Mats G. Hansson

What is at stake in genetic newborn screening for rare diseases? An exploratory qualitative study of parents’ and expectant parents’ concerns in the Screen4Care project

Martin, Sylvia; Grauman, Åsa; Coulter, Joshua; Hansson, Mats G. et al.

Part of Public Health Genomics, p. 242-256, 2026

• DOI for What is at stake in genetic newborn screening for rare diseases? An exploratory qualitative study of parents’ and expectant parents’ concerns in the Screen4Care project
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Patients' and Providers' Attitudes Toward Artificial Intelligence and Electronic Health Record Use in Deep Phenotyping and Rare-Disease Screening: An Empty Systematic Review

Martin, Sylvia; Grauman, Åsa; Coulter, Joshua; Hasan, Besir et al.

Part of Healthcare, 2026

• DOI for Patients' and Providers' Attitudes Toward Artificial Intelligence and Electronic Health Record Use in Deep Phenotyping and Rare-Disease Screening: An Empty Systematic Review
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Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

Martin, Sylvia; Kyosovska-Peshtenska, Gergana; Audi, Jennifer; Zarakowska, Kaja et al.

Part of Orphanet Journal of Rare Diseases, 2026

• DOI for Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022
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Setting up mother–infant pair lactation studies with biobanking for research according to regulatory requirements

Hansson, Mats G.; Björkgren, Ida; Svedenkrans, Jenny; Backman, Helena et al.

Part of British Journal of Clinical Pharmacology, 2025

• DOI for Setting up mother–infant pair lactation studies with biobanking for research according to regulatory requirements

“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

Martin, Sylvia; Piperkova, Aneta; Zschüntzsch, Jana; Sky, Edith Gross et al.

Part of AI and Ethics, p. 4843-4853, 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
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What is at stake in genetic newborn screening for rare diseases? An exploratory qualitative study of parents’ and expectant parents’ concerns in the Screen4Care project

Martin, Sylvia; Grauman, Åsa; Coulter, Joshua; Hansson, Mats G. et al.

Part of Public Health Genomics, p. 242-256, 2026

• DOI for What is at stake in genetic newborn screening for rare diseases? An exploratory qualitative study of parents’ and expectant parents’ concerns in the Screen4Care project
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Setting up mother–infant pair lactation studies with biobanking for research according to regulatory requirements

Hansson, Mats G.; Björkgren, Ida; Svedenkrans, Jenny; Backman, Helena et al.

Part of British Journal of Clinical Pharmacology, 2025

• DOI for Setting up mother–infant pair lactation studies with biobanking for research according to regulatory requirements

“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

Martin, Sylvia; Piperkova, Aneta; Zschüntzsch, Jana; Sky, Edith Gross et al.

Part of AI and Ethics, p. 4843-4853, 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
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Determination of prednisolone concentration in human breast milk and plasma of breastfed infants: study protocol of a Swedish multicentre low-intervention clinical trial

Svedenkrans, Jenny; Hellgren, Karin; Backlund, Karin; Perrin, Nina et al.

Part of BMJ Open, 2025

• DOI for Determination of prednisolone concentration in human breast milk and plasma of breastfed infants: study protocol of a Swedish multicentre low-intervention clinical trial

“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

Martin, Sylvia; Piperkova, Aneta; Zschüntzsch, Jana; Sky, Edith Gross et al.

Part of AI and Ethics, p. 4843-4853, 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

Determination of prednisolone concentration in human breast milk and plasma of breastfed infants: study protocol of a Swedish multicentre low-intervention clinical trial

Svedenkrans, Jenny; Hellgren, Karin; Backlund, Karin; Perrin, Nina et al.

Part of BMJ Open, 2025

• DOI for Determination of prednisolone concentration in human breast milk and plasma of breastfed infants: study protocol of a Swedish multicentre low-intervention clinical trial
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Patient preferences in genetic newborn screening for rare diseases: study protocol

MARTIN, Sylvia; Angolini, Emanuele; Audi, Jennifer; Bertini, Enrico et al.

Part of BMJ Open, 2024

• DOI for Patient preferences in genetic newborn screening for rare diseases: study protocol

Legal obstacles jeopardise research in personalised medicine – experiences from a Nordic collaboration within rheumatology

Glintborg, Bente; Hansson, Mats G.; Hammer, Hilde Berner; Klareskog, Lars et al.

Part of Scandinavian Journal of Public Health, p. 1019-1025, 2024

• DOI for Legal obstacles jeopardise research in personalised medicine – experiences from a Nordic collaboration within rheumatology

Legal obstacles jeopardise research in personalised medicine - experiences from a Nordic collaboration within rheumatology

Glintborg, Bente; Hansson, Mats G.; Hammer, Hilde Berner; Klareskog, Lars et al.

