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18Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experimentBMC Medical Ethics 24 (1): 1-13. 2023.BackgroundNew disease-modifying ways to treat Parkinson’s disease (PD) may soon become a reality with intracerebral transplantation of cell products produced from human embryonic stem cells (hESCs). The aim of this study was to assess what factors influence preferences of patients with PD regarding stem-cell based therapies to treat PD in the future.MethodsPatients with PD were invited to complete a web-based discrete choice experiment to assess the importance of the following attributes: (i) ty…Read more
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23A proposal for an international Code of Conduct for data sharing in genomicsDeveloping World Bioethics 23 (4): 344-357. 2023.As genomic research becomes commonplace across the world, there is an increased need to coordinate practices among researchers, especially with regard to data sharing. One such way is an international code of conduct. In September 2020, an expert panel consisting of representatives from various fields convened to discuss a draft proposal formed via a synthesis of existing professional codes and other recommendations. This article presents an overview and analysis of the main issues related to in…Read more
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42Where should we draw the line between quality of care and other ethical concerns related to medical registries and biobanks?Theoretical Medicine and Bioethics 33 (4): 313-323. 2012.Together with large biobanks of human samples, medical registries with aggregated data from many clinical centers are vital parts of an infrastructure for maintaining high standards of quality with regard to medical diagnosis and treatment. The rapid development in personalized medicine and pharmaco-genomics only underscores the future need for these infrastructures. However, registries and biobanks have been criticized as constituting great risks to individual privacy. In this article, I sugges…Read more
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27Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview studyBMC Medical Ethics 23 (1): 1-10. 2022.BackgroundHuman embryonic stem cells as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson’s disease. Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending.ObjectiveTo Investigate the pe…Read more
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43Why participating in scientific research is a moral dutyJournal of Medical Ethics 40 (5): 325-328. 2014.Our starting point in this article is the debate between John Harris and Iain Brassington on whether or not there is a duty to take part in scientific research. We consider the arguments that have been put forward based on fairness and a duty to rescue, and suggest an alternative justification grounded in a hypothetical agreement: that is, because effective healthcare cannot be taken for granted, but requires continuous medical research, and nobody knows what kind of healthcare they will need, p…Read more
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8Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in SwedenBMC Medical Ethics 23 (1): 1-9. 2022.BackgroundParkinson’s disease (PD) has been considered to be one of the most promising target diseases for forthcoming cell-based therapy. The aim of this study is to explore the views of individuals with cryopreserved embryos on using human embryonic stem cells for treating PD.MethodsThe study was performed as a qualitative, semi-structured interview study in June–October 2020. Participants were recruited at a private fertility clinic located in one of the larger Swedish cities. The clinic prov…Read more
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16Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatmentBMC Medical Ethics 23 (1): 1-9. 2022.BackgroundThe use of human embryonic stem cells (ES cells) for the development of medical therapies is surrounded with moral concerns. The aim of this study was to assess the public’s attitudes toward the use of ES cells for treatment of Parkinson’s disease (PD) and other diseases, what factors are most important to consider when using ES cells for drug development, and if there is an association between religious beliefs and attitudes toward using ES cells for medical treatment.MethodsA randoml…Read more
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19Developing Ethical Competence in Health Care OrganizationsNursing Ethics 14 (6): 825-837. 2007.Increased work complexity and financial strain in the health care sector have led to higher demands on staff to handle ethical issues. These demands can elicit stress reactions, that is, moral distress. One way to support professionals in handling ethical dilemmas is education and training in ethics. This article reports on a controlled prospective study evaluating a structured education and training program in ethics concerning its effects on moral distress. The results show that the participan…Read more
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12The use of human tissue in epidemiological research; ethical and legal considerations in two biobanks in BelgiumMedicine, Health Care and Philosophy 13 (2): 169-175. 2010.This paper discusses the legal implications of setting up two new biobanks in Belgium. The first is hospital-based and will archive tissue from patients with haematologic cancer, whereas the second is linked to a general practice based morbidity registry and will involve storage of blood samples. To date, Belgium has no specific legislation that regulates storage of human tissue and related databases. Several issues concerning the protection of individuals with regard to the processing of person…Read more
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9Ethical, social and psychological impacts of genomic risk communication (edited book)Routledge. 2021.This volume presents the ethical implications of risk information as related to genetics and other health data for policy decisions at clinical, research and societal levels. Ethical, Social and Psychological Impacts of Genomic Risk Communication examines the introduction of new types of health risk information based on faster, cheaper and larger sets of genetic or genomic analysis. Synthesising the results of a five-year interdisciplinary project, it explores the unsolved ethical and social que…Read more
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Genomic and Biological Risk Profiling : From Medicalization to EmpowermentIn Ulrik Kihlbom, Mats G. Hansson & Silke Schicktanz (eds.), Ethical, social and psychological impacts of genomic risk communication, Routledge. 2021.
