Recent publications

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

    Vänbok till Sverker Scheutz: Om rätt och att undervisa rätt

    2020.

    To DiVA

  • 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, 2020.

    DOI To DiVA

  • 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.

    DOI To DiVA

  • 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.

    To DiVA

  • 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, 2020.

    DOI To DiVA

    Open access

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

    Why unethical papers should be retracted

    Part of Journal of Medical Ethics, 2020.

    DOI To DiVA

  • 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.

    DOI To DiVA

  • 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.

    DOI Uploaded full-text (pdf) Uploaded full-text (pdf) To DiVA

    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.

    DOI Uploaded full-text To DiVA

    Open access

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

    Towards Establishing Criteria for the Ethical Analysisof Artificial Intelligence

    Part of Science and Engineering Ethics, 2020.

    DOI Uploaded full-text To DiVA

    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.

    DOI Uploaded full-text To DiVA

    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.

    DOI To DiVA

  • 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.

    DOI Uploaded full-text To DiVA

    Open access

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

    Autonomous decisions by couples in reproductive care

    Part of BMC Medical Ethics, 2020.

    DOI To DiVA

    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.

    DOI To DiVA

  • 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.

    DOI Uploaded full-text To DiVA

    Open access

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

    Autonomous decisions by couples in reproductive care

    Part of BMC Medical Ethics, 2020.

    DOI Uploaded full-text To DiVA

    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.

    DOI To DiVA

  • 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.

    DOI Uploaded full-text To DiVA

    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, 2020.

    DOI Uploaded full-text To DiVA

    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.

    DOI Uploaded full-text To DiVA

    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.

    DOI To DiVA

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

    Anthropomorphism in AI

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

    DOI Uploaded full-text To DiVA

    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.

    DOI To DiVA

  • Niemiec, Emilia; Howard, Heidi Carmen

    Germline Genome Editing Research: What Are Gamete Donors (Not) Informed About in Consent Forms?

    Part of The CRISPR Journal, p. 52-63, 2020.

    DOI Uploaded full-text To DiVA

    Open access

  • Middleton, Anna; Milne, Richard; Howard, Heidi; Niemiec, Emilia et al.

    Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

    Part of European Journal of Human Genetics, p. 424-434, 2020.

    DOI Uploaded full-text To DiVA

    Open access

  • Dal-Ré, Rafael; Solberg, Berge; Fuhr, Uwe; Eriksson, Stefan

    Reporting the details of consent procedures in clinical trials

    Part of Journal of Clinical Epidemiology, p. 150-151, 2020.

    DOI To DiVA

  • Niemiec, Emilia; Howard, Heidi Carmen

    "Genethics" and Public Health Genomics

    Part of Applied Genomics and Public Health, p. 243-257, 2020.

    DOI To DiVA

  • 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. 104-115, 2020.

    DOI To DiVA

  • Kihlbom, Ulrik; Munthe, Christian

    Healthcare Decisions

    Part of What About the Family?, 2019.

    DOI To DiVA

  • Höglund, Anna T

    Vad ska vi äta?: Om mat och etik

    Appell förlag, 2019.

    To DiVA

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

    Attitudes and experiences of European clinical geneticists towards direct-to-consumer genetic testing: a qualitative interview study

    Part of New genetics and society (Print), p. 410-429, 2019.

    DOI To DiVA

  • Motta, Benedetta M.; Grander, Christoph; Gogele, Martin; Foco, Luisa et al.

    Microbiota, type 2 diabetes and non-alcoholic fatty liver disease: protocol of an observational study

    Part of Journal of Translational Medicine, 2019.

    DOI Uploaded full-text To DiVA

    Open access

  • Nihlén Fahlquist, Jessica

    Public Health and the Virtues of Responsibility, Compassion and Humility

    Part of Public Health Ethics, p. 213-224, 2019.

    DOI To DiVA

  • Fernow, Josepine

    Achieving impact: some arguments for designing a communications strategy

    Part of RRI implementation in bioscience organisations, p. 177-180, 2019.

    To DiVA

    Open access

  • Declich, Andrea

    RRI implementation in bioscience organisations: Guidelines from the STARBIOS2 project

    2019.