Part of Scandinavian Journal of Public Health, p. 1019-1025, 2024

• DOI for Legal obstacles jeopardise research in personalised medicine - experiences from a Nordic collaboration within rheumatology

Patient preferences in genetic newborn screening for rare diseases: study protocol

Martin, Sylvia; Angolini, Emanuele; Audi, Jennifer; Bertini, Enrico et al.

Part of BMJ Open, 2024

• DOI for Patient preferences in genetic newborn screening for rare diseases: study protocol
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Patients accept therapy using embryonic stem cells for Parkinson's disease: a discrete choice experiment

Schölin Bywall, Karin; Drevin, Jennifer; Groothuis-Oudshoorn, Catharina; Veldwijk, Jorien et al.

Part of BMC Medical Ethics, 2023

• DOI for Patients accept therapy using embryonic stem cells for Parkinson's disease: a discrete choice experiment
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Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment

Bywall, Karin Schölin; Drevin, Jennifer; Groothuis-Oudshoorn, Catharina; Veldwijk, Jorien et al.

Part of BMC Medical Ethics, 2023

• DOI for Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment

Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment

Bywall, Karin Schölin; Drevin, Jennifer; Groothuis-Oudshoorn, Catharina; Veldwijk, Jorien et al.

Part of BMC Medical Ethics, 2023

• DOI for Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment

Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment

Schölin Bywall, Karin; Esbensen, Bente Appel; Heidenvall, Marie; Erlandsson, Inger et al.

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
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Genetic newborn screening and digital technologies: A project protocol based on a dual approach to shorten the rare diseases diagnostic path in Europe

Garnier, Nicolas; Berghout, Joanne; Zygmunt, Aldona; Singh, Deependra et al.

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
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A proposal for an international Code of Conduct for data sharing in genomics

Matar, Amal; Hansson, Mats; Slokenberga, Santa; Panagiotopoulos, Adam et al.

Part of Developing World Bioethics, p. 344-357, 2023

• DOI for A proposal for an international Code of Conduct for data sharing in genomics
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The RD-Connect Genome-Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases

Laurie, Steven; Piscia, Davide; Matalonga, Leslie; Corvo, Alberto et al.

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
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The RD‐Connect Genome‐Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases

Laurie, Steven; Piscia, Davide; Matalonga, Leslie; Corvo, Alberto et al.

Part of Human Mutation, 2022

• DOI for The RD‐Connect Genome‐Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases

Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study

Drevin, Jennifer; Nyholm, Dag; Widner, Håkan; Van Vliet, Trinette et al.

Part of BMC Medical Ethics, 2022

• DOI for Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study
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Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment

Grauman, Åsa; Hansson, Mats G.; Nyholm, Dag; Jiltsova, Elena et al.

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
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Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in Sweden

Schölin Bywall, Karin; Holte, Jan; Brodin, Thomas; Hansson, Mats G. et al.

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
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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

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

Part of Patient Education and Counseling, p. 2577-2585, 2021

• DOI for 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

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.

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

Part of Patient Education and Counseling, p. 2577-2585, 2021

• DOI for 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.

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

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

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
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Good general health and lack of family history influence the underestimation of cardiovascular risk: A cross sectional study

Grauman, Åsa; Veldwijk, Jorien; James, Stefan; Hansson, Mats G. et al.

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

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

Part of Arthritis Research & Therapy, 2020

• DOI for Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients
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Swepis har lett till överilade ändringar i förlossningsrutiner: [SWEPIS has led to rash changes in routines within Swedish obstetric care]

Drevin, Jennifer; Hansson, Mats

Part of Läkartidningen, 2020

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

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

Part of Journal of Pediatric Oncology Nursing, p. 65-75, 2020

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

Research participants' preferences for receiving genetic risk information: a discrete choice experiment

Viberg, Jennifer; Langenskiöld, Sophie; Segerdahl, Pär; Hansson, Mats G. et al.

Part of Genetics in Medicine, p. 2381-2389, 2019

• DOI for Research participants' preferences for receiving genetic risk information: a discrete choice experiment

Values and value conflicts in implementation and use of preconception expanded carrier screening: an expert interview study

Matar, Amal; Hansson, Mats G.; Höglund, Anna T

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
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The Position of Neuromuscular Patients in Shared Decision Making. Report from the 235th ENMC Workshop: Milan, Italy, January 19-20, 2018

Lochmueller, Hanns; Ambrosini, Anna; van Engelen, Baziel; Hansson, Mats G. et al.

Part of JOURNAL OF NEUROMUSCULAR DISEASES, p. 161-172, 2019

• DOI for The Position of Neuromuscular Patients in Shared Decision Making. Report from the 235th ENMC Workshop: Milan, Italy, January 19-20, 2018

Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment

Grauman, Åsa; Hansson, Mats G.; James, Stefan K; Veldwijk, Jorien et al.

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
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Short-term mental distress in research participants after receiving cardiovascular risk information

Grauman, Åsa; Hansson, Mats G.; Puranen, Arvid; James, Stefan et al.

