This is a list of our most recent publications.
- Law Without State . (2016).
Content Analysis of Informed Consent for Whole Genome Sequencing Offered by Direct-to-Consumer Genetic Testing Companies.Human Mutation, 37(12): 1248-1256 DOI
BiobankCloud: A Platform for the Secure Storage, Sharing, and Processing of Large Biomedical Data Sets.I BIOMEDICAL DATA MANAGEMENT AND GRAPH ONLINE QUERYING, 89-105 DOI
- EMBO Reports, 17(10): 1361-1364 DOI (2016).
- European Journal of Human Genetics, 24(11): 1553-1558 DOI Download fulltext (2016).
- Tilburg Law Review, 21(2): 169-192 DOI (2016).
Let the Individuals Directly Concerned Decide: A Solution to Tragic Choices in Genetic Risk Information.Public Health Genomics, 19(5): 307-313 DOI
- American Journal of Bioethics, 7(1): 28-30 (2016).
- Dialogues in Clinical Neuroscience, 18(2): 155-162 (2016).
Proactive epigenesis and ethical innovation: A neuronal hypothesis for the genesis of ethical rules.EMBO Reports, 17(10): 1361-1364
- Nature Reviews Neuroscience, 18(1): 1-2 DOI (2016).
- Acta Paediatrica, 105(9): 1094-1099 DOI (2016).
- International Journal for Equity in Health, . 15(152) DOI (2016).
- Upsala Journal of Medical Sciences, . 121(4): 289-294 DOI Download fulltext (2016).
- Upsala Journal of Medical Sciences, . 121(4): 295-298 DOI (2016).
Perceptions of risk and predictive testing held by the first-degree relatives of patients with rheumatoid arthritis in England, Austria and Germany: a qualitative study.BMJ Open, 6(6) DOI Download fulltext
- 2016 IST-Africa Week Conference,11-13 May 2016 DOI (2016).
Physicians’ experiences of do-not-resuscitate (DNR) orders in hematology and oncology care – a qualitative study.Journal of Palliative Care & Medicine DOI
Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families.Journal of Pediatric Oncology Nursing, 33(4): 297-305 DOI
- BMC Medical Ethics, 17 DOI Download fulltext (2016).
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.
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.
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.