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.
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
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Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study.
Part of European Journal of Human Genetics, 2023.
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Personal autonomy: From practice to theory
Part of Theoria, p. 1063-1065, 2022.
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Ethical Analysis of Egypt's Law Regulating Clinical Research
Part of Journal of Empirical Research on Human Research Ethics, p. 494-503, 2022.
DOI for Ethical Analysis of Egypt's Law Regulating Clinical Research Download full text (pdf) of Ethical Analysis of Egypt's Law Regulating Clinical Research
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Academic Integrity Outreach Efforts – Making Education Accessible and Inclusive
Part of Academic Integrity: Broadening Practices, Technologies, and the Role of Students, p. 3-16, 2022.
DOI for Academic Integrity Outreach Efforts – Making Education Accessible and Inclusive
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Researching Academic Integrity: Designing Research to Help Participants Give Genuine Responses Using Quantitative and Qualitative Methods
Part of Academic Integrity: Broadening Practices, Technologies, and the Role of Students, p. 47-65, 2022.
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Preparing Preservice Teachers to Teach Academic Integrity and Ethics
Part of Ethics and Integrity in Teacher Education, p. 43-54, 2022.
DOI for Preparing Preservice Teachers to Teach Academic Integrity and Ethics
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The need for a multi-disciplinary reflection about frailty and cognitive impairment in chronic kidney disease
Part of Nephrology, Dialysis and Transplantation, 2022.
DOI for The need for a multi-disciplinary reflection about frailty and cognitive impairment in chronic kidney disease Download full text (pdf) of The need for a multi-disciplinary reflection about frailty and cognitive impairment in chronic kidney disease
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Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment
Part of BMC Medical Ethics, 2022.
DOI for Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment Download full text (pdf) of Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment
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Hospital staff at most psychiatric clinics in Stockholm experience that patients who self-harm have too long hospital stays, with ensuing detrimental effects.
Part of Nordic Journal of Psychiatry, p. 287-294, 2022.
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Age and Illness Severity: A Case of Irrelevant Utilities?
Part of Utilitas, p. 209-224, 2022.
DOI for Age and Illness Severity: A Case of Irrelevant Utilities?
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Rawlsian reasoning about fairness at the end of life.
Part of BMJ Supportive & Palliative Care, 2022.
DOI for Rawlsian reasoning about fairness at the end of life.
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Health literacy and digital health information-seeking behavior - a cross-sectional study among highly educated Swedes
Part of BMC Public Health, 2022.
DOI for Health literacy and digital health information-seeking behavior - a cross-sectional study among highly educated Swedes Download full text (pdf) of Health literacy and digital health information-seeking behavior - a cross-sectional study among highly educated Swedes
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Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review
Part of European Journal of Human Genetics, p. 1000-1010, 2022.
DOI for Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review Download full text (pdf) of Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review
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Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process
Part of European Journal of Human Genetics, p. 1391-1397, 2022.
DOI for Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process Download full text (pdf) of Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process
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Guidelines for Research Ethics and Research Integrity in Citizen Science
Part of Research Ideas and Outcomes, 2022.
DOI for Guidelines for Research Ethics and Research Integrity in Citizen Science
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Exploring preferences of at-risk individuals for preventive treatments for rheumatoid arthritis
Part of Scandinavian Journal of Rheumatology, p. 1-11, 2022.
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Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in Sweden
Part of BMC Medical Ethics, 2022.
DOI for Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in Sweden Download full text (pdf) of Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in Sweden
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Parent Perceptions of a Pretend Play Intervention for Their Children With Cancer
Part of Journal of Nursing Research, 2022.
DOI for Parent Perceptions of a Pretend Play Intervention for Their Children With Cancer
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Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study
Part of BMC Medical Ethics, 2022.
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Who is Responsible for Remedying the Harm Caused to Children of Prisoners?
Part of Ethics and social welfare, p. 1-19, 2022.
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Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study
Part of BMC Medical Ethics, 2022.
DOI for Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study Download full text (pdf) of Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study
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Who is Responsible for Remedying the Harm Caused to Children of Prisoners?
Part of Ethics and social welfare, p. 1-19, 2022.
DOI for Who is Responsible for Remedying the Harm Caused to Children of Prisoners?
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Does It Matter How You Ask?: Assessing the Impact of Failure or Effectiveness Framing on Preferences for Antibiotic Treatments in a Discrete Choice Experiment
Part of Patient Preference and Adherence, p. 2921-2936, 2022.
