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Hansson, Mats G.
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Publications (10 of 102) Show all publications
Matar, A., Hansson, M. G. & Höglund, A. T. (2019). "A perfect society": Swedish policymakers' ethical and social views on preconception expanded carrier screening. Journal of Community Genetics, 10(2), 267-280
Open this publication in new window or tab >>"A perfect society": Swedish policymakers' ethical and social views on preconception expanded carrier screening
2019 (English)In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 10, no 2, p. 267-280Article in journal (Refereed) Published
Abstract [en]

To improve healthcare policymaking, commentators have recommended the use of evidence, health technology assessment, priority setting, and public engagement in the process of policymaking. Preconception expanded carrier screening, according to the World Health Organization’s definition, is a novel health technology and therefore warrants assessment, part of which involves evaluating ethical and social implications. We examined ten Swedish policymakers’ perspectives on ethical and social aspects of preconception expanded screening through in-depth expert interviewing, using a semi-structured questionnaire. Respondents were affiliated to governmental and non-governmental institutions that directly influence healthcare policymaking in Sweden. The interviews were recorded, transcribed verbatim, and analyzed via inductive thematic analysis method, which generated seven themes and several subthemes. Policymakers harbored concerns regarding the economics, Swedish and international political respects, implementation procedures, and societal effects, which included long-term ones. Moreover, participants detailed the role of public engagement, research, and responsibility in regard to preconception expanded carrier screening implementation. Since this is a qualitative study, with a small non-random sample, the results may not be generalizable to all policymakers in Sweden. However, the results give a profound insight into the process and interpretative knowledge of experts, in the Swedish milieu and the extent of readiness of Sweden to implement a preconception expanded carrier screening program.

Keywords
Preconception, Expanded carrier screening, Genetic, Policymakers, Reproductive decision-making, Ethics, Social effects
National Category
Other Medical Biotechnology Other Health Sciences Medical Ethics
Identifiers
urn:nbn:se:uu:diva-362390 (URN)10.1007/s12687-018-0389-x (DOI)000463053900011 ()30259298 (PubMedID)
Available from: 2018-10-04 Created: 2018-10-04 Last updated: 2019-04-25Bibliographically approved
Grauman, Å., Hansson, M. G., James, S. K., Veldwijk, J. & Höglund, A. T. (2019). Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment. Patient Education and Counseling, 102(8), 1528-1534
Open this publication in new window or tab >>Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment
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2019 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 102, no 8, p. 1528-1534Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: The objective of this study was to explore research participants' (adults, age 50-65) perceptions of receiving cardiovascular risk information.

METHODS: Five focus group interviews (N = 31) were performed with research participants aged 50-65 who participated in the Swedish CArdioPulmonary BioImage Study (SCAPIS). The interviews were analyzed using qualitative content analysis.

RESULTS: The categories; the complexity of cardiovascular risk; insufficient presentation of test result; emotional responses; and health examinations provides confirmation, emerged. The test results were written in medical terms and lacked recommendations for further action which made it difficult for lay people to understand and use, and for some, also caused unnecessary worry.

CONCLUSION: There was inadequate guidance concerning the implications of the test results, especially for participants without clinical findings. In order to allow research participants to obtain better cognitive and behavioral control, improvements are needed with regard to how personal risk information is communicated in research projects connected to health services.

PRACTICAL IMPLICATIONS: The participants largely relied on physical signs when assessing their own cardiovascular risk. Health examinations are crucial for helping to add nuance to individuals' risk perceptions. For personal health information to have any real value for individuals, it must be designed from a user perspective.

Keywords
Cardiovascular diseases, Cardiovascular risk information, Health examinations, Qualitative research, Risk perception
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:uu:diva-381032 (URN)10.1016/j.pec.2019.03.010 (DOI)000470667500017 ()30928343 (PubMedID)
Funder
Swedish Heart Lung Foundation
Available from: 2019-04-03 Created: 2019-04-03 Last updated: 2019-07-05Bibliographically approved
Schölin Bywall, K., Veldwijk, J., Hansson, M. G. & Kihlbom, U. (2019). Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis. Patient, 12(3), 297-305
Open this publication in new window or tab >>Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis
2019 (English)In: Patient, ISSN 1178-1653, E-ISSN 1178-1661, Vol. 12, no 3, p. 297-305Article in journal (Refereed) Published
Abstract [en]

Background

There is increasing interest in involving patient preferences for benefits and risks in regulatory decision making. Therefore, it is essential to identify patient perspectives regarding the value of patient preference information (PPI).

