Recent publications

  • Falahee, Marie; Simons, Gwenda; DiSantostefano, Rachael; Valor Méndez, Larissa et al.

    Treatment preferences for preventive interventions for rheumatoid arthritis: protocol of a mixed methods case study for the Innovative Medicines Initiative PREFER project

    Part of BMJ Open, 2021.

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

    Does being exposed to an educational tool influence patient preferences? The influence of an educational tool on patient preferences assessed by a discrete choice experiment.

    Part of Patient Education and Counseling, 2021.

  • Lundin, Emma; Godskesen, Tove E.

    End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes

    Part of BMC Nursing, 2021.

    Open access
  • Sal X, Universitetshuset, Biskopsgatan 3, Uppsala 2021-05-12 13:00

    Schölin Bywall, Karin

    Getting a Say: Bringing patients’ views on benefit-risk into medical approvals

    Open access
  • Nihlén Fahlquist, Jessica

    Etiska aspekter på riskkommunikation till gravida

    Part of Etik för barnmorskor, 2021.

  • Palmryd, Lena; Rejnö, Åsa; Godskesen, Tove E.

    Integrity at the end of life in the intensive care unit: a qualitative study of nurses’ views

    Part of Annals of Intensive Care, 2021.

    Open access
  • Chandler, Jennifer A.; Cabrera, Laura Y.; Doshi, Paresh; Fecteau, Shirley et al.

    International Legal Approaches to Neurosurgery for Psychiatric Disorders

    Part of Frontiers in Human Neuroscience, 2021.

    Open access
  • Demmelmaier, Ingrid; Brooke, Hannah L.; Henriksson, Anna; Mazzoni, Anne-Sophie et al.

    Does exercise intensity matter for fatigue during (neo-)adjuvant cancer treatment?: The Phys-Can randomised clinical trial

    Part of Scandinavian Journal of Medicine and Science in Sports, 2021.

    Open access
  • Eriksson Dufva, Ylva; Westman, Henrietta; Kihlbom, Ulrik; Sullivan, Patrick F. et al.

    Swedish large-scale schizophrenia study: Why do patients and healthy controls participate?

    Part of Schizophrenia Research, p. 360-366, 2021.

    Open access
  • Ancillotti, Mirko

    Antibiotic Resistance: A Multimethod Investigation of Individual Responsibility and Behaviour

    Open access
  • Grauman, Åsa; Hansson, Mats G.; James, Stefan; Hauber, Brett et al.

    Communicating test results from a general health checkup: the public’s preferences from a discrete choice experiment survey

    Part of Patient Related Outcome Measures, 2021.

    Open access
  • Niemiec, Emilia

    COVID-19 and misinformation: Is censorship of social media a remedy to the spread of medical misinformation?

    Part of EMBO Reports, 2020.

    Open access
  • Siemaszko, Konrad; Rodrigues, Rowena; Slokenberga, Santa

    D5.6: Recommendations for the enhancement of the existing legal frameworks for genomics, human enhancement, and AI and robotics


    Open access
  • Slokenberga, Santa

    Genetiska interventioner inom och utanför hälso- och sjukvården

    Part of Medicinsk rätt, p. 185-200, 2020.

  • Zillén, Kavot; Mattsson, Titti; Slokenberga, Santa

    Vid vägs ände: några nutida och framtida utmaningar för den medicinska rätten

    Part of Medicinsk rätt, p. 277-284, 2020.

  • Zillén, Kavot; Mattsson, Titti; Slokenberga, Santa


    Part of Medicinsk rätt, p. 23-36, 2020.

  • Bjelobaba, Sonja

    Academic Integrity Teacher Training: Preventive Pedagogical Practices on the Course Level

    Part of Integrity in Education for Future Happiness, p. 9-18, 2020.

    Open access
  • Rubinstein, Yaffa R.; Robinson, Peter N.; Gahl, William A.; Avillach, Paul et al.

    The case for open science: rare diseases

    Part of JAMIA Open, p. 472-486, 2020.

    Open access
  • Schölin Bywall, Karin; Kihlbom, Ulrik; Hansson, Mats; Falahee, Marie et al.

    Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients

    Part of Arthritis Research & Therapy, 2020.

    Open access
  • Ancillotti, Mirko; Eriksson, Stefan; Godskesen, Tove; Andersson, Dan I. et al.

    An Effort Worth Making: A Qualitative Study of How Swedes Respond to Antibiotic Resistance

    Part of Public Health Ethics, 2020.

    Open access
  • Niemiec, Emilia

    COVID-19 and misinformation: Is censorship of social media a remedy to the spread of medical misinformation?

    Part of EMBO Reports, 2020.

    Open access
  • Garbrielsson, Sebastian; Eriksson, Stefan; Godskesen, Tove

    Predatory nursing journals: A case study of author prevalence and characteristics

    Part of Nursing Ethics, 2020.

  • Ancillotti, Mirko; Eriksson, Stefan; Andersson, Dan I.; Godskesen, Tove et al.

    Preferences regarding antibiotic treatment and the role of antibiotic resistance: a discrete choice experiment

    Part of International Journal of Antimicrobial Agents, 2020.

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

    Spatiotemporal neuroscience – what is it and why we need it

    Part of Physics of Life Reviews, p. 78-87, 2020.

    Open access
  • Evers, Kathinka

    The Culture-Bound Brain: Epigenetic proaction revisited

    Part of Theoria, 2020.

    Open access
  • Veldwijk, Jorien; Viberg Johansson, Jennifer; Donkers, Bas; de Bekker-Grob, Esther W.

    Mimicking Real-Life Decision Making in Health: Allowing Respondents Time to Think in a Discrete Choice Experiment

    Part of Value in Health, p. 945-952, 2020.

