@article{RolfesBittnerFangerauetal., author = {Rolfes, Vasilija and Bittner, Uta and Fangerau, Heiner and Weber, Karsten}, title = {Is it all about revising, correcting, and transferring genes?}, series = {The American Journal of Bioethics}, volume = {20}, journal = {The American Journal of Bioethics}, number = {8}, publisher = {Taylor \& Francis}, doi = {10.1080/15265161.2020.1782526}, pages = {30 -- 32}, language = {en} } @incollection{Weber, author = {Weber, Karsten}, title = {Civil Society as a Means against Hate Speech}, series = {Crisis and critique: philosophical analysis and current events}, booktitle = {Crisis and critique: philosophical analysis and current events}, editor = {Siegetsleitner, Anne and Oberprantacher, Andreas and Frick, Marie-Luisa and Metschl, Ulrich}, publisher = {De Gruyter}, address = {Berlin}, isbn = {9783110702255}, doi = {10.1515/9783110702255-012}, pages = {175 -- 188}, abstract = {On closer examination, the concept of civil society becomes blurred, for instance, on the crucial question of who belongs to civil society. The different answers to this question show how controversial the concept of civil society is, since it cannot be assumed that members of civil society would be morally particularly preferable actors. If, however, the conceptual foundations of and the question of membership in civil society already raise doubts about this concept, the recourse to civil society as a means against fake news and hate speech itself, which is often heard in public debates, becomes doubtful.}, subject = {Hassrede}, language = {en} } @incollection{Weber, author = {Weber, Karsten}, title = {Cybersecurity and Ethics}, series = {The Routledge Handbook of Smart Technologies}, booktitle = {The Routledge Handbook of Smart Technologies}, publisher = {Routledge}, address = {New York}, isbn = {9780429351921}, doi = {10.4324/9780429351921-36}, pages = {608 -- 622}, abstract = {The text aims to demonstrate that establishing cybersecurity is not only a technical challenge, but that legal, economic, or organizational aspects also play at least as important a role. The provision of cybersecurity raises ethical questions, since cybersecurity can affect moral values such as autonomy, freedom, or privacy. If measurements necessary for the provision of cybersecurity shall be accepted, it is essential to find a balance between the different claims of all stakeholders involved. This aim is achieved through a detailed ethical analysis accompanied by an extensive literature study. As the most important result of this analysis, it becomes obvious that cybersecurity is in competition or even conflict with other values and interests, and that establishing cybersecurity always involves a trade-off. Not only can there be no 100 percent cybersecurity for technical reasons, but if other values and interests are to be considered, this inevitably leads to compromises in cybersecurity.}, language = {en} } @article{HaugMilewski, author = {Haug, Sonja and Milewski, Nadja}, title = {Women's attitudes towards assisted reproductive technologies}, series = {Comparative Population Studies. Special Collection on "New aspects in fertility of migrant and minority populations in Europe: The role of attitudes and intentions in family planning"}, volume = {Vol. 43}, journal = {Comparative Population Studies. Special Collection on "New aspects in fertility of migrant and minority populations in Europe: The role of attitudes and intentions in family planning"}, organization = {Federal Institute for Population Research     }, doi = {10.12765/CPoS-2019-06}, pages = {343 -- 370}, abstract = {This study examines attitudes toward assisted reproductive technologies (ART) among immigrant women and non-migrants in Germany. The social relevance of ART is increasing in Western countries due to overall low birth rates, a high rate of childlessness, and a gap between the desired and the actual numbers of children. Previous literature has been scarce, however, on attitudes toward ART, and immigrant minorities have rarely been included in studies on ART. Our working hypotheses are drawn from theoretical considerations on political socialisation and cultural integration. The analysis is based on data collected in a pilot study in 2014 and 2015. The sample includes 960 women aged 18 to 50 living in Germany. About 81 percent of the sample are immigrants who originate from Turkey, Poland, the Balkan countries, or countries of the (Russian) Commonwealth of Independent States (CIS). We study the social norm to use ART to have a child, the personal attitude of whether a woman would use ART herself, and the methods that they would consider for their own use. Our results show that ART is overall socially acceptable, and the majority of women said that they would use it if necessary. There is significant variation between the origin groups, however. Non-migrants show the lowest acceptance rates and migrants from Poland and Turkey the highest approval. There is also variation in the ART procedures considered for use with the migrants more approving of heterologous methods than non-migrants. The differences between the origin groups diminish only partly when controlling for further explanatory variables, i.e. gender-role attitudes, religiosity, and socio-demographic characteristics of the respondents. We conclude that attitudes toward ART are shaped less by socio-demographic characteristics, but rather by cultural factors and the socialization in the migrants' countries of origin. The diversity in attitudes toward ART by cultural background should be acknowledged in research and public discourses on ART as well as in regulating policies.