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  1. Consent to Epistemic Interventions: A Contribution to the Debate on the Right (Not) to Know.Niels Nijsingh - 2016 - Medicine, Health Care and Philosophy 19 (1):103-110.
    The debate on the ‘right to know’ has simmered on for over 30 years. New examples where a right to be informed is contrasted to a right to be kept in ignorance occasionally surface and spark disagreement on the extent to which patients and research subjects have a right to be self-determining concerning the health related information they receive. Up until now, however, this debate has been unsatisfactory with regard to the question what type of rights—if any—are in play here (...)
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  • Marking Shifts in Human Research Ethics in the Development of Biobanking.D. Chalmers, M. Burgess, K. Edwards, J. Kaye, E. M. Meslin & D. Nicol - 2015 - Public Health Ethics 8 (1):63-71.
    Biobanks are increasingly being created specifically for research purposes. Concomitantly, we are seeing significant and evolving shifts in research ethics in relation to biobanking. Three discrete shifts are identified in this article. The first extends the ethical focus beyond the protection of human subjects to the promotion of broader community benefits of research utilizing biobanked resources, and an expectation that these benefits will be shared. The second involves the evolution of the traditional consent paradigm for future research uses of biobanks (...)
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  • Broad Consent Under the GDPR: An Optimistic Perspective on a Bright Future.Dara Hallinan - 2020 - Life Sciences, Society and Policy 16 (1):1-18.
    Broad consent – the act of gaining one consent for multiple potential future research projects – sits at the core of much current genomic research practice. Since the 25th May 2018, the General Data Protection Regulation has applied as valid law concerning genomic research in the EU and now occupies a dominant position in the legal landscape. Yet, the position of the GDPR concerning broad consent has recently been cause for concern in the genomic research community. Whilst the text of (...)
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  • The Ethics of Uncertainty for Data Subjects.Philip Nickel - 2019 - In Jenny Krutzinna & Luciano Floridi (eds.), The Ethics of Medical Data Donation. Springer Verlag. pp. 55-74.
    Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, (...)
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  • Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Alex McKeown, Miranda Mourby, Paul Harrison, Sophie Walker, Mark Sheehan & Ilina Singh - 2021 - Science and Engineering Ethics 27 (1):1-21.
    Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating (...)
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  • Trust and Justice in Big Data Analytics: Bringing the Philosophical Literature on Trust to Bear on the Ethics of Consent.J. Woolley - 2019 - Philosophy and Technology 32 (1):111-134.
    Much bioethical literature and policy guidances for big data analytics in biomedical research emphasize the importance of trust. It is essential that potential participants trust so they will allow their data to be used to further research. However, comparatively, little guidance is offered as to what trustworthy oversight mechanisms are, or how policy should support them, as data are collected, shared, and used. Generally, “trust” is not characterized well enough, or meaningfully enough, for the term to be systematically applied in (...)
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  • In Defence of Informed Consent for Health Record Research - Why Arguments From ‘Easy Rescue’, ‘No Harm’ and ‘Consent Bias’ Fail.Thomas Ploug - 2020 - BMC Medical Ethics 21 (1):1-13.
    BackgroundHealth data holds great potential for improved treatments. Big data research and machine learning models have been shown to hold great promise for improved diagnostics and treatment planning. The potential is tied, however, to the availability of personal health data. In recent years, it has been argued that data from health records should be available for health research, and that individuals have a duty to make the data available for such research. A central point of debate is whether such secondary (...)
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  • Biomedical Big Data: New Models of Control Over Access, Use and Governance.Alessandro Blasimme & Effy Vayena - 2017 - Journal of Bioethical Inquiry 14 (4):501-513.
    Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated (...)
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  • Where Should We Draw the Line Between Quality of Care and Other Ethical Concerns Related to Medical Registries and Biobanks?Mats Hansson - 2012 - Theoretical Medicine and Bioethics 33 (4):313-323.
    Together with large biobanks of human samples, medical registries with aggregated data from many clinical centers are vital parts of an infrastructure for maintaining high standards of quality with regard to medical diagnosis and treatment. The rapid development in personalized medicine and pharmaco-genomics only underscores the future need for these infrastructures. However, registries and biobanks have been criticized as constituting great risks to individual privacy. In this article, I suggest that quality with regard to diagnosis and treatment is an inherent, (...)
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  • Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data.Jenny Krutzinna, Mariarosaria Taddeo & Luciano Floridi - 2019 - Science and Engineering Ethics 25 (5):1357-1387.
    This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical data donation. (...)
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  • Can a Soldier Say No to an Enhancing Intervention?Sahar Latheef & Adam Henschke - 2020 - Philosophies 5 (13):13-0.
