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Dynamic Consent : a potential solution to some of the challenges of modern biomedical research

Budin-Ljosne, Isabelle (author)
Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway.
Teare, Harriet J. A. (author)
Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England.
Kaye, Jane (author)
Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England.
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Beck, Stephan (author)
UCL, UCL Canc Inst, London, England.
Bentzen, Heidi Beate (author)
Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway.;Univ Oslo, Norwegian Res Ctr Comp & Law, Fac Law, Oslo, Norway.
Caenazzo, Luciana (author)
Univ Padua, Padua, Italy.
Collett, Clive (author)
Hlth Res Author, London, England.
D'Abramo, Flavio (author)
Free Univ Berlin, Focus Area DynAge, Berlin, Germany.
Felzmann, Heike (author)
NUI Galway, Ctr Bioeth Res & Anal, Galway, Ireland.
Finlay, Teresa (author)
Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England.
Javaid, Muhammad Kassim (author)
Univ Oxford, Nuffield Dept Orthopaed Rheumatol & Musculoskelet, NIHR Musculoskeletal Biomed Res Unit, Oxford, England.
Jones, Erica (author)
UCL, UCL Canc Inst, London, England.
Katic, Visnja (author)
Univ Rijeka, Sch Med, Rijeka, Croatia.
Simpson, Amy (author)
Genet Alliance UK, London, England.
Mascalzoni, Deborah (author)
Uppsala universitet,Centrum för forsknings- och bioetik,EURAC, Ctr Biomed, Bolzano, Italy.
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Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway. Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England. (creator_code:org_t)
2017-01-25
2017
English.
In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939 .- 1472-6939. ; 18
  • Journal article (peer-reviewed)
Abstract Subject headings
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  • Background: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. Methods: An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. Results: Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. Conclusions: Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Medicinsk etik (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Medical Ethics (hsv//eng)

Keyword

Dynamic consent
Participant engagement
Research communication
Ethics
Biobank
Clinical trials
Clinical research
Software tools

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ref (subject category)
art (subject category)

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