Samuel, Gabrielle; Howard, Heidi Carmen; Cornel, Martina; van El, Carla et al.
A response to the forensic genetics policy initiative's report "Establishing Best Practice for Forensic DNA Databases"
Part of Forensic Science International, p. E19-E21, 2018.
Kodra, Yllka; Weinbach, Jerome; Posada-de-la-Paz, Manuel; Coi, Alessio et al.
Recommendations for Improving the Quality of Rare Disease Registries
Part of International Journal of Environmental Research and Public Health, 2018.
Whichello, Chiara; Schölin Bywall, Karin; Mauer, Jonathan; Watt, Stephen J. et al.
Mapping benefit-risk decision-making processes and identifying decision points with the potential to include patient preference information throughout the medical product lifecycle
Part of Pharmacoepidemiology and Drug Safety, p. 206-206, 2018.
Whichello, Chiara; Soekhai, Vikas; Levitan, Bennett; Veldwijk, Jorien et al.
Compendium of methods for measuring patient preferences in medical treatment
Part of Pharmacoepidemiology and Drug Safety, p. 517-518, 2018.
Kihlbom, Ulrik; Russo, Selena; Monzani, Dario; Stichele, Geert Vander et al.
Patient-centered benefit-risk decision-making and the role of educational tools and psychological instruments in preference elicitation-Year 1 of IMI prefer
Part of Pharmacoepidemiology and Drug Safety, p. 512-512, 2018.
Farisco, Michele; Evers, Kathinka; Changeux, Jean-Pierre
Drug addiction: from neuroscience to ethics
Part of Frontiers in Psychiatry, 2018.
Godskesen, Tove E.; Fernow, Josepine; Eriksson, Stefan
Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway
Part of European Journal of Cancer Care, p. 1-10, 2018.
Matar, Amal; Höglund, Anna T; Hansson, M G
“A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening
Part of Journal of Community Genetics, 2018.
Ancillotti, Mirko; Eriksson, Stefan; Veldwijk, Jorien; Nihlén Fahlquist, Jessica et al.
Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions
Part of BMC Public Health, 2018.
A1:111a, Biomedicinskt centrum, Husargatan3, Uppsala 2018-11-23 13:00
COMPETENCE AND COMMUNICATION: Do Not Resuscitate Decisions in Cancer Care
Farisco, Michele; Salles, Arleen; Evers, Kathinka
Neuroethics: A Conceptual Approach
Part of Cambridge Quarterly of Healthcare Ethics, p. 717-727, 2018.
Höglund, Anna T; Falkenström, Erica
The status of ethics in Swedish health care management: a qualitative study
Part of BMC Health Services Research, p. 1-8, 2018.
Godskesen, Tove; Petri, Suzanne; Eriksson, Stefan; Halkoaho, Arja et al.
When Nursing Care and Clinical Trials Coincide:: A Qualitative Study of the Views of Nordic Oncology and Hematology Nurses on Ethical Work Challenges
Part of Journal of Empirical Research on Human Research Ethics, 2018.
God vård innebär att sällsynta sjukdomar ges resurser
Part of Dagens Medicin, 2018.
Universitetshuset, sal IX, Biskopsgatan 3, Uppsala 2018-09-21 09:15
Viberg Johansson, Jennifer
INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences
Pettersson, Mona; Hedström, Mariann; Höglund, Anna T
Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care
Part of BMC Medical Ethics, 2018.
Salles, Arleen; Evers, Kathinka; Farisco, Michele
Neuroethics and Philosophy in Responsible Research and Innovation: The Case of the Human Brain Project
Part of Neuroethics, 2018.
Falkenström, Erica; Höglund, Anna T
På spaning efter etik: Etisk kompetens och ansvarstagande för ledning ochstyrning av hälso- och sjukvården
Appell förlag, 2018.
Middleton, Anna; Niemiec, Emilia; Prainsack, Barbara; Bobe, Jason et al.
'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods
Part of Personalized Medicine, p. 311-318, 2018.
de Bekker-Grob, Esther W.; Veldwijk, Jorien; Jonker, Marcel; Donkers, Bas et al.
The impact of vaccination and patient characteristics on influenza vaccination uptake of elderly people: A discrete choice experiment
Part of Vaccine, p. 1467-1476, 2018.
de Bekker-Grob, Esther W.; Juhaeri, Juhaeri; Kihlbom, Ulrik; Levitan, Bennett et al.
Giving patients' preferences a voice in the medical product lifecycle: why, when and how?: The public-private PREFER project: Work package 2
Part of ISPOR Value & Outcomes Spotlight, p. 19 19-21 21, 2018.
Filosofía de las Neurociencias.: Cerebro, mente, persona
Ediciones Universidad Catolica de Salta, 2018.
Farisco, Michele; Hellgren Kotaleski, Jeanette; Evers, Kathinka
Large-scale brain simulation and disorders of consciousness: Mapping technical and conceptual issues
Part of Frontiers in Psychology, 2018.
Helgesson, Gert; Eriksson, Stefan
Revise the ICMJE Recommendations regarding authorship responsibility!
Part of Learned Publishing, p. 267-269, 2018.
Hansson, Mats G.; Bouder, Frederic; Howard, Heidi Carmen
Genetics and risk - an exploration of conceptual approaches to genetic risk
Part of Journal of Risk Research, p. 101-108, 2018.
Offentlighet eller dataskydd som ledande princip i EU:s integrerade förvaltning?
Part of Förvaltningsrättslig Tidskrift, p. 91-113, 2018.
Klingström, Tomas; Bongcam Rudloff, Erik; Reichel, Jane
Legal & ethical compliance when sharing biospecimen
Part of Briefings in Functional Genomics & Proteomics, p. 1-7, 2018.
