ZusammenfassungMedizinethische Forschung wird häufig unter Verwendung sozialempirischer Methoden durchgeführt. Insbesondere die Anwendung von Methoden der qualitativen Sozialforschung hat eine breite Akzeptanz gefunden. Nach Kenntnis der Autoren fehlen allerdings bislang Untersuchungen, die den spezifischen Beitrag qualitativer Sozialforschung für medizinethische Untersuchungen unter Bezugnahme auf die Merkmale qualitativer Methoden darlegen. Ausgehend von einem handlungsorientierenden medizinethischen Forschungsvorhaben zur Unterstützung der Entscheidungsfindung in der Onkologie wird der Beitrag der verwendeten qualitativen Methoden für das Forschungsvorhaben unter Bezugnahme auf zwei Kennzeichen qualitativer Sozialforschung – Rekonstruktion der sozialen (...) Praxis und Explikation von informellem Wissen – ausgeführt. Den Abschluss bilden eine Analyse von Limitationen der Verwendung qualitativer Forschungsmethoden in medizinethischen Forschungsvorhaben sowie die Identifizierung offener Forschungsfragen. (shrink)

Empirical-ethical research constitutes a relatively new field which integrates socio-empirical research and normative analysis. As direct inferences from descriptive data to normative conclusions are problematic, an ethical framework is needed to determine the relevance of the empirical data for normative argument. While issues of normative-empirical collaboration and questions of empirical methodology have been widely discussed in the literature, the normative methodology of empirical-ethical research has seldom been addressed. Based on our own research experience, we discuss one aspect of this normative (...) methodology, namely the selection of an ethical theory serving as a background for empirical-ethical research. (shrink)

Pavarini et al. should be congratulated to their highly valuable contribution shedding light on methodological innovation for bioethics in the digital era. I see a great potential in their a...

Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE (...) study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. (shrink)

Over the past decade, non-invasive prenatal testing (NIPT) has been adopted into routine obstetric care to screen for fetal sex, trisomies 21, 18 and 13, sex chromosome aneuploidies and fetal sex determination. It is predicted that the scope of NIPT will be expanded in the future, including screening for adult-onset conditions (AOCs). Some ethicists have proposed that using NIPT to detect severe autosomal AOCs that cannot be prevented or treated, such as Huntington’s disease, should only be offered to prospective parents (...) who intend to terminate a pregnancy in the case of a positive result. We refer to this as the ‘conditional access model’ (CAM) for NIPT. We argue against CAM for NIPT to screen for Huntington’s disease or any other AOC. Next, we present results from a study we conducted in Australia that explored NIPT users’ attitudes regarding CAM in the context of NIPT for AOCs. We found that, despite overall support for NIPT for AOCs, most participants were not in favour of CAM for both preventable and non-preventable AOCs. Our findings are discussed in relation to our initial theoretical ethical theory and with other comparable empirical studies. We conclude that an ‘unconditional access model’ (UAM), which provides unrestricted access to NIPT for AOCs, is a morally preferable alternative that avoids both CAM’s fundamental practical limitations and the limitations it places on parents’ reproductive autonomy. (shrink)

Background Over the last decades, the neurosciences, behavioral sciences, and the social sciences have all seen a rapid development of innovative research methods. The field of bioethics, however, has trailed behind in methodological innovation. Despite the so-called “empirical turn” in bioethics, research methodology for project development, data collection and analysis, and dissemination has remained largely restricted to surveys, interviews, and research papers. We have previously argued for a “Design Bioethics” approach to empirical bioethics methodology, which develops purpose-built methods for investigation (...) of bioethical concerns. In this paper we compare a research tool created using a design bioethics approach to a “methods-as-usual” approach in empirical bioethics.Methods Our study compared dimensions of engagement with a digital game we created, called “Tracing Tomorrow,” to a standard vignette survey. The two tools investigated the same subject matter, digital phenotyping for mental health, in a sample of 301 UK adolescents.Results Participants who played the game reported a greater sense of presence, emotional engagement, cognitive absorption, and mental health ethics insight, compared to participants who completed the vignette survey. Perceived authenticity and curiosity/motivation to learn more was equivalent for both methods.Conclusion The results of this study highlights the importance of purpose-built methodology for empirical bioethics research. (shrink)

Given that biases can distort bioethics work, it has received surprisingly little and fragmented attention compared to in other fields of research. This article provides an overview of potentially relevant biases in bioethics, such as cognitive biases, affective biases, imperatives, and moral biases. Special attention is given to moral biases, which are discussed in terms of (1) Framings, (2) Moral theory bias, (3) Analysis bias, (4) Argumentation bias, and (5) Decision bias. While the overview is not exhaustive and the taxonomy (...) by no means is absolute, it provides initial guidance with respect to assessing the relevance of various biases for specific kinds of bioethics work. One reason why we should identify and address biases in bioethics is that it can help us assess and improve the quality of bioethics work. (shrink)

Vigorous debate over the moral propriety of cognitive enhancement exists, but the views of the public have been largely absent from the discussion. To address this gap in our knowledge, four experiments were carried out with contrastive vignettes in order to obtain quantitative data on public attitudes towards cognitive enhancement. The data collected suggest that the public is sensitive to and capable of understanding the four cardinal concerns identified by neuroethicists, and tend to cautiously accept cognitive enhancement even as they (...) recognize its potential perils. The public is biopolitically moderate, endorses both meritocratic principles and the intrinsic value of hard work, and appears to be sensitive to the salient moral issues raised in the debate. Taken together, these data suggest that public attitudes toward enhancement are sufficiently sophisticated to merit inclusion in policy deliberations, especially if we seek to align public sentiment and policy. (shrink)

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 (...) on patients’ and healthy research participants’ experiences and views regarding consent to biobank research in light of ethical principles for appropriate information and consent. (shrink)

Cross-border reproductive care (CBRC) can be defined as the movement from one jurisdiction to another for medically assisted reproduction (MAR). CBRC raises many ethical concerns that have been addressed extensively. However, the conclusions are still based on scarce evidence even considering the global scale of CBRC. Empirical ethics appears as a way to foster this ethical reflection on CBRC while attuning it with the experiences of its main actors. To better understand the ‘in and out’ situation of CBRC in Canada, (...) we conducted an ethnographic study taking a ‘critically applied ethics’ approach. This article presents a part of the findings of this research, obtained by data triangulation from qualitative analysis of pertinent literature, participant observation in two Canadian fertility clinics and 40 semidirected interviews. Based on participants’ perceptions, four themes emerged: (1) inconsistencies of the Canadian legal framework; (2) autonomy and the necessity to resort to CBRC; (3) safety and the management of CBRC individual risks; and (4) justice and solidarity. The interaction between these four themes highlights the problematic of ‘reproductive outsourcing’ that characterised the Canadian situation, a system where the controversial aspects of MAR are knowingly pushed outside the borders. (shrink)