Virtue can be seen as a core construct of pastoral theology when it is understood as a relational dynamic which includes the experience of suffering and the pastoral response of compassion. This thesis probes the philosophical theology of Jonathan Edwards, who proposed that virtue is a form of beauty defined as "consent to being." Edwards' construct of virtue is examined from its inception in his pastoral work at Northampton parish. Although it was offered in the context of the 18th century debates in moral philosophy, it is argued that Edwards' idea of virtue is a unique theological contribution to our understanding of the nature of virtue. The implications of this conception of virtue are weighed against current discussions in ethics and moral philosophy on the theme of virtue. Edwards' idea of "consent to being" is expanded from a pastoral theological perspective to include the notion of compassion as an integrative motif. The structure of experience and how we speak about our experiences are explored in relation to this aesthetic understanding of virtue as a form of beauty. This leads to the notion of compassion as ontological consent. Since language is the vehicle by which our experiences are conveyed, the thesis probes the issue of how moral vision is expressed in "experience-near" language through parable, poem, and lament. Moral vision is articulated most adequately through such language, the formulation of which takes the form of a necessary quest. The thesis concludes with a constructive proposal concerning a mature pastoral theology of virtue. This may be seen as an expansion of Edwards' concept of "consent to being" from the vantage point of pastoral theology. It is argued that a dynamic vision of virtue requires some connection between the experience of suffering and the inward striving toward the greatest good. The essence of virtue can be best understood, from a pastoral theological perspective, as the relational dynamic of "suffering with" another human being. / Practical Theology / D.Th. (Practical Theology)

Thesis (LLD (Public Law))--University of Stellenbosch, 2010. / ENGLISH ABSTRACT: The unique and intimate relationship that exists between a medical practitioner and his/her client is possibly one of the most important relationships that can come into being between any two people. This relationship is characterised and influenced by the qualities and attributes specific to the nature and historical development of medical care, as well as medical science in general. The doctor-patient relationship is also influenced by the social dynamics of a particular community, environmental factors, technological advances and the general social and commercial evolution of the human race. With regard to medical care and health service delivery, the doctor-patient relationship is furthermore vital to the quality of the care provided, as well as to the outcomes and relative success of the specific medical intervention or treatment. One of the distinct characteristics of the doctor-patient relationship is the power imbalance inherent in this relationship. The medical practitioner has expert knowledge and skill, while the patient finds himself or herself in an unusually dependent and vulnerable position. It is because of this important role that the doctor-patient relationship still plays in health service delivery today; the susceptibility of the relationship to a variety of influences, and the characteristic power imbalances inherent in this relationship, that a study of the doctor-patient relationship in South African medical- and health law is necessary. The characteristic power imbalances will be considered from a legal perspective in this dissertation. This study provides a comprehensive source of the doctor-patient relationship from a legal perspective. Where relevant, references are made to theories and principles from other disciplines, including sociology, economy and medical ethnomethodology. The prevalence and consequences of power imbalances in the doctor-patient relationship are identified and discussed with the aim of bringing these to the attention of both the legal fraternity, and medical practitioners. Specific problem areas are identified and solutions are offered, including the following: • The adverse consequences of power imbalances inherent in the doctor-patient relationship on the medical decision-making process are considered from various perspectives. With regard to these adverse consequences, the doctrine of informed consent is analysed and evaluated in great detail. • The