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.

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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.

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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.

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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.

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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, 2019.

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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.

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Niemiec, Emilia; Howard, Heidi Carmen

Include egg donors in CRISPR gene-editing debate

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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Farisco, Michele

Brain, consciousness and disorders of consciousness at the intersection of neuroscience and philosophy

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Staunton, Ciara; Slokenberga, Santa; Mascalzoni, Deborah

The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks

Part of European Journal of Human Genetics, p. 1159-1167, 2019.

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Salles, Arleen; Evers, Kathinka; Farisco, Michele

The Need for a Conceptual Expansion of Neuroethics

Part of AJOB Neuroscience, p. 126-128, 2019.

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Soulier, Alexandra

Reconsidering Dynamic Consent in Biobanking Ethical and Political Consequences of Transforming Research Participants into ICT Users

Part of IEEE technology & society magazine, p. 62-70, 2019.

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Pennartz, Cyriel M. A.; Farisco, Michele; Evers, Kathinka

Indicators and Criteria of Consciousness in Animals and Intelligent Machines: An Inside-Out Approach

Part of Frontiers in Systems Neuroscience, 2019.

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Guerrero, Manuel; Del Villar, María Soledad; Hau, Boris; Johansson, María Teresa

Professions and Profiles: Epistemic Communities and the Registration of Human Rights Violations

Part of Resistance to Political Violence in Latin America, p. 79-115, 2019.

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Fernow, Josepine; de Miguel Beriain, Inigo; Brey, Philip; Stahl, Berndt

Setting future ethical standards for ICT, Big Data, AI and robotics: The contribution of three European projects

Part of Orbit Journal, 2019.

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Northoff, Georg; Wainio-Theberge, Soren; Evers, Kathinka

Is temporo-spatial dynamics the “common currency” of brain and mind?: In Quest of “Spatiotemporal Neuroscience”

Part of Physics of Life Reviews, 2019.

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Janssens, Rosanne; Russo, Selena; van Overbeeke, Eline; Whichello, Chiara et al.

Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA

Part of Patient, p. 513-526, 2019.

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

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

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

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Larrivee, Denis; Farisco, Michele

Realigning the Neural Paradigm for Death

Part of Journal of Bioethical Inquiry, p. 259-277, 2019.

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

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

Part of PLoS ONE, 2019.

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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. 1-14, 2019.

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Slokenberga, Santa; Reichel, Jane; Niringiye, Rachel; Croxton, Talishiea et al.

EU data transfer rules and African legal realities: is data exchange for biobank research realistic?

Part of International Data Privacy Law, p. 30-48, 2019.

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Godskesen, Tove; Eriksson, Stefan

Selektiv rapportering av kliniska prövningar

Part of Dagens Medicin, 2019.

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Slokenberga, Santa; Howard, Heidi Carmen

THE RIGHT TO SCIENCE AND HUMAN GERMLINE EDITING. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act

Part of Förvaltningsrättslig Tidskrift, p. 199-222, 2019.

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Russo, Selena; Jongerius, Chiara; Faccio, Flavia; Pizzoli, Silvia F.M. et al.

Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies

Part of Value in Health, p. 491-501, 2019.

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Dal-Ré, Rafael; Avendaño-Solà, Cristina; Bloechl-Daum, Brigitte; de Boer, Anthonius et al.

Low risk pragmatic trials do not always require participants' informed consent

Part of BMJ. British Medical Journal, 2019.

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

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

Part of Patient Education and Counseling, p. 1528-1534, 2019.

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Stahl, Bernd Carsten; Akintoye, Simisola; Fothergill, Tyr; Guerrero, Manuel et al.

Beyond Research Ethics: Dialogues in Neuro-ICT Research

Part of Frontiers in Human Neuroscience, 2019.

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Carrieri, Daniele; Howard, Heidi Carmen; Clarke, Angus J.; Stefansdottir, Vigdis et al.

Reply to Bombard and Mighton

Part of European Journal of Human Genetics, p. 507-508, 2019.

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Mascalzoni, Deborah; Bentzen, Heidi Beate; Budin-Ljosne, Isabelle; Bygrave, Lee Andrew et al.

Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?

Part of Annals of Internal Medicine, p. 332-334, 2019.

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Ballantyne, Angela; Eriksson, Stefan

Research ethics revised: The new CIOMS guidelines and the World Medical Association Declaration of Helsinki in context

Part of Bioethics, p. 310-311, 2019.

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Middleton, Anna; Milne, Richard; Thorogood, Adrian; Kleiderman, Erika et al.

Attitudes of publics who are unwilling to donate DNA data for research.

Part of European Journal of Medical Genetics, p. 316-323, 2019.

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

Should the deceased be listed as authors?

Part of Journal of Medical Ethics, p. 331-338, 2019.

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Cornel, Martina C.; Howard, Heidi Carmen; Lim, Daniel; Bonham, Vence L. et al.

Moving towards a cure in genetics: what is needed to bring somatic gene therapy to the clinic?

Part of European Journal of Human Genetics, p. 484-487, 2019.

DOI To DiVA

Veldwijk, Jorien; Groothuis-Oudshoorn, Catharina G. M.; Kihlbom, Ulrik; Langenskiöld, Sophie et al.

How psychological distance of a study sample in discrete choice experiments affects preference measurement: a colorectal cancer screening case study

Part of Patient Preference and Adherence, p. 273-282, 2019.

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Carrieri, Daniele; Howard, Heidi Carmen; Benjamin, Caroline; Clarke, Angus J. et al.

Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics

Part of European Journal of Human Genetics, p. 169-182, 2019.

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Witt, Stefanie; Escherich, Gabriele; Rutkowski, Stefan; Kappelhoff, Gerhard et al.

Exploring the Potential of a Pretend Play Intervention in Young Patients With Leukemia

Part of Journal of Pediatric Nursing, p. E98-E106, 2019.

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Salles, Arleen; Bjaalie, Jan; Evers, Kathinka; Farisco, Michele et al.

The Human Brain Project: Responsible Brain Research for the Benefit of Society

Part of Neuron, p. 380-384, 2019.

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Matar, Amal

Considering a Baby? Responsible Screening for the Future: Ethical and social implications for implementation and use of preconception expanded carrier screening in Sweden

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

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

Part of BMC Medical Ethics, 2019.

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

Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis

Part of Patient, p. 297-305, 2019.

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