31 found
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  1.  38
    Organoids as hybrids: ethical implications for the exchange of human tissues.Sarah N. Boers, Johannes J. M. van Delden & Annelien L. Bredenoord - 2019 - Journal of Medical Ethics 45 (2):131-139.
    Recent developments in biotechnology allow for the generation of increasingly complex products out of human tissues, for example, human stem cell lines, synthetic embryo-like structures and organoids. These developments are coupled with growing commercial interests. Although commercialisation can spark the scientific and clinical promises, profit-making out of human tissues is ethically contentious and known to raise public concern. The traditional bioethical frames of gift versus market are inapt to capture the resulting practical and ethical complexities. Therefore, we propose an alternative (...)
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  2.  27
    Experts’ moral views on gene drive technologies: a qualitative interview study.Annelien L. Bredenoord, Karin R. Jongsma & N. de Graeff - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundGene drive technologies (GDTs) promote the rapid spread of a particular genetic element within a population of non-human organisms. Potential applications of GDTs include the control of insect vectors, invasive species and agricultural pests. Whether, and if so, under what conditions, GDTs should be deployed is hotly debated. Although broad stances in this debate have been described, the convictions that inform the moral views of the experts shaping these technologies and related policies have not been examined in depth in the (...)
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  3.  23
    The social value of clinical research.Michelle Gjl Habets, Johannes Jm van Delden & AnneLien L. Bredenoord - 2014 - BMC Medical Ethics 15 (1):66.
    International documents on ethical conduct in clinical research have in common the principle that potential harms to research participants must be proportional to anticipated benefits. The anticipated benefits that can justify human research consist of direct benefits to the research participant, and societal benefits, also called social value. In first-in-human research, no direct benefits are expected and the benefit component of the risks-benefit assessment thus merely exists in social value. The concept social value is ambiguous by nature and is used (...)
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  4.  15
    Broad Consent Is Consent for Governance.Sarah N. Boers, Johannes J. M. van Delden & Annelien L. Bredenoord - 2015 - American Journal of Bioethics 15 (9):53-55.
  5.  12
    Governing Gene Drive Technologies: A Qualitative Interview Study.N. de Graeff, Karin R. Jongsma, Jeantine E. Lunshof & Annelien L. Bredenoord - 2022 - AJOB Empirical Bioethics 13 (2):107-124.
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  6.  24
    Ethics parallel research: an approach for (early) ethical guidance of biomedical innovation.Karin R. Jongsma & Annelien L. Bredenoord - 2020 - BMC Medical Ethics 21 (1):1-9.
    BackgroundOur human societies and certainly also (bio) medicine are more and more permeated with technology. There seems to be an increasing awareness among bioethicists that an effective and comprehensive approach to ethically guide these emerging biomedical innovations into society is needed. Such an approach has not been spelled out yet for bioethics, while there are frequent calls for ethical guidance of biomedical innovation, also by biomedical researchers themselves. New and emerging biotechnologies require anticipation of possible effects and implications, meaning the (...)
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  7.  20
    How Smart are Smart Materials? A Conceptual and Ethical Analysis of Smart Lifelike Materials for the Design of Regenerative Valve Implants.Annelien L. Bredenoord, Carlijn V. C. Bouten, Karin R. Jongsma & Anne-Floor J. de Kanter - 2023 - Science and Engineering Ethics 29 (5):1-18.
    It may soon become possible not just to replace, but to re-grow healthy tissues after injury or disease, because of innovations in the field of Regenerative Medicine. One particularly promising innovation is a regenerative valve implant to treat people with heart valve disease. These implants are fabricated from so-called ‘smart’, ‘lifelike’ materials. Implanted inside a heart, these implants stimulate re-growth of a healthy, living heart valve. While the technological development advances, the ethical implications of this new technology are still unclear (...)
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  8.  17
    Digital Medicine: An Opportunity to Revisit the Role of Bioethicists.Karin R. Jongsma, Annelien L. Bredenoord & Federica Lucivero - 2018 - American Journal of Bioethics 18 (9):69-70.
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  9.  14
    Moral imagination as an instrument for ethics education for biomedical researchers.Elianne M. Gerrits, Lars S. Assen, Liesbeth Noordegraaf-Eelens, Annelien L. Bredenoord & Marc H. W. van Mil - 2023 - International Journal of Ethics Education 8 (2):275-289.
    Moral sensitivity and moral reasoning are essential competencies biomedical researchers have to develop to make ethical decisions in their daily practices. Previous research has shown that these competencies can be developed through ethics education. However, it is unclear which underlying mechanisms best support the development of these competencies. In this article we argue that the development of moral sensitivity and moral reasoning can be fostered through teaching strategies that tap into students’ moral imagination. We describe how moral imagination can stimulate (...)
