Mats G. Hansson
Professor at Department of Public Health and Caring Sciences; Centre for Research Ethics & Bioethics (CRB)
- Telephone:
- +46 18 471 61 97
- Mobile phone:
- +46 76 341 20 50
- E-mail:
- mats.hansson@uu.se
- Visiting address:
- BMC, Box 564, Husargatan 3, Uppsala
- Postal address:
- Box 564
751 22 UPPSALA
Publications
Recent publications
Part of AI and Ethics, 2025
- DOI for “Code of ethical practice” for sharing and access to personal data for AI-/ ML-based technologies in rare diseases genetic NBS research project: a collaborative construction in a European IMI project
- Download full text (pdf) of “Code of ethical practice” for sharing and access to personal data for AI-/ ML-based technologies in rare diseases genetic NBS research project: a collaborative construction in a European IMI project
Part of Scandinavian Journal of Public Health, p. 1019-1025, 2024
Patient preferences in genetic newborn screening for rare diseases: study protocol
Part of BMJ Open, 2024
- DOI for Patient preferences in genetic newborn screening for rare diseases: study protocol
- Download full text (pdf) of Patient preferences in genetic newborn screening for rare diseases: study protocol
Part of BMC Rheumatology, 2023
- DOI for Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment
- Download full text (pdf) of Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment
A proposal for an international Code of Conduct for data sharing in genomics
Part of Developing World Bioethics, p. 344-357, 2023
- DOI for A proposal for an international Code of Conduct for data sharing in genomics
- Download full text (pdf) of A proposal for an international Code of Conduct for data sharing in genomics
All publications
Articles in journal
Part of AI and Ethics, 2025
- DOI for “Code of ethical practice” for sharing and access to personal data for AI-/ ML-based technologies in rare diseases genetic NBS research project: a collaborative construction in a European IMI project
- Download full text (pdf) of “Code of ethical practice” for sharing and access to personal data for AI-/ ML-based technologies in rare diseases genetic NBS research project: a collaborative construction in a European IMI project
Part of Scandinavian Journal of Public Health, p. 1019-1025, 2024
Patient preferences in genetic newborn screening for rare diseases: study protocol
Part of BMJ Open, 2024
- DOI for Patient preferences in genetic newborn screening for rare diseases: study protocol
- Download full text (pdf) of Patient preferences in genetic newborn screening for rare diseases: study protocol
Part of BMC Rheumatology, 2023
- DOI for Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment
- Download full text (pdf) of Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment
A proposal for an international Code of Conduct for data sharing in genomics
Part of Developing World Bioethics, p. 344-357, 2023
- DOI for A proposal for an international Code of Conduct for data sharing in genomics
- Download full text (pdf) of A proposal for an international Code of Conduct for data sharing in genomics
Part of PLOS ONE, 2023
- DOI for Genetic newborn screening and digital technologies: A project protocol based on a dual approach to shorten the rare diseases diagnostic path in Europe
- Download full text (pdf) of Genetic newborn screening and digital technologies: A project protocol based on a dual approach to shorten the rare diseases diagnostic path in Europe
Part of BMC Medical Ethics, 2023
- DOI for Patients accept therapy using embryonic stem cells for Parkinson's disease: a discrete choice experiment
- Download full text (pdf) of Patients accept therapy using embryonic stem cells for Parkinson's disease: a discrete choice experiment
Part of Human Mutation, p. 717-733, 2022
- DOI for The RD-Connect Genome-Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases
- Download full text (pdf) of The RD-Connect Genome-Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases
Part of BMC Medical Ethics, 2022
- DOI for Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment
- Download full text (pdf) of Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment
Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study
Part of BMC Medical Ethics, 2022
- DOI for Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study
- Download full text (pdf) of Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study
Part of BMC Medical Ethics, 2022
- DOI for Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in Sweden
- Download full text (pdf) of Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in Sweden
Part of Patient Related Outcome Measures, p. 649-660, 2021
- DOI for Communicating test results from a general health checkup: the public’s preferences from a discrete choice experiment survey
- Download full text (pdf) of Communicating test results from a general health checkup: the public’s preferences from a discrete choice experiment survey
Part of Patient Education and Counseling, p. 2577-2585, 2021
Part of European Journal of Cardiovascular Nursing, p. 676-683, 2021
- DOI for Good general health and lack of family history influence the underestimation of cardiovascular risk: A cross sectional study
- Download full text (pdf) of Good general health and lack of family history influence the underestimation of cardiovascular risk: A cross sectional study
Part of Arthritis Research & Therapy, 2020
- DOI for Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients
- Download full text (pdf) of Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients
Part of Läkartidningen, 2020
Pretend Play as an Intervention for Children With Cancer: A Feasibility Study
Part of Journal of Pediatric Oncology Nursing, p. 65-75, 2020
Part of Genetics in Medicine, p. 2381-2389, 2019
