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CNILTEXT000038848207_0
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CNILTEXT000038848207
| 0 |
DELIBERATION
|
VIGUEUR
|
Avis
|
Délibération 2019-097 du 11 juillet 2019
|
Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
|
2019-097
|
2019-07-11
|
(demande d’avis n° 19011835)
La Commission nationale de l'informatique et des libertés,
Saisie par le ministère des solidarités et de la santé d’une demande d’avis concernant un projet de loi relatif à la bioéthique ;
Vu la convention n° 108 du Conseil de l’Europe pour la protection des personnes à l’égard du traitement automatisé des données à caractère personnel ;
Vu le règlement (UE) 2016/679 du Parlement européen et du Conseil du 27 avril 2016 relatif à la protection des personnes physiques à l’égard du traitement des données à caractère personnel et à la libre circulation de ces données, et abrogeant la directive 95/46/CE (règlement général sur la protection des données) ;
Vu le code civil ;
Vu le code de la santé publique ;
Vu la loi n° 78-17 du 6 janvier 1978 modifiée relative à l’informatique, aux fichiers et aux libertés, notamment son article 8-I-4°-a) ;
Vu le décret n° 2019-536 du 29 mai 2019 pris pour l'application de la loi n° 78-17 du 6 janvier 1978 relative à l'informatique, aux fichiers et aux libertés ;
Après avoir entendu Mme Valérie PEUGEOT, commissaire, en son rapport, et Mme Nacima BELKACEM, commissaire du Gouvernement, en ses observations,
Emet l’avis suivant :
|
Délibération 2019-097 du 11 juillet 2019
(demande d’avis n° 19011835)
La Commission nationale de l'informatique et des libertés,
Saisie par le ministère des solidarités et de la santé d’une demande d’avis concernant un projet de loi relatif à la bioéthique ;
Vu la convention n° 108 du Conseil de l’Europe pour la protection des personnes à l’égard du traitement automatisé des données à caractère personnel ;
Vu le règlement (UE) 2016/679 du Parlement européen et du Conseil du 27 avril 2016 relatif à la protection des personnes physiques à l’égard du traitement des données à caractère personnel et à la libre circulation de ces données, et abrogeant la directive 95/46/CE (règlement général sur la protection des données) ;
Vu le code civil ;
Vu le code de la santé publique ;
Vu la loi n° 78-17 du 6 janvier 1978 modifiée relative à l’informatique, aux fichiers et aux libertés, notamment son article 8-I-4°-a) ;
Vu le décret n° 2019-536 du 29 mai 2019 pris pour l'application de la loi n° 78-17 du 6 janvier 1978 relative à l'informatique, aux fichiers et aux libertés ;
Après avoir entendu Mme Valérie PEUGEOT, commissaire, en son rapport, et Mme Nacima BELKACEM, commissaire du Gouvernement, en ses observations,
Emet l’avis suivant :
|
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CNILTEXT000038848207_1
|
CNILTEXT000038848207
| 1 |
DELIBERATION
|
VIGUEUR
|
Avis
|
Délibération 2019-097 du 11 juillet 2019
|
Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
|
2019-097
|
2019-07-11
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Après avoir entendu Mme Valérie PEUGEOT, commissaire, en son rapport, et Mme Nacima BELKACEM, commissaire du Gouvernement, en ses observations,
Emet l’avis suivant :
La Commission a été saisie le 14 juin 2019 par le ministère des solidarités et de la santé, en application de l’article 8-I-4°-a) de la loi n° 78-17 du 6 janvier 1978 modifiée, d’une demande d’avis portant sur quatre mesures du projet de loi relatif à la bioéthique (ci-après le projet ) entrant dans le champ des missions exercées par la Commission. L’urgence a été invoquée par le gouvernement, conformément aux dispositions de l’article 9-I du décret n° 2019-536 du 29 mai 2019 pris pour l'application de la loi n° 78-17 du 6 janvier 1978 relative à l'informatique, aux fichiers et aux libertés.