Part of PLOS ONE, 2019

• DOI for Short-term mental distress in research participants after receiving cardiovascular risk information
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Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis

Schölin Bywall, Karin; Veldwijk, Jorien; Hansson, Mats G.; Kihlbom, Ulrik

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
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"A perfect society": Swedish policymakers' ethical and social views on preconception expanded carrier screening

Matar, Amal; Hansson, Mats G.; Höglund, Anna T.

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

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

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

• DOI for Genetics and risk - an exploration of conceptual approaches to genetic risk

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

Simons, Gwenda; Stack, Rebecca J.; Stoffer-Marx, Michaela; Englbrecht, Matthias et al.

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

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

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

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

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

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

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

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

Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project

de Bekker-Grob, Esther; Berlin, Conny; Levitan, Bennet; Raza, Karim et al.

Part of Patient, p. 263-266, 2017

• DOI for Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project

Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation

Falahee, Marie; Simons, Gwenda; Buckley, Christopher D.; Hansson, M G et al.

Part of Arthritis care & research, p. 1558-1565, 2017

• DOI for Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation

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

Hansson, Mats G.; Bouder, Frederic; Howard, Heidi C.

Part of Journal of Risk Research, p. 101-108, 2017

• DOI for Genetics and risk – an exploration of conceptual approaches to genetic risk

Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project

de Bekker-Grob, Esther W.; Berlin, Conny; Levitan, Bennett; Raza, Karim et al.

Part of Patient, p. 263-266, 2017

• DOI for Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project

Rheumatoid Arthritis Patients’ Perspectives On The Value Of Patient Preferences In Regulatory Decision-Making During Drug Development: A Qualitative Study

Schölin Bywall, Karin; Veldwijk, Jorien; Hansson, Mats G.; Kihlbom, Ulrik

Part of Value in Health, 2017

• DOI for Rheumatoid Arthritis Patients’ Perspectives On The Value Of Patient Preferences In Regulatory Decision-Making During Drug Development: A Qualitative Study

Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?

Oliveri, Serena; Howard, Heidi C.; Renzi, Chiara; Hansson, Mats G. et al.

Part of Journal of Medical Genetics, p. 798-799, 2016

• DOI for Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?

The risk of re-identification versus the need to identify individuals in rare disease research

Hansson, Mats G.; Lochmuller, Hanns; Riess, Olaf; Schaefer, Franz et al.

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
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Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?

Oliveri, S.; Howard, Heidi Carmen; Renzi, C.; Hansson, Mats G. et al.

Part of Journal of Medical Genetics, p. 798-799, 2016

• DOI for Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?

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

Stack, Rebecca J.; Stoffer, Michaela; Englbrecht, Mathias; Mosor, Erika et al.

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
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Let the Individuals Directly Concerned Decide: A Solution to Tragic Choices in Genetic Risk Information

Oliveri, Serena; Pravettoni, Gabriella; Fioretti, Chiara; Hansson, Mats G.

Part of Public Health Genomics, p. 307-313, 2016

• DOI for Let the Individuals Directly Concerned Decide: A Solution to Tragic Choices in Genetic Risk Information

The risk of re-identification versus the need to identify individuals in rare disease research

Hansson, Mats G.; Lochmüller, Hanns; Riess, Olaf; Schaefer, Franz et al.

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

Freedom of Choice about Incidental Findings can frustrate participants’ true preferences

Viberg, Jennifer; Segerdahl, Pär; Langenskiöld, Sophie; Hansson, Mats G

Part of Bioethics, p. 203-209, 2016

• DOI for Freedom of Choice about Incidental Findings can frustrate participants’ true preferences

Ethics rounds: An appreciated form of ethics support

Silén, Marit; Ramklint, Mia; Hansson, Mats G; Haglund, Kristina

Part of Nursing Ethics, p. 203-213, 2016

• DOI for Ethics rounds: An appreciated form of ethics support

Let the Individuals Directly Concerned Decide: A Solution to Tragic Choices in Genetic Risk Information

Oliveri, Serena; Pravettoni, Gabriella; Fioretti, Chiara; Hansson, Mats G.

Part of Public Health Genomics, p. 307-313, 2016

• DOI for Let the Individuals Directly Concerned Decide: A Solution to Tragic Choices in Genetic Risk Information

Perceptions Of Testing To Predict Future Development Of Rheumatoid Arthritis Among The First-Degree Relatives Of People With Rheumatoid Arthritis: A Qualitative Exploration

Stack, Rebecca J.; Falahee, Marie; Stoffer, Michaela; Stamm, Tanja et al.

Part of Rheumatology, p. 110-110, 2015

Broad Consent for Research With Biological Samples: Workshop Conclusions

Grady, Christine; Eckstein, Lisa; Berkman, Ben; Brock, Dan et al.

Part of American Journal of Bioethics, p. 34-42, 2015

• DOI for Broad Consent for Research With Biological Samples: Workshop Conclusions

Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials

Godskesen, Tove; Hansson, Mats G.; Nygren, Peter; Nordin, Karin et al.