Part of BMC Medical Ethics, 2019
- DOI for Values and value conflicts in implementation and use of preconception expanded carrier screening: an expert interview study
- Download full text (pdf) of Values and value conflicts in implementation and use of preconception expanded carrier screening: an expert interview study
Part of JOURNAL OF NEUROMUSCULAR DISEASES, p. 161-172, 2019
Part of Patient Education and Counseling, p. 1528-1534, 2019
- DOI for Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment
- Download full text (pdf) of Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment
Short-term mental distress in research participants after receiving cardiovascular risk information
Part of PLOS ONE, 2019
- DOI for Short-term mental distress in research participants after receiving cardiovascular risk information
- Download full text (pdf) of Short-term mental distress in research participants after receiving cardiovascular risk information
Part of Patient, p. 297-305, 2019
- DOI for Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis
- Download full text (pdf) of Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis
Part of Journal of Community Genetics, p. 267-280, 2019
- DOI for "A perfect society": Swedish policymakers' ethical and social views on preconception expanded carrier screening
- Download full text (pdf) of "A perfect society": Swedish policymakers' ethical and social views on preconception expanded carrier screening
Part of BMC Rheumatology, 2018
- DOI for Perceptions of first-degree relatives of patients with rheumatoid arthritis about lifestyle modifications and pharmacological interventions to reduce the risk of rheumatoid arthritis development: a qualitative interview study
- Download full text (pdf) of Perceptions of first-degree relatives of patients with rheumatoid arthritis about lifestyle modifications and pharmacological interventions to reduce the risk of rheumatoid arthritis development: a qualitative interview study
Part of Patient Education and Counseling, p. 422-427, 2018
Genetics and risk - an exploration of conceptual approaches to genetic risk
Part of Journal of Risk Research, p. 101-108, 2018
Part of Journal of Risk Research, p. 167-189, 2018
Part of Patient, p. 263-266, 2017
- DOI for Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project
- Download full text (pdf) of Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project
Part of Arthritis care & research, p. 1558-1565, 2017
Genetics and risk – an exploration of conceptual approaches to genetic risk
Part of Journal of Risk Research, p. 101-108, 2017
Part of Patient, p. 263-266, 2017
Part of Value in Health, 2017
Part of Journal of Medical Genetics, p. 798-799, 2016
Part of BMJ Open, 2016
- DOI for 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
- Download full text (pdf) of 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
The risk of re-identification versus the need to identify individuals in rare disease research
Part of European Journal of Human Genetics, p. 1553-1558, 2016
Part of Public Health Genomics, p. 307-313, 2016
Freedom of Choice about Incidental Findings can frustrate participants’ true preferences
Part of Bioethics, p. 203-209, 2016
Ethics rounds: An appreciated form of ethics support
Part of Nursing Ethics, p. 203-213, 2016
Part of Public Health Genomics, p. 307-313, 2016
The risk of re-identification versus the need to identify individuals in rare disease research
Part of European Journal of Human Genetics, p. 1553-1558, 2016
- DOI for The risk of re-identification versus the need to identify individuals in rare disease research
- Download full text (pdf) of The risk of re-identification versus the need to identify individuals in rare disease research
Part of Rheumatology, p. 110-110, 2015
Broad Consent for Research With Biological Samples: Workshop Conclusions
Part of American Journal of Bioethics, p. 34-42, 2015
Part of European Journal of Cancer Care, p. 133-141, 2015
The Swedish CArdioPulmonary BioImage Study: objectives and design
Part of Journal of Internal Medicine, p. 645-659, 2015
- DOI for The Swedish CArdioPulmonary BioImage Study: objectives and design
- Download full text (pdf) of The Swedish CArdioPulmonary BioImage Study: objectives and design
Ethics rounds do not improve the handling of ethical issues by psychiatric staff
Part of Nordic Journal of Psychiatry, p. 1700-1707, 2015
Part of Tissue Antigens, p. 372-372, 2015
International Charter of principles for sharing bio-specimens and data
Part of European Journal of Human Genetics, p. 721-728, 2015
- DOI for International Charter of principles for sharing bio-specimens and data
- Download full text (pdf) of International Charter of principles for sharing bio-specimens and data
Öppenheten förstör chansen till patent
Part of Svenska dagbladet, 2015
Incidental findings: the time is not yet ripe for a policy for biobanks
Part of European Journal of Human Genetics, p. 437-441, 2014
ERIC: a new governance tool for Biobanking
Part of European Journal of Human Genetics, p. 1055-1057, 2014
Why participating in (certain) scientific research is a moral duty
Part of Journal of Medical Ethics, p. 325-328, 2014
Ethical Review Boards are poor advocates for patient perspectives
Part of Research Ethics, p. 169-181, 2014
Making researchers moral: Why trustworthiness requires more than ethics guidelines and review
Part of Research Ethics, p. 29-46, 2014
- DOI for Making researchers moral: Why trustworthiness requires more than ethics guidelines and review
- Download full text (pdf) of Making researchers moral: Why trustworthiness requires more than ethics guidelines and review
Children's Views on Long-Term Screening for Type 1 Diabetes
Part of Journal of Empirical Research on Human Research Ethics, p. 1-9, 2014
Rare diseases and now rare data?