Le projet de loi relatif à la bioéthique a été précédé de l’avis 129 portant contribution du Comité consultatif national d’éthique à la révision de la loi de bioéthique du 18 septembre 2018. Une étude, sous la forme d’un rapport intitulé Révision de la loi de bioéthique : quelles options pour demain ? a également été menée, à la demande du Premier ministre, par le Conseil d’Etat ; elle a été adoptée en assemblée générale le 28 juin 2018.
Les quatre mesures du projet de loi, soumises à l’examen de la Commission, visent à :
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Délibération 2019-097 du 11 juillet 2019
Après avoir entendu Mme Valérie PEUGEOT, commissaire, en son rapport, et Mme Nacima BELKACEM, commissaire du Gouvernement, en ses observations,
Emet l’avis suivant :
La Commission a été saisie le 14 juin 2019 par le ministère des solidarités et de la santé, en application de l’article 8-I-4°-a) de la loi n° 78-17 du 6 janvier 1978 modifiée, d’une demande d’avis portant sur quatre mesures du projet de loi relatif à la bioéthique (ci-après le projet ) entrant dans le champ des missions exercées par la Commission. L’urgence a été invoquée par le gouvernement, conformément aux dispositions de l’article 9-I du décret n° 2019-536 du 29 mai 2019 pris pour l'application de la loi n° 78-17 du 6 janvier 1978 relative à l'informatique, aux fichiers et aux libertés.
Le projet de loi relatif à la bioéthique a été précédé de l’avis 129 portant contribution du Comité consultatif national d’éthique à la révision de la loi de bioéthique du 18 septembre 2018. Une étude, sous la forme d’un rapport intitulé Révision de la loi de bioéthique : quelles options pour demain ? a également été menée, à la demande du Premier ministre, par le Conseil d’Etat ; elle a été adoptée en assemblée générale le 28 juin 2018.
Les quatre mesures du projet de loi, soumises à l’examen de la Commission, visent à :
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CNILTEXT000038848207_2
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CNILTEXT000038848207
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DELIBERATION
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VIGUEUR
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Avis
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Délibération 2019-097 du 11 juillet 2019
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Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
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2019-097
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2019-07-11
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Les quatre mesures du projet de loi, soumises à l’examen de la Commission, visent à :
déterminer le cadre à appliquer aux traitements de données à caractère personnel constitués par l’Agence de la biomédecine et la Commission d’accès aux données non identifiantes et à l’identité du tiers donneur aux fins de permettre l’exercice du droit d’accès aux origines de l’enfant conçu à partir d’un don de gamètes ou d’embryons (articles 3 et 3 bis du projet) ;
sécuriser la bonne information du patient lorsqu’un traitement algorithmique de données massives est utilisé à l’occasion d’un acte de soins (article 11 du projet) ;
modifier les dispositions de la loi informatique et libertés concernant les modalités d’examen des caractéristiques génétiques à des fins de recherche scientifique (article 18 du projet) ;
notamment organiser de manière sécurisée la transmission des résultats d’analyses génétiques au laboratoire autorisé par l’Agence régionale de santé directement au prescripteur (article 25 du projet).
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Délibération 2019-097 du 11 juillet 2019
Les quatre mesures du projet de loi, soumises à l’examen de la Commission, visent à :
déterminer le cadre à appliquer aux traitements de données à caractère personnel constitués par l’Agence de la biomédecine et la Commission d’accès aux données non identifiantes et à l’identité du tiers donneur aux fins de permettre l’exercice du droit d’accès aux origines de l’enfant conçu à partir d’un don de gamètes ou d’embryons (articles 3 et 3 bis du projet) ;
sécuriser la bonne information du patient lorsqu’un traitement algorithmique de données massives est utilisé à l’occasion d’un acte de soins (article 11 du projet) ;
modifier les dispositions de la loi informatique et libertés concernant les modalités d’examen des caractéristiques génétiques à des fins de recherche scientifique (article 18 du projet) ;
notamment organiser de manière sécurisée la transmission des résultats d’analyses génétiques au laboratoire autorisé par l’Agence régionale de santé directement au prescripteur (article 25 du projet).
