Publications from CRB

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We publish the results of our research in international peer-reviewed scientific journals and in books. Among other things, our research deals with bioethical issues, biobanks and registriesclinical ethicsneuroethics and philosophyrisk informationnursing ethics, ethics of care and research ethics and law

More publication lists are avaliable on our staff pages. You can also download recent policy briefs from CRB, or read about our research on the Ethics Blog

Recent publications

  • Matar, Amal; Silverman, Henry

    Ethical Analysis of Egypt's Law Regulating Clinical Research

    Part of Journal of Empirical Research on Human Research Ethics, 2022.

    Open access
  • Eddebo, Johan

    Artificial Intelligence and Imperceptible Governance via Opinion Formation: Reflections on Power and Transparency from a Cross-Disciplinary Encounter

    Part of Law, AI and Digitalization, 2022.

  • Viberg, Jennifer; Bentzen, Heidi Beate; Mascalzoni, Deborah

    What ethical approaches are used by scientists when sharing health data?: An interview study

    Part of BMC Medical Ethics, 2022.

    Open access
  • Farisco, Michele; Salles, Arleen

    American and European Guidelines on Disorders of Consciousness: Ethical Challenges of Implementation

    Part of The journal of head trauma rehabilitation, 2022.

    Open access
  • Staunton, Ciara; Slokenberga, Santa; Parziale, Andrea; Mascalzoni, Deborah

    Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research

    Part of Frontiers in Genetics, 2022.

    Open access
  • Farisco, Michele; Pennartz, Cyriel; Annen, Jitka; Cecconi, Benedetta et al.

    Indicators and criteria of consciousness: ethical implications for the care of behaviourally unresponsive patients

    Part of BMC Medical Ethics, 2022.

    Open access
  • Grauman, Åsa; Drevin, Jennifer

    Perceptions on using surplus embryos for the treatment of Parkinson’s disease among the Swedish population: a qualitative study

    Part of BMC Medical Ethics, 2022.

    Open access
  • Milne, Richard; Morley, Katherine I.; Almarri, Mohamed A.; Atutornu, Jerome et al.

    Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

    Part of Genetics in Medicine, 2022.

    Open access
  • Simons, Gwenda; Caplan, Joshua; DiSantostefano, Rachael L.; Veldwijk, Jorien et al.

    Systematic review of quantitative preference studies of treatments for rheumatoid arthritis among patients and at-risk populations

    Part of Arthritis Research & Therapy, 2022.

    Open access
  • Ancillotti, Mirko; Nilsson, Elin; Nordvall, Anna-Carin; Oljans, Emma

    The Status Quo Problem and the Role of Consumers Against Antimicrobial Resistance

    Part of Frontiers in Sustainable Food Systems, 2022.

    Open access
  • Farisco, Michele; Evers, Kathinka; Salles, Arleen

    On the Contribution of Neuroethics to the Ethics and Regulation of Artificial Intelligence

    Part of Neuroethics, 2022.

    Open access
  • Grauman, Åsa; Viberg, Jennifer; Falahee, Marie; Veldwijk, Jorien

    Public perceptions of myocardial infarction: Do illness perceptions predict preferences for health check results

    Part of Preventive Medicine Reports, p. 101683-101683, 2022.

    Open access
  • Grauman, Åsa; Byberg, Liisa; Veldwijk, Jorien; James, Stefan

    What CVD risk factors predict self-perceived risk of having a myocardial infarction? A cross-sectional study

    Part of International Journal of Cardiology Cardiovascular Risk and Prevention, p. 200125-200125, 2022.

    Open access
  • Nordvall, Anna-Carin; Ancillotti, Mirko

    Consumer Behaviour and antibiotic resistance

    Part of Managing Antimicrobial Resistance Through Behaviour Change, p. 16-19, 2021.

  • Ancillotti, Mirko; Oljans, Emma; Hassan, Tazrin; Horikx, Lotte et al.

    Consumer behaviour and antibiotic resistance

    Part of Managing Antimicrobial Resistance Through Behavior Change, March 2021, p. 13-14, 2021.

  • Romano, Virginia; Milne, Richard; Mascalzoni, Deborah

    Italian public's views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study

    Part of Wellcome Open Research, 2021.

    Open access
  • Iacomussi, Sofia; Casareto, Lorena; Locatelli, Manuela; Wang, Chiuhui Mary et al.