Part of Nature reviews genetics, p. 372, 2013
Doping and The Participatory Responsibility of Sports Physicians
2013
Part of Supportive Care in Cancer, p. 3137-3142, 2013
Transition to noncurative end-of-life care in paediatric oncology: a nationwide follow-up in Sweden
Part of Acta Paediatrica, p. 744-748, 2013
Part of Physical Culture and Sport. Studies and Research, p. 21-32, 2013
Finding ways to improve the use of biobanks
Part of Nature Medicine, p. 815-815, 2013
Patients would benefit from simplified ethical review and consent procedure
Part of The Lancet Oncology, p. 451-453, 2013
Rare diseases and now rare data?
Part of Nature reviews genetics, p. 372-372, 2013
International guidelines on biobank research leave researchers in ambiguity: why is this so?
Part of European Journal of Epidemiology, p. 449-451, 2013
Part of Bioethics, p. 485-492, 2013
Part of Theoretical Medicine and Bioethics, p. 313-323, 2012
Part of Cancer Epidemiology, p. 575-578, 2012
Part of Biopreservation and Biobanking, p. 45-47, 2012
Part of Archives of Disease in Childhood, p. 561-563, 2012
Biobanks: Validate gene findings before telling donors
Part of Nature, p. 455-455, 2012
Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport
Part of Sport, Ethics and Philosophy, p. 467-479, 2012
Biobank Research and Consent: Authors' reply to Sheehan
Part of The BMJ, 2011
Biobank research: who benefits from individual consent?
Part of The BMJ, 2011
Biobanking Within the European Regulatory Framework: Opportunities and Obstacles
Part of Biopreservation and Biobanking, p. 165-167, 2011
Is medical ethics doing its job?: Introduction
Part of Journal of Internal Medicine, p. 366-369, 2011
The Risks and Benefits of Re-Consent
Part of Science, p. 306-306, 2011
Part of Journal of Empirical Research on Human Research Ethics, p. 68-75, 2011
Gene Doping and the Responsibility of Bioethicists
Part of Sport, Ethics and Philosophy, p. 149-160, 2011
In search of the missing subject: narrative identity and posthumous wronging
Part of Studies in History and Philosophy of Science Part C, p. 340-346, 2010
Hypothetical and factual willingness to participate in biobank research
Part of European Journal of Human Genetics, p. 1261-1264, 2010
- DOI for Hypothetical and factual willingness to participate in biobank research
- Download full text (pdf) of Hypothetical and factual willingness to participate in biobank research
Changing defaults in biobank research could save lives too
Part of European Journal of Epidemiology, p. 65-68, 2010
Part of Medicine, Health care and Philosophy, p. 169-175, 2010
Taking the patient's side: the ethics of pharmacogenetics
Part of Personalized Medicine, p. 75-85, 2010
Ulysses contracts for the doctor and for the patient
Part of Contemporary Clinical Trials, p. 202-206, 2010
Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence
Part of Public Health Ethics, p. 30-36, 2009
Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial
Part of Pediatric Diabetes, p. 408-412, 2009
Concern for privacy in relation to age during physical examination of children: an exploratory study
Part of Acta Paediatrica, p. 1349-1354, 2009
Part of Acta Obstetricia et Gynecologica Scandinavica, p. 1128-1132, 2009
Part of European Journal of Human Genetics, p. 1544-1549, 2009
Biobanks: questioning distinctions
Part of Science, p. 797-797, 2009
Part of Journal of Medical Ethics, p. 450-455, 2009
Part of Clinical Ethics, p. 69-74, 2008
Part of BMJ. British Medical Journal, 2008
Opt-out from biobanks better respects patients' autonomy
Part of BMJ. British Medical Journal, 2008
Ethics takes time, but not that long
Part of BMC Medical Ethics, p. 1-7, 2007
Can the Dead be Brought into Disrepute?