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CNILTEXT000038848207_3
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CNILTEXT000038848207
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DELIBERATION
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VIGUEUR
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Avis
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Délibération 2019-097 du 11 juillet 2019
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Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
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2019-097
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2019-07-11
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À titre liminaire, la Commission souhaite indiquer que, sans remettre en cause la légitimité des nouvelles mesures introduites par le projet de loi, des garanties suffisantes au regard du respect des principes fondamentaux du droit à la protection des données à caractère personnel doivent être mises en œuvre. Elle estime que des mesures juridiques et techniques adaptées devront être prévues afin d’assurer un haut niveau de protection des données. Elle formule, dans ce contexte, les observations suivantes :
Sur l’assistance médicale à la procréation (art. 3 et 3 bis du projet de loi) :
Concernant la transmission de données de santé à caractère personnel des enfants conçus au bénéfice des donneurs de gamètes :
Les articles 3 et 3 bis du projet de loi ouvrent la possibilité, pour un médecin, d’accéder aux informations médicales non identifiantes , en cas de nécessité médicale, au bénéfice d’un donneur de gamètes. Le gouvernement a précisé que ce dispositif a pour objectif de permettre à un médecin, qui assure la prise en charge sanitaire d’un donneur de gamètes, de contacter un médecin du Centre d’étude et de conservation des œufs et du sperme (CECOS) pour obtenir des informations de nature médicale relatives aux enfants nés de dons qui seraient utiles au suivi sanitaire du donneur, à l’exclusion des informations susceptibles d’identifier le(s) enfant(s) conçu(s).
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Délibération 2019-097 du 11 juillet 2019
À titre liminaire, la Commission souhaite indiquer que, sans remettre en cause la légitimité des nouvelles mesures introduites par le projet de loi, des garanties suffisantes au regard du respect des principes fondamentaux du droit à la protection des données à caractère personnel doivent être mises en œuvre. Elle estime que des mesures juridiques et techniques adaptées devront être prévues afin d’assurer un haut niveau de protection des données. Elle formule, dans ce contexte, les observations suivantes :
Sur l’assistance médicale à la procréation (art. 3 et 3 bis du projet de loi) :
Concernant la transmission de données de santé à caractère personnel des enfants conçus au bénéfice des donneurs de gamètes :
Les articles 3 et 3 bis du projet de loi ouvrent la possibilité, pour un médecin, d’accéder aux informations médicales non identifiantes , en cas de nécessité médicale, au bénéfice d’un donneur de gamètes. Le gouvernement a précisé que ce dispositif a pour objectif de permettre à un médecin, qui assure la prise en charge sanitaire d’un donneur de gamètes, de contacter un médecin du Centre d’étude et de conservation des œufs et du sperme (CECOS) pour obtenir des informations de nature médicale relatives aux enfants nés de dons qui seraient utiles au suivi sanitaire du donneur, à l’exclusion des informations susceptibles d’identifier le(s) enfant(s) conçu(s).
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CNILTEXT000038848207_4
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CNILTEXT000038848207
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DELIBERATION
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VIGUEUR
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Avis
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Délibération 2019-097 du 11 juillet 2019
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Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
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2019-097
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2019-07-11
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En premier lieu, la Commission indique que les informations médicales non identifiantes contenues dans les dossiers des CECOS constituent des données de santé à caractère personnel conformément aux dispositions de l’article 4-15) du RGPD. Elle relève qu’un médecin qui demande, au titre du suivi sanitaire d’un donneur, la transmission des données de santé d’un enfant conçu à partir d’un don n’intervient pas, en vertu de l’article L. 1110-4 du code de la santé publique (CSP), en qualité de membre de l’équipe de soins de l’enfant conçu. Elle observe également, toujours par application de l’article L. 1110-4 précité, que les conditions d’échange et de partage des données de santé sont strictement définies et que lesdites données sont protégées par le secret médical, excepté dans les cas de dérogation expressément prévus par la loi. Elle ajoute que seule une mesure législative est de nature à rendre inapplicables les dispositions du code pénal relatives aux sanctions attachées à la divulgation d’une information protégée par le secret médical. Sur cette base, elle relève que le projet de loi relatif à la bioéthique donne une base légale suffisante à la transmission des données de santé à caractère personnel de l’enfant conçu au médecin du tiers donneur.
