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

• Published in: Genetics in medicine Vol. 15; no. 5; pp. 382 - 387
• Main Authors: Sterckx, Sigrid, Cockbain, Julian, Howard, Heidi, Huys, Isabelle, Borry, Pascal
• Format: Journal Article
• Language: English
• Published: New York Nature Publishing Group US 01.05.2013; Elsevier Limited
• Subjects: 692/700/139/1512; 692/700/179; 706/648/270; Biomedical and Life Sciences; Biomedicine; Databases, Factual; Genetic Research - ethics; Genetic Research - legislation & jurisprudence; Genetic testing; Genetic Testing - ethics; Genetic Testing - legislation & jurisprudence; Health Care Sector - ethics; Health Care Sector - legislation & jurisprudence; Human Genetics; Humans; Intellectual Property; Internet; Laboratory Medicine; original-research-article; Parkinson's disease; Trust; direct-to-consumer; patenting; ethics; genetic testing
• ISSN: 1098-3600; 1530-0366; 1530-0366
• DOI: 10.1038/gim.2012.143

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. Genet Med 2013:15(5):382–387