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98Parental authority, research interests and children's right to decide in medical research – an uneasy tension?Clinical Ethics 3 (2): 69-74. 2008.There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden (with…Read more
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34What parents find important when participating in longitudinal studies: results from a questionnaireClinical Ethics 5 (1): 28-34. 2010.The objective of the present paper is to explore parents' views on safety and confidentiality, information and consent, the importance of different kinds of research, and their responsibilities regarding children's participation. A questionnaire was distributed to 2500 families in south-east Sweden with children born during the years 1997–1999; 1302 responded. The sample was chosen to include views of families with and without earlier research experience. A clear majority of responding parents s…Read more
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74Ethical review boards are poor advocates for patient perspectivesResearch Ethics 10 (3): 169-181. 2014.In medical research, patients are increasingly recognized with ‘lay knowledge’ but their views are poorly researched. The study objective was to investigate patients’ attitudes to medical research. This is in comparison to lay and expert members on ethical review boards, as their task is to evaluate the risk−benefits of research, which are ultimately grounded in attitudes and values. From focus-group interviews with patients suffering from chronic inflammatory diseases, a postal questionnaire wa…Read more
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10Why participating in (certain) scientific research is a moral dutyJournal of Medical Ethics 40 (5): 325-328. 2014.
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34Values and value conflicts in implementation and use of preconception expanded carrier screening - an expert interview studyBMC Medical Ethics 20 (1): 25. 2019.Endeavors have been made to found and incorporate ethical values in most aspects of healthcare, including health technology assessment. Health technologies and their assessment are value-laden and could trigger problems with dissemination if they contradict societal norms. Per WHO definition, preconception expanded carrier screening is a new health technology that warrants assessment. It is a genetic test offered to couples who have no known risk of recessive genetic diseases and are interested …Read more
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2Preference Change: Approaches from Philosophy, Economics and Psychology. (edited book)Springer, Theory and Decision Library A. 2008.
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9Combining efficiency and concerns about integrity when using human biobanksStudies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 37 (3): 520-532. 2004.In the debate about human bio-sampling the interests of patients and other sample donors are believed to stand against the interests of scientists and of their freedom of research. Scientists want efficient access to and use of human biological samples. Patients and other donors of blood or tissue materials want protection of their integrity. This dichotomy is reflected in the Swedish law on biobanks, which came into effect 1 January 2003. In this article I argue that if the basic interest of sc…Read more
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64Ethics roundsNursing Ethics 23 (2): 203-213. 2016.Background:Ethics rounds are one way to support healthcare personnel in handling ethically difficult situations. A previous study in the present project showed that ethics rounds did not result in significant changes in perceptions of how ethical issues were handled, that is, in the ethical climate. However, there was anecdotal evidence that the ethics rounds were viewed as a positive experience and that they stimulated ethical reflection.Aim:The aim of this study was to gain a deeper understand…Read more
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55Ethical issues in cancer register follow-up of hormone treatment in adolescencePublic Health Ethics 2 (1): 30-36. 2009.Since the 1970s, estrogen have sometimes been used in adolescent girls to reduce very tall adult expected height. Worries about long-term effects have led to a proposal to link treatment data with cancer registers. How should one deal with informed consent for such a study? We designed a qualitative study with semi-structured telephone interviews. From 1200 women who were to be followed-up in cancer registers, we randomly selected 22 women. Major themes were a wish to be involved and a positive …Read more
