{"id":"https://openalex.org/W2164875280","doi":"https://doi.org/10.1038/gim.2012.143","title":"\u201cTrust is not something you can reclaim easily\u201d: patenting in the field of direct-to-consumer genetic testing","display_name":"\u201cTrust is not something you can reclaim easily\u201d: patenting in the field of direct-to-consumer genetic testing","publication_year":2012,"publication_date":"2012-11-22","ids":{"openalex":"https://openalex.org/W2164875280","doi":"https://doi.org/10.1038/gim.2012.143","mag":"2164875280","pmid":"https://pubmed.ncbi.nlm.nih.gov/23174801"},"language":"en","primary_location":{"id":"doi:10.1038/gim.2012.143","doi":"https://doi.org/10.1038/gim.2012.143","is_oa":true,"landing_page_url":"https://doi.org/10.1038/gim.2012.143","pdf_url":"http://www.gimjournal.org/article/S1098360021020335/pdf","source":{"id":"https://openalex.org/S187186932","display_name":"Genetics in Medicine","issn_l":"1098-3600","issn":["1098-3600","1530-0366"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-a","doyens","jufo-3","ki-jl-2","medline","norway-1","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Genetics in Medicine","raw_type":"journal-article"},"parent_works":[],"lineage":["https://openalex.org/W2164875280"],"child_works_count":0,"type":"article","is_traditional":true,"indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"bronze","oa_url":"http://www.gimjournal.org/article/S1098360021020335/pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5074277089","display_name":"Sigrid Sterckx","orcid":"https://orcid.org/0000-0003-1018-1127","observed_orcids":["https://orcid.org/0000-0003-1018-1127"]},"institutions":[{"id":"https://openalex.org/I13469542","display_name":"Vrije Universiteit Brussel","ror":"https://ror.org/006e5kg04","country_code":"BE","type":"education","lineage":["https://openalex.org/I13469542"]},{"id":"https://openalex.org/I32597200","display_name":"Ghent University","ror":"https://ror.org/00cv9y106","country_code":"BE","type":"education","lineage":["https://openalex.org/I32597200"]}],"countries":["BE"],"is_corresponding":false,"raw_author_name":"Sigrid Sterckx","raw_affiliation_strings":["Bioethics Institute Ghent, Universiteit Gent, Gent, Belgium","Department of Philosophy and Moral Sciences, Vrije Universiteit Brussel, Brussel, Belgium"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Bioethics Institute Ghent, Universiteit Gent, Gent, Belgium","institution_ids":["https://openalex.org/I32597200"]},{"raw_affiliation_string":"Department of Philosophy and Moral Sciences, Vrije Universiteit Brussel, Brussel, Belgium","institution_ids":["https://openalex.org/I13469542"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5056793183","display_name":"Julian Cockbain","orcid":"https://orcid.org/0000-0002-3662-876X","observed_orcids":["https://orcid.org/0000-0002-3662-876X"]},"institutions":[{"id":"https://openalex.org/I2801706311","display_name":"American College of Medical Genetics","ror":"https://ror.org/02h3se683","country_code":"US","type":"education","lineage":["https://openalex.org/I2801706311"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Julian Cockbain","raw_affiliation_strings":["\u00a9American College of Medical Genetics and Genomics","Consultant European Patent Attorney, Oxford, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"\u00a9American College of Medical Genetics and Genomics","institution_ids":["https://openalex.org/I2801706311"]},{"raw_affiliation_string":"Consultant European Patent Attorney, Oxford, UK","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5028575866","display_name":"Heidi Carmen Howard","orcid":"https://orcid.org/0000-0001-5256-7664","observed_orcids":["https://orcid.org/0000-0001-5256-7664"]},"institutions":[{"id":"https://openalex.org/I134560555","display_name":"Universit\u00e9 Toulouse III - Paul Sabatier","ror":"https://ror.org/02v6kpv12","country_code":"FR","type":"education","lineage":["https://openalex.org/I134560555","https://openalex.org/I4405258862"]},{"id":"https://openalex.org/I154526488","display_name":"Inserm","ror":"https://ror.org/02vjkv261","country_code":"FR","type":"government","lineage":["https://openalex.org/I154526488"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"Heidi Howard","raw_affiliation_strings":["Facult\u00e9 de M\u00e9decine, D\u00e9partement d\u2019\u00c9pid\u00e9miologie et de Sant\u00e9 Publique, Universit\u00e9 