Part of Theoretical Medicine and Bioethics, p. 137-149, 2007
Queen Christina's moral claim on the living: Justification of a tenacious moral intuition
Part of Medicine, Health care and Philosophy, p. 321-327, 2007
Developing ethical competence in health care organizations
Part of Nursing Ethics, p. 825-837, 2007
Ethical framework for previously collected biobank samples
Part of Nature Biotechnology, p. 973-976, 2007
For the safety and benefit of current and future patients
Part of Pathobiology (Basel), p. 198-205, 2007
Part of Journal of Genetic Counseling, p. 105-117, 2007
Part of Scandinavian Journal of Public Health, p. 148-156, 2007
Commentary: Isolated Stem Cells - Patentable as Cultural Artifacts?
Part of Stem Cells, p. 1507-1510, 2007
Part of European Journal of Public Health, p. 433-440, 2006
Parents' perspectives on research involving children.
Part of Ups J Med Sci, p. 73-86, 2006
Combining efficiency and concerns about integrity when using human biobanks.
Part of Stud Hist Philos Biol Biomed Sci, p. 520-32, 2006
Should donors be allowed to give broad consent to future biobank research?
Part of Lancet Oncol, p. 266-9, 2006
”We are white coats whirling round”: moral distress in Swedish pharmacies
Part of Pharmacy World & Science, p. 223-229, 2005
Science and society: International perspectives on engaging the public in neuroethics.
Part of Nat Rev Neurosci, p. 977-82, 2005
Building on relationships of trust in biobank research.
Part of J Med Ethics, p. 415-8, 2005
Quality of life in patients with multiple endocrine neoplasia type 1 (MEN 1).
Part of Fam Cancer, p. 27-33, 2003
Part of Journal of Medical Genetics, p. 689-694, 2002
Vilket värde har våra värderingar kring genteknik?
Part of Kungl. Skogs- och Lantbruksakademiens Tidskrift, p. 31-35, 2002
Ethical management of hereditary cancer information.
Part of Acta Oncol, p. 305-8, 1999
Introduction to discussion on ethical matters
Part of Acta Agriculture Scandinavica, p. 62-66, 1998
Articles, review/survey
The case for open science: rare diseases
Part of JAMIA Open, p. 472-486, 2020
- DOI for The case for open science: rare diseases
- Download full text (pdf) of The case for open science: rare diseases
From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health.
Part of Progress in Molecular Biology and Translational Science, p. 299-323, 2018
Part of Journal of general internal medicine, 2014
Part of Journal of general internal medicine, 2014
Part of Critical reviews in oncology/hematology, p. 187-197, 2013
Part of British Journal of Cancer, p. 8-12, 2009
Books
Makadam Förlag, 2019
The Private Sphere: An Emotional Territory and Its Agent
Springer Science + Business Media B.V., 2008
The Use of Human Biobanks: Ethical, Social, Economical and Legal Aspects
Uppsala University, 2001
Chapters in book
Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
Part of Ethics, Law and Governance of Biobanking, Springer, 2015
Part of Information and Law in Transition, p. 325-338, Liber, 2015
Part of PGD and Embryo Selection, p. 82-92, The Nordic Committee on Bioethics, Copenhagen 2006, 2006
Biobanks as Resources for Health
Part of Biobanks as Resources for Health, p. 9-20, Uppsala universitet, 2003
Part of Annales. Acadmiae Regiae Scientiarum Upsaliensis 35, p. 57-65, 2003
In the interests of efficiency and integrity
Part of The Use of Human Biobanks, p. 35-40, Uppsala University, 2001
Collections (editor)
Biobanks as resources for health
Uppsala University, 2003
Forskningsrådsnämnden, Stockholm, 1999
GENOM-gruppen c/o Medicinska forskningsrådet, Stockholm, 1994
Conference papers
Other
Research Data Inquiry investigating national exceptions under the General Data Protection Regulation
2016
Part of European Journal of Human Genetics, p. 1835-1835, 2016
Swedish biotechnology and bioethics go hand in hand
2002