Publications

@article{nokey,

title = {From Research to Policy: A Qualitative Exploration of Dementia Prevention Efforts in Switzerland},

author = {Mattia Andreoletti and Alessandro Blasimme},

year  = {2023},

date = {2023-09-30},

urldate = {2023-09-30},

keywords = {},

pubstate = {forthcoming},

tppubtype = {article}

}

@article{nokey,

title = {Dilemmas of intervention: From person-centred to alienation-centred dementia care},

author = {Leibing Annette and Stephen Katz },

year  = {2023},

date = {2023-08-23},

urldate = {2023-08-23},

journal = {Sociology of Health and Illness},

keywords = {},

pubstate = {forthcoming},

tppubtype = {article}

}

@article{nokey,

title = {Accelerated approval. Meeting the ethical yardstick},

author = {Mattia Andreoletti and Alessandro Blasimme },

doi = {https://doi.org/10.1111/bioe.13191},

year  = {2023},

date = {2023-07-01},

urldate = {2023-07-01},

journal = {Bioethics},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {Emerging technologies for preventing the ‘new’ dementia: Ambiguous optimism in the Canadian context.},

author = {Annette Leibing and Cynthia Lazzaroni and Niklas Petersen},

year  = {2023},

date = {2023-04-14},

urldate = {2023-04-14},

journal = {Medical Anthropology},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {Optimizing the Aging Brain: The BEAD Study on the Ethics of Dementia Prevention},

author = {Mattia Andreoletti and Cynthia Lazzaroni and Niklas Petersen and Shingo Segawa and Annette Leibing and Silke Schicktanz and Alessandro Blasimme},

doi = {10.14283/jfa.2023.6},

year  = {2023},

date = {2023-01-26},

urldate = {2023-01-26},

journal = {The Journal of Frailty & Aging 12(2)},

pages = {111-116},

abstract = {Dementia has lately undergone a profound reconceptualization. Long conceived of as an unpreventable process of mental deterioration, current evidence shows that it can be prevented in at least one in three cases intervening on a specified set of factors. Issues of justice and equity loom large on the implementation of dementia prevention, from a global health perspective. Our project thus embraces emerging evidence about dementia risk factors and their uneven distribution nationally and globally by specifically focusing on the situated aspects of dementia prevention. The aim of the BEAD study (Optimizing the Aging Brain? Situating Ethical Aspects in Dementia Prevention) is to dissect the ethical and clinical assumptions of this novel understanding of dementia, and to analyze how such new discourse on dementia prevention plays out in three countries: Canada, Germany and Switzerland. This study adopts a multi-perspective, comparative, qualitative approach, combining stakeholder interviews with different kinds of focused ethnographies, elaborating on conceptual, ethical, and social aspects of what we would like to call the “new dementia”. By situating the paradigmatic shifts in Alzheimer’s and dementia research within current aging cultures and contemporary social policies, we aim to initiate a debate about the often implicit unresolved social, ethical, and political implications and preconditions of the medical understanding and handling of cognitive disorders.},

keywords = {},

pubstate = {published},

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}

@article{pmid32091238,

title = {Attitudes towards prediction and early diagnosis of late-onset dementia: a comparison of tested persons and family caregivers},

author = {Johann Leopold Lohmeyer and Zümrüt Alpinar-Sencan and Silke Schicktanz},

doi = {10.1080/13607863.2020.1727851},

issn = {1364-6915},

year  = {2021},

date = {2021-01-01},

urldate = {2021-01-01},

journal = {Aging Ment Health},

volume = {25},

number = {5},

pages = {832--843},

abstract = { The focus on early detection of dementia and Mild Cognitive Impairment (MCI) diagnosis has entered the clinics' daily routine. However, there exist epistemic uncertainty and moral concerns whether early detection and prediction of dementia is clinically meaningful for the people affected, primarily due to the lack of effective treatment options. In this study, we adopted qualitative research methods. Twelve face-to-face interviews with tested persons with MCI and early dementia and five focus groups with family caregivers were conducted in Germany in order to explore and analyze their understanding and assessments of early detection and prediction of dementia in memory clinics. Our study revealed that there was much uncertainty among the participants diagnosed with MCI especially when compared to the participants with an early dementia diagnosis. Their uncertainty concerned the meaning of a 'MCI' diagnosis as well as the validity of specific biomarker test results. Moreover, we identified different lines of moral issues for and against the tests among the participants. They include a) inter-familiar conflicts of interest in the initial phase of memory problems, b) the hope for (future) therapy and prevention, c) the desire for easier access to experts in memory clinics, d) advance planning, e) stigmatization, as well as, f) suicide as an option to avoid the future loss of self-determination. Current clinical and communication strategies only partly address the perspectives and needs of the affected. A standardized and ethically reflected procedure of the information provided by professionals before testing and afterwards, during disclosure, seems necessary. Further, longitudinal studies are needed to improve our knowledge about the experiences tested persons and family caregivers have with different levels of stigma.},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{leibing_turn_2020,

