Literature DB >> 23174801

"Trust is not something you can reclaim easily": patenting in the field of direct-to-consumer genetic testing.

Sigrid Sterckx1, Julian Cockbain, Heidi Howard, Isabelle Huys, Pascal Borry.   

Abstract

PURPOSE: Recently, 23andMe announced that it had obtained its first patent, related to "polymorphisms associated with Parkinson's disease" (US-B-8187811). This announcement immediately sparked controversy in the community of 23andMe users and research participants, especially with regard to issues of transparency and trust. The purpose of this article was to analyze the patent portfolio of this prominent direct-to-consumer genetic testing company and discuss the potential ethical implications of patenting in this field for public participation in Web-based genetic research.
METHODS: We searched the publicly accessible patent database Espacenet as well as the commercially available database Micropatent for published patents and patent applications of 23andMe.
RESULTS: Six patent families were identified for 23andMe. These included patent applications related to: genetic comparisons between grandparents and grandchildren, family inheritance, genome sharing, processing data from genotyping chips, gamete donor selection based on genetic calculations, finding relatives in a database, and polymorphisms associated with Parkinson disease.
CONCLUSION: An important lesson to be drawn from this ongoing controversy seems to be that any (private or public) organization involved in research that relies on human participation, whether by providing information, body material, or both, needs to be transparent, not only about its research goals but also about its strategies and policies regarding commercialization.

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Mesh:

Year:  2012        PMID: 23174801     DOI: 10.1038/gim.2012.143

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  9 in total

1.  Health research 2.0: The use in research of personal fitness or health data shared on social network raises both scientific and ethical concerns.

Authors:  Katrin Weigmann
Journal:  EMBO Rep       Date:  2014-02-11       Impact factor: 8.807

2.  Communication is the key. : Part 2 : Direct to consumer genetics in our future daily life ?

Authors:  Bernard Perbal
Journal:  J Cell Commun Signal       Date:  2014-11-19       Impact factor: 5.782

3.  Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.

Authors:  Ngozi Nwebonyi; Susana Silva; Cláudia de Freitas
Journal:  Front Public Health       Date:  2022-05-10

Review 4.  "The Google of Healthcare": enabling the privatization of genetic bio/databanking.

Authors:  Kayte Spector-Bagdady
Journal:  Ann Epidemiol       Date:  2016-06-01       Impact factor: 3.797

5.  Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data.

Authors:  Gaia Barazzetti; Francesca Bosisio; Daria Koutaissoff; Brenda Spencer
Journal:  Eur J Hum Genet       Date:  2020-02-21       Impact factor: 4.246

6.  Direct-to-consumer genomics on the scales of autonomy.

Authors:  Effy Vayena
Journal:  J Med Ethics       Date:  2014-05-05       Impact factor: 2.903

7.  Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.

Authors:  J Patrick Woolley; Michelle L McGowan; Harriet J A Teare; Victoria Coathup; Jennifer R Fishman; Richard A Settersten; Sigrid Sterckx; Jane Kaye; Eric T Juengst
Journal:  BMC Med Ethics       Date:  2016-06-04       Impact factor: 2.652

8.  Falling giants and the rise of gene editing: ethics, private interests and the public good.

Authors:  Benjamin Capps; Ruth Chadwick; Yann Joly; John J Mulvihill; Tamra Lysaght; Hub Zwart
Journal:  Hum Genomics       Date:  2017-08-29       Impact factor: 4.639

9.  Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?

Authors:  Christi J Guerrini; Meaganne Lewellyn; Mary A Majumder; Meredith Trejo; Isabel Canfield; Amy L McGuire
Journal:  BMC Med Ethics       Date:  2019-11-21       Impact factor: 2.652

  9 in total

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