Objectives

The aim of this study was to explore how patients with rheumatoid arthritis (RA) value the use of PPI in regulatory decision making regarding medical products.

Methods

Regulators and patients with RA were interviewed to gather initial insights into opinions on the use of PPI in regulatory decisions regarding medical products. The interviews were used to draft and validate the interview guide for focus groups with patients with RA. Participants were purposively sampled in collaboration with the Swedish Rheumatism Association in Stockholm and Uppsala. Each focus group consisted of three to six patients (18 in total). All interviews were audio-recorded, transcribed verbatim, and analysed using content analysis.

Results

According to the participants, PPI could lead to regulators considering patients’ needs, lifestyles and well-being when making decisions. PPI was important in all stages of the medical product lifecycle. Participants reported that, when participating in a preference study, it is important to be well-informed about the use of the study and the development, components, administration, and risks related to the medical products.

Conclusions

Patients thought PPI could be valuable to consider in regulatory decisions. It is essential for patients to be well-informed when asked for their preferences. Research on information materials to inform patients in preference studies is needed to increase the value of PPI in regulatory decision making.

National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-366354 (URN)10.1007/s40271-018-0344-2 (DOI)000468375300003 ()30443897 (PubMedID)
Funder
Riksbankens Jubileumsfond, M13-0260:1
Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2019-06-24Bibliographically approved
Frygner-Holm, S., Russ, S., Quitmann, J., Ring, L., Zyga, O., Hansson, M. G., . . . Höglund, A. T. (2019). Pretend Play as an Intervention for Children With Cancer: A Feasibility Study. Journal of Pediatric Oncology Nursing, 37(1), 65-75
Open this publication in new window or tab >>Pretend Play as an Intervention for Children With Cancer: A Feasibility Study
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2019 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 37, no 1, p. 65-75Article in journal (Refereed) Published
Abstract [en]

Children with cancer suffer from symptoms and burdensome treatments that often cause distress to children and their families. Mortality is one aspect of cancer diagnosis, while another is the quality of life and well-being during and after the treatment. By supporting children's communication, self-efficacy and coping ability in the care situation, children are given the possibilities for increased independence and participation and are allowed to develop an influence over their care. The aim of this study was to develop and evaluate the feasibility and acceptability of an adult-facilitated pretend play intervention for children with cancer. Five children with ongoing treatment for cancer were invited to a play intervention that consisted of six to eight sessions of structured pretend play aimed at increasing participation, independence, and well-being. A mixed method design was used to evaluate the feasibility and acceptability of the play intervention. Measures were collected before and after interventions, and in conjunction with every play session. Results suggest that the children enjoyed the play intervention. Findings indicate small improvements regarding self-efficacy in care situations and equal or increased quality of life for participants. A main finding was that no adverse events or increased worrying was reported in conjunction with play sessions. Therefore, the intervention is regarded as safe, feasible, and acceptable as reported by participants and their primary caregivers and a possible means of increasing participation and independence in children with a cancer diagnosis.

Keywords
Intervention, pediatric oncology, pretend play, self-efficacy
National Category
Cancer and Oncology Pediatrics
Research subject
Oncology; Pediatrics; Psychology
Identifiers
urn:nbn:se:uu:diva-399071 (URN)10.1177/1043454219874695 (DOI)000498992800006 ()31540566 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, PR2013-0123
Available from: 2019-12-12 Created: 2019-12-12 Last updated: 2020-01-08Bibliographically approved
Viberg, J., Langenskiöld, S., Segerdahl, P., Hansson, M. G., Hösterey, U. U., Gummesson, A. & Veldwijk, J. (2019). Research participants' preferences for receiving genetic risk information: a discrete choice experiment. Genetics in Medicine, 21(10), 2381-2389
Open this publication in new window or tab >>Research participants' preferences for receiving genetic risk information: a discrete choice experiment
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2019 (English)In: Genetics in Medicine, ISSN 1098-3600, E-ISSN 1530-0366, Vol. 21, no 10, p. 2381-2389Article in journal (Refereed) Published
Abstract [en]

Purpose: This study aims to determine research participants’ preferences for receiving genetic risk information when participating in a scientific study that uses genome sequencing.

Methods: A discrete choice experiment questionnaire was sent to 650 research participants (response rate 60.5%). Four attributes were selected for the questionnaire: type of disease, disease penetrance probability, preventive opportunity, and effectiveness of the preventive measure. Panel mixed logit models were used to determine attribute level estimates and the heterogeneity in preferences. Relative importance of the attribute and the predicted uptake for different information scenarios were calculated from the estimates. In addition, this study estimates predicted uptake for receiving genetic risk information in different scenarios.

