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

Direct link
BETA
Hansson, M G
Alternative names
Publications (10 of 91) Show all publications
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, 263-266 p.Article in journal, Editorial material (Refereed) Published
Place, publisher, year, edition, pages
Springer, 2017
Keyword
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
Viberg, J., Segerdahl, P., Hösterey Ugander, U., Hansson, M. G. & Langenskiöld, S. (2017). Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research. Patient Education and Counseling.
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...
2017 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134Article in journal (Refereed) Epub ahead of print
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.

Keyword
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)
Available from: 2017-09-27 Created: 2017-09-27 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, 1558-1565 p.Article 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
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, 798-799 p.Article 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, 203-213 p.Article 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
Viberg, J., Segerdahl, P., Langenskiöld, S. & Hansson, M. G. (2016). Freedom of Choice about Incidental Findings can frustrate participants’ true preferences. Bioethics, 30(3), 203-209.
Open this publication in new window or tab >>Freedom of Choice about Incidental Findings can frustrate participants’ true preferences
2016 (English)In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 30, no 3, 203-209 p.Article in journal (Refereed) Published
Abstract [en]

Ethicists, regulators and researchers have struggled with the question of whether incidental findings in genomics studies should be disclosed to participants. In the ethical debate, a general consensus is that disclosed information should benefit participants. However, there is no agreement that genetic information will benefit participants, rather it may cause problems such as anxiety. One could get past this disagreement about disclosure of incidental findings by letting participants express their preferences in the consent form. We argue that this freedom of choice is problematic.

In transferring the decision to participants, it is assumed that participants will understand what they decide about and that they will express what they truly want. However, psychological findings about people's reaction to probabilities and risk have been shown to involve both cognitive and emotional challenges. People change their attitude to risk depending on what is at stake. Their mood affects judgments and choices, and they over- and underestimate probabilities depending on whether they are low or high. Moreover, different framing of the options can steer people to a specific choice.

Although it seems attractive to let participants express their preferences to incidental findings in the consent form, it is uncertain if this choice enables people to express what they truly prefer. In order to better understand the participants' preferences, we argue that future empirical work needs to confront the participant with the complexity of the uncertainty and the trade-offs that are connected with the uncertain predictive value of genetic risk information.

National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-244971 (URN)10.1111/bioe.12160 (DOI)000371487500010 ()
Funder
Riksbankens Jubileumsfond, PR2013-0123EU, FP7, Seventh Framework Programme, 305444Swedish Research CouncilSwedish Heart Lung Foundation
Available from: 2015-02-23 Created: 2015-02-23 Last updated: 2017-12-04Bibliographically approved
Hansson, M. 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. [Review]. European Journal of Human Genetics, 24(12), 1835-1835.
Open this publication in new window or tab >>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.
2016 (English)In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 24, no 12, 1835-1835 p.Article, book review (Other academic) Published
National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-317506 (URN)10.1038/ejhg.2016.123 (DOI)000394114500030 ()
Available from: 2017-04-13 Created: 2017-04-13 Last updated: 2017-11-29Bibliographically approved
Hansson, M. G., Lochmuller, H., Riess, O., Schaefer, F., Orth, M., Rubinstein, Y., . . . Woods, S. (2016). The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics, 24(11), 1553-1558.
Open this publication in new window or tab >>The risk of re-identification versus the need to identify individuals in rare disease research
Show others...
2016 (English)In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 24, no 11, 1553-1558 p.Article in journal (Refereed) Published
Abstract [en]

There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers.

National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-308903 (URN)10.1038/ejhg.2016.52 (DOI)000386690500010 ()27222291 (PubMedID)
Funder
EU, FP7, Seventh Framework Programme, 305444 305121Swedish Research CouncilAustralian Research Council, APP1055319
Available from: 2016-12-01 Created: 2016-12-01 Last updated: 2017-11-29Bibliographically approved
Hansson, M. G. (2015). Access to health data in registries and the cost of privacy concerns: introducing a privacy ombudsman while extending access to data (1ed.). In: Lind AS, Reichel J & Österdahl, I (Ed.), Information and Law in Transition: Freedom of Speech, the Internet, Privacy and Democracy in the 21st Century (pp. 325-338). Liber.
Open this publication in new window or tab >>Access to health data in registries and the cost of privacy concerns: introducing a privacy ombudsman while extending access to data
2015 (English)In: Information and Law in Transition: Freedom of Speech, the Internet, Privacy and Democracy in the 21st Century / [ed] Lind AS, Reichel J & Österdahl, I, Liber, 2015, 1, 325-338 p.Chapter in book (Refereed)
Place, publisher, year, edition, pages
Liber, 2015 Edition: 1
Keyword
ombudsman, privacy, access to data, health data, registries
National Category
Ethics
Identifiers
urn:nbn:se:uu:diva-280781 (URN)978-91-47-11215-9 (ISBN)
Available from: 2016-03-15 Created: 2016-03-15 Last updated: 2017-09-21Bibliographically approved
Grady, C., Eckstein, L., Berkman, B., Brock, D., Cook-Deegan, R., Fullerton, S. M., . . . Wendler, D. (2015). Broad Consent for Research With Biological Samples: Workshop Conclusions. American Journal of Bioethics, 15(9), 34-42.
Open this publication in new window or tab >>Broad Consent for Research With Biological Samples: Workshop Conclusions
Show others...
2015 (English)In: American Journal of Bioethics, ISSN 1526-5161, E-ISSN 1536-0075, Vol. 15, no 9, 34-42 p.Article in journal (Refereed) Published
Abstract [en]

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health (NIH) Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and timely topic.

Keyword
biomedical research, informed consent, regulatory issues, research ethics
National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-263436 (URN)10.1080/15265161.2015.1062162 (DOI)000360555700011 ()26305750 (PubMedID)
Funder
NIH (National Institute of Health)
Available from: 2015-10-07 Created: 2015-09-30 Last updated: 2017-12-01Bibliographically approved
Organisations

Search in DiVA

Show all publications