parfois dans le contexte plus large de la médecine personnalisée. Cet article s’appuie sur une revue de littérature originale car interdisciplinaire et basée sur un…
Chapitre 6. Le déploiement de la médecine génomique
La recherche génétique repose aujourd’hui en grande partie sur la réutilisation des données génétiques issues du soin au profit de la recherche. Cette évolution des pratiques emportant une communication de plus en plus marquée entre soin et recherche vient questionner la place accordée au patient regardé comme potentiel participant à la recherche. Afin de favoriser la circulation des données génétiques générées et de permettre leur réutilisation …
Deciphering the Fragmentation of the Human Genome Editing Regulatory Landscape
Genome editing techniques have generated a growing interest following the discovery of the so-called CRISPR-Cas technique. It has raised a global uproar as regards its use in humans, especially after the 2018 announcement of a Chinese scientist who had used CRISPR to edit the genes of twin embryos. Indeed, one of the greatest concerns, although not the only one, has been the use of genome editing technologies to modify the human germline. In such…
Intégrer l’avis de l’enfant dans les décisions de soin
Le séquençage du génome humain est de plus en plus utilisé en oncologie pédiatrique afin de diagnostiquer, de sélectionner un traitement ciblé ou un suivi adapté ou d’identifier une transmission héréditaire. Les investigations génétiques soulèvent des enjeux éthiques et juridiques qui se cristallisent autour du consentement des enfants, mais aussi de leurs parents. Il s’agirait notamment de s’assurer que la décision est prise en connaissance de c…
Idées reçues sur la génétique
Epigenetics as an interdiscipline? Promises and fallacies of a biosocial research agenda
Following the spectacular rise of epigenetics since the early 2000s, an increasing number of social scientists have called for it to be recognized as an 'interdiscipline', at the crossroads of the life sciences and the social sciences. The aim of this special issue is to advance our knowledge of epigenetics and to address three main issues: the epistemological, conceptual and empirical transformations induced by epigenetic research, the public di…
Human rights in the postgenomic era
Over the past twenty-five years, international organizations have adopted human rights declarations in an attempt to address emerging ethical, legal and social concerns associated with genetic research and technologies. While these declarations point to important challenges and potential issues in genetics, the focus on genetics has been criticized for promoting the idea that there is something unique about our genes, and that therefore, they des…
How to responsibly acknowledge research work in the era of big data and biobanks
Currently, a great deal of biomedical research in fields such as epidemiology, clinical trials and genetics is reliant on vast amounts of biological and phenotypic information collected and assembled in biobanks. While many resources are being invested to ensure that comprehensive and well-organised biobanks are able to provide increased access to, and sharing of biomedical samples and information, many barriers and challenges remain to such resp…
Legislation of direct-to-consumer genetic testing in Europe
Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland…
Producing ‘Human Elements Based Medical Technologies’ in Biotech Companies
This article is based on the findings of an EU-funded qualitative research project, entitled ‘From GMP to GBP: Fostering good bioethics practices [GBP] among the European biotechnology industry’, which seeks to improve the understanding of bioethical issues through the observation of the daily practices in European biotechnology companies and proposes a methodology approaching ethical issues. The comparative study was carried out in biotech compa…
Direct-to-consumer health genetic testing services
Online availability of direct-to-consumer health genetic testing services for various diseases and behavioural traits appears to have created a business dynamic since its beginning around the turn of the millennium. What are the marketing strategies implemented by the companies commercialising these tests and the social expectations they feed on? From a quantitative and qualitative analysis of the websites offering such tests for health, it appea…
Direct-to-consumerhealth genetic testing services
Online availability of direct-to-consumer health genetic testing services for various diseases and behavioural traits appears to have created a business dynamic since its beginning around the turn of the millennium. What are the marketing strategies implemented by the companies commercialising these tests and the social expectations they feed on? From a quantitative and qualitative analysis of the websites offering such tests for health, it appea…
The Emergence of Biobanks in the Legal Landscape
Biobanks are increasingly seen as new tools for medical research. Their main purpose is to collect, store, and distribute human body materials. These activities are regulated by legal instruments which are heterogeneous in source (national and international), and in form (binding and non‐binding). We analyse these to underline the need for a new model of governance for modern biobanks. The protection initially ensured by respect for fundamental r…
The Legal Landscape for Advanced Therapies