influence of paternalistic notions in health service delivery; the business model of health service delivery and the effects of managed care and consumer-directed health care on the doctor-patient relationship and health service delivery in general are also analysed from a legal perspective, and specifically with regard to the power imbalances inherent in this relationship. • The role of autonomy, self-determination and dignity, as well as the principles of beneficence in medical practice, are reconsidered in an attempt to provide a solution for redressing the power imbalances inherent in the doctor-patient relationship. • The fiduciary nature of the doctor-patient relationship and the special role of trust in the relationship are emphasised throughout the dissertation as the focal point of departure in the doctor-patient relationship and the main constituent in any legal endeavor to redress the power imbalances inherent in it. / AFRIKAANS OPSOMMING: Die unieke en intieme verhouding wat bestaan tussen ‘n mediese praktisyn en ‘n pasiënt is wêreldwyd waarskynlik een van die belangrikste verhoudings wat tussen twee persone tot stand kan kom. Hierdie verhouding word gekenmerk en beïnvloed deur kwaliteite en eienskappe eie aan die besonderse aard en historiese ontwikkeling van gesondheidsorg, sowel as die mediese wetenskap in die algemeen. Die dokter-pasiënt verhouding word verder beïnvloed deur die sosiale dinamika van ‘n bepaalde gemeenskap, omgewingsfaktore, tegnologiese vooruitgang en die algemene sosiale en kommersiële ontwikkeling van die mensdom. Op die terrein van gesondheidsorg en mediese dienslewering is die dokter-pasiënt verhouding voorts ook sentraal tot die kwaliteit van die mediese sorg wat verskaf word, sowel as die uitkomste en relatiewe sukses van die spesifieke mediese behandeling. Een van die kenmerkende eienskappe van die dokter-pasiënt verhouding is die magswanbalans wat daar tussen dokter en pasiënt bestaan. Die mediese praktisyn beskik oor deskundige kennis en vaardighede, terwyl die pasiënt hom- of haarself in ‘n ongewone, afhanklike en kwesbare posisie bevind. Dit is dan veral weens die besondere rol wat hierdie verhouding steeds in hedendaagse gesondheidsorg speel, die beïnvloedbaarheid van hierdie verhouding deur ‘n verskeidenheid faktore, sowel as die kenmerkende magswanbalans inherent in die verhouding, dat ‘n ondersoek na die dokter-pasiënt verhouding in die Suid-Afrikaanse mediese reg noodsaaklik is. Hierdie kenmerkende magswanbalans sal vanuit ‘n regsperspektief verder in hierdie proefskrif ondersoek word. Hierdie studie bied ‘n omvattende bron van die dokter-pasiënt verhouding benader vanuit ‘n regsperspektief, terwyl verwysings na teorieë en beginsels van ander dissiplines soos die sosiologie, ekonomie en mediese etnometodologie ook waar nodig ingesluit word. Die voorkoms en gevolge van ‘n magswanbalans in die dokter-pasiënt verhouding word verder geïdentifiseer en bespreek ten einde dit onder die aandag te bring van beide regslui en medici. Spesifieke probleemareas wat geïdentifiseer is en die oplossings wat daarvoor aan die hand gedoen is sluit die volgende in: • Die nadelige gevolge van die bestaan van ‘n magswanbalans in die dokter-pasiënt verhouding op die mediese-besluitnemingsproses word bespreek vanuit verskillende persepktiewe. Met betrekking tot hierdie nadelige gevolge, word die leerstuk van ingeligte toestemming in besonder geanaliseer en geëvalueer. • Die invloed van ‘n paternalistiese benadering tot gesondheidsorg, die besigheids-model van gesondheidsorg, en die effek van bestuurde- en verbruikersgedrewe gesondheidsorg inisiatiewe op die dokter-pasiënt verhouding en die verskaffing van gesondheidsdienste in die algemeen word ook vanuit ‘n regsperspektief ge-analiseer. Spesifieke aandag word in dié verband gegee aan die invloede van hierdie benaderings en perspektiewe op die magswanbalans inherent aan die dokter-pasiënt verhouding. • Die besondere rol van autonomie, selfbeskikking en menswaardigheid, asook die beginsels van weldadigheid in gesondheidsorg, word heroorweeg in ‘n poging om ‘n meer gelyke distribusie van mag in die dokter-pasiënt verhouding te verseker. • Die fidusiêre aard van die dokter-pasiënt verhouding en die besondere rol wat vertroue in hierdie verhouding speel, word in hierdie proefskrif beklemtoon en word voorts as die basis van die dokter-pasiënt verhouding beskou. Vertroue, as ‘n kenmerk van die dokter-pasiënt verhouding, behoort ook die fokuspunt te wees van enige poging om die magswanbalans in die dokter-pasiënt verhouding aan te spreek.