    Technological advancements have provided militaries with the possibility to enhance human performance and to provide soldiers with better warfighting capabilities. Though these technologies hold significant potential, their use is not without cost to the individual. This paper explores the complexities associated with using human cognitive enhancements in the military, focusing on how the _purpose and context_ of these technologies could potentially undermine a soldier’s ability to say no to these interventions. We focus on cognitive enhancements and their ability to also (...)
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  • Citizens' Views on Sharing Their Health Data: The Role of Competence, Reliability and Pursuing the Common Good.Samia Hurst-Majno, Pierre Chappuis, Monica Aceti, Claudine Burton-Jeangros, Petros Tsantoulis & Minerva C. Rivas Velarde - 2021 - BMC Medical Ethics 22 (1):1-12.
    BackgroundIn this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. MethodsThis paper presents the results of a citizen forum that included 73 participants. A research tool titled "the (...)
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  • Editorial – Ethical Practice and Genomic Research.Michael Parker & Janet Seeley - 2020 - Global Bioethics 31 (1):164-168.
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  • Exploring Solutions to the Privacy Paradox in the Context of E-Assessment: Informed Consent Revisited.Ekaterina Muravyeva, José Janssen, Marcus Specht & Bart Custers - 2020 - Ethics and Information Technology 22 (3):223-238.
    Personal data use is increasingly permeating our everyday life. Informed consent for personal data use is a central instrument for ensuring the protection of personal data. However, current informed consent practices often fail to actually inform data subjects about the use of personal data. This article presents the results of a requirements analysis for informed consent from both a legal and usability perspective, considering the application context of educational assessment. The requirements analysis is based on European Union law and a (...)
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  • Privacy Laws and Biobanking in Germany.Nils Hoppe - 2016 - Journal of Law, Medicine and Ethics 44 (1):35-44.
    While the possibility of enacting a sui generis Biobank Act has been debated in Germany at great length, as of yet the country has not implemented any biobankspecific legislation. Instead, oversight is available via a network of research and privacy laws, including those of the European Union. The Nationale Kohorte, Germany's large-scale, population-based epidemiological research biobank, is funded by the Federal Ministry of Education and Research, and there are currently 108 registered bio-banks throughout Germany. The current system, including the structure (...)
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  • Clarifying How to Deploy the Public Interest Criterion in Consent Waivers for Health Data and Tissue Research.G. Owen Schaefer, Graeme Laurie, Sumytra Menon, Alastair V. Campbell & Teck Chuan Voo - 2020 - BMC Medical Ethics 21 (1):1-10.
    Background Several jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using secondary health data or tissue. However, the concept of the public interest is not well defined in this context, which creates difficulties for institutions, institutional review boards and regulators trying to implement the criterion. Main text This paper clarifies how the public interest criterion can be defensibly deployed. We first explain the (...)
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  • Health Data Research on Sudden Cardiac Arrest: Perspectives of Survivors and Their Next-of-Kin.Dick L. Willems, Hanno L. Tan, Marieke T. Blom, Rens Veeken & Marieke A. R. Bak - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and (...)
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  • Formalization of Informed Consent From Ethical to Administrative Use.Frunza Ana & Antonio Sandu - 2017 - Postmodern Openings 8 (3):69-95.
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  • An “Ethical Moment” in Data Sharing.Catherine Heeney - 2017 - Science, Technology, and Human Values 42 (1):3-28.
    This study draws on interviews with forty-nine members of a biomedical research community in the UK that is involved in negotiating data sharing and access. During an interview, an interviewee used the words “ethical moment” to describe a confrontation between collaborators in relation to data sharing. In this article, I use this as a lens for thinking about relations between “the conceptual and the empirical” in a way that allows both analyst and actor to challenge the status quo and consider (...)
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  • The Right Not to Know and the Obligation to Know.Ben Davies - 2020 - Journal of Medical Ethics 46 (5):300-303.
    There is significant controversy over whether patients have a ‘right not to know’ information relevant to their health. Some arguments for limiting such a right appeal to potential burdens on others that a patient’s avoidable ignorance might generate. This paper develops this argument by extending it to cases where refusal of relevant information may generate greater demands on a publicly funded healthcare system. In such cases, patients may have an ‘obligation to know’. However, we cannot infer from the fact that (...)
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  • Precision Medicine and Big Data: The Application of an Ethics Framework for Big Data in Health and Research.G. Owen Schaefer, E. Shyong Tai & Shirley Sun - 2019 - Asian Bioethics Review 11 (3):275-288.
    As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to (...)
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  • Contacting Gamete Donors to Facilitate Diagnostic Genetic Testing for the Donor-Conceived Child: What Are the Rights and Obligations of Gamete Donors in These Cases? A Response to Horton Et Al.Lucy Frith - 2020 - Journal of Medical Ethics 46 (3):220-222.