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Délibération 2019-097 du 11 juillet 2019
En premier lieu, la Commission indique que les informations médicales non identifiantes contenues dans les dossiers des CECOS constituent des données de santé à caractère personnel conformément aux dispositions de l’article 4-15) du RGPD. Elle relève qu’un médecin qui demande, au titre du suivi sanitaire d’un donneur, la transmission des données de santé d’un enfant conçu à partir d’un don n’intervient pas, en vertu de l’article L. 1110-4 du code de la santé publique (CSP), en qualité de membre de l’équipe de soins de l’enfant conçu. Elle observe également, toujours par application de l’article L. 1110-4 précité, que les conditions d’échange et de partage des données de santé sont strictement définies et que lesdites données sont protégées par le secret médical, excepté dans les cas de dérogation expressément prévus par la loi. Elle ajoute que seule une mesure législative est de nature à rendre inapplicables les dispositions du code pénal relatives aux sanctions attachées à la divulgation d’une information protégée par le secret médical. Sur cette base, elle relève que le projet de loi relatif à la bioéthique donne une base légale suffisante à la transmission des données de santé à caractère personnel de l’enfant conçu au médecin du tiers donneur.
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CNILTEXT000038629823_31
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CNILTEXT000038629823
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DELIBERATION
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VIGUEUR
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Sanction
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Délibération SAN-2019-006 du 13 juin 2019
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Délibération de la formation restreinte n° SAN-2019-006 du 13 juin 2019 prononçant une sanction à l’encontre de la société X
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SAN-2019-006
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2019-06-13
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65. L’article 83 du RGPD prévoit :
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Délibération SAN-2019-006 du 13 juin 2019
65. L’article 83 du RGPD prévoit :
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CNILTEXT000038848207_5
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CNILTEXT000038848207
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DELIBERATION
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VIGUEUR
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Avis
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Délibération 2019-097 du 11 juillet 2019
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Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
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2019-097
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2019-07-11
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En deuxième lieu, s’agissant de la notion de données non identifiantes , la Commission invite à se reporter aux développements ci-dessous concernant la nature des données collectées. Elle attire en conséquence l’attention du gouvernement sur les risques possibles de ré-identification de l’enfant né du don qui résulteraient de la transmission desdites données.
En troisième lieu, elle s’interroge sur les modalités pratiques de mise en œuvre de ces dispositions, notamment s’agissant de la manière dont les données seront communiquées au donneur depuis les bases des CECOS, ainsi que sur le fait de savoir si les enfants ou les titulaires de l’autorité parentale seront informés de l’accès effectif à des données concernant les enfants par le donneur, accès pouvant à tout le moins générer des interrogations sur l’état de santé de l’enfant. Par ailleurs, la Commission s’interroge sur la nature et les modalités de collecte des données s’agissant du suivi de l’état de santé des enfants issus de dons par les CECOS.
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Délibération 2019-097 du 11 juillet 2019
En deuxième lieu, s’agissant de la notion de données non identifiantes , la Commission invite à se reporter aux développements ci-dessous concernant la nature des données collectées. Elle attire en conséquence l’attention du gouvernement sur les risques possibles de ré-identification de l’enfant né du don qui résulteraient de la transmission desdites données.
En troisième lieu, elle s’interroge sur les modalités pratiques de mise en œuvre de ces dispositions, notamment s’agissant de la manière dont les données seront communiquées au donneur depuis les bases des CECOS, ainsi que sur le fait de savoir si les enfants ou les titulaires de l’autorité parentale seront informés de l’accès effectif à des données concernant les enfants par le donneur, accès pouvant à tout le moins générer des interrogations sur l’état de santé de l’enfant. Par ailleurs, la Commission s’interroge sur la nature et les modalités de collecte des données s’agissant du suivi de l’état de santé des enfants issus de dons par les CECOS.