A quantitative descriptive study was conducted to establish professional nurses’ and patients’ knowledge and understanding of laparoscopic surgery and to determine whether nurses are sufficiently knowledgeable to disseminate adequate information about laparoscopic surgery to patients. Two state hospitals based in KwaZulu-Natal where laparoscopic surgery is done were selected and the respondents were selected through convenience sampling. Data were collected by administering questionnaires to theatre nurses (n=39), ward nurses (n=87) and patients (n=42) scheduled for laparoscopic surgery. The SPSS version 15 for Windows was used to compute the results. The findings revealed that the professional nurses were not sufficiently knowledgeable about laparoscopic surgery to give adequate information to patients and the patients themselves were not fully informed about all aspects of laparoscopic surgery including the possibility of conversion to open surgery, complications and advantages and after care. There is therefore a dire need for improvement of patient education to assist patients gaining optimal recovery / Health Studies / M.A. (Health Studies)

Background: Direct-to-consumer (DTC) genetic tests are tests sold directly to consumers, normally without the involvement of healthcare professionals, which aim to provide consumers with their relative genetic risk for various complex diseases. Providers claim that this information will enable and encourage consumers to improve their health behaviour in order to reduce their likelihood of contracting diseases for which they are at an increased genetic risk. However, there are many criticisms and concerns about DTC genetic tests in the literature. Two common concerns are the lack of positive effects, and possible negative effects, that the information generated by the tests may have on consumers health behaviour and health anxiety, and the identified poor quality of information provision on the websites of providers of DTC genetic tests. Although the literature contains some research in these areas it is noticeably limited and occasionally contradictory. Aim and Methods: The aim of the research was to investigate the informational aspects of direct-to-consumer genetic tests, including the provision of information by the companies, consumers information needs and information-seeking behaviour and the effect of the information generated by the tests on health behaviour and health anxiety. The research consisted of three studies: a survey of 275 consumers and potential consumers of DTC genetic tests, in-depth email interviews with 36 consumers of DTC genetic tests and a content analysis of the information provided on all identified providers websites. Results: Positive or neutral changes in health behaviour were identified in a large minority of respondents who had been exposed to genetic risk information, along with the mechanisms by which the information prompted or contributed to change. A minority reported a change in health anxiety, mainly but not exclusively a decrease, with mechanisms again identified. Consumers reported a wide variety of information needs, the most common of which were information to do with the coverage and accuracy of the tests. The provision of information on providers websites varied considerably, both between and within providers, but was generally poor. However, most consumers used other sources alongside these websites, the most common of which was blogs. Conclusions: The results suggest that concerns about possible negative effects of the information generated by the tests are unfounded and that a large minority of consumers have improved health behaviour and decreased health anxiety after purchase. The results also suggest that concern about information provision on providers websites is justified; although this is mitigated by consumers general use of other sources alongside the websites, it is likely that a substantial number of consumers do not have access to enough information to give fully informed consent to the test.

This thesis focuses on the protection of the patient’s privacy in health care in Sweden. It is crucially important that the patient has confidence in the health care and that patient data are kept secret from other persons and authorities. A patient who is unsure about secrecy and confidentiality may choose not to provide data that could prove necessary for health care personnel to arrive at an accurate diagnosis. Some individuals might even avoid seeking medical help from fear that data may be spread to outsiders. Inadequate protection of sensitive data may lead to the confidence of citizens in health care eventually eroding or vanishing completely. Protection of patient privacy is thus of fundamental importance in this area. In the area of health care, the intention of the legislator is that the regulations regarding secrecy in public health care and confidentiality in private health care will guarantee protection of patient privacy. Secrecy in public health care is regulated mainly in Chapter 25, Section 1 of the Swedish Public Access to Information and Secrecy Act (2009:400). In private health care, confidentiality is regulated mainly in Chapter 6, Section 12, first paragraph, and Section 16 of the Swedish Act on Patient Safety (2010:659). The overall purpose of the thesis is to examine and analyse the legislator’s intentions and the juridical construction regarding the rules of secrecy and confidentiality, from the perspective of patient privacy. The starting point of the thesis is that the patient’s privacy should be strongly protected. One of the main conclusions is that the legal construction cannot be considered to be in accordance with the legislator’s intention that the regulation of patient privacy protection should constitute a strong protection for the patient’s privacy, be comprehensible, clear and easy to apply for health care personnel, as well as being the same in both public and private health care.

