uu.seUppsala University Publications
Change search
Link to record
Permanent link

Direct link
BETA
Hansson, Mats G.
Alternative names
Publications (10 of 97) Show all publications
Matar, A., Höglund, A. T. & Hansson, M. G. (2018). “A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening. Journal of Community Genetics
Open this publication in new window or tab >>“A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening
2018 (English)In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001Article 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.

Place, publisher, year, edition, pages
Springer, 2018
Keywords
Preconception Expanded carrier screening Genetic Policymakers Reproductive decision-making Ethics Social effects
National Category
Other Medical Biotechnology Other Health Sciences
Identifiers
urn:nbn:se:uu:diva-362390 (URN)10.1007/s12687-018-0389-x (DOI)
Available from: 2018-10-04 Created: 2018-10-04 Last updated: 2018-11-01Bibliographically 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
Show others...
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
Schölin Bywall, K., Veldwijk, J., Hansson, M. G. & Kihlbom, U. (2018). Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis. the patient - patient-centered outcomes research, Article ID https://doi.org/10.1007/s40271-018-0344-2.
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
2018 (English)In: the patient - patient-centered outcomes research, ISSN 1178-1653, article id https://doi.org/10.1007/s40271-018-0344-2Article 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 and Health Sciences
Identifiers
urn:nbn:se:uu:diva-366354 (URN)10.1007/s40271-018-0344-2 (DOI)
Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2018-12-06
Bayliss, K., Raza, K., Simons, G., Falahee, M., Hansson, M. G., Starling, B. & Stack, R. (2018). Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease: a meta-synthesis of qualitative studies. Journal of Risk Research, 21(2), 167-189
Open this publication in new window or tab >>Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease: a meta-synthesis of qualitative studies
Show others...
2018 (English)In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 167-189Article in journal (Refereed) Published
Abstract [en]

Background: The availability of tests to predict the risk of developing chronic diseases is increasing. The identification of individuals at high risk of disease can trigger early intervention to reduce the risk of disease and its severity. In order for predictive tests to be accepted and used by those at risk, there is a need to understand people's perceptions of predictive testing.

Method: A meta-synthesis of qualitative research that explored patient and public perceptions of predictive testing for chronic inflammatory diseases was conducted. Studies were coded by researchers and patient research partners, and then organised into common themes associated with the acceptability or use of predictive testing.

Results: Perceived barriers to predictive testing were identified, including a concern about a lack of confidentiality around the use of risk information; a lack of motivation for change; poor communication of information; and a possible impact on emotional well-being. In order to reduce these barriers, the literature shows that a patient-centred approach is required at each stage of the testing process. This includes the consideration of individual needs, such as accessibility and building motivation for change; readily available and easy to understand pre and post-test information; support for patients on how to deal with the implications of their results; and the development of condition specific lifestyle intervention programmes to facilitate sustainable lifestyle changes.

Conclusion: Patients and members of the public had some concerns about predictive testing; however, a number of strategies to reduce barriers and increase acceptability are available. Further research is required to inform the development of a resource that supports the individual to make an informed decision about whether to engage in a predictive test, what test results mean, and how to access post-test support.

Place, publisher, year, edition, pages
ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD, 2018
Keywords
chronic disease, predictive testing, perceptions, risk, qualitative research, synthesis
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-341315 (URN)10.1080/13669877.2015.1119183 (DOI)000419609100005 ()
Funder
EU, FP7, Seventh Framework Programme, FP7-HEALTH-F2-2012-305549Riksbankens Jubileumsfond, M13-0260:1
Available from: 2018-02-09 Created: 2018-02-09 Last updated: 2018-02-09Bibliographically approved
de Bekker-Grob, E., Berlin, C., Levitan, B., Raza, K., Christoforidi, K., Cleemput, I., . . . Hansson, M. G. (2017). Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project. Patient, 10(3), 263-266
Open this publication in new window or tab >>Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project
Show others...
2017 (English)In: Patient, ISSN 1178-1653, E-ISSN 1178-1661, Vol. 10, no 3, p. 263-266Article in journal, Editorial material (Refereed) Published
Place, publisher, year, edition, pages
Springer, 2017
Keywords
Outcomes research, patients, drug developmetn, life-cycle, preferences
National Category
Social Sciences Interdisciplinary Medical and Health Sciences Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Social Pharmacy
Identifiers
urn:nbn:se:uu:diva-317971 (URN)10.1007/s40271-017-0222-3 (DOI)000401162700001 ()28247251 (PubMedID)
Projects
IMI-PREFER
Funder
EU, Horizon 2020, 115966
Available from: 2017-03-22 Created: 2017-03-22 Last updated: 2018-01-13Bibliographically approved
Falahee, M., Simons, G., Buckley, C. D., Hansson, M. G., Stack, R. J. & Raza, K. (2017). Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation. Arthritis care & research, 69(10), 1558-1565
Open this publication in new window or tab >>Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation
Show others...
2017 (English)In: Arthritis care & research, ISSN 2151-464X, E-ISSN 2151-4658, Vol. 69, no 10, p. 1558-1565Article in journal (Refereed) Published
Abstract [en]

Objective: To understand the perspectives of patients with rheumatoid arthritis (RA) about the risk of their relatives developing RA in the future, and about communicating with their relatives concerning risk and its modulation.