Howard, H.C.; Iwarsson, E
Mapping Uncertainty in Genomics
Part of Journal or Risk Research, p. 117 117-128 128, 2018.
Howard, Heidi Carmen; van El, Carla G.; Forzano, Francesca; Radojkovic, D. et al.
One small edit for humans, one giant edit for humankind? Points and questions to consider for a responsible way forward for gene editing in humans
Part of European Journal of Human Genetics, p. 1-11, 2018.
Niemiec, E.; Vears, D. F.; Borry, P.; Howard, Heidi Carmen et al.
Readability of informed consent forms for whole-exome and whole-genome sequencing
Part of Journal of Community Genetics, p. 143-151, 2018.
Howard, Heidi Carmen; Mascalzoni, Deborah; Mabile, Laurence; Houeland, Gry et al.
How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF).
Part of Journal of Community Genetics, p. 169-176, 2018.
De Wert, G.; Heindryckx, B.; Pennings, G.; Clarke, A. et al.
Responsible innovation in human germline gene editing: Background document to the recommendations of ESHG and ESHRE
Part of European Journal of Human Genetics, p. 450-470, 2018.
de Wert, Guido; Pennings, Guido; Clarke, Angus; Eichenlaub-Ritter, Ursula et al.
Human germline gene editing: Recommendations of ESHG and ESHRE
Part of European Journal of Human Genetics, p. 445-449, 2018.
Borry, Pascal; Bentzen, Heidi Beate; Budin-Ljøsne, Isabelle; Cornel, Martina C et al.
The challenges of the expanded availability of genomic information: an agenda-setting paper.
Part of Journal of Community Genetics, p. 103-116, 2018.
Eriksson, Stefan; Godskesen, Tove; Andersson, Lars; Helgesson, Gert et al.
How to counter undeserving authorship
Part of Insights: the UKSG journal, p. 1 1-6 6, 2018.
Bayliss, Kerin; Raza, Karim; Simons, Gwenda; Falahee, Marie et al.
Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease: a meta-synthesis of qualitative studies
Part of Journal of Risk Research, p. 167-189, 2018.
Howard, Heidi Carmen; Iwarsson, Erik
Mapping uncertainty in genomics
Part of Journal of Risk Research, p. 117-128, 2018.
Höglund, Anna; Carlsson, Marianne; Holmström, Inger; Lännerström, Linda et al.
From denial to awareness: a conceptual model for obtaining equity in healthcare
Part of International Journal for Equity in Health, 2018.
Helgesson, Gert; Eriksson, Stefan
Responsibility for scientific misconduct in collaborative papers
Part of Medicine, Health care and Philosophy, p. 423-430, 2018.
Malmqvist, Erik; Furberg, Elisabeth; Sandman, Lars
Ethical aspects of medical age assessment in the asylum process: a Swedish perspective
Part of International journal of legal medicine (Print), p. 815-823, 2018.
Kalokairinou, L; Howard, Heidi Carmen; Slokenberga, Santa; Fisher, E et al.
Legislation of direct-to-consumer genetic testing in Europe:: a fragmented regulatory landscape
Part of Journal of Community Genetics, p. 117-132, 2018.
Book review - T.K. Hervey, C.A. Young and L.E. Bishop (eds.) Research Handbook on EU Health Law and Policy (Cheltenham: Edward Elgar Publishing, 2017), ISBN 978-1785364716, 592 pp.
Part of European Journal of Health Law, p. 355-360, 2018.
Eriksson, Stefan; Helgesson, Gert
Time to stop talking about ‘predatory journals’
Part of Learned Publishing, p. 181-183, 2018.
Viberg, Jennifer; Segerdahl, Pär; Hösterey Ugander, Ulrika; Hansson, Mats G. et al.
Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research
Part of Patient Education and Counseling, p. 422-427, 2018.
Piciocchi, Cinzia; Ducato, Rossana; Martinelli, Lucia; Perra, Silvia et al.
Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.
Part of Journal of Community Genetics, p. 177-190, 2018.
Nihlén Fahlquist, Jessica
Vaccine hesitancy and trust: Ethical aspects of risk communication
Part of Scandinavian Journal of Public Health, p. 182-188, 2018.
Neuroethics in Context: The Development of the Discipline in Argentina
Part of The Routledge Handbook of Neuroethics, 2018.
Genetic risk and value
Part of Journal of Risk Research, p. 222-235, 2018.
Nihlén Fahlquist, Jessica
Responsibility and privacy -: ethical aspects of using GPS to track children.
Part of Surveillance futures, 2017.
Veldwijk, J.; Viberg Johansson, Jennifer; Donkers, B.; de Bekker-Grob, E. et al.
Mimicking Real Life Decision-Making In Health: Allowing Respondents Time-To-Think In A Discrete Choice Experiment
Part of Value in Health, p. A406-A406, 2017.
Biobank and registry ethics & law
For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.
Nursing Ethics & Ethics of Care
Nursing ethics is concerned with the moral dimensions of nursing practice while the ethics of care is a normative ethical theory. For many years CRB has developed these fields from different angles. We have used qualitative studies to describe and explore the kinds of ethical dilemmas nurses encounter in their day-to-day work and how they solve them. Other studies have investigated the role of ethical guidelines in the building of ethical competence in nursing practice and in priority setting. In this report, we provide a summary of our research.
Neuroethics & Philosophy of the Brain
The CRB neuroethics research team is an international, multi-disciplinary group. Our backgrounds allow us to approach these issues from theoretical, philosophical, social, bio-political and clinical perspectives. We collaborate closely with neuroscientists to understand the ethical and philosophical questions that neuroscience brings. In this report, we provide a summary of our research. The report was updated in November 2016.