Thesis (MPhil)--University of Stellenbosch, 2002. / ENGLISH ABSTRACT: The implementation of eugenic policies reached its peak during the zo" century when thousands of people with intellectual disabilities and other "undesirable qualities" were involuntary sterilized. Although most of the eugenic policies have been removed, countries such as South Africa, still make legally provision for the involuntary sterilization of people with intellectual disabilities. Torbjërn Tannsjë (1998) used the "argument from autonomy" to argue that involuntary sterilization practices are wrong because it involves compulsion. According to him, society should never interfere with people's reproductive choices and people should never be required to qualify for the right to have children. The aim of this assignment was to systematically assess the "argument from autonomy" as far as the policy of involuntary sterilization of people with intellectual disabilities is concerned. To this end, the concept of autonomy and the principle of respect for autonomy are discussed and applied to the intellectually disabled. It is argued that autonomy and respect for autonomy are useful concepts to apply to some people with intellectual disabilities. These individuals should not be automatically assumed to be incompetent, but their competence needs to be determined on an individual level, with reference to the complexity of the decision to be made. Special effort is needed from health care professionals to obtain (where possible) informed consent from people with intellectual disabilities. The application of the principle of respect for autonomy to matters of reproduction leads to the conclusion that people with severe to profound levels of disability, are unable to provide informed consent for sexual intercourse. Therefore some form of paternalistic protection is needed for these individuals. People with mild to moderate intellectual disabilities who are however competent to consent to sexual intercourse should never be prohibited from procreation by means of involuntary sterilization. State interference in matters of reproduction should be limited to interventions where (i) children are seriously harmed by parents and (ii) to protect those who are incompetent to consent to sexual interactions with others. Apart from these exceptions, the intellectually disabled is entitled to the same procreative rights as all other citizens. / AFRIKAANSE OPSOMMING: Die implementering van eugenetiese beleid het gedurende die 20 ste eeu 'n hoogtepunt bereik met die onwillekeurige sterilisering van duisende persone met intellektuele gestremdhede en ander "ongewensde kwaliteite". Alhoewel meeste van die eugenetiese wetgewing verwyder is, maak lande soos Suid-Afrika steeds wetlik voorsiening vir die onwillekeurige sterilisasie van persone met intellektuele gestremdhede. Torbjërn Tannsjo (1998) maak gebruik van die "outonomie argument" om te argumenteer dat onwillekeurige sterilisasie praktyke onaanvaarbaar is omdat dit dwang bevat. Hy voer aan dat die samelewing nooit in die reproduktiewe keuses van mense behoort in te meng nie en dat dit nooit vir mense nodig moet wees om vir ouerskap te kwalifiseer nie. Die doel van hierdie werkstuk was om sistematies die "outonomie argument" te analiseer ten opsigte van die beleid van die onwillekeurige sterilisasie van persone met intellektuele gestremdhede. Met hierdie doel voor oë word die konsep outonomie en die beginsel van respek vir outonomie bespreek en toegepas op die intellektueel gestremde persoon. Daar word aangevoer dat outonomie en respek vir outonomie nuttige beginsels is om in ag te neem in kwessies rakende intellektueel gestremdes. Hierdie individue moet nie outomaties as onbevoeg beskou word nie, maar hul bevoegdheid moet eerder op 'n individuele basis beoordeel word, inaggeneem die kompleksiteit van die besluit wat geneem moet word. Voorts word daar van gesondheidsorgpersoneel verwag om moeite te doen met die verkryging van oorwoê toestemming (waar moontlik) by persone met intellektuele gestremdhede. Die toepassing van die beginsel van respek vir outonomie op aspekte rakende reproduksie, lei tot die gevolgtrekking dat persone met ernstige intellektuele gestremdhede nie in staat is om toestemming tot seksuele omgang te verleen nie. Dus, is 'n vorm van paternalistiese beskerming in hierdie gevalle aangedui. Persone met intellektuele gestremdhede wat egter wel bevoeg is om toestemming tot seksuele omgang te verleen, moet nooit weerhou word van voortplanting deur middel van onwillekeurige sterilisering nie. Inmenging deur die staat in kwessies rakende reproduksie moet beperk word tot intervensies waar (i) kinders ernstige skade berokken word en (ii) die beskerming van persone wat onbevoeg is om toestemming tot seksuele interaksies met ander te verleen, benodig word. Afgesien hiervan, is die intellektuele gestremde persoon geregtig op dieselfde reproduktiewe regte as alle ander landsburgers.

