
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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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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Sal IV, Universtetshuset, Biskopsgatan 3, Uppsala 2019-02-28 13:00
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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Representation of Ethnic Minorities in Swedish Clinical Cancer Trials: A Qualitative Study of Physicians' Experiences
Part of Harvard Public Health Review, p. 1 1-10 10, 2018.
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Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues
Part of International Journal of Environmental Research and Public Health, 2018.
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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 the patient - patient-centered outcomes research, 2018.
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Recommendations for Improving the Quality of Rare Disease Registries
Part of International Journal of Environmental Research and Public Health, 2018.
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Drug addiction: from neuroscience to ethics
Part of Frontiers in Psychiatry, 2018.
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“A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening
Part of Journal of Community Genetics, 2018.
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A1:111a, Biomedicinskt centrum, Husargatan3, Uppsala 2018-11-23 13:00
Pettersson, Mona
COMPETENCE AND COMMUNICATION: Do Not Resuscitate Decisions in Cancer Care
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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.
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The status of ethics in Swedish health care management:: a qualitative study
Part of BMC Health Services Research, p. 1-8, 2018.
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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, p. 475-485, 2018.
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Universitetshuset, sal IX, Biskopsgatan 3, Uppsala 2018-09-21 09:15
Viberg Johansson, Jennifer
INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences
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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.
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Neuroethics and Philosophy in Responsible Research and Innovation: The Case of the Human Brain Project
Part of Neuroethics, 2018.
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På spaning efter etik: Etisk kompetens och ansvarstagande för ledning ochstyrning av hälso- och sjukvården
Appell förlag, 2018.
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'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods
Part of Personalized Medicine, p. 311-318, 2018.
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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.
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Filosofía de las Neurociencias.: Cerebro, mente, persona
Ediciones Universidad Catolica de Salta, 2018.
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Large-scale brain simulation and disorders of consciousness: Mapping technical and conceptual issues
Part of Frontiers in Psychology, 2018.
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Offentlighet eller dataskydd som ledande princip i EU:s integrerade förvaltning?
Part of Förvaltningsrättslig Tidskrift, p. 91-113, 2018.
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Legal & ethical compliance when sharing biospecimen
Part of Briefings in Functional Genomics & Proteomics, p. 1-7, 2018.
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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.
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Readability of informed consent forms for whole-exome and whole-genome sequencing
Part of Journal of Community Genetics, p. 143-151, 2018.
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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.
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The challenges of the expanded availability of genomic information: an agenda-setting paper.
Part of Journal of Community Genetics, p. 103-116, 2018.
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How to counter undeserving authorship
Part of Insights: the UKSG journal, p. 1 1-6 6, 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.