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  10.  17
    Responsible Research with Human Tissues: The Need for Reciprocity Toward Both Collectives and Individuals.Annelien L. Bredenoord, Johannes J. M. van Delden, Sarah N. Boers, Karin R. Jongsma & Michael A. Lensink - 2021 - American Journal of Bioethics 21 (4):75-78.
    Precision medicine research involving human biological material is becoming an increasingly central component of healthcare, and its potential is quickly growing due to rapid technological progress...
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  11.  18
    Embodiment and regenerative implants: a proposal for entanglement.Manon van Daal, Anne-Floor J. de Kanter, Karin R. Jongsma, Annelien L. Bredenoord & Nienke de Graeff - forthcoming - Medicine, Health Care and Philosophy:1-12.
    Regenerative Medicine promises to develop treatments to regrow healthy tissues and cure the physical body. One of the emerging developments within this field is regenerative implants, such as jawbone or heart valve implants, that can be broken down by the body and are gradually replaced with living tissue. Yet challenges for embodiment are to be expected, given that the implants are designed to integrate deeply into the tissue of the living body, so that implant and body become one. In this (...)
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  12.  34
    A Thick Opt-Out Is Often Sufficient.Noor A. A. Giesbertz, Annelien L. Bredenoord & Johannes J. M. van Delden - 2013 - American Journal of Bioethics 13 (4):44 - 46.
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  13.  30
    Disclosing Individual Genetic Research Results to Deceased Participants' Relatives by Means of a Qualified Disclosure Policy.Annelien L. Bredenoord & Johannes Jm van Delden - 2012 - American Journal of Bioethics 12 (10):10-12.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 10-12, October 2012.
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  14.  18
    Next Generation DNA Sequencing: Always Allow an Opt Out.Annelien L. Bredenoord, Rhodé M. Bijlsma & Hans van Delden - 2015 - American Journal of Bioethics 15 (7):28-30.
  15.  20
    Toward a “Post-Posthuman Dignity Area” in Evaluating Emerging Enhancement Technologies.Annelien L. Bredenoord, Rieke van der Graaf & Johannes Jm van Delden - 2010 - American Journal of Bioethics 10 (7):55-57.
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  16.  22
    The Right to an Open Future Concerning Genetic Information.Annelien L. Bredenoord, Martine C. de Vries & Hans van Delden - 2014 - American Journal of Bioethics 14 (3):21-23.
  17.  17
    Fair Governance of Biotechnology: Patents, Private Governance, and Procedural Justice.Nienke de Graeff, Léon E. Dijkman, Karin R. Jongsma & Annelien L. Bredenoord - 2018 - American Journal of Bioethics 18 (12):57-59.
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  18.  11
    Potentiality switches and epistemic uncertainty: the Argument from Potential in times of human embryo-like structures.Ana M. Pereira Daoud, Wybo J. Dondorp, Annelien L. Bredenoord & Guido M. W. R. De Wert - 2024 - Medicine, Health Care and Philosophy 27 (1):37-48.
    Recent advancements in developmental biology enable the creation of embryo-like structures from human stem cells, which we refer to as human embryo-like structures (hELS). These structures provide promising tools to complement—and perhaps ultimately replace—the use of human embryos in clinical and fundamental research. But what if these hELS—when further improved—also have a claim to moral status? What would that imply for their research use? In this paper, we explore these questions in relation to the traditional answer as to why human (...)
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  19.  20
    Ancillary Care Obligations for Social Media Platforms.Annelien L. Bredenoord & Martin Boeckhout - 2017 - American Journal of Bioethics 17 (3):29-31.
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  20.  46
    Toward a “Post-Posthuman Dignity Area” in Evaluating Emerging Enhancement Technologies.Johannes J. M. van Delden, Rieke van der Graaf & Annelien L. Bredenoord - 2010 - American Journal of Bioethics 10 (7):55-57.
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  21.  4
    Nature‐versus‐nurture considered harmful: Actionability as an alternative tool for understanding the exposome from an ethical perspective.Caspar W. Safarlou, Annelien L. Bredenoord, Roel Vermeulen & Karin R. Jongsma - forthcoming - Bioethics.
    Exposome research is put forward as a major tool for solving the nature‐versus‐nurture debate because the exposome is said to represent “the nature of nurture.” Against this influential idea, we argue that the adoption of the nature‐versus‐nurture debate into the exposome research program is a mistake that needs to be undone to allow for a proper bioethical assessment of exposome research. We first argue that this adoption is originally based on an equivocation between the traditional nature‐versus‐nurture debate and a debate (...)
