@incollection{AltenbuchnerWeber, author = {Altenbuchner, Amelie and Weber, Karsten}, title = {Geriatric trauma patients as research subjects in a technology-driven research project}, series = {Aging between Participation and Simulation}, booktitle = {Aging between Participation and Simulation}, editor = {Haltaufderheide, Joschka and Hovemann, Johanna and Vollmann, Jochen}, publisher = {De Gruyter}, address = {Berlin u.a.}, isbn = {9783110677485}, doi = {10.1515/9783110677485-006}, pages = {87 -- 104}, abstract = {This article highlights methodological and ethical challenges in research with adults of older and oldest age, by presenting field experiences of the current research project "Motion Monitoring of Geriatric Trauma Patients - Explorative Study on the Rehabilitation Process after Hip Fracture Using Sensor-based Data". Depiction of the survey situation, with regard to the subjects in particular, can serve as practical examples for designing future research projects. The group of older adults is a rather large and growing group for which research is required, especially concerning their heterogeneity, their individual autonomy and quality of life. It is assumed, that research designs of studies on the target group must be specifically adjusted, in particular when considering the attribution of vulnerability of the group members. At the same time, it is not clear yet what exact specifics of the subjects and target group must be considered in research designs, as surprisingly little is known about the target group as subjects and corresponding theories have been insufficiently tested. The exploratory long-term design of the research project presented in the second section of this chapter has a positive evaluation of an ethics committee. Still ethical challenges occurred in the field situation, that are illustrated in the third section of this chapter, by providing information on the patients, their role as research subjects, how they were recruited, how an informed consensus was reached, and in some cases how participation was rejected or abandoned. After a summary, the end of the paper is marked by recommendations on how to design future research projects. Cumulatively it must always be expected that interaction between researchers and research subjects of this target group can become very intensive, what requires to follow clearly defined procedures and at the same time to be prepared to act flexibly.}, language = {en} } @article{DotterHaugWeberetal., author = {Dotter, Caroline and Haug, Sonja and Weber, Karsten and Schnell, Rainer and Scharf, Anna and Altenburcher, Amelie}, title = {Analyzing factors determining vaccination willingness against COVID-19 in Germany 2020}, series = {Vaccine: X}, volume = {14}, journal = {Vaccine: X}, publisher = {Elsevier}, doi = {10.1016/j.jvacx.2023.100342}, url = {http://nbn-resolving.de/urn:nbn:de:bvb:898-opus4-62900}, pages = {6}, abstract = {The study is based on a German single-topic population survey on vaccination willingness against COVID-19 (VWC) by the authors (2020, n = 2014). The single-topic survey allowed us to test several competing explanations for VWC, as discussed in the literature. The VWC in the sample was 67.3\%. Logistic regression was used to identify factors affecting VWC. Being at high risk from COVID-19 and having received flu vaccination have a positive impact on VWC. Perceived VWC of friends has a strong positive effect on respondents' VWC. Bivariate relationships of gender, age, and level of education with VWC were no longer significant in a multivariate analysis. Trust in alternative medicine and belief in conspiracy theories have a negative effect on VWC.}, 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{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{HaugSchnellRaptisetal., author = {Haug, Sonja and Schnell, Rainer and Raptis, Georgios and Dotter, Caroline and Weber, Karsten}, title = {Wissen und Einstellung zur Speicherung und Nutzung von Gesundheitsdaten: Ergebnisse einer Bev{\"o}lkerungsbefragung}, series = {Zeitschrift f{\"u}r Evidenz, Fortbildung und Qualit{\"a}t im Gesundheitswesen}, journal = {Zeitschrift f{\"u}r Evidenz, Fortbildung und Qualit{\"a}t im Gesundheitswesen}, publisher = {Elsevier}, issn = {1865-9217}, doi = {10.1016/j.zefq.2023.11.001}, url = {http://nbn-resolving.de/urn:nbn:de:bvb:898-opus4-67461}, pages = {50 -- 58}, abstract = {Hintergrund/Zielsetzung Der Beitrag befasst sich mit dem Wissenstand und der Einstellung der Bev{\"o}lkerung. Betrachtet werden die {\"U}bermittlung und Verf{\"u}gbarkeit von Gesundheitsdaten, Gesundheitsregister, die elektronische Patientenakte, Einwilligungsverfahren f{\"u}r die {\"U}bermittlung von Daten und der Zugriff auf Gesundheitsdaten zu Forschungszwecken. Methoden Die Studie basiert auf einer computergest{\"u}tzten Telefonbefragung (Dual-Frame) bei einer Zufallsstichprobe der Bev{\"o}lkerung in Deutschland im Zeitraum 01.