    Uploaded full-text To DiVA

    Open access

  • Whichello, Chiara; Levitan, Bennett; Juaheri, Juaheri; Kihlbom, Ulrik et al.

    PATIENT PREFERENCES IN THE MEDICAL PRODUCT LIFECYCLE: INITIAL RESULTS FROM THE IMI PREFER PUBLIC-PRIVATE PROJECT

    Part of Value in Health, 2019.

    DOI To DiVA

  • Hansson, Mats G.; Holm, Anna; Segerdahl, Pär

    MIND THE RISK · DEN GENETISKA RISKINFORMATIONENS ETIK FÖR INDIVID OCH SAMHÄLLE: SLUTRAPPORT FRÅN ETT FORSKNINGSPROGRAM

    Makadam Förlag, 2019.

    To DiVA

    Open access

  • Godskesen, Tove

    The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views

    Part of Clinical Ethics, 2019.

    DOI Uploaded full-text To DiVA

    Open access

  • Frygner-Holm, Sara; Russ, Sandra; Quitmann, Julia; Ring, Lena et al.

    Pretend Play as an Intervention for Children With Cancer: A Feasibility Study

    Part of Journal of Pediatric Oncology Nursing, p. 65-75, 2019.

    DOI To DiVA

  • Fellmann, Florence; van El, Carla G.; Charron, Philippe; Michaud, Katarzyna et al.

    European recommendations integrating genetic testing into multidisciplinary management of sudden cardiac death

    Part of European Journal of Human Genetics, p. 1763-1773, 2019.

    DOI Uploaded full-text To DiVA

    Open access

  • van Overbeeke, Eline; Janssens, Rosanne; Whichello, Chiara; Schölin Bywall, Karin et al.

    Design, Conduct, and Use of Patient Preference Studies in the Medical Product Life Cycle: A Multi-Method Study

    Part of Frontiers in Pharmacology, 2019.

    DOI Uploaded full-text To DiVA

    Open access

  • Niemiec, Emilia; Howard, Heidi Carmen

    Include egg donors in CRISPR gene-editing debate

    Part of Nature, p. 51-51, 2019.

    DOI To DiVA

  • Goisauf, Melanie; Martin, Gillian; Bentzen, Heidi Beate; Budin-Ljösne, Isabelle et al.

    Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research

    Part of PLoS ONE, 2019.

    DOI Uploaded full-text To DiVA

    Open access

  • Molema, Claudia; Veldwijk, Jorien; Wendel-Vos, Wanda; de Wit, Ardine et al.

    Chronically ill patients' preferences for a financial incentive in a lifestyle intervention. Results of a discrete choice experiment

    Part of PLoS ONE, 2019.

    DOI Uploaded full-text To DiVA

    Open access

  • Northoff, Georg; Tumati, Shankar

    "Average is good, extremes are bad" - Non-linear inverted U-shaped relationship between neural mechanisms and functionality of mental features

    Part of Neuroscience and Biobehavioral Reviews, p. 11-25, 2019.

    DOI Uploaded full-text To DiVA

    Open access

  • Ormond, Kelly E.; Bombard, Yvonne; Bonham, Vence L.; Hoffman-Andrews, Lily et al.

    The clinical application of gene editing: ethical and social issues

    Part of Personalized Medicine, p. 337-350, 2019.

    DOI To DiVA

  • Whichello, Chiara; van Overbeeke, Eline; Janssens, Rosanne; Schölin Bywall, Karin et al.

    Factors and Situations Affecting the Value of Patient Preference Studies: Semi-Structured Interviews in Europe and the US

    Part of Frontiers in Pharmacology, 2019.

    DOI Uploaded full-text To DiVA

    Open access

  • Milne, Richard; Morley, Katherine I.; Howard, Heidi; Niemiec, Emilia et al.

    Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia

    Part of Human Genetics, p. 1237-1246, 2019.

    DOI Uploaded full-text To DiVA

    Open access

  • Kaminsky, Elenor; Höglund, Anna T

    Swedish Healthcare Direct managers' views on gender (in)equity - Applying a conceptual model

    Part of International Journal for Equity in Health, 2019.

    DOI Uploaded full-text To DiVA

    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.

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
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