Knowing patients: turning patient knowledge into science

J Pols - Science, Technology, & Human Values, 2014 - journals.sagepub.com
Science and technology studies concerned with the study of lay influence on the sciences
usually analyze either the political or the normative epistemological consequences of lay …

Eugenic utopias/dystopias, reprogenetics, and community genetics

AE Raz - Sociology of health & illness, 2009 - Wiley Online Library
The impetus for this review is the intriguing realisation that eugenics, viewed as dystopian
and authoritarian in most of the 20th century, is in the process of being reinterpreted today …

[HTML][HTML] The ethics of 'public understanding of ethics'—why and how bioethics expertise should include public and patients' voices

S Schicktanz, M Schweda, B Wynne - Medicine, health care and …, 2012 - Springer
Abstract “Ethics” is used as a label for a new kind of expertise in the field of science and
technology. At the same time, it is not clear what ethical expertise consists in and what its …

[HTML][HTML] The concept of “genetic responsibility” and its meanings: a systematic review of qualitative medical sociology literature

J Leefmann, M Schaper, S Schicktanz - Frontiers in Sociology, 2017 - frontiersin.org
The acquisition of genetic information (GI) confronts both the affected individuals and
healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has …

[HTML][HTML] Lessons from Italy's and Sweden's policies in fighting COVID-19: the contribution of biomedical and social competences

M Farina, A Lavazza - Frontiers in Public Health, 2020 - frontiersin.org
We start (section The COVID-19 Pandemic and Italy's Response to It) by focusing on Italy's
“tough” response to COVID-19 pandemic, which included total lockdown with very limited …

[HTML][HTML] Illness and disease: an empirical-ethical viewpoint

AH Seidlein, S Salloch - BMC medical ethics, 2019 - Springer
Background The concepts of disease, illness and sickness capture fundamentally different
aspects of phenomena related to human ailments and healthcare. The philosophy and …

[HTML][HTML] Beyond cultural stereotyping: views on end-of-life decision making among religious and secular persons in the USA, Germany, and Israel

M Schweda, S Schicktanz, A Raz, A Silvers - BMC Medical Ethics, 2017 - Springer
Background End-of-life decision making constitutes a major challenge for bioethical
deliberation and political governance in modern democracies: On the one hand, it touches …

Understanding collective agency in bioethics

K Beier, I Jordan, C Wiesemann… - Medicine, Health Care and …, 2016 - Springer
Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly
complex and socially differentiated healthcare systems a number of social groups, each …

[HTML][HTML] Diversity and uniformity in genetic responsibility: moral attitudes of patients, relatives and lay people in Germany and Israel

AE Raz, S Schicktanz - Medicine, Health Care and Philosophy, 2009 - Springer
The professional and institutional responsibility for handling genetic knowledge is well
discussed; less attention has been paid to how lay people and particularly people who are …

Ethics by opinion poll? The functions of attitudes research for normative deliberations in medical ethics

S Salloch, J Vollmann, J Schildmann - Journal of Medical Ethics, 2014 - jme.bmj.com
Empirical studies on people's moral attitudes regarding ethically challenging topics
contribute greatly to research in medical ethics. However, it is not always clear in which …