
Publications from CRB
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 registries, clinical ethics, neuroethics and philosophy, risk information, nursing ethics, ethics of care and research ethics and law.
Recent publications
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“Genethics” and Public Health Genomics
Part of Applied Genomics and Public Health, p. 243-257, 2020.
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Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research
Part of PLoS ONE, 2019.
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Chronically ill patients' preferences for a financial incentive in a lifestyle intervention. Results of a discrete choice experiment
Part of PLoS ONE, 2019.
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"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.
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Factors and Situations Affecting the Value of Patient Preference Studies: Semi-Structured Interviews in Europe and the US
Part of Frontiers in Pharmacology, 2019.
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Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia
Part of Human Genetics, 2019.
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Swedish Healthcare Direct managers' views on gender (in)equity - Applying a conceptual model
Part of International Journal for Equity in Health, 2019.
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Farisco, Michele
Brain, consciousness and disorders of consciousness at the intersection of neuroscience and philosophy
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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.
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The Need for a Conceptual Expansion of Neuroethics
Part of AJOB Neuroscience, p. 126-128, 2019.
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Indicators and Criteria of Consciousness in Animals and Intelligent Machines: An Inside-Out Approach
Part of Frontiers in Systems Neuroscience, 2019.
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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.
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Short-term mental distress in research participants after receiving cardiovascular risk information
Part of PLoS ONE, 2019.
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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.
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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.
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Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment
Part of Patient Education and Counseling, p. 1528-1534, 2019.
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Beyond Research Ethics: Dialogues in Neuro-ICT Research
Part of Frontiers in Human Neuroscience, 2019.
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Attitudes of publics who are unwilling to donate DNA data for research.
Part of European Journal of Medical Genetics, p. 316-323, 2019.
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How psychological distance of a study sample in discrete choice experiments affects preference measurement: a colorectal cancer screening case study
Part of Patient Preference and Adherence, p. 273-282, 2019.
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Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics
Part of European Journal of Human Genetics, p. 169-182, 2019.
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The Human Brain Project: Responsible Brain Research for the Benefit of Society
Part of Neuron, p. 380-384, 2019.
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Matar, Amal
Considering a Baby? Responsible Screening for the Future: Ethical and social implications for implementation and use of preconception expanded carrier screening in Sweden
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Values and value conflicts in implementation and use of preconception expanded carrier screening: an expert interview study
Part of BMC Medical Ethics, 2019.
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Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis
Part of Patient, p. 297-305, 2019.
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"A perfect society": Swedish policymakers' ethical and social views on preconception expanded carrier screening
Part of Journal of Community Genetics, p. 267-280, 2019.
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Neuroethics and Philosophy in Responsible Research and Innovation: The Case of the Human Brain Project
Part of Neuroethics, p. 201-211, 2019.
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Ritorno alla Physis
Part of Etica & Politica / Ethics & Politics, p. 487-496, 2018.
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.