In 2007, the European Union adopted a lex specialis , Regulation (EC) No. 1394/2007 on advanced therapy medicinal products (ATMPs), a new legal category of medical product in regenerative medicine. The regulation applies to ATMPs prepared industrially or manufactured by a method involving an industrial process. It also provides a hospital exemption, which means that medicinal products not regulated by EU law do not benefit from a harmonized regim…
Collectionner le vivant
À l’ère des séquençages du génome humain, les collections d’échantillons biologiques associées à des données informatisées sont des outils essentiels de la recherche biomédicale. De plus en plus organisées au sein d’infrastructures spécifiques, des « biobanques » ou des « Centres de Ressources Biologiques », elles sont porteuses d’enjeux multiples. Cet article explore le travail de régulation dont les collections d’échantillons biologiques font l…
The Legal Landscape for Advanced Therapies
In 2007, the European Union adopted a lex specialis , Regulation (EC) No. 1394/2007 on advanced therapy medicinal products (ATMPs), a new legal category of medical product in regenerative medicine. The regulation applies to ATMPs prepared industrially or manufactured by a method involving an industrial process. It also provides a hospital exemption, which means that medicinal products not regulated by EU law do not benefit from a harmonized regim…
Epigenetics as an interdiscipline? Promises and fallacies of a biosocial research agenda
Following the spectacular rise of epigenetics since the early 2000s, an increasing number of social scientists have called for it to be recognized as an 'interdiscipline', at the crossroads of the life sciences and the social sciences. The aim of this special issue is to advance our knowledge of epigenetics and to address three main issues: the epistemological, conceptual and empirical transformations induced by epigenetic research, the public di…
Human rights in the postgenomic era
Over the past twenty-five years, international organizations have adopted human rights declarations in an attempt to address emerging ethical, legal and social concerns associated with genetic research and technologies. While these declarations point to important challenges and potential issues in genetics, the focus on genetics has been criticized for promoting the idea that there is something unique about our genes, and that therefore, they des…
Direct-to-consumer health genetic testing services
Online availability of direct-to-consumer health genetic testing services for various diseases and behavioural traits appears to have created a business dynamic since its beginning around the turn of the millennium. What are the marketing strategies implemented by the companies commercialising these tests and the social expectations they feed on? From a quantitative and qualitative analysis of the websites offering such tests for health, it appea…
Collectionner le vivant
À l’ère des séquençages du génome humain, les collections d’échantillons biologiques associées à des données informatisées sont des outils essentiels de la recherche biomédicale. De plus en plus organisées au sein d’infrastructures spécifiques, des « biobanques » ou des « Centres de Ressources Biologiques », elles sont porteuses d’enjeux multiples. Cet article explore le travail de régulation dont les collections d’échantillons biologiques font l…
The Emergence of Biobanks in the Legal Landscape
Biobanks are increasingly seen as new tools for medical research. Their main purpose is to collect, store, and distribute human body materials. These activities are regulated by legal instruments which are heterogeneous in source (national and international), and in form (binding and non‐binding). We analyse these to underline the need for a new model of governance for modern biobanks. The protection initially ensured by respect for fundamental r…
The Legal Landscape for Advanced Therapies
In 2007, the European Union adopted a lex specialis , Regulation (EC) No. 1394/2007 on advanced therapy medicinal products (ATMPs), a new legal category of medical product in regenerative medicine. The regulation applies to ATMPs prepared industrially or manufactured by a method involving an industrial process. It also provides a hospital exemption, which means that medicinal products not regulated by EU law do not benefit from a harmonized regim…
Producing ‘Human Elements Based Medical Technologies’ in Biotech Companies
This article is based on the findings of an EU-funded qualitative research project, entitled ‘From GMP to GBP: Fostering good bioethics practices [GBP] among the European biotechnology industry’, which seeks to improve the understanding of bioethical issues through the observation of the daily practices in European biotechnology companies and proposes a methodology approaching ethical issues. The comparative study was carried out in biotech compa…
Direct-to-consumer health genetic testing services
Online availability of direct-to-consumer health genetic testing services for various diseases and behavioural traits appears to have created a business dynamic since its beginning around the turn of the millennium. What are the marketing strategies implemented by the companies commercialising these tests and the social expectations they feed on? From a quantitative and qualitative analysis of the websites offering such tests for health, it appea…
Direct-to-consumerhealth genetic testing services
