@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{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{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{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} } @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} } @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{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} } @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} } @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} } @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} }