    Governance of Access in Biobanking: The Case of Telethon Network of Genetic Biobanks

    Part of Biopreservation and Biobanking, p. 483-492, 2021.

    Open access
  • Pattaro, Cristian; Barbieri, Giulia; Foco, Luisa; Weichenberger, Christian X. et al.

    Prospective epidemiological, molecular, and genetic characterization of a novel coronavirus disease in the Val Venosta/Vinschgau: the CHRIS COVID-19 study protocol

    Part of Pathogens and Global Health, p. 128-136, 2021.

    Open access
  • Staunton, Ciara; Kösters, Maria; Pramstaller, Peter P.; Mascalzoni, Deborah

    Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants

    Part of Journal of Community Genetics, p. 577-592, 2021.

    Open access
  • Salles, Arleen

    Humanness: Some neuroethical reflections

    Part of Regulating Neuroscience: Transnational legal challenges, p. 1-179, 2021.

  • Evers, Kathinka; Salles, Arleen

    Epistemic Challenges of Digital Twins & Virtual Brains: Perspectives from Fundamental Neuroethics

    Part of SCIO: Revista de Filosofía, p. 27-53, 2021.

    Open access
  • Stahl, Bernd Carsten; Akintoye, Simisola; Bitsch, Lise; Bringedal, Berit et al.

    From Responsible Research and Innovation to responsibility by design

    Part of Journal of Responsible Innovation, p. 175-198, 2021.

    Open access
  • Emmert, David B.; Vukovic, Vladimir; Dordevic, Nikola; Weichenberger, Christian X. et al.

    Genetic and Metabolic Determinants of Atrial Fibrillation in a General Population Sample: The CHRIS Study

    Part of Biomolecules, 2021.

    Open access
  • Brey, Philip; Dainow, Brandt; Erden, Yasemin J.; Matar, Amal et al.

    SIENNA D6.3: Methods for translating ethical analysis into instruments for the ethical development and deployment of emerging technologies

    2021.

    Open access
  • Matar, Amal

    SIENNA D5.2: An international code of conduct for data sharing in genomics

    2021.

    Open access
  • Holmström, Inger K.; Kaminsky, Elenor; Höglund, Anna T; Carlsson, Marianne

    A survey of nursing teachers’ awareness of discrimination and inequity in telephone nursing care

    Part of BMC Nursing, 2021.

    Open access
  • Svalastog, Anna Lydia; Wilson, Shawn; Hansen, Ketil Lenert

    Knowledge versus Education in the Margins: An Indigenous and Feminist Critique of Education

    Part of Education Sciences, 2021.

    Open access
  • Gupta, Anvita; Wolff, Annemarie; Northoff, Georg

    Extending the "resting state hypothesis of depression"-dynamics and topography of abnormal rest-task modulation

    Part of Psychiatry Research, 2021.

  • Shah, N.; Viberg Johansson, Jennifer; Haraldsdóttir, E.; Bentzen, H.B. et al.

    Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden

    Part of International Journal of Medical Informatics, 2021.

    Open access
  • Viberg, Jennifer; Shah, Nisha; Haraldsdóttir, Eik; Bentzen, Heidi Beate et al.

    Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies

    Part of Technology in society, p. 101625-101625, 2021.

    Open access
  • Schölin Bywall, Karin; Esbensen, Bente Appel; Lason, Marta; Heidenvall, Marie et al.

    Functional capacity vs side effects: treatment attributes to consider when individualising treatment for patients with rheumatoid arthritis

    Part of Clinical Rheumatology, 2021.

  • Sallin, Karl; Evers, Kathinka; Jarbin, Håkan; Joelsson, Lars et al.

    Separation and not residency permit restores function in resignation syndrome: a retrospective cohort study

    Part of European Child and Adolescent Psychiatry, 2021.

  • Viberg Johansson, Jennifer; Bentzen, Heidi Beate; Shah, Nisha; Haraldsdóttir, Eik et al.

    Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

    Part of JMIR Medical Informatics, 2021.

    Open access
  • Grauman, Åsa; Hansson, Mats G.; James, Stefan; Hauber, Brett et al.

    Communicating Test Results from a General Health Check: Preferences from a Discrete Choice Experiment Survey

    Part of Patient, p. 649-660, 2021.

    Open access
  • Mascalzoni, Deborah; Biasiotto, Roberta; Borsche, Max; Brüggemann, Norbert et al.