Toulouse III\u2014Paul Sabatier, INSERM UMR U1027, Toulouse, France"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Facult\u00e9 de M\u00e9decine, D\u00e9partement d\u2019\u00c9pid\u00e9miologie et de Sant\u00e9 Publique, Universit\u00e9 Toulouse III\u2014Paul Sabatier, INSERM UMR U1027, Toulouse, France","institution_ids":["https://openalex.org/I134560555","https://openalex.org/I154526488"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5082978640","display_name":"Isabelle Huys","orcid":"https://orcid.org/0000-0002-4738-8298","observed_orcids":["https://orcid.org/0000-0002-4738-8298"]},"institutions":[{"id":"https://openalex.org/I99464096","display_name":"KU Leuven","ror":"https://ror.org/05f950310","country_code":"BE","type":"education","lineage":["https://openalex.org/I99464096"]}],"countries":["BE"],"is_corresponding":false,"raw_author_name":"Isabelle Huys","raw_affiliation_strings":["Centre for Intellectual Property Rights, Katholieke Universiteit Leuven, Leuven, Belgium","Centre for Pharmaceutical Care and Pharmaco-Economics, Faculty of Pharmaceutical Sciences, Katholieke Universiteit Leuven, Leuven, Belgium"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Centre for Intellectual Property Rights, Katholieke Universiteit Leuven, Leuven, Belgium","institution_ids":["https://openalex.org/I99464096"]},{"raw_affiliation_string":"Centre for Pharmaceutical Care and Pharmaco-Economics, Faculty of Pharmaceutical Sciences, Katholieke Universiteit Leuven, Leuven, Belgium","institution_ids":["https://openalex.org/I99464096"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5033667365","display_name":"Pascal Borry","orcid":"https://orcid.org/0000-0002-4931-9560","observed_orcids":["https://orcid.org/0000-0002-4931-9560"]},"institutions":[{"id":"https://openalex.org/I99464096","display_name":"KU Leuven","ror":"https://ror.org/05f950310","country_code":"BE","type":"education","lineage":["https://openalex.org/I99464096"]}],"countries":["BE"],"is_corresponding":true,"raw_author_name":"Pascal Borry","raw_affiliation_strings":["Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium","institution_ids":["https://openalex.org/I99464096"]}]}],"institutions":[],"countries_distinct_count":3,"institutions_distinct_count":6,"corresponding_author_ids":["https://openalex.org/A5033667365"],"corresponding_institution_ids":["https://openalex.org/I99464096"],"apc_list":{"value":5110,"currency":"USD","value_usd":5110},"apc_paid":null,"fwci":3.0576,"has_fulltext":true,"cited_by_count":68,"citation_normalized_percentile":{"value":0.9039615,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":87,"max":100},"biblio":{"volume":"15","issue":"5","first_page":"382","last_page":"387"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.5268999934196472,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.5268999934196472,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T13417","display_name":"Biomedical Ethics and Regulation","score":0.17440000176429749,"subfield":{"id":"https://openalex.org/subfields/2910","display_name":"Issues, ethics and legal aspects"},"field":{"id":"https://openalex.org/fields/29","display_name":"Nursing"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10856","display_name":"Intellectual Property and Patents","score":0.14509999752044678,"subfield":{"id":"https://openalex.org/subfields/1405","display_name":"Management of Technology and Innovation"},"field":{"id":"https://openalex.org/fields/14","display_name":"Business, Management and Accounting"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/patenting","display_name":"patenting","score":0.6039999723434448},{"id":"https://openalex.org/keywords/direct-to-consumer-genetic-testing","display_name":"direct-to-consumer genetic testing","score":0.984000027179718},{"id":"https://openalex.org/keywords/23andme","display_name":"23andMe","score":1.0},{"id":"https://openalex.org/keywords/research-ethics","display_name":"research ethics","score":0.48399999737739563},{"id":"https://openalex.org/keywords/transparency","display_name":"transparency","score":0.878000020980835},{"id":"https://openalex.org/keywords/trust","display_name":"trust","score":0.703000009059906},{"id":"https://openalex.org/keywords/research-commercialization","display_name":"commercialization of research","score":0.7409999966621399},{"id":"https://openalex.org/keywords/genetic-polymorphism","display_name":"genetic