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

  • 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; 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 et al.

    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 et al.

    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.

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

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

    Part of Physics of Life Reviews, 2019.

    Open access
  • 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, 2019.

    Open access
  • Viberg Johansson, 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, 2019.

  • Larrivee, Denis; Farisco, Michele

    Realigning the Neural Paradigm for Death

    Part of Journal of Bioethical Inquiry, 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
  • Godskesen, Tove E.; Eriksson, Stefan

    Selektiv rapportering av kliniska prövningar

    Part of Dagens Medicin, 2019.

  • 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. 1-14, 2019.

  • 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.

  • 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
  • Helgesson, Gert; Bülow, William; Eriksson, Stefan; Godskesen, Tove et al.

    Should the deceased be listed as authors?

    Part of Journal of Medical Ethics, p. 331-338, 2019.

  • Cornel, Martina C.; Howard, Heidi Carmen; Lim, Daniel; Bonham, Vence L. et al.

    Moving towards a cure in genetics: what is needed to bring somatic gene therapy to the clinic?

    Part of European Journal of Human Genetics, p. 484-487, 2019.

  • Veldwijk, Jorien; Groothuis-Oudshoorn, Catharina G. M.; Kihlbom, Ulrik; Langenskiöld, Sophie et al.

    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.

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

    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.

    Open access
  • Witt, Stefanie; Escherich, Gabriele; Rutkowski, Stefan; Kappelhoff, Gerhard et al.

    Exploring the Potential of a Pretend Play Intervention in Young Patients With Leukemia

    Part of Journal of Pediatric Nursing, p. E98-E106, 2019.

  • Salles, Arleen; Bjaalie, Jan; Evers, Kathinka; Farisco, Michele et al.

    The Human Brain Project: Responsible Brain Research for the Benefit of Society

    Part of Neuron, p. 380-384, 2019.

    Open access
  • 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

    Open access
  • Matar, Amal; Hansson, Mats G.; Höglund, Anna T

    Values and value conflicts in implementation and use of preconception expanded carrier screening: an expert interview study

    Part of BMC Medical Ethics, 2019.

    Open access
  • Schölin Bywall, Karin; Veldwijk, Jorien; Hansson, Mats G.; Kihlbom, Ulrik et al.

    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.

    Open access
  • Matar, Amal; Hansson, Mats G.; Höglund, Anna T.

    "A perfect society": Swedish policymakers' ethical and social views on preconception expanded carrier screening

    Part of Journal of Community Genetics, p. 267-280, 2019.

    Open access
  • Helgesson, Gert; Eriksson, Stefan

    Authorship Order

    Part of Learned Publishing, p. 106-112, 2019.

  • Farisco, Michele

    Ritorno alla Physis

    Part of Etica & Politica / Ethics & Politics, p. 487-496, 2018.

  • Skogeland, Ulrika; de Monestrol, Isabelle; Godskesen, Tove E.

    WS18 Waiting for lung transplant, manifold experiences: a literature review

    Part of WS18 Waiting for lung transplant, manifold experiences: a literature review, p. S33-, 2018.

  • Bjelobaba, Sonja

    Academic Integrity Skill Development amongst the Faculty at a Swedish University

    Part of Towards Consistency and Transparency in Academic Integrity, p. 131-146, 2018.

  • Slokenberga, Santa

    Biobanking between the EU and Third Countries - Can Data Sharing Be Facilitated via Soft Regulatory Tools?

    Part of European Journal of Health Law, p. 517-536, 2018.

  • Spörndly, Robert; Eriksson, Stefan; Godskesen, Tove E.

    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.

  • Renzi, Chiara; Provencal, Nadine; Bassil, Katherine C; Evers, Kathinka et al.

    From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health.

    Part of Progress in Molecular Biology and Translational Science, p. 299-323, 2018.

  • Skogeland, Ulrika; de Monestrol, Isabelle; Godskesen, Tove E.

    Experiences of Individuals Awaiting Lung Transplantation

    Part of Respiratory care, p. 1535-1540, 2018.

  • Vears, Danya F.; Niemiec, Emilia; Howard, Heidi Carmen; Borry, Pascal et al.

    Analysis of VUS reporting, variant reinterpretation and recontact policies in clinical genomic sequencing consent forms

    Part of European Journal of Human Genetics, p. 1743-1751, 2018.

    Open access
  • Gainotti, Sabina; Mascalzoni, Deborah; Bros-Facer, Virginie; Petrini, Carlo et al.

    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.

    Open access
  • Delegates, Global Neuroethics Summit; Rommelfanger, Karen S.; Jeong, Sung-Jin; Ema, Arisa et al.

    Neuroethics Questions to Guide Ethical Research in the International Brain Initiatives

    Part of Neuron, p. 19-36, 2018.

  • Vears, D. F.; Niemiec, Emilia; Howard, Heidi Carmen; Borry, P. et al.

    How do consent forms for diagnostic high-throughput sequencing address unsolicited and secondary findings?: A content analysis

    Part of Clinical Genetics, p. 321-329, 2018.

    Open access
  • Samuel, Gabrielle; Howard, Heidi Carmen; Cornel, Martina; van El, Carla et al.

    A response to the forensic genetics policy initiative's report "Establishing Best Practice for Forensic DNA Databases"

    Part of Forensic Science International, p. E19-E21, 2018.

  • Kodra, Yllka; Weinbach, Jerome; Posada-de-la-Paz, Manuel; Coi, Alessio et al.

    Recommendations for Improving the Quality of Rare Disease Registries

    Part of International Journal of Environmental Research and Public Health, 2018.

    Open access
  • Whichello, Chiara; Schölin Bywall, Karin; Mauer, Jonathan; Watt, Stephen J. et al.

    Mapping benefit-risk decision-making processes and identifying decision points with the potential to include patient preference information throughout the medical product lifecycle

    Part of Pharmacoepidemiology and Drug Safety, p. 206-206, 2018.

    Open access
  • Whichello, Chiara; Soekhai, Vikas; Levitan, Bennett; Veldwijk, Jorien et al.

    Compendium of methods for measuring patient preferences in medical treatment

    Part of Pharmacoepidemiology and Drug Safety, p. 517-518, 2018.

    Open access
  • Kihlbom, Ulrik; Russo, Selena; Monzani, Dario; Stichele, Geert Vander et al.

    Patient-centered benefit-risk decision-making and the role of educational tools and psychological instruments in preference elicitation-Year 1 of IMI prefer

    Part of Pharmacoepidemiology and Drug Safety, p. 512-512, 2018.

  • Farisco, Michele; Evers, Kathinka; Changeux, Jean-Pierre

    Drug addiction: from neuroscience to ethics

    Part of Frontiers in Psychiatry, 2018.

    Open access
  • Godskesen, Tove; Fernow, Josepine; Eriksson, Stefan

    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway

    Part of European Journal of Cancer Care, 2018.

    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.

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Biobank and registry ethics & law, report

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.

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Nursing ethics & ethics of care

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.

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Neuroethicxs & philosophy of the brain