Recent publications

  • Falkenström, Erica; Höglund, Anna T

    "There is total silence here". Ethical competence and inter-organizational learning in healthcare governance

    Part of Journal of Health Organisation & Management, p. 53-70, 2020.

  • Höglund, Anna T

    What shall we eat? An ethical framework for well-grounded food choices

    Part of Journal of Agricultural and Environmental Ethics, 2020.

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

    Anthropomorphism in AI

    Part of AJOB Neuroscience, p. 88-95, 2020.

    Open access
  • Pestoff, Rebecka; Svensson, Karin; Paneque, Milena; Ingvoldstad, Charlotta

    Developing a national certification pathway for genetic counselors in Sweden: a short report

    Part of Journal of Community Genetics, p. 113-117, 2020.

  • Niemiec, Emilia; Howard, Heidi Carmen

    Germline Genome Editing Research: What Are Gamete Donors (Not) Informed About in Consent Forms?

    Part of The CRISPR Journal, p. 52-63, 2020.

    Open access
  • Dal-Ré, Rafael; Solberg, Berge; Fuhr, Uwe; Eriksson, Stefan

    Reporting the details of consent procedures in clinical trials

    Part of Journal of Clinical Epidemiology, p. 150-151, 2020.

  • Niemiec, Emilia; Howard, Heidi Carmen

    “Genethics” and Public Health Genomics

    Part of Applied Genomics and Public Health, p. 243-257, 2020.

  • Rejnö, Åsa; Ternestedt, Britt-Marie; Lennart, Nordenfelt; Silfverberg, Gunilla et al.

    Dignity at stake: Caring for persons with impaired autonomy

    Part of Nursing Ethics, p. 104-115, 2020.

  • Motta, Benedetta M.; Grander, Christoph; Gogele, Martin; Foco, Luisa et al.

    Microbiota, type 2 diabetes and non-alcoholic fatty liver disease: protocol of an observational study

    Part of Journal of Translational Medicine, 2019.

    Open access
  • Nihlén Fahlquist, Jessica

    Public Health and the Virtues of Responsibility, Compassion and Humility

    Part of Public Health Ethics, p. 213-224, 2019.

  • Fernow, Josepine

    Achieving impact: some arguments for designing a communications strategy

    Part of RRI implementation in bioscience organisations, p. 177-180, 2019.

    Open access
  • Declich, Andrea

    RRI implementation in bioscience organisations: Guidelines from the STARBIOS2 project

    2019.

    Open access
  • Whichello, Chiara; Levitan, Bennett; Juaheri, Juaheri; Kihlbom, Ulrik et al.

    PATIENT PREFERENCES IN THE MEDICAL PRODUCT LIFECYCLE: INITIAL RESULTS FROM THE IMI PREFER PUBLIC-PRIVATE PROJECT

    Part of Value in Health, 2019.

  • Hansson, Mats G.; Holm, Anna; Segerdahl, Pär

    MIND THE RISK · DEN GENETISKA RISKINFORMATIONENS ETIK FÖR INDIVID OCH SAMHÄLLE: SLUTRAPPORT FRÅN ETT FORSKNINGSPROGRAM

    Makadam Förlag, 2019.

    Open access
  • Godskesen, Tove

    The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views

    Part of Clinical Ethics, 2019.

  • Frygner-Holm, Sara; Russ, Sandra; Quitmann, Julia; Ring, Lena et al.

    Pretend Play as an Intervention for Children With Cancer: A Feasibility Study

    Part of Journal of Pediatric Oncology Nursing, p. 65-75, 2019.

  • Fellmann, Florence; van El, Carla G.; Charron, Philippe; Michaud, Katarzyna et al.

    European recommendations integrating genetic testing into multidisciplinary management of sudden cardiac death

    Part of European Journal of Human Genetics, p. 1763-1773, 2019.

    Open access
  • Middleton, Anna; Milne, Richard; Howard, Heidi; Niemiec, Emilia et al.

    Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

    Part of European Journal of Human Genetics, 2019.

    Open access
  • van Overbeeke, Eline; Janssens, Rosanne; Whichello, Chiara; Schölin Bywall, Karin et al.

    Design, Conduct, and Use of Patient Preference Studies in the Medical Product Life Cycle: A Multi-Method Study

    Part of Frontiers in Pharmacology, 2019.

    Open access
  • Niemiec, Emilia; Howard, Heidi Carmen

    Include egg donors in CRISPR gene-editing debate

    Part of Nature, p. 51-51, 2019.

  • Goisauf, Melanie; Martin, Gillian; Bentzen, Heidi Beate; Budin-Ljösne, Isabelle et al.

    Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research

    Part of PLoS ONE, 2019.

    Open access
  • Molema, Claudia; Veldwijk, Jorien; Wendel-Vos, Wanda; de Wit, Ardine et al.

    Chronically ill patients' preferences for a financial incentive in a lifestyle intervention. Results of a discrete choice experiment

    Part of PLoS ONE, 2019.

    Open access
  • Northoff, Georg; Tumati, Shankar

    "Average is good, extremes are bad" - Non-linear inverted U-shaped relationship between neural mechanisms and functionality of mental features

    Part of Neuroscience and Biobehavioral Reviews, p. 11-25, 2019.

    Open access
  • Ormond, Kelly E.; Bombard, Yvonne; Bonham, Vence L.; Hoffman-Andrews, Lily et al.

    The clinical application of gene editing: ethical and social issues

    Part of Personalized Medicine, p. 337-350, 2019.

  • Whichello, Chiara; van Overbeeke, Eline; Janssens, Rosanne; Schölin Bywall, Karin et al.