title = {The turn towards prevention – moral narratives and the vascularization of Alzheimer’s disease},

author = {Annette Leibing},

url = {https://www.tandfonline.com/doi/full/10.1080/14636778.2019.1637722},

doi = {10.1080/14636778.2019.1637722},

issn = {1463-6778, 1469-9915},

year  = {2020},

date = {2020-01-01},

urldate = {2020-01-01},

journal = {New Genetics and Society},

volume = {39},

number = {1},

pages = {31--51},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{pmid31509066,

title = {A New Web-Based Big Data Analytics for Dynamic Public Opinion Mapping in Digital Networks on Contested Biotechnology Fields},

author = {Virginie Tournay and Mathieu Jacomy and Andra Necula and Annette Leibing and Alessandro Blasimme},

doi = {10.1089/omi.2019.0130},

issn = {1557-8100},

year  = {2020},

date = {2020-01-01},

urldate = {2020-01-01},

journal = {OMICS},

volume = {24},

number = {1},

pages = {29--42},

abstract = {The expression "public opinion" has long been part of common parlance. However, its value as a scientific measure has been the topic of abundant academic debates over the past several decades. Such debates have produced more variety and contestations rather than consensus on the very definition of public opinion, let alone on how to measure it. This study reports on the usefulness of web-based big data digital network analytics in deciphering the distributed meanings and sense making related to controversial biotechnology applications. Using stem cell therapies as a case study, we argue that such digital network analysis can complement the traditional opinion polls while avoiding the sampling bias that is typical of opinion polls. Although the polls cannot account for the opinion dynamics, combining them with web-based big data analysis can shed light on three dimensions of public opinion essential for sense making: counts or volume of opinion data, content, and movement of opinions. This approach is particularly promising in the case of ongoing scientific controversies that increasingly overflow into the public sphere morphing into public political debates. In particular, our study focuses as a case study on public controversies over the clinical provision of stem cell therapies. Using web entities specifically addressing stem cell issues, including their dynamic aggregation, the internal architecture of the web corpus we report in this study brings the third dimension of public opinion (movement) into sharper focus. Notably, the corpus of stem cell networks through web connectivity presents hot spots of distributed meaning. Large-scale surveys conducted on these issues, such as the Eurobarometer of Biotechnology, reveal that European citizens only accept research on stem cells if they are highly regulated, while the stem cell digital network analysis presented in this study suggests that distributed meaning is promise centeredness. Although major scientific journals and companies tend to structure public opinion networks, our finding of promise centeredness as a key ingredient of distributed meaning and sense making is consistent with therapeutic tourism that remains as an important facet of the stem cell community despite the lack of material standards. This new approach to digital network analysis has crosscutting corollaries for rethinking the notion of public opinion, be it in electoral preferences or as we discuss in this study, for new ways to measure, monitor, and democratically govern emerging technologies.},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{pmid30066235,

title = {Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel},

author = {Silke Schicktanz and Nitzan Rimon-Zarfaty and Aviad Raz and Karin Jongsma},

doi = {10.1007/s11673-018-9871-8},

issn = {1176-7529},

year  = {2018},

date = {2018-09-01},

urldate = {2018-09-01},

journal = {J Bioeth Inq},

volume = {15},

number = {3},

pages = {369--380},

abstract = {This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016-2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients' individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more.},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{pmid29468161,

title = {Big Data and Dementia: Charting the Route Ahead for Research, Ethics, and Policy},

author = {Marcello Ienca and Effy Vayena and Alessandro Blasimme},

doi = {10.3389/fmed.2018.00013},

issn = {2296-858X},

year  = {2018},

date = {2018-01-01},

urldate = {2018-01-01},

journal = {Front Med (Lausanne)},

volume = {5},

pages = {13},

abstract = {Emerging trends in pervasive computing and medical informatics are creating the possibility for large-scale collection, sharing, aggregation and analysis of unprecedented volumes of data, a phenomenon commonly known as big data. In this contribution, we review the existing scientific literature on big data approaches to dementia, as well as commercially available mobile-based applications in this domain. Our analysis suggests that big data approaches to dementia research and care hold promise for improving current preventive and predictive models, casting light on the etiology of the disease, enabling earlier diagnosis, optimizing resource allocation, and delivering more tailored treatments to patients with specific disease trajectories. Such promissory outlook, however, has not materialized yet, and raises a number of technical, scientific, ethical, and regulatory challenges. This paper provides an assessment of these challenges and charts the route ahead for research, ethics, and policy.},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{pmid30336105,