    In their paper Horton et al argue that it is acceptable to contact an anonymous egg-donor to facilitate diagnostic genetic testing for the donor conceived child, despite the donor, ‘indicating on a historical consent form that she did not wish to take part in future research, and that she did not wish to be informed if she was found to be a carrier of a “harmful inherited condition”’. There are a number of claims embedded in Horton et al’s position that (...)
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  • Is It Acceptable to Contact an Anonymous Egg Donor to Facilitate Diagnostic Genetic Testing for the Donor-Conceived Child?Rachel Horton, Benjamin Bell, Angela Fenwick & Anneke M. Lucassen - 2019 - Journal of Medical Ethics 45 (6):357-360.
    We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be a carrier of (...)
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  • The Biobank Consent Debate: Why ‘Meta-Consent’ is Not the Solution?Neil C. Manson - 2019 - Journal of Medical Ethics 45 (5):291-294.
    Over the past couple of decades, there has been an ongoing, often fierce, debate about the ethics of biobank participation. One central element of that debate has concerned the nature of informed consent, must specific reconsent be gained for each new use, or user, or is broad consent ethically adequate? Recently, Thomas Ploug and Søren Holm have developed an alternative to both specific and broad consent: what they call a meta-consent framework. On a meta-consent framework, participants can choose the type (...)
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  • Double Standards and Arguments for Tobacco Regulation.Jessica Flanigan - 2016 - Journal of Medical Ethics 42 (5):305-311.
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  • Hypocrisy Around Medical Patient Data: Issues of Access for Biomedical Research, Data Quality, Usefulness for the Purpose and Omics Data as Game Changer.Erwin Tantoso, Wing-Cheong Wong, Wei Hong Tay, Joanne Lee, Swati Sinha, Birgit Eisenhaber & Frank Eisenhaber - 2019 - Asian Bioethics Review 11 (2):189-207.
    Whether due to simplicity or hypocrisy, the question of access to patient data for biomedical research is widely seen in the public discourse only from the angle of patient privacy. At the same time, the desire to live and to live without disability is of much higher value to the patients. This goal can only be achieved by extracting research insight from patient data in addition to working on model organisms, something that is well understood by many patients. Yet, most (...)
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  • Can Dynamic Consent Facilitate the Protection of Biomedical Big Data in Biobanking in Malaysia?Mohammad Firdaus Abdul Aziz & Aimi Nadia Mohd Yusof - 2019 - Asian Bioethics Review 11 (2):209-222.
    As with many other countries, Malaysia is also developing and promoting biomedical research to increase the understanding of human diseases and possible interventions. To facilitate this development, there is a significant growth of biobanks in the country to ensure continuous collection of biological samples for future research, which contain extremely important personal information and health data of the participants involved. Given the vast amount of samples and data accumulated by biobanks, they can be considered as reservoirs of precious biomedical big (...)
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  • Sharing Individual-Level Health Research Data: Experiences, Challenges and a Research Agenda.Phaik Yeong Cheah, Nicholas P. J. Day, Michael Parker & Susan Bull - 2017 - Asian Bioethics Review 9 (4):393-400.
    Since January 2016, the Mahidol Oxford Tropical Medicine Research Unit has trialled a data-sharing policy where requests to access research datasets are processed through a Data Access Committee. In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures. We identified a number of practical and ethical challenges including requests for datasets collected without specific or broad consent to data sharing and requests from pharmaceutical companies for data (...)
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  • Digitized Future of Medicine: Challenges for Bioethics.Elena G. Grebenshchikova & Pavel D. Tishchenko - 2020 - Russian Journal of Philosophical Sciences 63 (2):83-103.
    The article discusses the challenges, benefits, and risks that, from a bioethical perspective, arise because of the the development of eHealth projects. The conceptual framework of the research is based on H. Jonas’ principles of the ethics of responsibility and B.G. Yudin’s anthropological ideas on human beings as agents who constantly change their own boundaries in the “zone of phase transitions.” The article focuses on the events taking place in the zone of phase transitions between humans and machines in eHealth. (...)
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  • Authority and the Future of Consent in Population-Level Biomedical Research.Mark Sheehan, Rachel Thompson, Jon Fistein, Jim Davies, Michael Dunn, Michael Parker, Julian Savulescu & Kerrie Woods - forthcoming - Public Health Ethics.
    Population-level biomedical research has become crucial to the health system’s ability to improve the health of the population. This form of research raises a number of well-documented ethical concerns, perhaps the most significant of which is the inability of the researcher to obtain fully informed specific consent from participants. Two proposed technical solutions to this problem of consent in large-scale biomedical research that have become increasingly popular are meta-consent and dynamic consent. We critically examine the ethical and practical credentials of (...)