polymorphism","score":0.656000018119812},{"id":"https://openalex.org/keywords/parkinson-s-disease","display_name":"Parkinson's disease","score":0.9240000247955322},{"id":"https://openalex.org/keywords/research-participant-rights","display_name":"research participant rights","score":0.30300000309944153}],"concepts":[{"id":"https://openalex.org/C9652623","wikidata":"https://www.wikidata.org/wiki/Q190109","display_name":"Field (mathematics)","level":2,"score":0.6270058155059814},{"id":"https://openalex.org/C2780673598","wikidata":"https://www.wikidata.org/wiki/Q285223","display_name":"Genetic testing","level":2,"score":0.5049367547035217},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.3534678816795349},{"id":"https://openalex.org/C150903083","wikidata":"https://www.wikidata.org/wiki/Q7108","display_name":"Biotechnology","level":1,"score":0.3384628891944885},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.33492395281791687},{"id":"https://openalex.org/C54355233","wikidata":"https://www.wikidata.org/wiki/Q7162","display_name":"Genetics","level":1,"score":0.2838604748249054},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.2809208631515503},{"id":"https://openalex.org/C33923547","wikidata":"https://www.wikidata.org/wiki/Q395","display_name":"Mathematics","level":0,"score":0.18611225485801697},{"id":"https://openalex.org/C202444582","wikidata":"https://www.wikidata.org/wiki/Q837863","display_name":"Pure mathematics","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D005820","descriptor_name":"Genetic Testing","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":true},{"descriptor_ui":"D005820","descriptor_name":"Genetic Testing","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D016208","descriptor_name":"Databases, Factual","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D018973","descriptor_name":"Intellectual Property","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D019981","descriptor_name":"Health Care Sector","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":false},{"descriptor_ui":"D019981","descriptor_name":"Health Care Sector","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D020407","descriptor_name":"Internet","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D035502","descriptor_name":"Trust","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D036281","descriptor_name":"Genetic Research","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":false},{"descriptor_ui":"D036281","descriptor_name":"Genetic Research","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false}],"locations_count":6,"locations":[{"id":"doi:10.1038/gim.2012.143","doi":"https://doi.org/10.1038/gim.2012.143","is_oa":true,"landing_page_url":"https://doi.org/10.1038/gim.2012.143","pdf_url":"http://www.gimjournal.org/article/S1098360021020335/pdf","source":{"id":"https://openalex.org/S187186932","display_name":"Genetics in Medicine","issn_l":"1098-3600","issn":["1098-3600","1530-0366"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-a","doyens","jufo-3","ki-jl-2","medline","norway-1","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Genetics in Medicine","raw_type":"journal-article"},{"id":"pmid:23174801","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/23174801","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Genetics in medicine : official journal of the American College of Medical Genetics","raw_type":"Journal Article"},{"id":"pmh:oai:archive.ugent.be:3143055","doi":null,"is_oa":true,"landing_page_url":"https://biblio.ugent.be/publication/3143055","pdf_url":"https://biblio.ugent.be/publication/3143055/file/01H4DWM85727WRS0E306BBGRAS.pdf","source":{"id":"https://openalex.org/S4306400478","display_name":"Ghent University Academic Bibliography (Ghent University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I32597200","host_organization_name":"Ghent University","host_organization_lineage":["https://openalex.org/I32597200"],"host_organization_lineage_names":[],"type":"repository"},"license":"other-oa","license_id":"https://openalex.org/licenses/other-oa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"ISSN: 1530-0366","raw_type":"info:eu-repo/semantics/article"},{"id":"pmh:oai:repository.ubn.ru.nl:2066/128556","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/2066/128556","pdf_url":null,"source":{"id":"https://openalex.org/S4306401067","display_name":"Radboud