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
This is a list of our most recent publications.
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(2017).
Reverse Discrimination For Psychiatric Genetic Studies In Population-Based Biobanks.
European Neuropsychopharmacology, 27: S475-S476 DOI -
(2017).
Rheumatoid Arthritis Patients Perspectives On The Value Of Patient Preferences In Regulatory Decision-Making During Drug Development: A Qualitative Study.
Value in Health, 20(9): A540-A540 -
(2017).
Stakeholder Perspectives On The Integration Of Patient Preferences In The Medical Product Life Cycle: A Multimethod Approach.
Value in Health, 20(9): A689-A689 -
(2017).
Mimicking Real Life Decision-Making In Health: Allowing Respondents Time-To-Think In A Discrete Choice Experiment.
Value in Health, 20(9): A406-A406 -
(2017).
Conditions And Contextual Factors That Influence The Utility And Application Of Patient Preference Studies: A Study Combining Literature And Focus Groups.
Value in Health, 20(9): A690-A691 -
(2017).
Compendium Of Methods For Measuring Patient Preferences In Medical Treatment.
Value in Health, 20(9): A684-A685 -
(2017).
Current ethical and legal issues in health-related direct-to-consumer genetic testing.
Personalized Medicine, 14(5): 433-445 DOI -
(2017).
How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF).
J Community Genet -
(2017).
Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape.
J Community Genet -
(2017).
Readability of informed consent forms for whole-exome and whole-genome sequencing.
J Community Genet -
(2017).
The challenges of the expanded availability of genomic information: an agenda-setting paper.
J Community Genet -
(2017).
Responsible implementation of expanded carrier screening.
Eur J Hum Genet, 25 25(11 11): 1291 1291- -
(2017).
Hostile urban architecture: A critical discussion of the seemingly offensive art of keeping people away.
Etikk i praksis, 11(2): 27-44 DOI -
(2017).
Proactive epigenesis and ethics - Response.
EMBO Reports, . 18(8): 1272-1272 DOI -
(2017).
Regulating the advertising of genetic tests in Europe: a balancing act.
Journal of Medical Genetics, 54(10): 651-656 DOI -
(2017).
The Intrinsic Activity of the Brain and Its Relation to Levels and Disorders of Consciousness.
Mind and Matter, . 15(2): 197-219 -
(2017).
The ethical relevance of the unconscious.
Philosophy Ethics and Humanities in Medicine, 12(11) DOI -
(2017).
Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation.
Arthritis care & research, . 69(10): 1558-1565 DOI -
(2017).
Responsibility for scientific misconduct in collaborative papers.
Medicine, Health care and Philosophy Epub ahead of print. DOI -
(2017).
The Role of Solidarity(-ies) in Rare Diseases Research..
Advances in Experimental Medicine and Biology, 1031: 589-604 DOI
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.