DOI for Does It Matter How You Ask?: Assessing the Impact of Failure or Effectiveness Framing on Preferences for Antibiotic Treatments in a Discrete Choice Experiment Download full text (pdf) of Does It Matter How You Ask?: Assessing the Impact of Failure or Effectiveness Framing on Preferences for Antibiotic Treatments in a Discrete Choice Experiment
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A proposal for an international Code of Conduct for data sharing in genomics
Part of Developing World Bioethics, 2022.
DOI for A proposal for an international Code of Conduct for data sharing in genomics
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Factor's that impact on women's decision-making around prenatal genomic tests: An international discrete choice survey
Part of Prenatal Diagnosis, p. 934-946, 2022.
DOI for Factor's that impact on women's decision-making around prenatal genomic tests: An international discrete choice survey Download full text (pdf) of Factor's that impact on women's decision-making around prenatal genomic tests: An international discrete choice survey
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Debating Embryonic Stem Cell Research: Handling Moral Concerns More Gently
Part of Ethical Inquiries after Wittgenstein, p. 173-188, 2022.
DOI for Debating Embryonic Stem Cell Research: Handling Moral Concerns More Gently
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Italians locked down: people's responses to early COVID-19 pandemic public health measures
Part of Humanities and Social Sciences Communications, 2022.
DOI for Italians locked down: people's responses to early COVID-19 pandemic public health measures Download full text (pdf) of Italians locked down: people's responses to early COVID-19 pandemic public health measures
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EU regulatory responses to medical machine learning in paediatric care: A missed opportunity to overcome a therapeutic gap?
Part of De lege Yearbook 2021:Law, AI and Digitalisation, p. 379-400, 2022.
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Medicinsk rätt
2022.
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Genetik
Part of Medicinsk rätt, p. 237-253, 2022.
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The voice of the self: a typology of general practitioners' emotional responses to situational and contextual stressors
Part of Scandinavian Journal of Primary Health Care, p. 289-304, 2022.
DOI for The voice of the self: a typology of general practitioners' emotional responses to situational and contextual stressors Download full text (pdf) of The voice of the self: a typology of general practitioners' emotional responses to situational and contextual stressors
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What names for covert awareness?: A systematic review
Part of Frontiers in Human Neuroscience, 2022.
DOI for What names for covert awareness?: A systematic review Download full text (pdf) of What names for covert awareness?: A systematic review
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Preferences for preventive treatments for rheumatoid arthritis: discrete choice survey in the UK, Germany and Romania
Part of Rheumatology, 2022.
DOI for Preferences for preventive treatments for rheumatoid arthritis: discrete choice survey in the UK, Germany and Romania Download full text (pdf) of Preferences for preventive treatments for rheumatoid arthritis: discrete choice survey in the UK, Germany and Romania
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Augmenting Human Selves Through Artificial Agents - Lessons From the Brain
Part of Frontiers in Computational Neuroscience, 2022.
DOI for Augmenting Human Selves Through Artificial Agents - Lessons From the Brain Download full text (pdf) of Augmenting Human Selves Through Artificial Agents - Lessons From the Brain
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Including a discussion forum in a web-based intervention on fertility and sexuality following cancer - Usage and content
Part of Internet Interventions, 2022.
DOI for Including a discussion forum in a web-based intervention on fertility and sexuality following cancer - Usage and content Download full text (pdf) of Including a discussion forum in a web-based intervention on fertility and sexuality following cancer - Usage and content
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Clinical relevance and translational impact of reduced penetrance in genetic movement disorders
Part of Medizinische Genetik, p. 151-156, 2022.
DOI for Clinical relevance and translational impact of reduced penetrance in genetic movement disorders Download full text (pdf) of Clinical relevance and translational impact of reduced penetrance in genetic movement disorders
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Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research
Part of International Journal of Qualitative Studies on Health and Well-being, 2022.
DOI for Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research Download full text (pdf) of Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research
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Fest och fasta.: Om balans och etiska avvägningar vid val av mat.
Part of Signum, p. 27-32, 2022.
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The Rights of Children of Prisoners During a Pandemic: A Case for Early Release of Imprisoned Parents?
Part of The Global and Social Consequences of the COVID-19 Pandemic, p. 199-214, 2022.
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Dignity in bodily care at the end of life in a nursing home: an ethnographic study
Part of BMC Geriatrics, 2022.
DOI for Dignity in bodily care at the end of life in a nursing home: an ethnographic study Download full text (pdf) of Dignity in bodily care at the end of life in a nursing home: an ethnographic study
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Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study
Part of BMC Palliative Care, 2022.
DOI for Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study Download full text (pdf) of Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study
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. We are planning an update in the autumn 2020.