Part of European Journal of Cancer Care, p. 133-141, 2015

• DOI for Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials

The Swedish CArdioPulmonary BioImage Study: objectives and design

Bergström, G; Berglund, G; Blomberg, A; Brandberg, J et al.

Part of Journal of Internal Medicine, p. 645-659, 2015

• DOI for The Swedish CArdioPulmonary BioImage Study: objectives and design
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Ethics rounds do not improve the handling of ethical issues by psychiatric staff

Silén, Marit; Haglund, Kristina; Hansson, Mats G.; Ramklint, Mia

Part of Nordic Journal of Psychiatry, p. 1700-1707, 2015

• DOI for Ethics rounds do not improve the handling of ethical issues by psychiatric staff

International Charter of principles for sharing bio-specimens and data

Mascalzoni, Deborah; Dove, Edward S; Rubinstein, Yaffa; Dawkins, Hugh J S et al.

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

Ethical, Legal and Societal Implications of Biobanking at European Level: A Common Service of the European Biobank and Biomolecular Research Infrastructure

Cambon-Thomsen, Anne; Bovenberg, Jasper; Lavitrano, Marialuisa; Hansson, Mats G. et al.

Part of Tissue Antigens, p. 372-372, 2015

Öppenheten förstör chansen till patent

Arvidsson, Per I.; Domeij, Bengt; Hansson, Mats G.; Landegren, Ulf et al.

Part of Svenska dagbladet, 2015

Incidental findings: the time is not yet ripe for a policy for biobanks

Viberg, Jennifer; Hansson, Mats G.; Langenskiöld, Sophie; Segerdahl, Pär

Part of European Journal of Human Genetics, p. 437-441, 2014

• DOI for Incidental findings: the time is not yet ripe for a policy for biobanks

ERIC: a new governance tool for Biobanking

Reichel, Jane; Lind, Anna-Sara; Hansson, Mats G.; Litton, Jan-Eric

Part of European Journal of Human Genetics, p. 1055-1057, 2014

• DOI for ERIC: a new governance tool for Biobanking

Why participating in (certain) scientific research is a moral duty

Stjernschantz Forsberg, Joanna; Hansson, Mats G.; Eriksson, Stefan

Part of Journal of Medical Ethics, p. 325-328, 2014

• DOI for Why participating in (certain) scientific research is a moral duty

Ethical Review Boards are poor advocates for patient perspectives

Masterton, Malin; Renberg, Tobias; Hansson, Mats G; Kälvemark Sporrong, Sofia

Part of Research Ethics, p. 169-181, 2014

• DOI for Ethical Review Boards are poor advocates for patient perspectives

Making researchers moral: Why trustworthiness requires more than ethics guidelines and review

Johnsson, Linus; Eriksson, Stefan; Helgesson, Gert; Hansson, Mats G.

Part of Research Ethics, p. 29-46, 2014

• DOI for Making researchers moral: Why trustworthiness requires more than ethics guidelines and review
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Children's Views on Long-Term Screening for Type 1 Diabetes

Swartling, Ulrica; Helgesson, Gert; Ludvigsson, Johnny; Hansson, Mats G. et al.

Part of Journal of Empirical Research on Human Research Ethics, p. 1-9, 2014

• DOI for Children's Views on Long-Term Screening for Type 1 Diabetes

Rare diseases and now rare data?

Mascalzoni, Deborah; Knoppers, Bartha Maria; Aymé, Ségolène; Macilotti, Matteo et al.

Part of Nature reviews genetics, p. 372, 2013

Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation

Godskesen, Tove; Nygren, Peter; Nordin, Karin; Hansson, Mats et al.

Part of Supportive Care in Cancer, p. 3137-3142, 2013

• DOI for Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation

Cheating is the name of the game: Conventional cheating arguments fail to articulate moral responses to doping

Atry, Ashkan; Hansson, Mats G.; Kihlbom, Ulrik

Part of Physical Culture and Sport. Studies and Research, p. 21-32, 2013

• DOI for Cheating is the name of the game: Conventional cheating arguments fail to articulate moral responses to doping

International guidelines on biobank research leave researchers in ambiguity: why is this so?

Stjernschantz Forsberg, Joanna; Hansson, Mats G.; Evers, Kathinka

Part of European Journal of Epidemiology, p. 449-451, 2013

• DOI for International guidelines on biobank research leave researchers in ambiguity: why is this so?

Transition to noncurative end-of-life care in paediatric oncology: a nationwide follow-up in Sweden

Jalmsell, Li; Forslund, Martin; Hansson, Mats G.; Henter, Jan-Inge et al.

Part of Acta Paediatrica, p. 744-748, 2013

• DOI for Transition to noncurative end-of-life care in paediatric oncology: a nationwide follow-up in Sweden

Rare diseases and now rare data?