Thesis (MPhil)--University of Stellenbosch, 2005. / ENGLISH ABSTRACT: Paarl, in the Western Cape, has been identified as one of the 15 national sites where antiretroviral treatment (ARVs) would be made available to people living with HIV/AIDS. Paarl Hospice initiated a support group for people to deal with this disease in 2003. Since February 2004 Paarl Hospice has been recruiting people from the surrounding informal settlements for ARVs. By means of participant observation I explored how HIV/AIDS-related disclosure experiences unfolded in places, spaces and events associated with the support group in the context of factors enabling and preventing people from accessing Hospice House. I did this by considering the insights drawn from an anthropological approach. I found the meanings of disclosure in the majority of studies to be limited and restricted. Available studies approached disclosure in a top-down fashion by regarding the definition of disclosure as the announcement of HIV-positivity at the time of diagnosis only. These studies have not considered social differences relating to disclosure neither did they focus on the actual process of disclosure. By means of a constructivist approach to grounded theory I seek to broaden the definition of disclosure to account for the range of ways in which disclosure practices take place. I found that disclosure could not be separated from the situational context in which it occurs and that it can only be understood in relation to the circumstances and relationships in which it takes place. In this study, disclosure was an ongoing process, situated somewhere between active, public announcement of an HIV-status and complete secrecy and somewhere between voluntary and involuntary revealing of the disease. / AFRIKAANSE OPSOMMING: Paarl in die Wes-Kaap is geïdentifiseer as een van die 15 nasionale areas waar antiretrovirale medikasie beskikbaar gestel sou word aan mense wat leef met MIV/VIGS. Paarl Hospice het gedurende 2003 ʼn ondersteuningsgroep geїnisieer om aan MIV/VIGS aandag te gee. Sedert Februarie 2004 is Paarl Hospice in die proses om mense te werf uit die omliggende informele behuisingsgebiede vir antiretrovirale behandeling. Met behulp van antropologiese insigte en deelnemende waarneming kon ek nagaan hoe verskillende maniere van MIV/VIGS-verwante bekendmaking ontvou in plekke, ruimtes en gebeurtenisse wat verband hou met die ondersteuningsgroep. MIV/VIGSverwante bekendmaking is ondersoek te midde van inhiberende en fasiliterende faktore wat mense verhoed of aanhelp om Paarl Hospice te besoek. Ek het bevind dat die definisie van bekendmaking in die meeste navorsing gebrekkig is. Beskikbare navorsing het bekendmaking volgens ‘n bo-na-onder-wyse benader as die openbare bekendmaking van ‘n MIV-status na afloop van diagnose alleenlik. Met behulp van ‘n konstruktiewe benadering van die begronde teorie het ek gepoog om die definisie van bekendmaking uit te bou om sodoende die verskeidenheid maniere waarop bekendmaking plaasvind te akkommodeer. Ek het vasgestel dat bekendmaking onlosmaakbaar deel is van die situasionele konteks waarin dit plaasvind en dat dit slegs begryp kan word in verband tot die verhoudings en omstandighede waarin dit plaasvind. In hierdie studie was bekendmaking ʼn voortdurende proses, gesitueer tussen aktiewe openbare bekendmaking en volledige geheimhouding van ʼn MIVstatus, asook tussen volkome vrywillige en onvrywillige bekendmaking van ʼn MIVstatus.