Online availability of direct-to-consumer health genetic testing services for various diseases and behavioural traits appears to have created a business dynamic since its beginning around the turn of the millennium. What are the marketing strategies implemented by the companies commercialising these tests and the social expectations they feed on? From a quantitative and qualitative analysis of the websites offering such tests for health, it appea…
How to responsibly acknowledge research work in the era of big data and biobanks
Currently, a great deal of biomedical research in fields such as epidemiology, clinical trials and genetics is reliant on vast amounts of biological and phenotypic information collected and assembled in biobanks. While many resources are being invested to ensure that comprehensive and well-organised biobanks are able to provide increased access to, and sharing of biomedical samples and information, many barriers and challenges remain to such resp…
Legislation of direct-to-consumer genetic testing in Europe
Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland…
Idées reçues sur la génétique
Epigenetics as an interdiscipline? Promises and fallacies of a biosocial research agenda
Following the spectacular rise of epigenetics since the early 2000s, an increasing number of social scientists have called for it to be recognized as an 'interdiscipline', at the crossroads of the life sciences and the social sciences. The aim of this special issue is to advance our knowledge of epigenetics and to address three main issues: the epistemological, conceptual and empirical transformations induced by epigenetic research, the public di…
Human rights in the postgenomic era
Over the past twenty-five years, international organizations have adopted human rights declarations in an attempt to address emerging ethical, legal and social concerns associated with genetic research and technologies. While these declarations point to important challenges and potential issues in genetics, the focus on genetics has been criticized for promoting the idea that there is something unique about our genes, and that therefore, they des…
Intégrer l’avis de l’enfant dans les décisions de soin
Le séquençage du génome humain est de plus en plus utilisé en oncologie pédiatrique afin de diagnostiquer, de sélectionner un traitement ciblé ou un suivi adapté ou d’identifier une transmission héréditaire. Les investigations génétiques soulèvent des enjeux éthiques et juridiques qui se cristallisent autour du consentement des enfants, mais aussi de leurs parents. Il s’agirait notamment de s’assurer que la décision est prise en connaissance de c…
Deciphering the Fragmentation of the Human Genome Editing Regulatory Landscape
Genome editing techniques have generated a growing interest following the discovery of the so-called CRISPR-Cas technique. It has raised a global uproar as regards its use in humans, especially after the 2018 announcement of a Chinese scientist who had used CRISPR to edit the genes of twin embryos. Indeed, one of the greatest concerns, although not the only one, has been the use of genome editing technologies to modify the human germline. In such…
Chapitre 6. Le déploiement de la médecine génomique
La recherche génétique repose aujourd’hui en grande partie sur la réutilisation des données génétiques issues du soin au profit de la recherche. Cette évolution des pratiques emportant une communication de plus en plus marquée entre soin et recherche vient questionner la place accordée au patient regardé comme potentiel participant à la recherche. Afin de favoriser la circulation des données génétiques générées et de permettre leur réutilisation …
Chapitre 5. From individuals to social
Dans le cadre de la médecine personnalisée, la pharmacogénomique (PGx) permet aux praticiens de délivrer le bon médicament à un patient donné, en fonction des résultats d’un test génétique. Cette pratique soulève de nombreuses questions éthiques qui sont discutées dans la littérature, parfois dans le contexte plus large de la médecine personnalisée. Cet article s’appuie sur une revue de littérature originale car interdisciplinaire et basée sur un…
The human body and the body elements—Conditions for their use in genetics under the French bioethics law and beyond
French legislation has strictly regulated genetic analysis since the adoption of the bioethics laws in 1994. Following a historical perspective, we discuss how French laws have provided a stable legal regime for access to and use of the human body and its elements until the recent revision of the laws. We present the main bioethical principles attached to the human body and their jurisprudential treatment. We balance this approach of stability by…
The Emergence of AI in Public Health Is Calling for Operational Ethics to Foster Responsible Uses
This paper discusses the responsible use of artificial intelligence (AI) in public health and in medicine, and questions the development of AI ethics in international guidelines from a public health perspective. How can a global ethics approach help conceive responsible AI development and use for improving public health? By analysing key international guidelines in AI ethics (UNESCO, WHO, European High-Level Expert Group on AI) and the available …
Political science (14 works) · Biomedical Ethics and Regulation (11 works) · Ethics in Clinical Research (10 works) · Law (10 works) · Biology (7 works) · Business (7 works) · Sociology (6 works) · Philosophy (5 works) · Engineering (4 works) · Engineering ethics (4 works)