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  22.  18
    Better governance starts with better words: why responsible human tissue research demands a change of language.Annelien L. Bredenoord, Sarah N. Boers, Karin R. Jongsma & Michael A. Lensink - 2022 - BMC Medical Ethics 23 (1):1-10.
    The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...)
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  23.  4
    Uncertain futures and unsolicited findings in pediatric genomic sequencing: guidelines for return of results in cases of developmental delay.Candice Cornelis, Wybo Dondorp, Ineke Bolt, Guido de Wert, Marieke van Summeren, Eva Brilstra, Nine Knoers & Annelien L. Bredenoord - 2023 - BMC Medical Ethics 24 (1):1-10.
    Background Massively parallel sequencing techniques, such as whole exome sequencing (WES) and whole genome sequencing (WGS), may reveal unsolicited findings (UFs) unrelated to the diagnostic aim. Such techniques are frequently used for diagnostic purposes in pediatric cases of developmental delay (DD). Yet policy guidelines for informed consent and return of UFs are not well equipped to address specific moral challenges that may arise in these children’s situations. Discussion In previous empirical studies conducted by our research group, we found that it (...)
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  24.  6
    Alleviating the burden of malaria with gene drive technologies? A biocentric analysis of the moral permissibility of modifying malaria mosquitoes.Nienke de Graeff, Karin Rolanda Jongsma & Annelien L. Bredenoord - 2023 - Journal of Medical Ethics 49 (11):765-771.
    Gene drive technologies (GDTs) have been proposed as a potential new way to alleviate the burden of malaria, yet have also raised ethical questions. A central ethical question regarding GDTs relates to whether it is morally permissible to intentionally modify or eradicate mosquitoes in this way and how the inherent worth of humans and non-human organisms should be factored into determining this. Existing analyses of this matter have thus far generally relied on anthropocentric and zoocentric perspectives and rejected an individualist (...)
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  25.  8
    The boundary problem: Defining and delineating the community in field trials with gene drive organisms.Nienke de Graeff, Isabelle Pirson, Rieke van der Graaf, Annelien L. Bredenoord & Karin R. Jongsma - 2023 - Bioethics 37 (6):600-609.
    Despite widespread and worldwide efforts to eradicate vector-borne diseases such as malaria, these diseases continue to have an enormous negative impact on public health. For this reason, scientists are working on novel control strategies, such as gene drive technologies (GDTs). As GDT research advances, researchers are contemplating the potential next step of conducting field trials. An important point of discussion regarding these field trials relates to who should be informed, consulted, and involved in decision-making about their design and launch. It (...)
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  26.  25
    Personalized assent for pediatric biobanks.Noor A. A. Giesbertz, Karen Melham, Jane Kaye, Johannes J. M. van Delden & Annelien L. Bredenoord - 2016 - BMC Medical Ethics 17 (1):59.
    Pediatric biobanking is considered important for generating biomedical knowledge and improving health care. However, the inclusion of children’s samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent (...)
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  27.  10
    Geometry of Trust: Why We Need to Distinguish Between Horizontal and Vertical Trust.Karin R. Jongsma & Annelien L. Bredenoord - 2018 - American Journal of Bioethics 18 (4):48-50.
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  28.  17
    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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  29.  18
    Participant selection for preventive Regenerative Medicine trials: ethical challenges of selecting individuals at risk.Sophie L. Niemansburg, Michelle G. J. L. Habets, Wouter J. A. Dhert, Johannes J. M. van Delden & Annelien L. Bredenoord - 2015 - Journal of Medical Ethics 41 (11):914-916.
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  30.  3
    Leaving Users in the Dark: A Call to Define Responsibilities toward Users of Neural Implanted Devices.Odile C. Van Stuijvenberg, Annelien L. Bredenoord, Marike L. D. Broekman & Karin R. Jongsma - 2022 - American Journal of Bioethics Neuroscience 13 (4):233-236.
    Sankary et al. (2022) report the results of an empirical study on research participant experiences of exiting research at the end of clinical trials of deep-brain-stimulation (DBS) and responsive n...
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  31.  32
    Scanning the body, sequencing the genome: Dealing with unsolicited findings.Roel H. P. Wouters, Candice Cornelis, Ainsley J. Newson, Eline M. Bunnik & Annelien L. Bredenoord - 2017 - Bioethics 31 (9):648-656.
    The introduction of novel diagnostic techniques in clinical domains such as genomics and radiology has led to a rich ethical debate on how to handle unsolicited findings that result from these innovations. Yet while unsolicited findings arise in both genomics and radiology, most of the relevant literature to date has tended to focus on only one of these domains. In this article, we synthesize and critically assess similarities and differences between “scanning the body” and “sequencing the genome” from an ethical (...)
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