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Let the Individuals Directly Concerned Decide: A Solution to Tragic Choices in Genetic Risk Information
Univ Milan, Interdisciplinary Res Ctr Decis Making Proc IRIDe, Dept Hematol & Oncol, Via Festa del Perdono 7, IT-20122 Milan, Italy.;IEO Inst Europeo Oncol, Appl Res Unit Cognit & Psychol Sci, Milan, Italy..
Univ Milan, Interdisciplinary Res Ctr Decis Making Proc IRIDe, Dept Hematol & Oncol, Via Festa del Perdono 7, IT-20122 Milan, Italy.;IEO Inst Europeo Oncol, Appl Res Unit Cognit & Psychol Sci, Milan, Italy..
IEO Inst Europeo Oncol, Appl Res Unit Cognit & Psychol Sci, Milan, Italy..
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2016 (English)In: Public Health Genomics, ISSN 1662-4246, E-ISSN 1662-8063, Vol. 19, no 5, 307-313 p.Article in journal (Refereed) Published
Abstract [en]

Health-care systems as well as legislators and society seem largely unprepared to face and manage the massive production of genetic risk information. Ethics committees and professional bodies usually do not involve the individuals directly concerned in defining guidelines for genetic risk communication. Therefore, they do not always reflect people's needs and preferences. We argue in this article that we currently experience a cultural shift in medicine where individuals' concerns and preferences regarding genetic risk information are playing a more significant role than before, and that this should have some normative implications. We are going toward a situation where individual citizens are approached as consumers by personal genomics companies [Prainsack: Account Res 2011;18:132-147]. In clinical and research contexts, individuals are also increasingly informed about their own responsibilities for counterbalancing their genetic risk by making individual health care and lifestyle choices. In this situation, communication of genetic risk information may rather be regulated like traffic and markets in which consumers' decision-making power has a fundamental role in the management and regulation of how a service should be provided, as well as in the creation of policy and legislation. We acknowledge that markets may be different depending on different genetic conditions. For example, genetic risk communication for rare diseases, where a close relationship with clinicians is of paramount significance, should be differently regulated than personal genetic profiles of complex diseases, where contributing risk factors related to lifestyle are modifiable by the individual.

Place, publisher, year, edition, pages
2016. Vol. 19, no 5, 307-313 p.
Keyword [en]
Ethics, Genetic services market, Genetic testing, Psychosocial effects, Tragic choices
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-307462DOI: 10.1159/000448913ISI: 000384872200008PubMedID: 27603671OAI: oai:DiVA.org:uu-307462DiVA: diva2:1047330
Funder
Riksbankens Jubileumsfond
Available from: 2016-11-17 Created: 2016-11-16 Last updated: 2016-11-17Bibliographically approved

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