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40Queen Christina’s moral claim on the living: Justification of a tenacious moral intuition (review)Medicine, Health Care and Philosophy 10 (3): 321-327. 2007.In the long-running debate on the interest of the dead, Joan C. Callahan argues against such interests and although Søren Holm for practical reasons is prepared to consider posthumous interests, he does not see any moral basis to support such interests. He argues that the whole question is irresolvable, yet finds privacy interests where Tutankhamen is concerned. Callahan argues that there can be reasons to hold on to the fiction that there are posthumous interests, namely if it is comforting for…Read more
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46In Sweden, most patients are recruited into biobank research by non-researcher doctors. Patients' trust in doctors may therefore be important to their willingness to participate. We suggest a model of trust that makes sense of such transitions of trust between domains and distinguishes adequate trust from mistaken trust. The unique position of doctors implies, we argue, a Kantian imperfect duty to compensate for patients' mistaken trust. There are at least three kinds of mistaken trust, each of …Read more
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67Developing Ethical Competence in Health Care OrganizationsNursing Ethics 14 (6): 825-837. 2007.Increased work complexity and financial strain in the health care sector have led to higher demands on staff to handle ethical issues. These demands can elicit stress reactions, that is, moral distress. One way to support professionals in handling ethical dilemmas is education and training in ethics. This article reports on a controlled prospective study evaluating a structured education and training program in ethics concerning its effects on moral distress. The results show that the participan…Read more
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REGULAR ARTICLE Concern for privacy in relation to age during physical examination of children: an exploratory studyActa Pædiatrica 98 (8): 1349-1354. 2009.
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27Combining efficiency and concerns about integrity when using human biobanksStudies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 37 (3): 520-532. 2006.In the debate about human bio-sampling the interests of patients and other sample donors are believed to stand against the interests of scientists and of their freedom of research. Scientists want efficient access to and use of human biological samples. Patients and other donors of blood or tissue materials want protection of their integrity. This dichotomy is reflected in the Swedish law on biobanks, which came into effect 1 January 2003. In this article I argue that if the basic interest of sc…Read more
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49Ethics takes time, but not that longBMC Medical Ethics 8 (1): 6. 2007.Time and communication are important aspects of the medical consultation. Physician behavior in real-life pediatric consultations in relation to ethical practice, such as informed consent (provision of information, understanding), respect for integrity and patient autonomy (decision-making), has not been subjected to thorough empirical investigation. Such investigations are important tools in developing sound ethical praxis
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40Making researchers moral: Why trustworthiness requires more than ethics guidelines and reviewResearch Ethics 10 (1): 29-46. 2014.Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustwor…Read more
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31Beyond the Individual: Sources of Attitudes Towards Rule Violation in SportSport, Ethics and Philosophy 6 (4): 467-479. 2012.Today, certain rule-violating behaviours, such as doping, are considered to be an issue of concern for the sport community. This paper underlines and examines the affective dimensions involved in moral responses to, and attitudes towards, rule-violating behaviours in sport. The key role played by affective processes underlying individual-level moral judgement has already been implicated by recent developments in moral psychological theories, and by neurophysiological studies. However, we propose…Read more
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16Parental authority, research interests and children's right to decide in medical research – an uneasy tension?Clinical Ethics 3 (2): 69-74. 2008.There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden we ex…Read more
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76Can the dead be brought into disrepute?Theoretical Medicine and Bioethics 28 (2): 137-149. 2007.Queen Christina of Sweden was unconventional in her time, leading to hypotheses on her gender and possible hermaphroditic nature. If genetic analysis can substantiate the latter claim, could this bring the queen into disrepute 300 years after her death? Joan C. Callahan has argued that if a reputation changes, this constitutes a change only in the group of people changing their views and not in the person whose reputation it is. Is this so? This paper analyses what constitutes change and draws o…Read more
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