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The challenges of the expanded availability of genomic information: an agenda-setting paper

Authors
  • Borry, Pascal1, 2, 3
  • Bentzen, Heidi Beate4, 5, 6
  • Budin-Ljøsne, Isabelle6, 7, 8
  • Cornel, Martina C.9
  • Howard, Heidi Carmen10
  • Feeney, Oliver11
  • Jackson, Leigh12
  • Mascalzoni, Deborah10, 13
  • Mendes, Álvaro14
  • Peterlin, Borut15
  • Riso, Brigida16
  • Shabani, Mahsa1, 2
  • Skirton, Heather17
  • Sterckx, Sigrid18
  • Vears, Danya1, 2
  • Wjst, Matthias19, 20
  • Felzmann, Heike11
  • 1 KU Leuven, Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, Leuven, Belgium , Leuven (Belgium)
  • 2 Leuven Institute for Human Genomics and Society, Leuven, 3000, Belgium , Leuven (Belgium)
  • 3 University of Leuven, Faculty of Medicine, Leuven, Belgium , Leuven (Belgium)
  • 4 University of Oslo, Centre for Medical Ethics, Faculty of Medicine, Oslo, Norway , Oslo (Norway)
  • 5 University of Oslo, Norwegian Research Center for Computers and Law, Faculty of Law, Oslo, Norway , Oslo (Norway)
  • 6 Norwegian Cancer Genomics Consortium, Oslo, Norway , Oslo (Norway)
  • 7 University of Oslo, Centre for Medical Ethics, Institute of Health and Society, P.O Box 1130, Blindern, Oslo, 0318, Norway , Oslo (Norway)
  • 8 Cohort Studies, Norwegian Institute of Public Health, Oslo, Norway , Oslo (Norway)
  • 9 VU University Medical Center, Department of Clinical Genetics, Section of Community Genetics, Amsterdam Public Health Research Institute, Amsterdam, the Netherlands , Amsterdam (Netherlands)
  • 10 Uppsala University, Centre for Research Ethics and Bioethics, Uppsala, Sweden , Uppsala (Sweden)
  • 11 National University of Ireland (Galway), Centre of Bioethical Research and Analysis (COBRA), Galway, Republic of Ireland , Galway (Ireland)
  • 12 University of Exeter Medical School, RILD Building, Royal Devon and Exeter Hospital, Exeter, UK , Exeter (United Kingdom)
  • 13 EURAC Research, Bolzano, Italy , Bolzano (Italy)
  • 14 Universidade do Porto, i3S, Instituto de Investigação e Inovação em Saúde, IBMC-UnIGENe and Centre for Predictive and Preventive Genetics, Porto, Portugal , Porto (Portugal)
  • 15 University Medical Center Ljubljana, Clinical Institute of Medical Genetics, Šlajmerjeva 4, Ljubljana, 1000, Slovenia , Ljubljana (Slovenia)
  • 16 Instituto Universitário de Lisboa (ISCTE-IUL), CIES-IUL, Lisbon, Portugal , Lisbon (Portugal)
  • 17 University of Plymouth, Faculty of Health and Human Sciences, Drake Circus, Plymouth, PL4 8AA, UK , Plymouth (United Kingdom)
  • 18 Ghent University, Bioethics Institute Ghent, Blandijnberg 2, Ghent, 9000, Belgium , Ghent (Belgium)
  • 19 Institute of Lung Biology and Disease, Helmholtz Center Munich, National Research Centre for Environmental Health, Munich, Germany , Munich (Germany)
  • 20 Technical University Munich, Institute of Medical Statistics, Epidemiology and Medical Informatics, Munich, Germany , Munich (Germany)
Type
Published Article
Journal
Journal of Community Genetics
Publisher
Springer Berlin Heidelberg
Publication Date
Sep 26, 2017
Volume
9
Issue
2
Pages
103–116
Identifiers
DOI: 10.1007/s12687-017-0331-7
Source
Springer Nature
Keywords
License
Green

Abstract

Rapid advances in microarray and sequencing technologies are making genotyping and genome sequencing more affordable and readily available. There is an expectation that genomic sequencing technologies improve personalized diagnosis and personalized drug therapy. Concurrently, provision of direct-to-consumer genetic testing by commercial providers has enabled individuals’ direct access to their genomic data. The expanded availability of genomic data is perceived as influencing the relationship between the various parties involved including healthcare professionals, researchers, patients, individuals, families, industry, and government. This results in a need to revisit their roles and responsibilities. In a 1-day agenda-setting meeting organized by the COST Action IS1303 “Citizen’s Health through public-private Initiatives: Public health, Market and Ethical perspectives,” participants discussed the main challenges associated with the expanded availability of genomic information, with a specific focus on public-private partnerships, and provided an outline from which to discuss in detail the identified challenges. This paper summarizes the points raised at this meeting in five main parts and highlights the key cross-cutting themes. In light of the increasing availability of genomic information, it is expected that this paper will provide timely direction for future research and policy making in this area.

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