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

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Centre for Gender Research.
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: urn:nbn:se:uu:diva-244975ISBN: 9789401795739 (print)OAI: oai:DiVA.org:uu-244975DiVA, id: diva2:790166
Available from: 2015-02-23 Created: 2015-02-23 Last updated: 2018-08-01Bibliographically approved
In thesis
1. INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences
Open this publication in new window or tab >>INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis contributes to the ethical discussion on how to handle incidental findings in biomedical research using sequencing technologies from a theoretical and an empirical perspective. Study I and II are theoretical studies that used conceptual analysis. Study I demonstrates that the argument for disclosure based on the principle of beneficence ignores the complexity and uncertain predictive value of genetic risk information. The argument neglects the distinction between an incidentally discovered disease and an incidentally discovered risk for disease with unclear predictive value. Study II investigates the proposal to let participants express their preferences to incidental genetic findings in the consent form. The study argues that this freedom of choice is problematic because it is uncertain whether the opportunity to choose in the consent phase enables people to express what they truly prefer. Participants might be steered to a specific answer depending on mood, triggered feelings, and the framing of the question.

The second part of the thesis is empirical and used both a qualitative and a quantitative approach. Study III investigates research participants’ understanding of genetic risk and used a phenomenographic approach and focus group interviews. One result was that participants understood genetic risk in binary terms. This understanding involved an either/or concept of genetic risk. Participants tend not to understand genetic risk as a probability. They also interpreted the information in terms of their past, present, and future life. Study IV used a questionnaire with a stated preference technique called Discrete Choice Experiments (DCE) to investigate participants’ preferences for genetic risk information. An effective preventive measure was the most important characteristic for research participants in their decision to be given genetic risk information. When the disease was life threatening, had a high penetrance probability, and had effective preventive measures, 98% of the participants wanted to know their incidental genetic risk information.

As genetic risk information has many different characteristics and includes many uncertainties, ethical discussions and empirical studies of people’s attitudes and preferences need to explicitly engage the complexity of genetic incidental findings.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2018. p. 72
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1482
Keywords
Incidental findings, genetic risk information, research participants, risk perception, free choice, framing, conceptions of genetic risk, making sense of genetic risk, preferences for genetic risk information
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:uu:diva-356567 (URN)978-91-513-0395-6 (ISBN)
Public defence
2018-09-21, Universitetshuset, sal IX, Biskopsgatan 3, Uppsala, 09:15 (English)
Opponent
Supervisors
Available from: 2018-08-29 Created: 2018-08-01 Last updated: 2018-09-07

Open Access in DiVA

No full text in DiVA

Authority records BETA

Viberg, JenniferHansson, Mats G.Langenskiöld, SophieSegerdahl, Pär

Search in DiVA

By author/editor
Viberg, JenniferHansson, Mats G.Langenskiöld, SophieSegerdahl, Pär
By organisation
Centre for Research Ethics and BioethicsHealth EconomicsCentre for Gender Research
Medical Ethics

Search outside of DiVA

GoogleGoogle Scholar

isbn
urn-nbn

Altmetric score

isbn
urn-nbn
Total: 562 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf