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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
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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
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
Viberg, J., Hansson, M. G., Langenskiöld, S. & Segerdahl, P. (2015). Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks. In: Mascalzoni, Deborah (Ed.), Ethics, Law and Governance of Biobanking: National, European and International Approaches. Springer.
Open this publication in new window or tab >>Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
2015 (English)In: Ethics, Law and Governance of Biobanking: National, European and International Approaches / [ed] Mascalzoni, Deborah, Springer, 2015Chapter in book (Refereed)
Place, publisher, year, edition, pages
Springer, 2015
Series
International Library of Ethics Law and Technology, ISSN 1875-0044 ; 14
National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-244975 (URN)9789401795739 (ISBN)
Available from: 2015-02-23 Created: 2015-02-23 Last updated: 2016-08-08Bibliographically approved
Segerdahl, P. (2015). The rhetoric and prose of the human/animal contrast. Language & Communication, 42, 36-49.
Open this publication in new window or tab >>The rhetoric and prose of the human/animal contrast
2015 (English)In: Language & Communication, ISSN 0271-5309, E-ISSN 1873-3395, Vol. 42, 36-49 p.Article in journal (Refereed) Published
Abstract [en]

The opposition in philosophy between humans as thinkers and animals as non-thinkers is often considered to stem from anthropocentrism. In this paper I try to demonstrate that philosophers don't really place "us" at the centre, but rather their own thinking and the philosophical language they develop as thinkers. The human/animal contrast functions rhetorically to communicate that philosophical self-centredness to an audience that recognises itself as "human." I try to dismantle the contrast between humans and animals by exposing what I see as its true core: forgetfulness of how philosophical language (and thinking in that language) is generated by idealisation and sublimation of the reflexive uses of language.

Keyword
Rationality, Reflexivity, Philosophy, Humans, Animals
National Category
General Language Studies and Linguistics Communication Studies
Identifiers
urn:nbn:se:uu:diva-253240 (URN)10.1016/j.langcom.2015.03.001 (DOI)000353855700005 ()
Available from: 2015-06-17 Created: 2015-05-25 Last updated: 2018-01-11Bibliographically approved
Segerdahl, P. (2014). Being humans when we are animals. Nordic Wittgenstein Review, 3(2), 125-149.
Open this publication in new window or tab >>Being humans when we are animals
2014 (English)In: Nordic Wittgenstein Review, ISSN 2194-6825, E-ISSN 2242-248X, ISSN 2242-248X, Vol. 3, no 2, 125-149 p.Article in journal (Refereed) Published
Abstract [en]

This paper investigates forms of metaphysical vertigo that can appear when contrasts between humans and animals are challenged. Distinguishing three forms of vertigo and four ways of differentiating humans and animals, the paper attempts to achieve a perspicuous representation of what could be termed “the difficulty of being humans when we are animals”; or alternatively, “the difficulty of being animals when we are humans”.

Keyword
human-animal contrast; metaphysical vertigo; biology; moral sensitivity; ape language
National Category
Philosophy
Research subject
Theoretical Philosophy
Identifiers
urn:nbn:se:uu:diva-239189 (URN)
Projects
Becoming human: animals and gender theory in a more than human world
Funder
Swedish Research Council, 344-2011-5099
Available from: 2014-12-19 Created: 2014-12-19 Last updated: 2017-12-05
Viberg, J., Hansson, M. G., Langenskiöld, S. & Segerdahl, P. (2014). Incidental findings: the time is not yet ripe for a policy for biobanks. European Journal of Human Genetics, 22(4), 437-441.
Open this publication in new window or tab >>Incidental findings: the time is not yet ripe for a policy for biobanks
2014 (English)In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 22, no 4, 437-441 p.Article in journal (Refereed) Published
Abstract [en]

Incidental findings (IFs) are acknowledged to be among the most important ethical issues to consider in biobank research. Genome-wide association studies and disease-specific genetic research might reveal information about individual participants that are not related to the research purpose, but may be relevant to those participants' future health. In this article, we provide a synopsis of arguments for and against the disclosure of IFs in biobank research. We argue that arguments that do not distinguish between communications about pathogenic conditions and complex genetic risk for diseases fail, as preferences and decisions may be far more complex in the latter case. The principle of beneficence, for example, often supports the communication of incidentally discovered diseases, but if communication of risk is different, the beneficence of such communication is not equally evident. By conflating the latter form of communication with the former, the application of ethical principles to IFs in biobank research sometimes becomes too easy and frictionless. Current empirical surveys of people's desire to be informed about IFs do not provide sufficient guidance because they rely on the same notion of risk communication as a form of communication about actual health and disease. Differently designed empirical research and more reflection on biobank research and genetic risk information is required before ethical principles can be applied to support the adoption of a reasonable and comprehensive policy for handling IFs.