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CNILTEXT000038848207_6
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CNILTEXT000038848207
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DELIBERATION
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VIGUEUR
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Avis
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Délibération 2019-097 du 11 juillet 2019
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Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
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2019-097
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2019-07-11
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La Commission prend enfin acte que les articles 3 et 3 bis du projet suppriment le renvoi aux dispositions de la loi informatique et libertés , auquel il est aujourd’hui procédé, en ce qui concerne les formalités à réaliser et les pouvoirs de la Commission sur les traitements constitués. Dès lors que cette suppression n’emporte pas de conséquence sur l’obligation pour les responsables de traitement de respecter les dispositions du RGPD et de la loi informatique et libertés , celle-ci n’appelle pas d’observation particulière de la part de la Commission.
Concernant les traitements de données à caractère personnel constitués aux fins d’exercice du droit d’accès aux origines des enfants issus d’un don
Le projet de loi relatif à la bioéthique entend instituer le droit, pour l’enfant conçu par assistance médicale à la procréation avec tiers donneur, d’accéder à sa majorité à ses origines dès lors qu’il en fait la demande. A cette fin, il octroie à l’Agence de la biomédecine une compétence nouvelle : celle de mettre en œuvre un traitement de données à caractère personnel collectant les données nécessaires à l’exercice de ce droit. Il crée en outre une commission ad hoc, placée auprès du ministre chargé de la santé, responsable de la gestion des demandes d’accès aux données non identifiantes et à l’identité du donneur.
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Délibération 2019-097 du 11 juillet 2019
La Commission prend enfin acte que les articles 3 et 3 bis du projet suppriment le renvoi aux dispositions de la loi informatique et libertés , auquel il est aujourd’hui procédé, en ce qui concerne les formalités à réaliser et les pouvoirs de la Commission sur les traitements constitués. Dès lors que cette suppression n’emporte pas de conséquence sur l’obligation pour les responsables de traitement de respecter les dispositions du RGPD et de la loi informatique et libertés , celle-ci n’appelle pas d’observation particulière de la part de la Commission.
Concernant les traitements de données à caractère personnel constitués aux fins d’exercice du droit d’accès aux origines des enfants issus d’un don
Le projet de loi relatif à la bioéthique entend instituer le droit, pour l’enfant conçu par assistance médicale à la procréation avec tiers donneur, d’accéder à sa majorité à ses origines dès lors qu’il en fait la demande. A cette fin, il octroie à l’Agence de la biomédecine une compétence nouvelle : celle de mettre en œuvre un traitement de données à caractère personnel collectant les données nécessaires à l’exercice de ce droit. Il crée en outre une commission ad hoc, placée auprès du ministre chargé de la santé, responsable de la gestion des demandes d’accès aux données non identifiantes et à l’identité du donneur.
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CNILTEXT000038848207_7
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CNILTEXT000038848207
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DELIBERATION
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VIGUEUR
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Avis
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Délibération 2019-097 du 11 juillet 2019
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Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
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2019-097
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2019-07-11
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A titre liminaire, la Commission souhaite préciser que le droit pour un enfant d’accéder à ses origines et de se voir, en conséquence, communiquer des données à caractère personnel relatives au tiers donneur doit être distingué du droit d’accès de la personne concernée à des données le concernant tel que prévu par les dispositions de l’article 15 du RGPD.
Sur les modalités retenues pour le traitement des données à caractère personnel transmises par les CECOS à l’Agence de la biomédecine, ainsi que les traitements constitués par cette agence et la commission d’accès aux données non identifiantes et à l’identité du donneur aux fins de permettre l’accès des enfants conçus à leurs origines, le projet de loi propose deux orientations distinctes correspondant à des scenarii présentés respectivement aux articles 3 et 3 bis :
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Délibération 2019-097 du 11 juillet 2019
A titre liminaire, la Commission souhaite préciser que le droit pour un enfant d’accéder à ses origines et de se voir, en conséquence, communiquer des données à caractère personnel relatives au tiers donneur doit être distingué du droit d’accès de la personne concernée à des données le concernant tel que prévu par les dispositions de l’article 15 du RGPD.