Mascalzoni, Deborah; Knoppers, Bartha Maria; Ayme, Segolene; Macilotti, Matteo et al.

Part of Nature reviews genetics, p. 372-372, 2013

• DOI for Rare diseases and now rare data?

Patients would benefit from simplified ethical review and consent procedure

Hansson, Mats G.; van Ommen, Gert Jan; Chadwick, Ruth; Dillner, Joakim

Part of The Lancet Oncology, p. 451-453, 2013

• DOI for Patients would benefit from simplified ethical review and consent procedure

Finding ways to improve the use of biobanks

Paradiso, Angelo; Hansson, Mats

Part of Nature Medicine, p. 815-815, 2013

• DOI for Finding ways to improve the use of biobanks

Adequate trust avails, mistaken trust matters: On the moral responsibility of doctors as proxies for patients' trust in biobank research

Johnsson, Linus; Helgesson, Gert; Hansson, Mats G.; Eriksson, Stefan

Part of Bioethics, p. 485-492, 2013

• DOI for Adequate trust avails, mistaken trust matters: On the moral responsibility of doctors as proxies for patients' trust in biobank research

Where should we draw the line between quality of care and other ethical concerns related to medical registries and biobanks?

Hansson, Mats

Part of Theoretical Medicine and Bioethics, p. 313-323, 2012

• DOI for Where should we draw the line between quality of care and other ethical concerns related to medical registries and biobanks?

Medical registries represent vital patient interests and should not be dismantled by stricter regulation

Hansson, Mats G; Simonsson, Bengt; Feltelius, Nils; Forsberg, Joanna Stjernschantz et al.

Part of Cancer Epidemiology, p. 575-578, 2012

• DOI for Medical registries represent vital patient interests and should not be dismantled by stricter regulation

Ethics bureaucracy: a significant hurdle for collaborative follow-up of drug effectiveness in rare childhood diseases

Hansson, Mats G.; Gattorno, Marco; Stjernschantz Forsberg, Joanna; Feltelius, Nils et al.

Part of Archives of Disease in Childhood, p. 561-563, 2012

• DOI for Ethics bureaucracy: a significant hurdle for collaborative follow-up of drug effectiveness in rare childhood diseases

Commercialization of Biobanks

Evers, Kathinka; Stjernschantz Forsberg, Joanna; Hansson, Mats

Part of Biopreservation and Biobanking, p. 45-47, 2012

• DOI for Commercialization of Biobanks

Biobanks: Validate gene findings before telling donors

Hansson, Mats G.

Part of Nature, p. 455-455, 2012

• DOI for Biobanks: Validate gene findings before telling donors

Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport

Atry, Ashkan; Hansson, Mats G.; Kihlbom, Ulrik

Part of Sport, Ethics and Philosophy, p. 467-479, 2012

• DOI for Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport

Biobank research: who benefits from individual consent?

Stjernschantz Forsberg, Joanna; Hansson, Mats G.; Eriksson, Stefan

Part of The BMJ, 2011

• DOI for Biobank research: who benefits from individual consent?

Biobank Research and Consent: Authors' reply to Sheehan

Forsberg, Joanna Stjernschantz; Hansson, Mats G.; Eriksson, Stefan

Part of The BMJ, 2011

• DOI for Biobank Research and Consent: Authors' reply to Sheehan

Is medical ethics doing its job?: Introduction

Hansson, Mats G.; Chadwick, R.

Part of Journal of Internal Medicine, p. 366-369, 2011

• DOI for Is medical ethics doing its job?: Introduction

Biobanking Within the European Regulatory Framework: Opportunities and Obstacles

Hansson, Mats G.

Part of Biopreservation and Biobanking, p. 165-167, 2011

• DOI for Biobanking Within the European Regulatory Framework: Opportunities and Obstacles

The Risks and Benefits of Re-Consent

Stjernschantz Forsberg, Joanna; Hansson, Mats G.; Eriksson, Stefan

Part of Science, p. 306-306, 2011

"My parents decide if I can. I decide if I want to.": Children's views on participation in medical research

Swartling, Ulrica; Hansson, Mats G.; Ludvigsson, Johnny; Nordgren, Anders

Part of Journal of Empirical Research on Human Research Ethics, p. 68-75, 2011

• DOI for "My parents decide if I can. I decide if I want to.": Children's views on participation in medical research

Gene Doping and the Responsibility of Bioethicists

Atry, Ashkan; Hansson, Mats G.; Kihlbom, Ulrik

Part of Sport, Ethics and Philosophy, p. 149-160, 2011

• DOI for Gene Doping and the Responsibility of Bioethicists

In search of the missing subject: narrative identity and posthumous wronging

Masterton, Malin; Hansson, Mats G.; Höglund, Anna T.

Part of Studies in History and Philosophy of Science Part C, p. 340-346, 2010

• DOI for In search of the missing subject: narrative identity and posthumous wronging

Hypothetical and factual willingness to participate in biobank research

Johnsson, Linus; Helgesson, Gert; Rafnar, Thorunn; Halldorsdottir, Ingibjörg et al.