  • Zillen, Kavot; Mattsson, Titti; Slokenberga, Santa

    Medicinsk rätt


  • Eklund, Hans; Lerwall, Lotta; Lind, Anna-Sara

    Vänbok till Sverker Scheutz: Om rätt och att undervisa rätt


  • Middleton, Anna; Milne, Richard; Almarri, Mohamed A; Anwer, Shamim et al.

    Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

    Part of American Journal of Human Genetics, p. 743-752, 2020.

    Open access
  • Dawson, Angus; Isaacs, David; Jansen, Menlanie; Jordens, Christopher et al.

    An Ethics Framework for Making Resource Allocation Decisions Within Clinical Care: Responding to COVID-19

    Part of Journal of Bioethical Inquiry, 2020.

  • Hultin Rosenberg, Jonas; Lind, Anna-Sara; Wejryd, Johan

    Allmän rösträtt 30 år?: En tvärvetenskaplig blick på rätten till politiskt inflytande för barn, funktionshindrade och mottagare av försörjningsstöd

    Part of Nordisk socialrättslig tidskrift, 2020.

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

    An overview of critical decision-points in the medical product lifecycle: Where to include patient preference information in the decision-making process?

    Part of Health Policy, p. 1325-1332, 2020.

    Open access
  • Bülow, William; Godskesen, Tove; Helgesson, Gert; Eriksson, Stefan

    Why unethical papers should be retracted

    Part of Journal of Medical Ethics, 2020.

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

    The ethics of DNR-decisions in oncology and hematology care: A qualitative study

    Part of BMC Medical Ethics, 2020.

    Open access
  • Salles, Arleen; Farisco, Michele

    Of Ethical Frameworks and Neuroethics in Big Neuroscience Projects: A View from the HBP

    Part of AJOB Neuroscience, p. 167-175, 2020.

    Open access
  • Aicardi, Christine; Akintoye, Simisola; Fothergill, B. Tyr; Guerrero, Manuel et al.

    Ethical and Social Aspectos of Neurorobotics

    Part of Science and Engineering Ethics, 2020.

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

    Towards Establishing Criteria for the Ethical Analysisof Artificial Intelligence

    Part of Science and Engineering Ethics, 2020.

    Open access
  • Grasenick, Karin; Guerrero, Manuel

    Responsible Research and Innovation & Digital Inclusiveness during Covid-19 Crisis in the Human Brain Project (HBP)

    Part of Journal of Responsible Technology, 2020.

    Open access
  • Kalokairinou, Louiza; Borry, Pascal; Howard, Heidi Carmen

    'It's much more grey than black and white': clinical geneticists' views on the oversight of consumer genomics in Europe

    Part of Personalized Medicine, p. 129-140, 2020.

  • Steindal, Simen A.; Nes, Andrea Aparecida Goncalves; Godskesen, Tove; Dihle, Alfhild et al.

    Patients' Experiences of Telehealth in Palliative Home Care: Scoping Review

    Part of Journal of Medical Internet Research, 2020.

    Open access
  • Raz, Aviad E.; Niemiec, Emilia; Howard, Heidi Carmen; Sterckx, Sigrid et al.

    Transparency, consent and trust in the use of customers' data by an online genetic testing company: an Exploratory survey among 23andMe users

    Part of New genetics and society (Print), 2020.

  • Engelbak Nielsen, Zandra; Eriksson, Stefan; Schram Harsløf, Laurine Bente; Petri, Suzanne et al.

    Are cancer patients better off if they participate in clinical trials?: A mixed methods study

    Part of BMC Cancer, 2020.

    Open access
  • Matar, Amal; Höglund, Anna T; Segerdahl, Pär; Kihlbom, Ulrik

    Autonomous decisions by couples in reproductive care

    Part of BMC Medical Ethics, 2020.

    Open access
  • Phillips, Amicia; Niemiec, Emilia; Howard, Heidi Carmen; Kagkelari, Kalliopi et al.

    Communicating genetic information to family members analysis of consent forms for diagnostic genomic sequencing.

    Part of European Journal of Human Genetics, 2020.

  • Niemiec, Emilia; Howard, Heidi Carmen

    Ethical issues related to research on genome editing in human embryos

    Part of Computational and Structural Biotechnology Journal, p. 887-896, 2020.

    Open access
  • Voigt, Torsten H; Holtz, Verena; Niemiec, Emilia; Howard, Heidi Carmen et al.

    Willingness to donate genomic and other medical data: results from Germany

    Part of European Journal of Human Genetics, p. 1000-1009, 2020.

    Open access
  • Höglund, Anna T.

    What shall we eat?: An ethical framework for well-grounded food choices

    Part of Journal of Agricultural and Environmental Ethics, p. 283-297, 2020.

    Open access
  • Falkenström, Erica; Höglund, Anna T.

    "There is total silence here": Ethical competence and inter-organizational learning in healthcare governance

    Part of Journal of Health Organisation & Management, p. 53-70, 2020.

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

    Anthropomorphism in AI

    Part of AJOB Neuroscience, p. 88-95, 2020.

    Open access
  • Pestoff, Rebecka; Svensson, Karin; Paneque, Milena; Ingvoldstad, Charlotta

    Developing a national certification pathway for genetic counselors in Sweden: a short report

    Part of Journal of Community Genetics, p. 113-117, 2020.

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.

Download our biobank and registry report

Biobank and registry ethics & law, report cover

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.

Download our Nursing ethics report

Nursing ethics & ethics of care cover

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. 

Download our Neuroethics report

Neuroethicxs & philosophy of the brain cover