}, language = {en} } @article{HaugLochnerHuber, author = {Haug, Sonja and Lochner, Susanne and Huber, Dominik}, title = {Methodological Aspects of a Quantitative and Qualitative Survey of Asylum Seekers in Germany}, series = {mda - methods data analyses}, volume = {13}, journal = {mda - methods data analyses}, number = {2}, publisher = {GESIS - Leibniz-Institut f{\"u}r Sozialwissenschaften}, doi = {10.12758/mda.2019.02}, pages = {321 -- 340}, abstract = {This field report presents and discusses methodological issues and challenges encountered in a mixed-methods research project on asylum seekers in Bavaria, Germany. It documents the research design of, and field experiences in, a quantitative survey based on a quota sampling procedure and a qualitative study, both of which were conducted in collective accommodation for asylum seekers at selected locations in that federal state. Standardized PAPI multiple-topic questionnaires were completed by asylum seekers from Syria, Afghanistan, Eritrea, and Iraq (N = 779); most of the questionnaires were self-administered. In addition, 12 qualitative face-to-face biographical interviews were conducted in order to gain an in-depth understanding of attitudes and experiences of asylum seekers. This report focuses on the following aspects: the use of gatekeepers to facilitate participant recruitment; sampling procedures; the involvement of interpreters in the data collection process; response bias and response behaviors among asylum seekers; and the experiences gained from data collection in collective accommodation for asylum seekers.}, language = {en} } @article{LenkDuttgeFlatauetal., author = {Lenk, Christian and Duttge, Gunnar and Flatau, Laura and Frommeld, Debora and Poser, Wolfgang and Reitt, Markus and Schulze, Thomas and Weber, Alexandra and Zoll, Barbara}, title = {A look into the future? Patients' and health care staff's perception and evaluation of genetic information and the right not to know}, series = {American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics}, volume = {180}, journal = {American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics}, number = {8}, publisher = {Wiley}, doi = {10.1002/ajmg.b.32751}, pages = {576 -- 588}, abstract = {The progress of medical genetics leads to a significant increase in genetic knowledge and a vast expansion of genetic diagnostics. However, it is still unknown how these changes will be integrated into medical practice and how they will change patients' and healthy persons' perception and evaluation of genetic diagnoses and genetic knowledge. Therefore, we carried out a comprehensive questionnaire survey with more than 500 patients, clients seeking genetic counseling, health care staff, and healthy persons (N = 523). The questionnaire survey covered detailed questions on the value of genetic diagnoses for the different groups of study participants, the right to know or not to know genetic diagnoses, possible differences between genetic and other medical diagnoses, and the practical use and implications of genetic knowledge with a special focus on hereditary neuropsychiatric diseases. A huge majority of the participants (90.7\%) stated to have a right to learn every aspect of her or his genetic make-up. Similarly, study participants showed high interest (81.8\%) in incidental health care findings-independent of whether the diseases are treatable or not. One can derive from the data outcome that study participants did not follow the implications of a "genetic exceptionalism" and often considered genetic findings as equivalent in relation to other medical diagnoses.}, language = {en} } @article{WeberKrugHaugetal., author = {Weber, Karsten and Krug, Henriette and Haug, Sonja and K{\"u}hn, Andrea A. and Scharf, Anna}, title = {External Observations and Subjective Experiences: Metaphors Used by DBS Patients}, series = {AJOB Neuroscience}, volume = {14}, journal = {AJOB Neuroscience}, number = {3}, publisher = {Taylor\&Francis}, doi = {10.1080/21507740.2023.2246219}, pages = {323 -- 325}, language = {en} } @article{DotterHaugSchnelletal., author = {Dotter, Caroline and Haug, Sonja and Schnell, Rainer and Raptis, Georgios and Weber, Karsten}, title = {Sharing health data for research purposes: results of a population survey in Germany}, series = {BMC health services research}, volume = {25}, journal = {BMC health services research}, publisher = {BMC}, doi = {10.1186/s12913-025-12706-9}, url = {http://nbn-resolving.de/urn:nbn:de:bvb:898-opus4-81622}, pages = {9}, abstract = {BACKGROUND: Increased use of health data has the potential to improve both health care and health policies. Several recent policy initiatives at the European and German legislative levels aim to increase the primary and secondary use of health data. However, little is known about general population views on health data access for research. Most studies are based on subsets defined by specific illnesses. METHODS: We commissioned a national computer-assisted dual-frame telephone survey (landline and mobile). Logit estimation models were used to identify predictors of willingness to provide access to health data to different organizations (universities in Germany, universities worldwide, German government organizations, pharmaceutical companies). RESULTS: A high willingness to share health data for research purposes is observed, depending on the specific data recipient. The willingness is highest for research at universities in Germany and German governmental organizations, and lowest regarding research by pharmaceutical companies. The main drivers for sharing health data are the level of trust in public institutions, the respondents' assessment of the seriousness and likelihood of data misuse, and the level of digital literacy. Age, gender, and level of education have small effects and do not determine the willingness to share health data for all organizations. CONCLUSION: We present evidence from a random sample of the German population. The results indicate widespread support among the population for providing access to health data for research purposes. Similar to findings in other countries, the willingness depends strongly on the recipient of the data. This paper evaluates the impact of various determinants - identified in previous qualitative and quantitative research - on the willingness of the German population to share health data. While previous studies have found that patients are generally more willing to share health data, we found that the presence of a medical precondition does not translate into respondents' unequivocal support for health data sharing. We identify privacy concerns, general trust, and digital literacy as key factors influencing the willingness to share health data. Therefore, policymakers and stakeholders need to ensure and communicate the necessary privacy protection measures to increase the willingness of the German population to share health data.}, language = {en} }