Methods: Twenty-one RA patients took part in semistructured interviews.

Results: Participants reported willingness to communicate with relatives about their risk of developing RA, but described choosing which relatives to communicate with, on the basis of the relatives' perceived receptivity to such risk information. Participants described the potential for risk information to cause negative emotions. Some participants did not consider RA to be hereditable, and few reported smoking as a risk factor. Patients described a lack of public awareness about the causes of RA and the negative impact that RA has on the quality of life. Awareness of this negative impact was identified as an important driver for predictive and preventive strategies. Participants held positive perceptions of predictive testing for RA, though the results of predictive tests were conceptualized as having a high degree of accuracy. Negative views of predictive testing were associated with an appreciation of the probabilistic nature of risk information. Participants felt that their relatives would prefer lifestyle modification over medication as a risk reduction strategy.

Conclusion: Information about risk factors for RA, and the potential impact of RA on the quality of life, is needed to support family communication about RA risk. Management of expectations is needed in relation to the probabilistic nature of risk information, and appropriate support should be provided for negative psychological outcomes.

Place, publisher, year, edition, pages
WILEY, 2017
National Category
Rheumatology and Autoimmunity
Identifiers
urn:nbn:se:uu:diva-336436 (URN)10.1002/acr.23179 (DOI)000411811900013 ()27998043 (PubMedID)
Funder
Riksbankens Jubileumsfond, M13-0260:1EU, FP7, Seventh Framework Programme, FP7-HEALTH-F2-2012-305549
Available from: 2017-12-14 Created: 2017-12-14 Last updated: 2017-12-14Bibliographically approved
Schölin Bywall, K., Veldwijk, J., Hansson, M. G. & Kihlbom, U. (2017). Rheumatoid Arthritis Patients’ Perspectives On The Value Of Patient Preferences In Regulatory Decision-Making During Drug Development: A Qualitative Study. Value in Health, 20(9), A540-A540
Open this publication in new window or tab >>Rheumatoid Arthritis Patients’ Perspectives On The Value Of Patient Preferences In Regulatory Decision-Making During Drug Development: A Qualitative Study
2017 (English)In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 20, no 9, p. A540-A540Article in journal, Meeting abstract (Other academic) Published
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-345691 (URN)10.1016/j.jval.2017.08.801 (DOI)000413599901148 ()
Projects
IMI-PREFER
Available from: 2018-03-16 Created: 2018-03-16 Last updated: 2018-10-04Bibliographically approved
Oliveri, S., Howard, H. C., Renzi, C., Hansson, M. . & Pravettoni, G. (2016). Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?. Journal of Medical Genetics, 53(12), 798-799
Open this publication in new window or tab >>Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?
Show others...
2016 (English)In: Journal of Medical Genetics, ISSN 0022-2593, E-ISSN 1468-6244, Vol. 53, no 12, p. 798-799Article in journal, Editorial material (Refereed) Published
National Category
Medical Ethics Medical Genetics
Identifiers
urn:nbn:se:uu:diva-316212 (URN)10.1136/jmedgenet-2016-104184 (DOI)000391457200002 ()27647845 (PubMedID)
Available from: 2017-02-27 Created: 2017-02-27 Last updated: 2018-01-13Bibliographically approved
Silén, M., Ramklint, M., Hansson, M. G. & Haglund, K. (2016). Ethics rounds: An appreciated form of ethics support. Nursing Ethics, 23(2), 203-213
Open this publication in new window or tab >>Ethics rounds: An appreciated form of ethics support
2016 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 23, no 2, p. 203-213Article in journal (Refereed) Published
Abstract [en]

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 understanding of how the ethics rounds were experienced and why the intervention in the form of ethics rounds did not succeed in improving the ethical climate for the staff.RESEARCH DESIGN:An exploratory and descriptive design with a qualitative approach was adopted, using individual interviews.

RESEARCH DESIGN: An exploratory and descriptive design with a qualitative approach was adopted, using individual interviews.

PARTICIPANTS AND RESEARCH CONTEXT: A total of 11 healthcare personnel, working in two different psychiatry outpatient clinics and with experience of participating in ethics rounds, were interviewed.

ETHICAL CONSIDERATIONS: The study was based on informed consent and was approved by one of the Swedish Regional Ethical Review Boards.

FINDINGS: The participants were generally positive about the ethics rounds. They had experienced changes by participating in the ethics rounds in the form of being able to see things from different perspectives as well as by gaining insight into ethical issues. However, these changes had not affected daily work.

DISCUSSION: A crucial question is whether or not increased reflection ability among the participants is a good enough outcome of ethics rounds and whether this result could have been measured in patient-related outcomes. Ethics rounds might foster cooperation among the staff and this, in turn, could influence patient care.

CONCLUSION: By listening to others during ethics rounds, a person can learn to see things from a new angle. Participation in ethics rounds can also lead to better insight concerning ethical issues.

National Category
Ethics
Research subject
Caring Sciences
Identifiers
urn:nbn:se:uu:diva-244888 (URN)10.1177/0969733014560930 (DOI)000372636200008 ()25527354 (PubMedID)
Funder
AFA Insurance
Available from: 2015-02-23 Created: 2015-02-23 Last updated: 2017-12-04Bibliographically approved
Organisations

Search in DiVA

Show all publications