Part of European Journal of Human Genetics, p. 1261-1264, 2010

• DOI for Hypothetical and factual willingness to participate in biobank research
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Changing defaults in biobank research could save lives too

Stjernschantz Forsberg, Joanna; Eriksson, Stefan; Hansson, Mats G

Part of European Journal of Epidemiology, p. 65-68, 2010

• DOI for Changing defaults in biobank research could save lives too

The use of human tissue in epidemiological research: ethical and legal considerations in two biobanks in Belgium

Truyers, Carla; Kellen, Eliane; Arbyn, Marc; Trommelmans, Leen et al.

Part of Medicine, Health care and Philosophy, p. 169-175, 2010

• DOI for The use of human tissue in epidemiological research: ethical and legal considerations in two biobanks in Belgium

Taking the patient's side: the ethics of pharmacogenetics

Hansson, Mats G.

Part of Personalized Medicine, p. 75-85, 2010

• DOI for Taking the patient's side: the ethics of pharmacogenetics

Ulysses contracts for the doctor and for the patient

Hansson, Mats G; Hakama, Matti

Part of Contemporary Clinical Trials, p. 202-206, 2010

• DOI for Ulysses contracts for the doctor and for the patient

Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence

Hultman, Christina M; Lindgren, Ann-Christin; Hansson, Mats G; Carlstedt-Duke, Jan et al.

Part of Public Health Ethics, p. 30-36, 2009

• DOI for Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence

Concern for privacy in relation to age during physical examination of children: an exploratory study

Hansson, Mats G; Kihlbom, Ulrik; Tuvemo, Torsten; Rodriguez, Alina

Part of Acta Paediatrica, p. 1349-1354, 2009

• DOI for Concern for privacy in relation to age during physical examination of children: an exploratory study

Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial

Helgesson, Gert; Hansson, Mats G; Ludvigsson, Johnny; Swartling, Ulrica

Part of Pediatric Diabetes, p. 408-412, 2009

• DOI for Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial

Pregnant women are satisfied with the information they receive about prenatal diagnosis, but are their decisions well informed?

Ferm Widlund, Kjerstin; Gunnarsson, Cecilia; Nordin, Karin; Hansson, Mats G

Part of Acta Obstetricia et Gynecologica Scandinavica, p. 1128-1132, 2009

• DOI for Pregnant women are satisfied with the information they receive about prenatal diagnosis, but are their decisions well informed?

Biobanks: questioning distinctions

Hansson, Mats G.; Maschke, Karen J.

Part of Science, p. 797-797, 2009

• DOI for Biobanks: questioning distinctions

Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results

Stjernschantz Forsberg, Joanna; Hansson, Mats G; Eriksson, Stefan

Part of European Journal of Human Genetics, p. 1544-1549, 2009

• DOI for Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results

Split views among parents regarding children's right to decide about participation in research: a questionnaire survey

Swartling, U.; Helgesson, G.; Hansson, M. G.; Ludvigsson, J.

Part of Journal of Medical Ethics, p. 450-455, 2009

• DOI for Split views among parents regarding children's right to decide about participation in research: a questionnaire survey

Parental authority, research interest and children's right to decide in medical research - an uneasy tension?

Swartling, Ulrica; Helgesson, Gert; Hansson, Mats G

Part of Clinical Ethics, p. 69-74, 2008

• DOI for Parental authority, research interest and children's right to decide in medical research - an uneasy tension?

Opt-out from biobanks better respects patients' autonomy

Johnsson, Linus; Hansson, Mats G; Eriksson, Stefan; Helgesson, Gert

Part of BMJ. British Medical Journal, 2008

• DOI for Opt-out from biobanks better respects patients' autonomy

Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study

Johnsson, Linus; Hansson, Mats G; Eriksson, Stefan; Helgesson, Gert

Part of BMJ. British Medical Journal, 2008

• DOI for Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study

Ethics takes time, but not that long

Hansson, Mats G; Kihlbom, Ulrik; Tuvemo, Torsten; Olsen, Leif et al.

Part of BMC Medical Ethics, p. 1-7, 2007

• DOI for Ethics takes time, but not that long

Can the Dead be Brought into Disrepute?

Masterton, Malin; Hansson, Mats; Höglund, Anna; Helgesson, Gert

Part of Theoretical Medicine and Bioethics, p. 137-149, 2007

• DOI for Can the Dead be Brought into Disrepute?

Queen Christina's moral claim on the living: Justification of a tenacious moral intuition

Masterton, Malin; Helgesson, Gert; Höglund, Anna; Hansson, Mats

Part of Medicine, Health care and Philosophy, p. 321-327, 2007

• DOI for Queen Christina's moral claim on the living: Justification of a tenacious moral intuition

Developing ethical competence in health care organizations

Kälvemark Sporrong, Sofia; Arnetz, Bengt; Hansson, Mats G.; Westerholm, Peter et al.