Repository (Radboud University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I145872427","host_organization_name":"Radboud University Nijmegen","host_organization_lineage":["https://openalex.org/I145872427"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Genetics in Medicine, 15, 5, pp. 382-7","raw_type":"Article / Letter to editor"},{"id":"pmh:oai:vubissmart:VUBISSMART:2000:76939","doi":null,"is_oa":false,"landing_page_url":"https://biblio.vub.ac.be/vubir/trust-is-not-something-you-can-reclaim-easily--patenting-in-the-field-of-direct-to-consumer-genetic-testing(22233749-131f-4e1b-849a-d9fcc31b5c82).html","pdf_url":null,"source":{"id":"https://openalex.org/S4306402573","display_name":"VUBIR (Vrije Universiteit Brussel)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I13469542","host_organization_name":"Vrije Universiteit Brussel","host_organization_lineage":["https://openalex.org/I13469542"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"article"},{"id":"pmh:ru:oai:repository.ubn.ru.nl:2066/128556","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/2066/128556","pdf_url":null,"source":{"id":"https://openalex.org/S4306401067","display_name":"Radboud Repository (Radboud University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I145872427","host_organization_name":"Radboud University Nijmegen","host_organization_lineage":["https://openalex.org/I145872427"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Genetics in Medicine, 15, 382 - 7","raw_type":"info:eu-repo/semantics/article"}],"best_oa_location":{"id":"doi:10.1038/gim.2012.143","doi":"https://doi.org/10.1038/gim.2012.143","is_oa":true,"landing_page_url":"https://doi.org/10.1038/gim.2012.143","pdf_url":"http://www.gimjournal.org/article/S1098360021020335/pdf","source":{"id":"https://openalex.org/S187186932","display_name":"Genetics in Medicine","issn_l":"1098-3600","issn":["1098-3600","1530-0366"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-a","doyens","jufo-3","ki-jl-2","medline","norway-1","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Genetics in Medicine","raw_type":"journal-article"},"sustainable_development_goals":[],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W2164875280.pdf","grobid_xml":"https://content.openalex.org/works/W2164875280.grobid-xml"},"referenced_works_count":34,"referenced_works":["https://openalex.org/W6304366","https://openalex.org/W55019140","https://openalex.org/W194276753","https://openalex.org/W264763207","https://openalex.org/W612134165","https://openalex.org/W950369916","https://openalex.org/W1483030074","https://openalex.org/W1587615815","https://openalex.org/W1955060099","https://openalex.org/W1966566618","https://openalex.org/W1981440250","https://openalex.org/W2001272861","https://openalex.org/W2016087929","https://openalex.org/W2017969571","https://openalex.org/W2018447768","https://openalex.org/W2023231483","https://openalex.org/W2027139930","https://openalex.org/W2028770837","https://openalex.org/W2029287553","https://openalex.org/W2033999925","https://openalex.org/W2045182366","https://openalex.org/W2064341043","https://openalex.org/W2072823172","https://openalex.org/W2082618767","https://openalex.org/W2110820132","https://openalex.org/W2118047720","https://openalex.org/W2120077815","https://openalex.org/W2124334726","https://openalex.org/W2139803101","https://openalex.org/W2144037754","https://openalex.org/W2149278098","https://openalex.org/W2171798867","https://openalex.org/W3124651824","https://openalex.org/W4249495390"],"related_works":["https://openalex.org/W1987738296","https://openalex.org/W2886993536","https://openalex.org/W2276214864","https://openalex.org/W1977661757","https://openalex.org/W3112221424","https://openalex.org/W2599930301","https://openalex.org/W7028133483","https://openalex.org/W3024533563","https://openalex.org/W3216818605"],"abstract_inverted_index":null,"counts_by_year":[{"year":2026,"cited_by_count":4},{"year":2023,"cited_by_count":2},{"year":2022,"cited_by_count":4},{"year":2021,"cited_by_count":1},{"year":2020,"cited_by_count":4},{"year":2019,"cited_by_count":2},{"year":2018,"cited_by_count":33},{"year":2017,"cited_by_count":3},{"year":2016,"cited_by_count":4},{"year":2015,"cited_by_count":1},{"year":2014,"cited_by_count":5},{"year":2013,"cited_by_count":4}],"updated_date":"2026-11-14T11:04:58.165337","created_date":"2016-06-24T00:00:00"}