Sur les modalités retenues pour le traitement des données à caractère personnel transmises par les CECOS à l’Agence de la biomédecine, ainsi que les traitements constitués par cette agence et la commission d’accès aux données non identifiantes et à l’identité du donneur aux fins de permettre l’accès des enfants conçus à leurs origines, le projet de loi propose deux orientations distinctes correspondant à des scenarii présentés respectivement aux articles 3 et 3 bis :
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CNILTEXT000038848207_8
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CNILTEXT000038848207
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DELIBERATION
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VIGUEUR
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Avis
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Délibération 2019-097 du 11 juillet 2019
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Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
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2019-097
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2019-07-11
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L’article 3 du projet de loi énonce que l’accès à des données non identifiantes relatives à un tiers donneur (âge, état de santé au moment du don, caractéristiques physiques, situation familiale ou professionnelle, pays de naissance, motivations au don) et, si l’enfant le souhaite, à l’identité de ce tiers exige : le consentement exprès du tiers donneur à la communication de ces données et de son identité (…) recueilli au moment de son don . Le gouvernement a précisé que le consentement du tiers donneur au don emporte son consentement à la transmission de ses données non identifiantes et de son identité à la personne majeure conçue par assistance médicale à la procréation qui les demanderait à partir de sa majorité. La personne majeure peut soit demander uniquement l’accès aux données non identifiantes, soit l’accès à l’identité, soit les deux . Si cette option rédactionnelle devait être maintenue, la Commission demande que le fait, pour le donneur, de consentir à effectuer un don emporte consentement à donner accès à son identité soit clairement précisé dans le projet.
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Délibération 2019-097 du 11 juillet 2019
L’article 3 du projet de loi énonce que l’accès à des données non identifiantes relatives à un tiers donneur (âge, état de santé au moment du don, caractéristiques physiques, situation familiale ou professionnelle, pays de naissance, motivations au don) et, si l’enfant le souhaite, à l’identité de ce tiers exige : le consentement exprès du tiers donneur à la communication de ces données et de son identité (…) recueilli au moment de son don . Le gouvernement a précisé que le consentement du tiers donneur au don emporte son consentement à la transmission de ses données non identifiantes et de son identité à la personne majeure conçue par assistance médicale à la procréation qui les demanderait à partir de sa majorité. La personne majeure peut soit demander uniquement l’accès aux données non identifiantes, soit l’accès à l’identité, soit les deux . Si cette option rédactionnelle devait être maintenue, la Commission demande que le fait, pour le donneur, de consentir à effectuer un don emporte consentement à donner accès à son identité soit clairement précisé dans le projet.
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CNILTEXT000038848207_9
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CNILTEXT000038848207
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DELIBERATION
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VIGUEUR
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Avis
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Délibération 2019-097 du 11 juillet 2019
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Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
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2019-097
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2019-07-11
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L’article 3 bis du projet de loi prévoit que l’accès aux données non identifiantes du donneur, à l’exception de celles qui permettraient manifestement son identification , est systématique dès lors que l’enfant, devenu majeur, en fait la demande. Le tiers donneur pourrait alors s’opposer au recueil des informations non identifiantes portant uniquement sur sa situation familiale et professionnelle, sur son pays de naissance et sur sa motivation concernant le don. L’enfant pourrait également (…) accéder à l’identité du tiers donneur, sous réserve du consentement exprès, au moment de la demande (…). Le gouvernement a par ailleurs précisé que le consentement au don emporte le consentement du tiers donneur à la transmission de ces données non identifiantes . La Commission relève que le choix de cette option rédactionnelle est susceptible de créer une différence de traitement entre les enfants pour lesquels le donneur a consenti à l’accès aux données identifiantes le concernant et les enfants pour lesquels le donneur n’aura pas donné son consentement.