Part of Nursing Ethics, p. 825-837, 2007

• DOI for Developing ethical competence in health care organizations

Ethical framework for previously collected biobank samples

Helgesson, Gert; Dillner, Joakim; Carlson, Joyce; Bartram, Claus R et al.

Part of Nature Biotechnology, p. 973-976, 2007

• DOI for Ethical framework for previously collected biobank samples

Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population-based study

Kettis, Åsa; Ring, Lena; Viberth, Eva; Hansson, Mats G.

Part of Scandinavian Journal of Public Health, p. 148-156, 2007

• DOI for Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population-based study

Living with Multiple Endocrine Neoplasia Type 1: Decent Care-Insufficient Medical and Genetic Information A Qualitative Study of MEN 1 Patients in a Swedish Hospital

Stromsvik, N; Nordin, K; Berglund, G; Engebretsen, L et al.

Part of Journal of Genetic Counseling, p. 105-117, 2007

• DOI for Living with Multiple Endocrine Neoplasia Type 1: Decent Care-Insufficient Medical and Genetic Information A Qualitative Study of MEN 1 Patients in a Swedish Hospital

For the safety and benefit of current and future patients

Hansson, Mats G.

Part of Pathobiology (Basel), p. 198-205, 2007

• DOI for For the safety and benefit of current and future patients

Commentary: Isolated Stem Cells - Patentable as Cultural Artifacts?

Hansson, Mats G.; Helgesson, Gert; Wessman, Richard; Jaenisch, Rudolf

Part of Stem Cells, p. 1507-1510, 2007

• DOI for Commentary: Isolated Stem Cells - Patentable as Cultural Artifacts?

Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think?

Kettis, Åsa; Ring, Lena; Viberth, Eva; Hansson, Mats G.

Part of European Journal of Public Health, p. 433-440, 2006

• DOI for Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think?

Should donors be allowed to give broad consent to future biobank research?

Hansson, Mats G; Dillner, Joakim; Bartram, Claus R; Carlson, Joyce A et al.

Part of Lancet Oncol, p. 266-9, 2006

Combining efficiency and concerns about integrity when using human biobanks.

Hansson, Mats G

Part of Stud Hist Philos Biol Biomed Sci, p. 520-32, 2006

Parents' perspectives on research involving children.

Rodriguez, Alina; Tuvemo, Torsten; Hansson, Mats G

Part of Ups J Med Sci, p. 73-86, 2006

”We are white coats whirling round”: moral distress in Swedish pharmacies

Kälvemark Sporrong, Sofia; Höglund, Anna T.; Hansson, Mats G.; Westerholm, Peter et al.

Part of Pharmacy World & Science, p. 223-229, 2005

• DOI for ”We are white coats whirling round”: moral distress in Swedish pharmacies

Science and society: International perspectives on engaging the public in neuroethics.

Illes, Judy; Blakemore, Colin; Hansson, Mats G; Hensch, Takao K et al.

Part of Nat Rev Neurosci, p. 977-82, 2005

Building on relationships of trust in biobank research.

Hansson, M G

Part of J Med Ethics, p. 415-8, 2005

Quality of life in patients with multiple endocrine neoplasia type 1 (MEN 1).

Berglund, G; Lidén, A; Hansson, M G; Oberg, K et al.

Part of Fam Cancer, p. 27-33, 2003

Coping style, psychological distress, risk perception, and satisfaction in subjects attending genetic counselling for hereditary cancer

Nordin, Karin; Lidén, A; Hansson, Mats; Rosenquist, Richard et al.

Part of Journal of Medical Genetics, p. 689-694, 2002

• DOI for Coping style, psychological distress, risk perception, and satisfaction in subjects attending genetic counselling for hereditary cancer

Vilket värde har våra värderingar kring genteknik?

Hansson, M G

Part of Kungl. Skogs- och Lantbruksakademiens Tidskrift, p. 31-35, 2002

Ethical management of hereditary cancer information.

Hansson, M G

Part of Acta Oncol, p. 305-8, 1999

Introduction to discussion on ethical matters

Hansson, M G

Part of Acta Agriculture Scandinavica, p. 62-66, 1998

Patients' and Providers' Attitudes Toward Artificial Intelligence and Electronic Health Record Use in Deep Phenotyping and Rare-Disease Screening: An Empty Systematic Review

Martin, Sylvia; Grauman, Åsa; Coulter, Joshua; Hasan, Besir et al.

Part of Healthcare, 2026

• DOI for Patients' and Providers' Attitudes Toward Artificial Intelligence and Electronic Health Record Use in Deep Phenotyping and Rare-Disease Screening: An Empty Systematic Review
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Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

Martin, Sylvia; Kyosovska-Peshtenska, Gergana; Audi, Jennifer; Zarakowska, Kaja et al.