Results: All characteristics influenced research participants’ willingness to receive genetic risk information. The most important characteristic was the effectiveness of the preventive opportunity. Predicted uptake ranged between 28% and 98% depending on what preventive opportunities and levels of effectiveness were presented.

Conclusion: Information about an effective preventive measure was most important for participants. They valued that attribute twice as much as the other attributes. Therefore, when there is an effective preventive measure, risk communication can be less concerned with the magnitude of the probability of developing disease.

 

Keywords
secondary findings, incidental findings, genetic risk information, research participants, preferences for genetic risk information
National Category
Public Health, Global Health, Social Medicine and Epidemiology Medical Genetics
Identifiers
urn:nbn:se:uu:diva-385799 (URN)10.1038/s41436-019-0511-4 (DOI)000488530100028 ()30992550 (PubMedID)
Funder
Riksbankens Jubileumsfond, PR2013-0123EU, FP7, Seventh Framework Programme, 305444Swedish Research CouncilSwedish Heart Lung Foundation
Available from: 2019-06-17 Created: 2019-06-17 Last updated: 2019-10-30Bibliographically approved
Grauman, Å., Hansson, M. G., Puranen, A., James, S. & Veldwijk, J. (2019). Short-term mental distress in research participants after receiving cardiovascular risk information. PLoS ONE, 14(5), Article ID e0217247.
Open this publication in new window or tab >>Short-term mental distress in research participants after receiving cardiovascular risk information
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2019 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 5, article id e0217247Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Understanding of how cardiovascular risk information influence individuals is critical for the practice of risk assessment and the management of patients with cardiovascular disease.

OBJECTIVES: The objective of this study was to investigate change in mental distress among research participants after undergoing a cardiovascular risk assessment and receiving individual test results.

METHODS: In 2017, a questionnaire measuring mental distress after taking part in a risk assessment was distributed among 615 participants in the Swedish Cardiopulmonary Bio Image Study in Uppsala, Sweden, aged 50-64 years. Outcome measures were re-assessed after three months (30% were lost to follow-up).

RESULTS: There were no differences in outcomes after three months for participants with normal test results or for participants who were referred to primary health care. Mental distress increased in participants who were referred to the hospital, and were further explained by the fact that these participants were diagnosed with coronary artery stenosis.

CONCLUSIONS: CV risk information can be provided to individuals with lower levels of risk without concerns of inducing mental distress. However, in order to prevent unnecessary worry in contexts similar to this study, one should be prepared for different risk outcomes and plan for support for individuals with higher risk. The increased utility of powerful, yet not fully mature, imaging techniques requires careful considerations extending beyond medical risks and benefits; the clinician must also take into account the risk of mental distress and secure support when necessary.

Place, publisher, year, edition, pages
PUBLIC LIBRARY SCIENCE, 2019
Keywords
cardiovascular risk information, mental distress, health examinations, research participants
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:uu:diva-384225 (URN)10.1371/journal.pone.0217247 (DOI)000468865700025 ()31125371 (PubMedID)
Funder
Swedish Heart Lung Foundation
Available from: 2019-05-31 Created: 2019-05-31 Last updated: 2019-06-24Bibliographically approved
Matar, A., Hansson, M. G. & Höglund, A. T. (2019). Values and value conflicts in implementation and use of preconception expanded carrier screening: an expert interview study. BMC Medical Ethics, 20, Article ID 25.
Open this publication in new window or tab >>Values and value conflicts in implementation and use of preconception expanded carrier screening: an expert interview study
2019 (English)In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 20, article id 25Article in journal (Refereed) Published
Abstract [en]

Background: 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 pregnancy. A test may screen for carrier status of several autosomal recessive diseases and X-linked at one go. The technique has been piloted in the Netherlands and is discussed in other countries. The aim of the study was to examine values and value conflicts that healthcare experts recounted in relation to the discussion of implementation and use of preconception ECS in Sweden.

Methods: We interviewed ten experts, who were associated with influencing health policymaking in Sweden. We employed systematizing expert interviews, which endeavor to access experts' specialist knowledge. There were four female and six male informants, of which four were physicians, three bioethicists, one a legal expert, one a theologian and one a political party representative in the parliament. The participants functioned as members of two non-governmental bodies and three governmental organizations. We employed thematic analysis to identify themes, categories and subcategories.