La Commission indique que, bien qu’elle ne se prononce que sur les scenarii présentés dans le projet de loi dont elle est saisie, d’autres options plus protectrices des droits des personnes concernées auraient pu être envisagées, notamment en limitant la transmission des données concernant les donneurs à l’Agence de la biomédecine aux cas dans lesquels ils auraient consenti à ce que les enfants conçus y aient accès.
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Délibération 2019-097 du 11 juillet 2019
L’article 3 bis du projet de loi prévoit que l’accès aux données non identifiantes du donneur, à l’exception de celles qui permettraient manifestement son identification , est systématique dès lors que l’enfant, devenu majeur, en fait la demande. Le tiers donneur pourrait alors s’opposer au recueil des informations non identifiantes portant uniquement sur sa situation familiale et professionnelle, sur son pays de naissance et sur sa motivation concernant le don. L’enfant pourrait également (…) accéder à l’identité du tiers donneur, sous réserve du consentement exprès, au moment de la demande (…). Le gouvernement a par ailleurs précisé que le consentement au don emporte le consentement du tiers donneur à la transmission de ces données non identifiantes . La Commission relève que le choix de cette option rédactionnelle est susceptible de créer une différence de traitement entre les enfants pour lesquels le donneur a consenti à l’accès aux données identifiantes le concernant et les enfants pour lesquels le donneur n’aura pas donné son consentement.
La Commission indique que, bien qu’elle ne se prononce que sur les scenarii présentés dans le projet de loi dont elle est saisie, d’autres options plus protectrices des droits des personnes concernées auraient pu être envisagées, notamment en limitant la transmission des données concernant les donneurs à l’Agence de la biomédecine aux cas dans lesquels ils auraient consenti à ce que les enfants conçus y aient accès.
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CNILTEXT000038848207_10
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CNILTEXT000038848207
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DELIBERATION
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VIGUEUR
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Avis
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Délibération 2019-097 du 11 juillet 2019
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Délibération n° 2019-097 du 11 juillet 2019 portant avis sur un projet de loi relatif à la bioéthique
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2019-097
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2019-07-11
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S’agissant des traitements de données dont la mise en œuvre est envisagée, la Commission note que trois catégories de traitements de données à caractère personnel interviennent dans le dispositif d’accès aux origines prévu par le projet :
les traitements mis en œuvre par chacun des CECOS, dont la finalité principale est la gestion des dons de gamètes et d’embryons dans le cadre de l’assistance médicale à la procréation. La transmission des données relatives aux donneurs et aux enfants conçus à l’Agence de la biomédecine constitue une finalité nouvelle et accessoire à ces traitements ;
le traitement mis en œuvre par l’Agence de la biomédecine, dont la finalité est la collecte et la conservation des données nécessaires à l’accès aux origines des enfants conçus ;
le traitement mis en œuvre par la Commission d’accès aux données non identifiantes et à l’identité du tiers donneur, dont la finalité est la gestion des demandes d’accès aux origines.
Concernant la base légale à retenir pour les traitements de données à caractère personnel constitués et les formalités à accomplir :
Se fondant sur les précisions apportées par le gouvernement, la Commission prend acte que les articles 3 et 3 bis du projet de loi relatif à la bioéthique imposent la transmission des données des tiers donneurs par les CECOS à l’Agence de la biomédecine et à la commission d’accès aux données non identifiantes et à l’identité du donneur.
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Délibération 2019-097 du 11 juillet 2019
S’agissant des traitements de données dont la mise en œuvre est envisagée, la Commission note que trois catégories de traitements de données à caractère personnel interviennent dans le dispositif d’accès aux origines prévu par le projet :
les traitements mis en œuvre par chacun des CECOS, dont la finalité principale est la gestion des dons de gamètes et d’embryons dans le cadre de l’assistance médicale à la procréation. La transmission des données relatives aux donneurs et aux enfants conçus à l’Agence de la biomédecine constitue une finalité nouvelle et accessoire à ces traitements ;
le traitement mis en œuvre par l’Agence de la biomédecine, dont la finalité est la collecte et la conservation des données nécessaires à l’accès aux origines des enfants conçus ;
le traitement mis en œuvre par la Commission d’accès aux données non identifiantes et à l’identité du tiers donneur, dont la finalité est la gestion des demandes d’accès aux origines.
