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Prof. Dr. Bernice Simone Elger

Institute for Biomedical Ethics (IBMB)
Profiles & Affiliations

Projects & Collaborations

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Neuro-Ethos: The Ethics of Neurotechnology Advancements

Research Project  | 8 Project Members

In the evolving field of Bionic and Robotic Devices, Neurotechnology, particularly Neural Implants, stands as an increasingly influential sector. However, as Neural Implant technology advances, a significant challenge has emerged with manufacturers abandoning projects, leading to a phenomenon known as "abandonware." This leaves individuals who rely on these implants in vulnerable positions and raises serious ethical, clinical, and legal concerns.

The NeuroEthos project aims to comprehensively examine the implications of neural implant abandonware. It seeks to understand the reasons for such abandonments and their impacts on individuals and society, focusing on ethical, technical, clinical, and policy dimensions.

The project employs a multifaceted approach, starting with mapping and analyzing past Neurotech failures, with the goal to gather a comprehensive Body of Evidence. This is followed by conducting interviews with patients and key opinion leaders to gather firsthand experiences. The project then moves to a normative-empirical analysis to refine recommendations and adapt ethical frameworks. Finally, it focuses on dissemination and awareness raising to share findings and recommendations with the NeuroTech industry, scientific community, and patient groups.

NeuroEthos is the first project to address neural implant abandonware from a scientific and empirical perspective. The project aims to benefit patients by analyzing the individual impact of abandonware and revising clinical trial and consent processes. It also aims to raise awareness at the societal and healthcare levels and propose actionable societal recommendations. This initiative is not only urgent but also a moral imperative, aiming to safeguard individual well-being and societal integrity in the face of rapidly advancing Neurotechnology as a frontier in Bionic and Robotic Devices.


The NeuroEthos project is funded by the Swiss Network for International Studies (SNIS) as an International Collaborative Project.


Read more about the project in the latest issue of UniNova magazine, the University of Basel's research magazine.

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Ethical and Social Implications of New Plant Breeding Technologies: Integrating Stakeholder Perspectives on Human and Planetary Health (BREETH)

Research Project  | 3 Project Members

New plant breeding technologies (NBTs) such as genome editing enable more efficient and flexible innovations in agriculture and food production than conventional breeding methods. Therefore, they can potentially contribute to global food security and improve public health and environmental sustainability. However, NBTs are currently covered by the Swiss moratorium on genetically modified organisms (GMOs). The regulation of NBTs is difficult due to the low societal and political acceptance of GMOs and their ethical and social impacts. These issues need to be addressed to overcome polarization and enable a conscious public and political debate.


This project aims to provide an ethical assessment of the social and societal impacts of NBTs. We will combine ethical analysis with empirical analysis of public debates and stakeholder perceptions, with a focus on the social acceptance of NBTs in Switzerland. The results of the research project will help to analyze the nature and possible reasons for the low societal acceptance of GMOs in Switzerland and its implications for the regulation of NBTs in Switzerland and the European Union.

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Regulating New Plant Breeding Technologies: An international and interdisciplinary perspective

Research Project  | 2 Project Members

Background and rationale:

Despite their potential for more sustainable global food production and growing evidence on their security, New Plant Breeding Technologies (NBTs) are currently strictly regulated in Switzerland and the European Union. They fall under the regulations for Genetically Modified Organisms (GMOs), whose use is currently forbidden in Switzerland and burdened by complicated administrative processes in the EU. Scientists have been voicing their dissatisfaction with these legislations.


Objectives and aims:

Few studies have assessed regulations of GMOs from a perspective that combines international law with an empirical bioethics approach. This project addresses this gap by combining a legal part on the international law dimension of GMO regulations with an empirical part that explores attitudes of two major stakeholder groups: lawyers and plant scientists from Switzerland and from countries with more permissive regulations. We will compare attitudes of both stakeholder groups and of Swiss and international interviewees to understand how they balance involved interests. A normative legal and ethics analysis will be carried out by the project team to integrate and balance health, environmental and sustainability concerns and to propose a new framework for evaluating GMO regulations in Swiss law that integrates under-researched aspects of international law.


Methods:

Traditional legal and ethical desk top research methods will be used to conduct a legal and ethical assessment of the regulations of NBTs, integrating Swiss law and international law and its relevance for Switzerland, as well as internationally. We will combine a legal analysis of international laws and standards relevant to the plant breeding and food industry with a qualitative stakeholder interview study.

We will carry out 60-80 individual interviews combining four cohorts of 15-20 interviewees: Swiss law scholars, international law scholars, Swiss plant scientists, and international scientists (international means here: from countries that have more permissive regulations). In addition, 4 Focus Groups (FG), each bringing together 6-10 participants, will be carried out. All FG will be composed of participants from all four cohorts.

In a final part, we will triangulate the results from all previous parts: we will compare the balancing of interests carried out by the interviewed persons with a legal and ethical balancing of interests. These findings will serve as a "de lege feranda" approach, in order to make policy recommendations. The latter will be discussed with a larger group of Swiss and international stakeholders to broaden the debate by raising awareness of relevant international law applicable in Switzerland, as well as of approaches from the international countries included in the empirical interview part.


Expected results and impact in the field:

The international focus of this study will fill a gap concerning legal research, as the implications of different parts of international law (WTO, UN etc.) for the discussion in Switzerland are not fully clear at present. The empirical part will be a way to explore differences in the knowledge and use of available facts and evidence, as well in the balancing of interests of two stakeholder groups that play a major role for the development of new legal regulations. Project results will make larger Swiss stakeholder groups aware of the role of international law and of attitudes in non-European countries and inform recommendations on how to regulate NBTs in Switzerland in line with existing international (trade and environment) law ratified by Switzerland.