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  • Understanding (in) Consent for Governance.Michael A. Lensink, Sarah N. Boers, Karin R. Jongsma & Annelien L. Bredenoord - 2019 - American Journal of Bioethics 19 (5):43-45.
    Volume 19, Issue 5, May 2019, Page 43-45.
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  • Balancing the Local and the Universal in Maintaining Ethical Access to a Genomics Biobank.Catherine Heeney & Shona M. Kerr - 2017 - BMC Medical Ethics 18 (1):80.
    Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical research. Decisions around data access are influenced by local arrangements for governance and practices such as linkage to health records, and the global through policies for biobanking and the sharing of data with large-scale biomedical research (...)
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  • Challenges Arising When Seeking Broad Consent for Health Research Data Sharing: A Qualitative Study of Perspectives in Thailand.Phaik Yeong Cheah, Nattapat Jatupornpimol, Borimas Hanboonkunupakarn, Napat Khirikoekkong, Podjanee Jittamala, Sasithon Pukrittayakamee, Nicholas P. J. Day, Michael Parker & Susan Bull - 2018 - BMC Medical Ethics 19 (1):86.
    Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad consent (...)
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  • Disruption, Diversity, and Global Biobanking.Edwina Light, Miriam Wiersma, Lisa Dive, Ian Kerridge, Christine Critchley & Wendy Lipworth - 2019 - American Journal of Bioethics 19 (5):45-47.
    Volume 19, Issue 5, May 2019, Page 45-47.
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  • Research Participants’ Perceptions and Views on Consent for Biobank Research: A Review of Empirical Data and Ethical Analysis.Flavio D'Abramo, Jan Schildmann & Jochen Vollmann - 2015 - BMC Medical Ethics 16 (1):60.
    Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and further stakeholders. However, there is scarcity of literature which connects the normative debate about justifications for different consent models with findings gained in empirical research. In this paper we discuss findings of a limited review of socio-empirical research (...)
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  • Ethische und rechtliche Aspekte im Umgang mit genetischen Zufallsbefunden – Herausforderungen und LösungsansätzeEthical and legal issues when dealing with genetic incidental findings—challenges and possible solutions.Sabine Rudnik-Schöneborn, Martin Langanke, Pia Erdmann & Jürgen Robienski - 2014 - Ethik in der Medizin 26 (2):105-119.
    Mit der Vielzahl von Daten aus genetischen Untersuchungsverfahren wächst das Problem von „Zufallsbefunden“, d. h. von zufällig erhobenen Nebenbefunden, die mit der ursprünglichen Fragestellung nicht in Verbindung stehen und dennoch eine Bedeutung für Gesundheit und Reproduktionsverhalten der untersuchten Person selbst oder ihrer Anverwandten haben. In Ermangelung nationaler oder internationaler Richtlinien greifen die Autoren die aktuelle Diskussion um den Umgang mit genetischen Zufallsbefunden in Behandlungs- und Forschungskontext auf. Dabei nehmen sie auf die für Deutschland relevanten rechtlichen und ethischen Rahmenbedingungen Bezug. Nach (...)
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  • Addressing Benefits, Risks and Consent in Next Generation Sequencing Studies.Meller R. - 2015 - Journal of Clinical Research and Bioethics 6 (6).
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  • A Philosophical Analysis of Informed Consent for Whole Genome Sequencing in Biobank Research by Use of Beauchamp and Childress’ Four Principles of Biomedical Ethics.Ebbesen M. & Sundby A. - 2015 - Journal of Clinical Research and Bioethics 6 (6).
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  • Biobanking and the Abandonment of Informed Consent: An Ethical Imperative.Stephanie Solomon Cargill - 2016 - Public Health Ethics 9 (3):255-263.
    There has been extensive discussion in research ethics literature surrounding the appropriate form of informed consent for biobanking, whether with adapted content, or adapted forms such as broad or tiered consent. These discussions presuppose that it is possible to disclose adequate information at the outset to facilitate an informed choice to donate to a biobank. I will argue that informed consent cannot be achieved because in the biobanking context, we are either consenting to an enterprise that is not research or (...)
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  • Consenting to Geoengineering.Pak-Hang Wong - 2016 - Philosophy and Technology 29 (2):173-188.
    Researchers have explored questions concerning public participation and consent in geoengineering governance. Yet, the notion of consent has received little attention from researchers, and it is rarely discussed explicitly, despite being prescribed as a normative requirement for geoengineering research and being used in rejecting some geoengineering options. As it is noted in the leading geoengineering governance principles, i.e. the Oxford Principles, there are different conceptions of consent; the idea of consent ought to be unpacked more carefully if, and when, we (...)
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