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

  • 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, p. 1-10, 2018.

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

    “A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening

    Part of Journal of Community Genetics, 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; 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, 2018.

    Open access
  • Godskesen, Tove

    God vård innebär att sällsynta sjukdomar ges resurser

    Part of Dagens Medicin, 2018.

  • 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.

  • Farisco, Michele

    Filosofía de las Neurociencias.: Cerebro, mente, persona

    Ediciones Universidad Catolica de Salta, 2018.

  • Farisco, Michele; Hellgren Kotaleski, Jeanette; Evers, Kathinka

    Large-scale brain simulation and disorders of consciousness: Mapping technical and conceptual issues

    Part of Frontiers in Psychology, 2018.

    Open access
  • Helgesson, Gert; Eriksson, Stefan

    Revise the ICMJE Recommendations regarding authorship responsibility!

    Part of Learned Publishing, p. 267-269, 2018.

  • Hansson, Mats G.; Bouder, Frederic; Howard, Heidi Carmen

    Genetics and risk - an exploration of conceptual approaches to genetic risk

    Part of Journal of Risk Research, p. 101-108, 2018.

  • Reichel, Jane

    Offentlighet eller dataskydd som ledande princip i EU:s integrerade förvaltning?

    Part of Förvaltningsrättslig Tidskrift, p. 91-113, 2018.

    Open access
  • Klingström, Tomas; Bongcam Rudloff, Erik; Reichel, Jane

    Legal & ethical compliance when sharing biospecimen

    Part of Briefings in Functional Genomics & Proteomics, p. 1-7, 2018.

    Open access
  • Howard, H.C.; Iwarsson, E

    Mapping Uncertainty in Genomics

    Part of Journal or Risk Research, p. 117 117-128 128, 2018.

  • Howard, Heidi Carmen; van El, Carla G.; Forzano, Francesca; Radojkovic, D. et al.

    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.

    Open access
  • Niemiec, E.; Vears, D. F.; Borry, P.; Howard, Heidi Carmen et al.

    Readability of informed consent forms for whole-exome and whole-genome sequencing

    Part of Journal of Community Genetics, p. 143-151, 2018.

    Open access
  • Howard, Heidi Carmen; Mascalzoni, Deborah; Mabile, Laurence; Houeland, Gry et al.

    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.

    Open access
  • De Wert, G.; Heindryckx, B.; Pennings, G.; Clarke, A. et al.

    Responsible innovation in human germline gene editing: Background document to the recommendations of ESHG and ESHRE

    Part of European Journal of Human Genetics, p. 450-470, 2018.

  • de Wert, Guido; Pennings, Guido; Clarke, Angus; Eichenlaub-Ritter, Ursula et al.

    Human germline gene editing: Recommendations of ESHG and ESHRE

    Part of European Journal of Human Genetics, p. 445-449, 2018.

  • Borry, Pascal; Bentzen, Heidi Beate; Budin-Ljøsne, Isabelle; Cornel, Martina C et al.

    The challenges of the expanded availability of genomic information: an agenda-setting paper.

    Part of Journal of Community Genetics, p. 103-116, 2018.

    Open access
  • Eriksson, Stefan; Godskesen, Tove; Andersson, Lars; Helgesson, Gert et al.

    How to counter undeserving authorship

    Part of Insights: the UKSG journal, p. 1 1-6 6, 2018.

    Open access
  • Bayliss, Kerin; Raza, Karim; Simons, Gwenda; Falahee, Marie et al.

    Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease: a meta-synthesis of qualitative studies

    Part of Journal of Risk Research, p. 167-189, 2018.

  • Howard, Heidi Carmen; Iwarsson, Erik

    Mapping uncertainty in genomics

    Part of Journal of Risk Research, p. 117-128, 2018.

  • Höglund, Anna; Carlsson, Marianne; Holmström, Inger; Lännerström, Linda et al.

    From denial to awareness: a conceptual model for obtaining equity in healthcare

    Part of International Journal for Equity in Health, 2018.

  • Helgesson, Gert; Eriksson, Stefan

    Responsibility for scientific misconduct in collaborative papers

    Part of Medicine, Health care and Philosophy, p. 423-430, 2018.

    Open access
  • Malmqvist, Erik; Furberg, Elisabeth; Sandman, Lars

    Ethical aspects of medical age assessment in the asylum process: a Swedish perspective

    Part of International journal of legal medicine (Print), p. 815-823, 2018.

    Open access
  • Kalokairinou, L; Howard, Heidi Carmen; Slokenberga, Santa; Fisher, E et al.

    Legislation of direct-to-consumer genetic testing in Europe:: a fragmented regulatory landscape

    Part of Journal of Community Genetics, p. 117-132, 2018.

    Open access
  • Slokenberga, Santa

    Book review - T.K. Hervey, C.A. Young and L.E. Bishop (eds.) Research Handbook on EU Health Law and Policy (Cheltenham: Edward Elgar Publishing, 2017), ISBN 978-1785364716, 592 pp.

    Part of European Journal of Health Law, p. 355-360, 2018.

  • Eriksson, Stefan; Helgesson, Gert

    Time to stop talking about ‘predatory journals’

    Part of Learned Publishing, p. 181-183, 2018.

  • Viberg, Jennifer; Segerdahl, Pär; Hösterey Ugander, Ulrika; Hansson, Mats G. et al.

    Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research

    Part of Patient Education and Counseling, p. 422-427, 2018.

  • Piciocchi, Cinzia; Ducato, Rossana; Martinelli, Lucia; Perra, Silvia et al.

    Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.

    Part of Journal of Community Genetics, p. 177-190, 2018.

    Open access
  • Nihlén Fahlquist, Jessica

    Vaccine hesitancy and trust: Ethical aspects of risk communication

    Part of Scandinavian Journal of Public Health, p. 182-188, 2018.

  • Salles, Arleen

    Neuroethics in Context: The Development of the Discipline in Argentina

    Part of The Routledge Handbook of Neuroethics, 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