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

  • 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, 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.

  • 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
  • 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.

  • 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
  • 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.

  • 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, 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.

  • 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.

  • 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 the patient - patient-centered outcomes research, 2018.

    Open access
  • 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.

  • 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
  • A1:111a, Biomedicinskt centrum, Husargatan3, Uppsala 2018-11-23 13:00

    Pettersson, Mona

    COMPETENCE AND COMMUNICATION: Do Not Resuscitate Decisions in Cancer Care

    Open access
  • Ancillotti, Mirko; Eriksson, Stefan; Veldwijk, Jorien; Nihlén Fahlquist, Jessica et al.

    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.

    Open access
  • Farisco, Michele; Salles, Arleen; Evers, Kathinka

    Neuroethics: A Conceptual Approach

    Part of Cambridge Quarterly of Healthcare Ethics, p. 717-727, 2018.

  • Höglund, Anna T; Falkenström, Erica

    The status of ethics in Swedish health care management:: a qualitative study

    Part of BMC Health Services Research, p. 1-8, 2018.

    Open access
  • Godskesen, Tove

    God vård innebär att sällsynta sjukdomar ges resurser

    Part of Dagens Medicin, 2018.

  • Godskesen, Tove; Petri, Suzanne; Eriksson, Stefan; Halkoaho, Arja et al.

    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.

    Open access
  • Universitetshuset, sal IX, Biskopsgatan 3, Uppsala 2018-09-21 09:15

    Viberg Johansson, Jennifer

    INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences

    Open access
  • Pettersson, Mona; Hedström, Mariann; Höglund, Anna T

    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.

    Open access
  • Salles, Arleen; Evers, Kathinka; Farisco, Michele

    Neuroethics and Philosophy in Responsible Research and Innovation: The Case of the Human Brain Project

    Part of Neuroethics, 2018.

    Open access
  • Falkenström, Erica; Höglund, Anna T

    På spaning efter etik: Etisk kompetens och ansvarstagande för ledning ochstyrning av hälso- och sjukvården

    Appell förlag, 2018.

  • Middleton, Anna; Niemiec, Emilia; Prainsack, Barbara; Bobe, Jason et al.

    'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods

    Part of Personalized Medicine, p. 311-318, 2018.

    Open access
  • de Bekker-Grob, Esther W.; Veldwijk, Jorien; Jonker, Marcel; Donkers, Bas et al.

    The impact of vaccination and patient characteristics on influenza vaccination uptake of elderly people: A discrete choice experiment

    Part of Vaccine, p. 1467-1476, 2018.

  • de Bekker-Grob, Esther W.; Juhaeri, Juhaeri; Kihlbom, Ulrik; Levitan, Bennett et al.

    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.

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