La thèse propose de mesurer le rôle et la place que le droit accorde aujourd’hui à la volonté du salarié dans le rapport de travail. Elle cherche aussi, dans un même temps, à identifier, à l’aune de l’observation de certaines évolutions, un affermissement de sa prise en compte. Une telle démarche exige de dépasser le constat, classiquement posé, de l’état de subordination du salarié et de la protection impérative et collective dont il fait l’objet. La volonté, telle que définie par l’auteur, suppose, en effet, un domaine d’exercice reconnu et protégé par le droit, par le biais de prérogatives et droits individuels dont le salarié est titulaire et qui lui confèrent une certaine liberté, une faculté de choix, un pouvoir d’agir au sein du rapport de travail. Pour investir les figures volontaires du salarié, dans leur diversité et leur spécificité, l’approche est menée au regard successivement de la dimension contractuelle et de la relation de pouvoir de l’employeur contenues dans le rapport d’emploi. Le diagnostic qui est posé, mêlant étroitement faveur et suspicion, valorisation et protection de la volonté du salarié, laisse néanmoins apparaître une prise en compte plus systématique et plus radicale de cette volonté. L’orientation, ainsi engagée par le droit positif, est susceptible d’annoncer, non la fin du salariat, mais au contraire une forme de renaissance. / The thesis offers to measure the role and place which law reserves for the employee’s will in labour relations. It also tries, at the same time, to identify, through the observation of certain evolutions, that the employee’s will is being more clearly taken into account. This approach necessarily goes beyond the observation generally made of the degree of the employee’s subordination and of the necessary and collective protection from which he benefits. The will, as defined by the author, supposes, as a matter of fact, a recognized field of application protected by the law through prerogatives and individual rights held by the employee which give him/her a certain degree of freedom, the ability to choose and the power to act within the labour relations. In order to cover the diversified and specific forms of voluntary action by the employee, our approach is led with regard to firstly the contractual dimension and secondly the degree by which the employer’s power affects the job relationship. The diagnostic made, which mixes closely favour and suspicion, valorization and protection of the employee’s will, shows nevertheless that this will is more systematically and radically taken into account. The orientation, engendered by positive law, is likely to announce not the end of the salaried status but on the contrary some sort of renaissance.

"Mémoire présenté à la Faculté des études supérieures en vue de l'obtention du grade de maîtrise en droit option Droit et Biotechnologies". Ce mémoire a été accepté à l'unanimité et classé parmi les 15% des mémoires de la discipline. / La recherche biomédicale réalisée en situation d'urgence traduit la confrontation entre différents principes conducteurs éthiques. Le respect de l'autonomie de la personne, illustré à travers l'obtention du consentement libre et éclairé du sujet pressenti, peut sembler un concept vide de sens dans le cas des malades présentant une condition médicale critique. Pour ces patients en proie à une crise médicale, et donc vulnérables, une protection individuelle accrue s'impose. Une surprotection irait, toutefois, à la fois à l'encontre du principe de justice distributive et du principe de bienfaisance, impliquant de ne pas exclure totalement un groupe de sujets des expectatives élevées de bénéfices d'une recherche correctement balisée. Ce texte a pour objectif de cerner quel est le fondement - éthique - des textes législatifs, réglementaires et normatifs qui permettent l'enrôlement de ces malades atteints de pathologies foudroyantes dans des protocoles de recherche, alors même qu'aucun consentement, qu'il soit autonome ou substitué, n'a été donné. Inspirée du modèle de réflexion éthique pluraliste, l'auteur pose comme hypothèse que c'est le principe de justice distributive qui sous-tend la politique éthique de tels textes, puisque contribuant au développement des avancées thérapeutiques en urgence et à la nécessité d'augmenter l'efficacité des traitements disponibles. Ce texte cherche finalement à définir une démarche d'approbation des protocoles de recherche qui seront réalisés en situation d'urgence. / Biomedical research performed under emergency conditions highlights the conflict between competing ethical principles. The respect for the autonomy of the person, illustrated by the need to obtain a subject's informed consent, can seem an empty concept in the case of a patient presenting severe medical conditions. For those patients in a midst of a medical crisis, and therefore vulnerable, particular protection is necessary. An overprotection would, however, contravene both the principles of distributive justice and of beneficence, principles that hold that an entire group of subjects ought not to be excluded from the expectations of the benefits of properly controlled research. The object of this text is to discem the ethical foundation of the legislative, regulatory and normative texts that permit those stricken with devasting diseases to participate in research projects without consent having been granted. Based on the pluralist ethical model, the author asserts as a hypothesis that it is the principle of distributive justice which supports the ethical policies underlying such texts, since contributing to the development of therapeutic advances in emergencies and to the necessity of increasing the effectiveness of available treatments. This text attempts ultimately to establish procedures to be followed in obtaining approval in research projects in the case of an emergency.