-27.06.2022 (n = 1.308). Ergebnisse Der Wissensstand zur {\"U}bermittlung von Gesundheitsdaten an Krankenkassen ist hoch, wohingegen das Vorhandensein zentraler Sterbe-, Impf- und Gesundheitsregister sowie der Zugriff auf Gesundheitsdaten durch behandelnde {\"A}rztinnen und {\"A}rzte {\"u}bersch{\"a}tzt werden. Die Akzeptanz medizinischer Register ist sehr hoch. Die elektronische Patientenakte ist bei der H{\"a}lfte der Bev{\"o}lkerung unbekannt, die Nutzungsbereitschaft ist eher gering ausgepr{\"a}gt; bei der {\"U}bertragung von Daten wird eine Zustimmungsoption bevorzugt, und {\"u}ber achtzig Prozent w{\"u}rden die Daten der elektronischen Patientenakte zur Forschung freigeben. Drei Viertel w{\"u}rden ihre Gesundheitsdaten allgemein zur Forschung freigeben, insbesondere an Universit{\"a}ten in Deutschland, wobei meist Anonymit{\"a}t Bedingung ist. Die Bereitschaft zur Datenfreigabe steigt mit der H{\"o}he des Vertrauens in die Presse sowie in Universit{\"a}ten und Hochschulen, und sie sinkt, wenn ein Datenleck als schwerwiegend erachtet wird. Diskussion und Schlussfolgerung In Deutschland besteht, wie in anderen europ{\"a}ischen L{\"a}ndern, eine große Bereitschaft zur Freigabe von Gesundheitsdaten zu Forschungszwecken. Dagegen ist der Wunsch zur Nutzung der elektronischen Patientenakte eher gering. Ebenso niedrig ist die Akzeptanz einer Widerspruchsoption, die jedoch als Voraussetzung f{\"u}r eine erfolgreiche Einf{\"u}hrung einer elektronischen Patientenakte gilt. Vertrauen in die Forschung und staatliche Stellen, die Gesundheitsdaten verarbeiten, sind zentrale Faktoren.}, 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{MilewskiHaug, author = {Milewski, Nadja and Haug, Sonja}, title = {At risk of reproductive disadvantage? Exploring fertility awareness among migrant women in Germany}, series = {Reproductive Biomedicine \& Society Online}, volume = {14}, journal = {Reproductive Biomedicine \& Society Online}, publisher = {Elsevier}, doi = {10.1016/j.rbms.2021.11.007}, pages = {226 -- 238}, abstract = {This study examined awareness about fertility among immigrant women and non-migrants in Germany. The social relevance of infertility and fertility treatment is increasing in Western countries due to continually low overall birth rates, a high rate of childlessness, and a gap between the desired and actual numbers of children. While there is growing interest in infertility and reproductive medicine in general, previous studies have rarely included immigrant or ethnic minorities in Europe. This study investigated whether knowledge on the age-related fertility decline (ARFD) varies between migrant groups and the majority group, and the role of education. Working hypotheses were drawn from theoretical considerations on frameworks of migrant assimilation. The analysis was based on data collected in a social science pilot study on reproductive medicine, representative of the general population ('NeWiRe' 2014-2015). The sample included 962 women aged 18-50 years living in Germany. Approximately 81\% of the sample were immigrants who originated from Turkey, Poland, the Balkan countries or countries of the (post-Soviet) Commonwealth of Independent States. While rather poor overall, knowledge on ARFD was found to be significantly lower in the migrant groups compared with the majority group. This minority-group disadvantage cannot be explained by sociodemographic or cultural variables. Future research should include minority groups in empirical studies on awareness about fertility in order to better understand the causes of this disadvantage, and the potential reproductive needs of migrants.}, language = {en} } @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} } @article{Weber, author = {Weber, Karsten}, title = {Promoting Individual Well-Being, Increasing Social Welfare, and Securing Genetic Diversity Simultaneously}, series = {American Journal of Bioethics}, volume = {15}, journal = {American Journal of Bioethics}, number = {6}, doi = {10.1080/15265161.2015.1028660}, pages = {36 -- 37}, language = {en} } @article{Weber, author = {Weber, Karsten}, title = {Is there really a concept called "inherent ethical concern"?}, series = {American Journal of Bioethics Neuroscience}, volume = {5}, journal = {American Journal of Bioethics Neuroscience}, number = {1}, doi = {10.1080/21507740.2013.868377}, pages = {39 -- 40}, 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{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{WeberLoiChristenetal., author = {Weber, Karsten and Loi, Michele and Christen, Markus and Kleine, Nadine}, title = {Digital Medicine, Cybersecurity, and Ethics}, series = {American Journal of Bioethics}, volume = {18}, journal = {American Journal of Bioethics}, number = {9}, publisher = {Taylor\&Francis}, doi = {10.1080/15265161.2018.1498935}, pages = {52 -- 53}, language = {en} } @article{WeberPallasUlbricht, author = {Weber, Karsten and Pallas, Frank and Ulbricht, Max-R.}, title = {Challenges of Citizen Science: Commons, Incentives, Organizations, and Regulations}, series = {American Journal of Bioethics}, volume = {19}, journal = {American Journal of Bioethics}, number = {8}, doi = {10.1080/15265161.2019.1619862}, pages = {52 -- 54}, language = {en} }