Literature DB >> 30864046

Genetic Data, Two-Sided Markets and Dynamic Consent: United States Versus France.

Henri-Corto Stoeklé1,2, Mauro Turrini3, Philipe Charlier4,5, Jean-François Deleuze2,6,7, Christian Hervé8, Guillaume Vogt9,10,11.   

Abstract

Networks for the exchange and/or sharing of genetic data are developing in many countries. We focus here on the situations in the US and France. We highlight some recent and remarkable differences between these two countries concerning the mode of access to, and the storage and use of genetic data, particularly as concerns two-sided markets and dynamic consent or dynamic electronic informed consent (e-IC). This brief overview suggests that, even though the organization and function of these two-sided markets remain open to criticism, dynamic e-IC should be more widely used, especially in France, if only to determine its real effectiveness.

Keywords:  Dynamic e-IC; Genetic data; Two-sided market

Mesh:

Year:  2019        PMID: 30864046     DOI: 10.1007/s11948-019-00085-4

Source DB:  PubMed          Journal:  Sci Eng Ethics        ISSN: 1353-3452            Impact factor:   3.525


  12 in total

Review 1.  Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective.

Authors:  Béatrice Godard; Jörg Schmidtke; Jean-Jacques Cassiman; Ségolène Aymé
Journal:  Eur J Hum Genet       Date:  2003-12       Impact factor: 4.246

2.  [Genetic data sharing: a new type of capital].

Authors:  Henri-Corto Stoeklé; Ninon Forster; Philippe Charlier; Oudy C Bloch; Christian Hervé; Mauro Turrini; Guillaume Vogt
Journal:  Med Sci (Paris)       Date:  2018-09-19       Impact factor: 0.818

3.  The rise and fall and rise again of 23andMe.

Authors:  Erika Check Hayden
Journal:  Nature       Date:  2017-10-11       Impact factor: 49.962

4.  [Toward dynamic informed consent].

Authors:  Henri-Corto Stoeklé; Jean-François Deleuze; Guillaume Vogt; Christian Hervé
Journal:  Med Sci (Paris)       Date:  2017-02-27       Impact factor: 0.818

5.  [The Jardé law, a real simplification of research in France?]

Authors:  C Levy; A Rybak; R Cohen; C Jung
Journal:  Arch Pediatr       Date:  2017-04-14       Impact factor: 1.180

6.  Broad Consent for Research With Biological Samples: Workshop Conclusions.

Authors:  Christine Grady; Lisa Eckstein; Ben Berkman; Dan Brock; Robert Cook-Deegan; Stephanie M Fullerton; Hank Greely; Mats G Hansson; Sara Hull; Scott Kim; Bernie Lo; Rebecca Pentz; Laura Rodriguez; Carol Weil; Benjamin S Wilfond; David Wendler
Journal:  Am J Bioeth       Date:  2015       Impact factor: 11.229

7.  Building the Partners HealthCare Biobank at Partners Personalized Medicine: Informed Consent, Return of Research Results, Recruitment Lessons and Operational Considerations.

Authors:  Elizabeth W Karlson; Natalie T Boutin; Alison G Hoffnagle; Nicole L Allen
Journal:  J Pers Med       Date:  2016-01-14

8.  Eliciting meta consent for future secondary research use of health data using a smartphone application - a proof of concept study in the Danish population.

Authors:  Thomas Ploug; Søren Holm
Journal:  BMC Med Ethics       Date:  2017-08-15       Impact factor: 2.652

9.  Dynamic consent: a patient interface for twenty-first century research networks.

Authors:  Jane Kaye; Edgar A Whitley; David Lund; Michael Morrison; Harriet Teare; Karen Melham
Journal:  Eur J Hum Genet       Date:  2014-05-07       Impact factor: 4.246

10.  Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine.

Authors:  Henri-Corto Stoeklé; Marie-France Mamzer-Bruneel; Charles-Henry Frouart; Christophe Le Tourneau; Pierre Laurent-Puig; Guillaume Vogt; Christian Hervé
Journal:  Sci Eng Ethics       Date:  2017-03-09       Impact factor: 3.525

View more
  2 in total

1.  Creation and use of organoids in biomedical research and healthcare: the bioethical and metabioethical issues.

Authors:  Henri-Corto Stoeklé; Achille Ivasilevitch; Geneviève Marignac; Christian Hervé
Journal:  Cell Adh Migr       Date:  2021-12       Impact factor: 3.405

2.  Dynamic consent and personalised medicine.

Authors:  Liza Goncharov; Hanna Suominen; Matthew Cook
Journal:  Med J Aust       Date:  2022-05-24       Impact factor: 12.776

  2 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.