Thèse par articles. Articles (4) annexés à la thèse en fichiers complémentaires. / Les bases de données populationnelles (gouvernementales, biobanques) occupent l’espace de la santé et des politiques publiques depuis longtemps. Les données personnelles qui y sont contenues sont toutefois soumises à une pression nouvelle, de par la valeur qu’elles représentent pour la recherche populationnelle. L’étude des maladies communes nécessitent de grands échantillons pour produire des résultats statistiquement significatifs. D’ailleurs, les collaborations internationales et initiatives de réseautage se multiplient. Les bases de données populationnelles agissent alors en synergie, générant de nombreux bénéfices pour la société (ex. : identifier des facteurs de risques, mieux connaître l’épidémiologie humaine, stimuler les économies nationales, etc.). Dans ce système complexe, les intérêts des acteurs (sujets de recherche, chercheurs, comités d’éthique – CÉR -, gouvernements, organismes subventionnaires) déterminent l’action et les normes applicables. La recherche avec des sujets humains et l’utilisation massive de données personnelles comportent de nombreuses sensibilités. Des balises juridiques ont été érigées pour protéger les personnes et leur vie privée, mais elles s’avèrent inadéquates dans un contexte de recherche populationnelle. L’obligation d’obtenir un nouveau consentement pour chaque utilisation, l’incapacité des CÉR locaux à représenter une population et la multiplication des disparités normatives entre juridictions sont autant de barrières qui se dressent. Après avoir exploré différents modèles normatifs internationaux (patrimoine commun de l’humanité, biens publics mondiaux, modèles dits libres), le modèle en réseau apparaît comme le plus apte à rallier les différents niveaux de gouvernance impliqués (individuel, populationnel et international). La création d’un réseau de ressources collectives pour la recherche populationnelle est ici proposée. La recherche scientifique est une finalité compatible aux autres utilisations pour lesquelles les données ont été collectées. Les bases de données sont maintenues pour servir l’utilité publique. Le réseau devrait donc faciliter l’accès aux projets de recherche populationnelle socialement utiles, ou dans l’intérêt public. Pour qu’un tel réseau fonctionne, la population devrait être sensibilisée à la valeur des données personnelles pour la recherche, des liens directs entre CÉR devraient être créés afin de favoriser l’empuissancement des acteurs locaux, les initiatives internationales et locales devraient s’influencer de manière réflexive. L’État, en tant que gardien des données personnelles et promoteur de la recherche, agirait comme coordonnateur du système avec pour objectif, d’optimiser l’utilisation des données personnelles à des fins de recherche populationnelle. / Populational databases (governmental databases and biobanks) have been effective tools in the field of public health and policy making. The personal data stored in these databases are central to identifying the risks of diseases in population-based research. Many initiatives of networking, collaborative research and implementation of electronic health records are deployed in the world. Population-based research depends on synergy between populational databases due to the large sample size of data that is needed to obtain statistical significance. In the complex system of public research, the various interests of agents involved (e.g. research subjects, researchers, research ethics boards (REBs), governments, funding agencies) collectively determine the applicable strategies and norms. Research involving human subjects and the extensive use of personal data raises numerous issues. Ethical and legal requirements have been set up to protect dignity and privacy. However, these requirements are not adequate for population-based research. Issues of re-consent for secondary uses; the limited reach of local REBs; and discrepancies between jurisdictions present barriers to population-based research. In a comparative study of international normative models (Common Heritage of Mankind, Global Public Goods, Commons), ‘network governance’ seems the most appropriate model to link the various governance structures that are implicated in population-based research (e.g. individual, populational and international). The creation of a Collective Resources Network for population-based research is proposed for this purpose. Scientific research is compatible with other uses for which consent has been obtained. Databases are maintained for public utility. This network should facilitate population-based research that is socially useful or in the public interest. To be effective, the value of personal data in scientific research must be recognized; REBs should be empowered by the creation of direct links between them; and international and local initiatives should be integrated in a reflexive manner. The State, both as the steward of personal data and the promoter of innovative research, should act as the coordinator of the system, with the objective of optimizing the use of personal data for population-based research.