title = {Situated Prevention: Framing the },

author = {Annette Leibing},

doi = {10.1177/1073110518804232},

issn = {1748-720X},

year  = {2018},

date = {2018-01-01},

urldate = {2018-01-01},

journal = {J Law Med Ethics},

volume = {46},

number = {3},

pages = {704--716},

abstract = {This article is about the recent and profound changes in the conceptualization of dementia, especially the turn towards prevention. The main argument is that more attention needs to be paid to "situated prevention" - the framing of internationally circulating data on the "new dementia" in different contexts. After introducing some of the more problematic issues related to the "new dementia," a first comparison of major preventive clinical trials in Europe and in North America will be provided. The major insight stemming from situating the global message of preventing dementia is recognition of the responsibility researchers and policy makers bear with respect to the implicit and potential moral narratives in emerging scientific landscapes.},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{pmid30034208,

title = {Health Research with Big Data: Time for Systemic Oversight},

author = {Effy Vayena and Alessandro Blasimme},

doi = {10.1177/1073110518766026},

issn = {1748-720X},

year  = {2018},

date = {2018-01-01},

urldate = {2018-01-01},

journal = {J Law Med Ethics},

volume = {46},

number = {1},

pages = {119--129},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{pmid28188557,

title = {Physical frailty, sarcopenia, and the enablement of autonomy: philosophical issues in geriatric medicine},

author = {Alessandro Blasimme},

doi = {10.1007/s40520-016-0714-3},

issn = {1720-8319},

year  = {2017},

date = {2017-02-01},

urldate = {2017-02-01},

journal = {Aging Clin Exp Res},

volume = {29},

number = {1},

pages = {59--63},

abstract = {Physical frailty and loss of muscular mass (sarcopenia) are believed to be predictors of age-related conditions, such as disability and loss of autonomy. In this paper, I show that what in political and moral philosophy has come to be known as "the capability approach" may indeed provide much needed conceptual clarification in the area of frailty research. Other than being useful at the theoretical level, the capability approach can definitely help in the implementation of clinical guidelines and public health measures aimed at translating the results that are accumulating from frailty research. I will first briefly review the main philosophical tenets of the capability approach, and then analyze how they relate to current debates about frailty and sarcopenia by introducing the notion of "enablement". Finally, I will show how my analysis bears on both clinical research in this domain and public policy aimed at tackling some of the age-related issues in an aging society.},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{pmid21448745,

title = {The ethics of 'public understanding of ethics'--why and how bioethics expertise should include public and patients' voices},

author = {Silke Schicktanz and Mark Schweda and Brian Wynne},

doi = {10.1007/s11019-011-9321-4},

issn = {1572-8633},

year  = {2012},

date = {2012-05-01},

urldate = {2012-05-01},

journal = {Med Health Care Philos},

volume = {15},

number = {2},

pages = {129--139},

abstract = {"Ethics" is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the "participatory turn" in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of "public understanding of ethics," addressing three different issues: (a) the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, (b) the normative relevance of such lay moralities for the justification of ethical decisions, and (c) the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of "public understanding of ethics" should employ.},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{,

title = {Healthy Aging: Who is Responsible?},

author = {Ann Kolanowski},

doi = {10.1093/geront/gnab125},

year  = {2022},

date = {2022-06-01},

urldate = {2022-06-01},

journal = {The Gerontologist},

volume = {62},

number = {5},

pages = {795-796},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {Annette Leibing und Silke Schicktanz (Hrsg) (2020) Preventing Dementia? – Critical Perspectives on a New Paradigm of Preparing for Old Age},

author = {Eike Buhr},

doi = {10.1007/s00481-022-00683-0},

isbn = {978-1-78920-909-9},

year  = {2022},

date = {2022-01-26},

journal = {Ethik in der Medizin},

volume = {34},

pages = {133–135},

keywords = {},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {Annette Leibing and Silke Schicktanz (eds): Preventing dementia?: Critical perspectives on a new paradigm of preparing for old age},

author = {Niklas Petersen and Julia Perry},

doi = {10.1007/s40592-021-00135-3},

year  = {2021},

date = {2021-09-08},

journal = {Monash Bioethics Review},

volume = {39},

issue = {2},

abstract = {Given the lack of effective curative treatment options and in light of a significant reconceptualization of Alzheimer's disease, the focus of dementia research has shifted towards prevention, risk prediction, and detection in very early disease stages. In the context of these shifts, the edited volume Preventing Dementia?: Critical Perspectives on a New Paradigm of Preparing for Old Age (edited by Annette Leibing and Silke Schicktanz) collects critical and insightful positions on the new paradigm of dementia prevention from an interdisciplinary and international perspective. The editors introduce the overarching topic of prevention by reflecting on the optimistic framing of modifiable risk factors and their novelty in the dementia context. Leibing and Schicktanz call for a cautious reception of the findings in the Lancet report(s) and draw attention to epistemic, ethical, and socio-political issues of what the editors term the contested "new dementia" and to the effect that this might have on rethinking individual and societal perceptions of aging. The contributions of the anthology depict the social and cultural dimensions of dementia discourses and consider the ethical implications of the changing conceptions of Alzheimer's disease as well as the shift towards early disease stages and prevention. With this, the anthology initiates a debate about the often implicit unresolved social, ethical, and political implications and preconditions of the medical understanding and handling of cognitive disorders.},

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}