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Towards EQUIty in MEDtech - Reducing Gender and Sex Bias in Active Implantable Medical Devices [EQUIMED]

Research Project  | 5 Project Members

EQUIMED investigates sex and gender inequalities in implantable medical devices. Through interviews and multidisciplinary research, it aims to improve equity in medical technology.

Despite technological advancements, medical devices do not function the same way for men and women, with women experiencing more adverse effects. Implantable devices are particularly affected by sex and gender biases. EQUIMED studies this issue in Switzerland, the UK, and Germany by analyzing data, interviewing experts and patients, and evaluating ethical policies. Its goal is to make these devices safer and more effective for everyone.

EQUIMED seeks to understand and reduce these inequalities by exploring why women and gender minorities face higher risks and what factors contribute to these disparities. Its research will support the development of fairer solutions for implantable medical devices, such as pacemakers and neural implants, while also setting new ethical standards in medical technology.

By addressing biases in research, design, and regulation, EQUIMED aims to improve the safety of medical devices for all. The project will provide evidence-based recommendations to help policymakers, manufacturers, and healthcare professionals create more inclusive technologies. Collaboration between regulators, industry, and healthcare providers is essential to ensuring safer and fairer medical devices for everyone.

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Agequake in prisons: Improving the knowledge and awareness on aging in prisons

Research Project  | 3 Project Members

Der demografische Wandel hin zu einer alternden Gesellschaft macht vor den Mauern nicht Halt. Ältere inhaftierte Personen sind eine stetig wachsende, aber gleichzeitig vergessene Bevölkerungsgruppe. Als typischen Gefangenen stellt man sich häufig eine junge, körperlich starke, männliche Person vor. In der Schweiz ist jedoch bereits jede fünfte inhaftierte Person im Alter über 50. Diese Entwicklung stellt Gefängnisse vor eine neue Herausforderung: Wer ist diese Altersgruppe? Welche Bedürfnisse haben sie? Und wie sollen wir diese versorgen? Mit diesem Öffentlichkeitsprojekt soll das Thema des «Altern im Gefängnis» vor die Mauern gebracht werden, um diesem aktuellen und kontroversen Thema Raum zu geben.

Das Forschungsteam um Prof. Dr. Bernice Elger hat über die letzten zehn Jahre hinweg einen einzigartigen Datensatz und neue Erkenntnisse zur alternden Bevölkerungsgruppe der Schweizer Justizanstalten geschaffen. Während zwei vom SNF-finanzierten Grossprojekten wurden die psychischen, physischen und sozialen Bedürfnissen der älteren inhaftierten Bevölkerung untersucht. Diese äusserst wichtigen Analysen wurden bereits in internationalen Wissenschaftszeitschriften publiziert. Nun soll dieses Wissen auch der Allgemeinbevölkerung zugänglich gemacht werden.

Mit schriftlichen, visuellen und auditiven Medien vermitteln wir unser Expertenwissen an Schüler, Studenten, Gefängnispersonal, medizinisches Personal sowie der allgemeinen Öffentlichkeit. Eine Fotowanderausstellung wird zum Zentrum für verschiedene Workshops und Podiumsdiskussionen. Weiterhin wird mit einer Sonderausgabe des Magazins zum Straf- und Massnahmenvollzug vom Bundesamt für Justizvollzug (#prison-info) ein Wissenshandbuch zum «Altern im Gefängnis» geschaffen. Dies wird online und auf Papier für Angestellte des Schweizer Gefängnissystems, Besucher der Fotoausstellung sowie der interessierten Öffentlichkeit zugänglich sein. Schliesslich wird ein übersichtlicher Flyer mit den wichtigsten Informationen in Kürze, spezifisch für die älteren inhaftierten Personen, geschaffen.

Dieses Öffentlichkeitsprojekt bringt ein stilles, aber hoch aktuelles Thema der breiten Öffentlichkeit zum Anfassen nahe. Mit unserem immensen Wissensfundus und dem kritischen Austausch mit Experten sowie Laien möchten wird die Auseinandersetzung mit diesem vernachlässigten Thema fördern. Dies, um Wissen über diejenigen zu verbreiten, die unter uns leben, aber unsichtbar sind.


Die Fotowanderausstellung zu ‘Altern im Gefängnis’

29.03. - 05.04. 2024 - Schloss Lenzburg

15.04. - 30.04. 2024 - Konferenz Schweizer Gefängnisärzte

13.05. - 23.05. 2024 - Zürcher Gemeinschaftszentren

23.05. - 13.06. 2024 - Haute école de santé Genève

16.10. - 06.11. 2024 - FHNW Muttenz


Der Fotograf

Der Basler Fotograf Peter Schulthess entdeckte zufällig vor über 20 Jahren fotografisch die Welt hinter Gittern, mit ihrer eigenen Architektur, Abläufen und Eigenheiten. Er begann, sich mit dem Thema Justizvollzug grundlegend auseinanderzusetzen und schnell entwickelte sich daraus eine Eigendynamik: mehrere Bildbände, Fotoausstellungen und Fachbücher waren die Folgen. Seine Bilder erscheinen regelmässig z.B. im #prison-info des Bundesamtes für Justiz.

#prison-info

www.prison.photography

www.prisonphotoproject.pt