National Category
Medical Genetics Medical Biotechnology (with a focus on Cell Biology (including Stem Cell Biology), Molecular Biology, Microbiology, Biochemistry or Biopharmacy)
Identifiers
urn:nbn:se:uu:diva-223871 (URN)10.1038/ejhg.2013.217 (DOI)000332938400008 ()24065111 (PubMedID)
Funder
EU, European Research CouncilSwedish Research Council
Available from: 2014-05-09 Created: 2014-04-28 Last updated: 2018-01-11Bibliographically approved
Segerdahl, P. (2014). Thinking about ethics: A collection of reflections from the Ethics Blog. Uppsala: Centre for Research Ethics and Bioethics, Uppsala University.
Open this publication in new window or tab >>Thinking about ethics: A collection of reflections from the Ethics Blog
2014 (English)Book (Other (popular science, discussion, etc.))
Place, publisher, year, edition, pages
Uppsala: Centre for Research Ethics and Bioethics, Uppsala University, 2014. 111 p.
National Category
Medical and Health Sciences
Research subject
Ethics
Identifiers
urn:nbn:se:uu:diva-280730 (URN)978-91-506-2433-5 (ISBN)
Available from: 2016-03-14 Created: 2016-03-14 Last updated: 2017-09-21Bibliographically approved
Segerdahl, P. (2014). Tänker om etik: En samling reflektioner från Etikbloggen. Uppsala: Centrum för forsknings- och bioetik, Uppsala universitet.
Open this publication in new window or tab >>Tänker om etik: En samling reflektioner från Etikbloggen
2014 (Swedish)Book (Other (popular science, discussion, etc.))
Place, publisher, year, edition, pages
Uppsala: Centrum för forsknings- och bioetik, Uppsala universitet, 2014. 103 p.
National Category
Medical and Health Sciences
Research subject
Ethics
Identifiers
urn:nbn:se:uu:diva-280726 (URN)978-91-506-2434-2 (ISBN)
Available from: 2016-03-14 Created: 2016-03-14 Last updated: 2017-09-21Bibliographically approved
Segerdahl, P. (2013). Gender, Language and Philosophical Reconciliation: What Does Judith Butler Destabilize?. In: Ylva Gustafsson, Camilla Kronqvist, Hannes Nyan1n (Ed.), Ethics and the Philosophy of Culture: Wittgensteinian Approaches (pp. 172-211). Newcastle: Cambridge Scholars Publishing.
Open this publication in new window or tab >>Gender, Language and Philosophical Reconciliation: What Does Judith Butler Destabilize?
2013 (English)In: Ethics and the Philosophy of Culture: Wittgensteinian Approaches / [ed] Ylva Gustafsson, Camilla Kronqvist, Hannes Nyan1n, Newcastle: Cambridge Scholars Publishing, 2013, 172-211 p.Chapter in book (Other academic)
Place, publisher, year, edition, pages
Newcastle: Cambridge Scholars Publishing, 2013
National Category
Humanities
Research subject
Practical Philosophy
Identifiers
urn:nbn:se:uu:diva-214288 (URN)1443843229 (ISBN)978-1443843225 (ISBN)
Projects
Genna
Funder
Swedish Research Council
Available from: 2014-01-08 Created: 2014-01-08 Last updated: 2014-01-08
Segerdahl, P. (2012). Human-Enculturated Apes: Towards a New Sythesis of Philosophy and Comparative Psychology. In: Birke, L. and Hockenhull, J. (Ed.), Crossing Boundaries: Investigating Human-Animal Relationships (pp. 139-160). Leiden and Boston: Brill Academic Publishers.
Open this publication in new window or tab >>Human-Enculturated Apes: Towards a New Sythesis of Philosophy and Comparative Psychology
2012 (English)In: Crossing Boundaries: Investigating Human-Animal Relationships / [ed] Birke, L. and Hockenhull, J., Leiden and Boston: Brill Academic Publishers, 2012, 139-160 p.Chapter in book (Other academic)
Place, publisher, year, edition, pages
Leiden and Boston: Brill Academic Publishers, 2012
Series
Human-Animal Studies, ISSN 1573-4226 ; 14
National Category
Philosophy, Ethics and Religion
Research subject
Theoretical Philosophy
Identifiers
urn:nbn:se:uu:diva-269616 (URN)978 90 04 23145 0 (ISBN)978 90 04 23304 1 (ISBN)
Available from: 2015-12-17 Created: 2015-12-17 Last updated: 2017-02-02
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-5208-999X

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