Results: Two main themes surfaced: values and value conflicts. The main categories of Respect for persons, Solidarity, Human dignity, Do no harm, Health and Love formed the first theme, while values conflicting with autonomy and integrity respectively, constituted the second theme. Concepts relating to respect for persons were the most commonly mentioned among the participants, followed by notions alluding to solidarity. Furthermore, respondents discussed values conflicting with Swedish healthcare ones such as equality and solidarity.

Conclusions: The experts highlighted values and concepts that are distinctive of welfare states such as Sweden and delineated how preconception ECS could challenge such values. Moreover, the analysis revealed that certain values were deemed more substantive than others, judging by the extent and detail of inference; for example, respect for persons and solidarity were on top of the list.

Keywords
Moral values; intrinsic and extrinsic values; preconception expanded carrier screening; respect for persons; Solidarity; human dignity.
National Category
Other Medical Biotechnology
Identifiers
urn:nbn:se:uu:diva-366366 (URN)10.1186/s12910-019-0362-1 (DOI)000465408300001 ()31014326 (PubMedID)
Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2019-05-10Bibliographically approved
Renzi, C., Provencal, N., Bassil, K. C., Evers, K., Kihlbom, U., Radford, E. J., . . . Rutten, B. P. (2018). From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health.. Progress in Molecular Biology and Translational Science, 158, 299-323
Open this publication in new window or tab >>From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health.
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2018 (English)In: Progress in Molecular Biology and Translational Science, ISSN 1877-1173, E-ISSN 1878-0814, Vol. 158, p. 299-323Article, review/survey (Refereed) Published
Abstract [en]

The development of mental disorders constitutes a complex phenomenon driven by unique social, psychological and biological factors such as genetics and epigenetics, throughout an individual's life course. Both environmental and genetic factors have an impact on mental health phenotypes and act simultaneously to induce changes in brain and behavior. Here, we describe and critically evaluate the current literature on gene-environment interactions and epigenetics on mental health by highlighting recent human and animal studies. We furthermore review some of the main ethical and social implications concerning gene-environment interactions and epigenetics and provide explanations and suggestions on how to move from statistical and epigenetic associations to biological and psychological explanations within a multi-disciplinary and integrative approach of understanding mental health.

Keywords
Brain development, Environment, Epidemiology, Epigenetics, Genetics, Gene–environment interactions, Mental disorders, Mental health, Neuronal epigenesis
National Category
Medical Genetics
Identifiers
urn:nbn:se:uu:diva-372312 (URN)10.1016/bs.pmbts.2018.04.011 (DOI)000452377300013 ()30072059 (PubMedID)
Available from: 2019-01-07 Created: 2019-01-07 Last updated: 2019-01-17Bibliographically approved
Hansson, M. G., Bouder, F. & Howard, H. C. (2018). Genetics and risk - an exploration of conceptual approaches to genetic risk. Journal of Risk Research, 21(2), 101-108
Open this publication in new window or tab >>Genetics and risk - an exploration of conceptual approaches to genetic risk
2018 (English)In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 101-108Article in journal, Editorial material (Other academic) Published
National Category
Social Sciences Medical Ethics Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:uu:diva-347113 (URN)10.1080/13669877.2017.1382562 (DOI)000419609100001 ()
Funder
Riksbankens Jubileumsfond, M13-0260:1
Available from: 2018-03-26 Created: 2018-03-26 Last updated: 2018-03-26Bibliographically approved
Viberg, J., Segerdahl, P., Hösterey Ugander, U., Hansson, M. G. & Langenskiöld, S. (2018). Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research. Patient Education and Counseling, 101(3), 422-427
Open this publication in new window or tab >>Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research
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2018 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, no 3, p. 422-427Article in journal (Refereed) Published
Abstract [en]

Objective

It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information?

Method

A phenomenographic approach was chosen to explore research participants’ understanding and assessment of genetic risk. We conducted four focus-group (N = 16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease.

Results

Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead.

Conclusion

Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making.

Practical implications

Risk communication may be enhanced by tailoring the communication to the participants’ own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.

Keywords
Lay understanding; Conception of genetic risk; Making sense of genetic risk in research; Genetic risk communication
National Category
Medical Genetics
Identifiers
urn:nbn:se:uu:diva-330221 (URN)10.1016/j.pec.2017.09.009 (DOI)000427826300007 ()
Available from: 2017-09-27 Created: 2017-09-27 Last updated: 2018-08-01Bibliographically approved
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