    Factors and Situations Affecting the Value of Patient Preference Studies: Semi-Structured Interviews in Europe and the US

    Part of Frontiers in Pharmacology, 2019.

    Open access
  • Milne, Richard; Morley, Katherine I.; Howard, Heidi; Niemiec, Emilia et al.

    Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia

    Part of Human Genetics, p. 1237-1246, 2019.

    Open access
  • Kaminsky, Elenor; Höglund, Anna T

    Swedish Healthcare Direct managers' views on gender (in)equity - Applying a conceptual model

    Part of International Journal for Equity in Health, 2019.

    Open access
  • Farisco, Michele

    Brain, consciousness and disorders of consciousness at the intersection of neuroscience and philosophy

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

    The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks

    Part of European Journal of Human Genetics, p. 1159-1167, 2019.

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

    The Need for a Conceptual Expansion of Neuroethics

    Part of AJOB Neuroscience, p. 126-128, 2019.

    Open access
  • Soulier, Alexandra

    Reconsidering Dynamic Consent in Biobanking Ethical and Political Consequences of Transforming Research Participants into ICT Users

    Part of IEEE technology & society magazine, p. 62-70, 2019.

  • Pennartz, Cyriel M. A.; Farisco, Michele; Evers, Kathinka

    Indicators and Criteria of Consciousness in Animals and Intelligent Machines: An Inside-Out Approach

    Part of Frontiers in Systems Neuroscience, 2019.

    Open access
  • Fernow, Josepine; de Miguel Beriain, Inigo; Brey, Philip; Stahl, Berndt

    Setting future ethical standards for ICT, Big Data, AI and robotics: The contribution of three European projects

    Part of Orbit Journal, 2019.

    Open access
  • Guerrero, Manuel; Del Villar, María Soledad; Hau, Boris; Johansson, María Teresa

    Professions and Profiles:: Epistemic Communities and the Registration of Human Rights Violations

    Part of Resistance to Political Violence in Latin America, p. 79-115, 2019.

  • Northoff, Georg; Wainio-Theberge, Soren; Evers, Kathinka

    Is temporo-spatial dynamics the “common currency” of brain and mind?: In Quest of “Spatiotemporal Neuroscience”

    Part of Physics of Life Reviews, 2019.

  • Janssens, Rosanne; Russo, Selena; van Overbeeke, Eline; Whichello, Chiara et al.

    Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA

    Part of Patient, p. 513-526, 2019.

    Open access
  • Viberg, Jennifer; Langenskiöld, Sophie; Segerdahl, Pär; Hansson, Mats G. et al.

    Research participants' preferences for receiving genetic risk information: a discrete choice experiment

    Part of Genetics in Medicine, p. 2381-2389, 2019.

  • Larrivee, Denis; Farisco, Michele

    Realigning the Neural Paradigm for Death

    Part of Journal of Bioethical Inquiry, p. 259-277, 2019.

  • Grauman, Åsa; Hansson, Mats G.; Puranen, Arvid; James, Stefan et al.

    Short-term mental distress in research participants after receiving cardiovascular risk information

    Part of PLoS ONE, 2019.

    Open access
  • Slokenberga, Santa; Reichel, Jane; Niringiye, Rachel; Croxton, Talishiea et al.

    EU data transfer rules and African legal realities: is data exchange for biobank research realistic?

    Part of International Data Privacy Law, p. 30-48, 2019.

  • Godskesen, Tove; Eriksson, Stefan

    Selektiv rapportering av kliniska prövningar

    Part of Dagens Medicin, 2019.

  • Slokenberga, Santa; Howard, Heidi Carmen

    THE RIGHT TO SCIENCE AND HUMAN GERMLINE EDITING. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act

    Part of Förvaltningsrättslig Tidskrift, p. 199-222, 2019.

    Open access
  • Russo, Selena; Jongerius, Chiara; Faccio, Flavia; Pizzoli, Silvia F.M. et al.

    Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies

    Part of Value in Health, p. 491-501, 2019.

    Open access
  • Dal-Ré, Rafael; Avendaño-Solà, Cristina; Bloechl-Daum, Brigitte; de Boer, Anthonius et al.

    Low risk pragmatic trials do not always require participants' informed consent

    Part of BMJ. British Medical Journal, 2019.

  • Grauman, Åsa; Hansson, Mats G.; James, Stefan K; Veldwijk, Jorien et al.

    Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment

    Part of Patient Education and Counseling, p. 1528-1534, 2019.

    Open access
  • Stahl, Bernd Carsten; Akintoye, Simisola; Fothergill, Tyr; Guerrero, Manuel et al.

    Beyond Research Ethics: Dialogues in Neuro-ICT Research

    Part of Frontiers in Human Neuroscience, 2019.

    Open access
  • Carrieri, Daniele; Howard, Heidi Carmen; Clarke, Angus J.; Stefansdottir, Vigdis et al.

    Reply to Bombard and Mighton

    Part of European Journal of Human Genetics, p. 507-508, 2019.

  • Mascalzoni, Deborah; Bentzen, Heidi Beate; Budin-Ljosne, Isabelle; Bygrave, Lee Andrew et al.

    Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?

    Part of Annals of Internal Medicine, p. 332-334, 2019.

  • Ballantyne, Angela; Eriksson, Stefan

    Research ethics revised: The new CIOMS guidelines and the World Medical Association Declaration of Helsinki in context

    Part of Bioethics, p. 310-311, 2019.

  • Middleton, Anna; Milne, Richard; Thorogood, Adrian; Kleiderman, Erika et al.

    Attitudes of publics who are unwilling to donate DNA data for research.

    Part of European Journal of Medical Genetics, p. 316-323, 2019.

    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.

Download our Neuroethics report

Neuroethicxs & philosophy of the brain