Part of Orphanet Journal of Rare Diseases, 2026

• DOI for Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022
• Download full text (pdf) of Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

The case for open science: rare diseases

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

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.

Renzi, Chiara; Provencal, Nadine; Bassil, Katherine C; Evers, Kathinka et al.

Part of Progress in Molecular Biology and Translational Science, p. 299-323, 2018

• DOI for From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health.

RD-Connect: An Integrated Platform Connecting Databases, Registries, Biobanks and Clinical Bioinformatics for Rare Disease Research

Thompson, Rachel; Johnston, Louise; Taruscio, Domenica; Monaco, Lucia et al.

Part of Journal of general internal medicine, 2014

• DOI for RD-Connect: An Integrated Platform Connecting Databases, Registries, Biobanks and Clinical Bioinformatics for Rare Disease Research

RD-Connect: An Integrated Platform Connecting Databases, Registries, Biobanks and Clinical Bioinformatics for Rare Disease Research

Thompson, Rachel; Johnston, Louise; Taruscio, Domenica; Monaco, Lucia et al.

Part of Journal of general internal medicine, 2014

• DOI for RD-Connect: An Integrated Platform Connecting Databases, Registries, Biobanks and Clinical Bioinformatics for Rare Disease Research

A model of study for human cancer: Spontaneous occurring tumors in dogs. Biological features and translation for new anticancer therapies

Ranieri, G.; Gadaleta, C. D.; Patruno, R.; Zizzo, N. et al.

Part of Critical reviews in oncology/hematology, p. 187-197, 2013

• DOI for A model of study for human cancer: Spontaneous occurring tumors in dogs. Biological features and translation for new anticancer therapies

Ethics and biobanks

Hansson, Mats G.

Part of British Journal of Cancer, p. 8-12, 2009

• DOI for Ethics and biobanks

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

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

Makadam Förlag, 2019

The Private Sphere: An Emotional Territory and Its Agent

Hansson, Mats G

Springer Science + Business Media B.V., 2008

The Use of Human Biobanks: Ethical, Social, Economical and Legal Aspects

Hansson, Mats G.

Uppsala University, 2001

Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks

Viberg, Jennifer; Hansson, Mats G.; Langenskiöld, Sophie; Segerdahl, Pär

Part of Ethics, Law and Governance of Biobanking, Springer, 2015

Access to health data in registries and the cost of privacy concerns: introducing a privacy ombudsman while extending access to data

Hansson, Mats G.

Part of Information and Law in Transition, p. 325-338, Liber, 2015

The ethics of PGD-regulation

Hansson, M G

Part of PGD and Embryo Selection, p. 82-92, The Nordic Committee on Bioethics, Copenhagen 2006, 2006

Biobanks as Resources for Health

Hansson, Mats G; Levin, Marianne

Part of Biobanks as Resources for Health, p. 9-20, Uppsala universitet, 2003

Att respektera människor som moraliskt och politiskt myndiga - Om integritet som etiskt begrepp med tillämpning på medicinsk forskning

Hansson, M G

Part of Annales. Acadmiae Regiae Scientiarum Upsaliensis 35, p. 57-65, 2003

In the interests of efficiency and integrity

Hansson, Mats G.

Part of The Use of Human Biobanks, p. 35-40, Uppsala University, 2001

Biobanks as resources for health

Hansson, Mats G; Levin, Marianne

Uppsala University, 2003

Good Conduct in Research. An extract from the Swedish parliamentary investigation into research ethics 1999

Hansson, M G

Forskningsrådsnämnden, Stockholm, 1999

Idédokument från konferensen genetisk insyn. Genforskningens konsekvenser för individ och samhälle. Probleminventering - Idéer till forskningsinitiativ

Hansson, M G

GENOM-gruppen c/o Medicinska forskningsrådet, Stockholm, 1994

They want the Truth while Still Being Allowed to Hope - An Interview Study with Severely Ill Children on Receiving Bad News

Jalmsell, Li; Lovgren, M.; Hansson, Mats G.; Kreicbergs, U. et al.

2015

Doping and The Participatory Responsibility of Sports Physicians

Atry, Ashkan; Hansson, Mats G.; Kihlbom, Ulrik

2013

Research Data Inquiry investigating national exceptions under the General Data Protection Regulation

Reichel, Jane; Lind, Anna-Sara; Hansson, Mats G.

2016

Genomics for policy makers and for researchers. Review of: Genomics and society-Ethical, Legal, Cultural and Socioeconomic Implication. Edited by: Dhavendra Kumar and Ruth Chadwick.

Hansson, Mats G.

Part of European Journal of Human Genetics, p. 1835-1835, 2016

• DOI for Genomics for policy makers and for researchers. Review of: Genomics and society-Ethical, Legal, Cultural and Socioeconomic Implication. Edited by: Dhavendra Kumar and Ruth Chadwick.

Swedish biotechnology and bioethics go hand in hand

Hansson, M G

2002