Concernant la base légale à retenir pour les traitements de données à caractère personnel constitués et les formalités à accomplir :
Se fondant sur les précisions apportées par le gouvernement, la Commission prend acte que les articles 3 et 3 bis du projet de loi relatif à la bioéthique imposent la transmission des données des tiers donneurs par les CECOS à l’Agence de la biomédecine et à la commission d’accès aux données non identifiantes et à l’identité du donneur.
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🇫🇷 CNIL Deliberations Dataset
This dataset is a processed and embedded version of the official deliberations and decisions published by the CNIL (Commission Nationale de l’Informatique et des Libertés), the French data protection authority.
It includes a variety of legal documents such as opinions, recommendations, simplified norms, general authorizations, and formal decisions.
The original data is downloaded from the dedicated DILA open data repository and the dataset is also available in data.gouv.fr (Les délibérations de la CNIL) .
The dataset provides semantic-ready, structured and chunked data making the dataset suitable for semantic search, AI legal assistants, or RAG pipelines for example.
These chunks have then been embedded using the BAAI/bge-m3
model.
🗂️ Dataset Contents
The dataset is provided in Parquet format and includes the following columns:
Column Name | Type | Description |
---|---|---|
chunk_id |
str |
Unique identifier for each chunk. |
cid |
str |
Internal identifier of the deliberation. |
chunk_number |
int |
Index of the chunk within the same deliberation document. |
nature |
str |
Type of act (e.g., deliberation, decision...). |
status |
str |
Status of the document (e.g., vigueur, vigueur_diff). |
nature_delib |
str |
Specific nature of the deliberation. |
title |
str |
Title of the deliberation or decision. |
full_title |
str |
Full title of the deliberation or decision. |
number |
str |
Official reference number. |
date |
str |
Date of publication (format: YYYY-MM-DD). |
text |
str |
Raw text content of the chunk extracted from the deliberation or decision |
chunk_text |
str |
Formatted text chunk used for embedding (includes title + content). |
embeddings_bge-m3 |
str |
Embedding vector of chunk_text using BAAI/bge-m3 , stored as JSON string. |
🛠️ Data Processing Methodology
1. 📥 Field Extraction
Data was extracted from the the dedicated DILA open data repository.
The following transformations were applied:
- Basic fields:
cid
,title
,full_title
,number
,date
,nature
,status
,nature_delib
, were taken directly from the source XML file. - Generated fields:
chunk_id
: A unique hash for each text chunk.chunk_number
: Indicates the order of a chunk within a same deliberation.
- Textual fields:
text
: Chunk of the main text content.chunk_text
: Combinestitle
and the maintext
body to maximize embedding relevance.
2. ✂️ Text Chunking
The value includes the title
and the textual content chunk text
.
This strategy is designed to improve semantic search for document search use cases on administrative procedures.
The Langchain's RecursiveCharacterTextSplitter
function was used to make these chunks (text
value). The parameters used are :
chunk_size
= 1500 (in order to maximize the compability of most LLMs context windows)chunk_overlap
= 200length_function
= len
🧠 3. Embeddings Generation
Each chunk_text
was embedded using the BAAI/bge-m3
model. The resulting embedding vector is stored in the embeddings_bge-m3
column as a string, but can easily be parsed back into a list[float]
or NumPy array.
📌 Embedding Use Notice
⚠️ The embeddings_bge-m3
column is stored as a stringified list of floats (e.g., "[-0.03062629,-0.017049594,...]"
).
To use it as a vector, you need to parse it into a list of floats or NumPy array. For example, if you want to load the dataset into a dataframe :
import pandas as pd
import json
df = pd.read_parquet("cnil-latest.parquet")
df["embeddings_bge-m3"] = df["embeddings_bge-m3"].apply(json.loads)
📚 Source & License
🔗 Source :
📄 Licence :
Open License (Etalab) — This dataset is publicly available and can be reused under the conditions of the Etalab open license.
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