    Balancing scientific interests and the rights of participants in designing a recall by genotype study

    Part of European Journal of Human Genetics, p. 1146-1157, 2021.

    Open access
  • Godskesen, Tove; Höglund T., Anna; Frygner Holm, Sara; Eriksson, Stefan

    YouTube as a source of information on clinical trials forpaediatric cancer

    Part of Information, Communication and Society, p. 1-14, 2021.

  • Melotti, Roberto; Scaggiante, Federica; Falciani, Michela; Weichenberger, Christian X. et al.

    Prevalence and determinants of serum antibodies to SARS-CoV-2 in the general population of the Gardena valley

    Part of Epidemiology and Infection, 2021.

    Open access
  • Stahl, Bernd Carsten; Akintoye, Simisola; Bitsch, Lise; Bringedal, Berit et al.

    From Responsible Research and Innovation to responsibility by design

    Part of Journal of Responsible Innovation, 2021.

    Open access
  • Andersson, Christina; Bergsten, Katja; Lilliengren, Peter; Norbäck, Kajsa et al.

    The effectiveness of smartphone compassion training on stress among Swedish university students: A pilot randomized trial

    Part of Journal of Clinical Psychology, p. 927-945, 2021.

  • Damiani, Stefano; Scalabrini, Andrea; Ku, Hsiao-Lun; Lane, Timothy Joseph et al.

    From local to global and back: An exploratory study on cross-scale desynchronization in schizophrenia and its relation to thought disorders

    Part of Schizophrenia Research, p. 10-12, 2021.

  • Prasuhn, Jannik; Borsche, Max; Hicks, Andrew A.; Goegele, Martin et al.

    Task matters-challenging the motor system allows distinguishing unaffected Parkin mutation carriers from mutation-free controls

    Part of Parkinsonism & Related Disorders, p. 101-104, 2021.

  • Bjelobaba, Sonja

    Deterring cheating using a complex assessment design: A case study

    Part of The Literacy Trek. Journal of literacy and language studies, p. 55-77, 2021.

    Open access
  • Milne, Richard; Morley, Katherine I.; Almarri, Mohamed A.; Anwer, Shamim et al.

    Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries

    Part of Genome Medicine, 2021.

    Open access
  • Russo, Selena; Monzani, Dario; Pinto, Cathy Anne; Vergani, Laura et al.

    Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies

    Part of Patient Preference and Adherence, p. 1331-1345, 2021.

    Open access
  • Grauman, Åsa

    Policyrekommendationer: Informera om risk för hjärt- och kärlsjukdomar

    2021.

    Open access
  • Biasiotto, Roberta; Pramstaller, Peter P.; Mascalzoni, Deborah

    The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication

    Part of BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, p. 277-287, 2021.

    Open access
  • Steindal, Simen A; Nes, Andréa Aparecida Gonçalves; Godskesen, Tove; Lind, Susanne et al.

    Advantages and Challenges in Using Telehealth for Home-Based Palliative Care: Protocol for a Systematic Mixed Studies Review

    Part of JMIR Research Protocols, 2021.

  • Khan, Zeenath Reza; Dyer, Jarret; Bjelobaba, Sonja; Gomes, Sandra F. et al.

    Initiating count down-gamification of academic integrity

    Part of International Journal for Educational Integrity, 2021.

    Open access
  • Hofmann, Robin; Abebe, Tamrat Befekadu; Herlitz, Johan; James, Stefan et al.

    Routine Oxygen Therapy Does Not Improve Health-Related Quality of Life in Patients With Acute Myocardial Infarction-Insights From the Randomized DETO2X-AMI Trial

    Part of Frontiers in Cardiovascular Medicine, 2021.

    Open access
  • Falahee, Marie; Simons, Gwenda; DiSantostefano, Rachael; Valor Méndez, Larissa et al.

    Treatment preferences for preventive interventions for rheumatoid arthritis: protocol of a mixed methods case study for the Innovative Medicines Initiative PREFER project

    Part of BMJ Open, 2021.

    Open access

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.

Download our biobank and registry report

Biobank and registry ethics & law, report cover

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.

Download our Nursing ethics report

Nursing ethics & ethics of care cover

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. We are planning an update in the autumn 2020. 

Download our Neuroethics report

Neuroethicxs & philosophy of the brain cover
Last modified: 2022-01-10