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Diagnosis – AI or Doctor? (DiAD) Investigating the Ethical and Practical Implications of Patient use of Chatbot AIs Compared with Human Doctors in Internal Medicine

Research Project | 3 Project Members

Released in November 2022, ChatGPT gained over 100 million users in just two months to become the fastest growing application of all time. This Natural Language Processing Artificial Intelligence is capable of producing human-like responses on an incredibly large range of topics. It is inevitable that ordinary people will use it for medical diagnostic purposes, much as they do any other search engine. Although it, and other NLP tools like it, are comparable in diagnostic accuracy to human doctors, their use as substitutes to, or surrogates for, human doctors raises numerous ethical challenges. Not least of which is the impact this will have on vital doctor-patient relationships in under-served communities.

Current research focuses on quantitative research which does not take into consideration real-world patient experiences. The proposed project will provide an in-depth analysis of real-world patient experiences of using NLP tools in comparison to human doctors.

Following a scoping review, the project will use a novel qualitative research methodology. Real-world patients will be interviewed before a doctor’s consultation. They will then immediately engage in a similar mock consultation with an NLP tool. Data will be subjected to thematic analysis and recommendations produced for NLP tool developers and Swiss policy makers.

Decision-making capacity in birth: an exploratory study (DMC Birth)

Research Project | 4 Project Members

Imported from Grants Tool 4701639

Meine Rechte während der Geburt

Research Project | 3 Project Members

Dialog zwischen Wissenschaft und Gesellschaft
Ca. 80 000 Kinder werden jährlich in der Schweiz geboren. Die meisten Babys kommen im Spital zur Welt. Andere in Geburtshäusern oder zuhause. Oft verläuft eine Geburt gut für Gebärende, Babys und Familien. Manchmal jedoch verläuft die Geburt nicht so wie gewünscht. Dann ist es gut, die eigenen Rechte zu kennen.
Studien zeigen, dass es häufig zu Rechtsverletzungen während der Geburt kommt, auch in der Schweiz. Dies hat Auswirkungen auf die Gesundheit von Gebärenden und Babies. Einbezug und Entscheidungkontrolle sind erwiesenermassen wichtig für eine gute Geburt. Mehr reproduktive Gerechtigkeit durch eine bessere Informierung und eine Stärkung der Gebärenden sind also dringend gefordert. So kann nicht nur zu einer selbstbestimmten Geburt und einer respektvollen Geburtsbetreuung beigetragen, sondern zugleich die Geburtserfahrungen und die Gesundheit der Gebärenden und Kinder verbessert werden. Beispielsweise fordert die WHO die Vermittlung von reproduktiven Rechten als elementaren Teil der Geburtsvorbereitung. Vor diesem Hintergrund hat unser 18-monatiges Agora-Projekt folgende Ziele:
1. Austausch zwischen Gebärenden, Hebammen und Forschenden über reproduktive Rechte;
2. Vermittlung von Kenntnissen über und Sensibilisierung für reproduktive Rechte;
3. Empowerment, sodass Gebärende sich besser dafür einsetzen können, was sie wollen und was ihnen zusteht.
Was gehört für die Gebärenden zu einer guten Geburt? Was sind die ethischen und rechtlichen Rahmenbedingungen? Was bedeutet freie und informierte Einwilligung während der Geburt? Wie können sich die Gebärenden und ihre Begleitpersonen vorbereiten, sodass sie eine möglichst gute Geburtserfahrung machen? Diese und weitere Fragen behandeln wir in 20 Veranstaltungen zu reproduktiven Rechten unter der Geburt, die im Rahmen von Geburtsvorbereitungskursen in Geburtseinrichtungen in der Deutschschweiz durchgeführt werden.

**Projektpartner*innen**
·      Prof. Dr. Mélanie Levy, Université de Neuchâtel
·      Prof. Dr. Nicholas Rubashkin, University of California San Francisco, USA
·      Barbara Stocker Kalberer, Schweizerischer Hebammenverband
·      Franziska Summermatter, Hebammenpraxis Zürich

Fair Reimbursement system for OrphaN Drugs (FROND)

Research Project | 2 Project Members

Orphan drugs, highly specialized treatments for very small groups of patients, present great opportunities and challenges for modern health care systems.They come with a high price, and if health insurances do not reimburse them, they are not accessible to most patients. However, orphan drugs often do not meet reimbursement criteria due to low cost-effectiveness and lack of clinical evidence. Nevertheless, many orphan drugs get exceptions from these criteria and are reimbursed anyway. Yet, the more orphan drugs are authorized, the less their reimbursement can be based on exceptions, since this would require allocating a substantial portion of the healthcare budget to a small part of the population. Because orphan drug reimbursement is an ethical dilemma without a clear-cut solution, many authors call for public debates to legitimately solve this dilemma. This project aims to investigate this phenomenon from an ethical and societal perspective. A systematic review of reason will be applied to the scientific literature to identify and quantify moral reasons used in scientific discussions. A newspaper content analysis will provide insights into the public debates of Switzerland, Germany, and the United Kingdom.

Ethical considerations in pediatric genome-wide sequencing

Research Project | 5 Project Members

Whole exome sequencing (WES) and whole genome sequencing (WGS) are increasingly used in healthcare and research to identify genetic variations, assisting disease diagnosis and prognosis as well as treatment decisions. Besides many potential benefits of WES/WGS for medical care, it also involves a number of important regulatory and ethical challenges. However, there is currently a lack of empirical research on the ethical issues surrounding WGS/WES in Switzerland. It is crucial to investigate the country-specific attitudes, values, beliefs and resulting needs of the relevant stakeholders in Switzerland as an assessment of these is highly valuable for any policy guidance and ethical use of the techniques. The study has the following main objectives:
A . Conduct empirical studies to inform and contextualise the ethical analysis;
Undertake a systematic qualitative literature review to gather evidence regarding the full spectrum of ethical issues involved in whole-genome/ whole exome-sequencing
Explore empirically the attitudes of clinical geneticists regarding WGS/WES in Switzerland and Germany
Explore empirically the attitudes of parents involved in WES of their children in Switzerland
B . Develop normative conclusions with regard to the regulation and practice regarding WGS/WES in Switzerland
The first objective (A) is met by systematic qualitative review methodology and qualitative research methodology (thematic analysis). Semi-structured interviews in Switzerland and Germany are carried out with geneticists and parents of children involved in WES. These exploratory interviews are not based on a predefined understanding on how it should be dealt with WES/WGS, but seek to capture the needs from the perspective of clinical geneticists and parents involved. For the second objective (B) Empirical Bioethics methodologies will be employed. The normative analysis in this project will constantly accompany the empirical data collection. It will concentrate on the overall ethical research question of this PhD: How should be dealt with WGS/WES in an ethical manner in Switzerland - especially regarding children? This thesis adds both to the growing international body of research on responsible and ethically justifiable uses and implementation of new technologies in genomics as well as to filling the gap of research on ethical issues regarding WGS/WES in Switzerland, thus providing key information for Swiss stakeholders in genetics and healthcare services.