{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,20]],"date-time":"2025-12-20T22:30:07Z","timestamp":1766269807544,"version":"3.37.3"},"reference-count":127,"publisher":"Springer Science and Business Media LLC","issue":"2","license":[{"start":{"date-parts":[[2017,9,26]],"date-time":"2017-09-26T00:00:00Z","timestamp":1506384000000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"CHIP ME COST Action","award":["IS1303"],"award-info":[{"award-number":["IS1303"]}]},{"name":"Grant Agreement","award":["305444"],"award-info":[{"award-number":["305444"]}]},{"name":"The Portuguese Foundation for Science and Technology","award":["SFRH\/BPD\/88647\/2012"],"award-info":[{"award-number":["SFRH\/BPD\/88647\/2012"]}]},{"name":"National Research and Innovation Platform for Personalized Cancer Medicine funded by The Research Council of Norway","award":["NFR BIOTEK2021\/ES495029"],"award-info":[{"award-number":["NFR BIOTEK2021\/ES495029"]}]},{"name":"Biobank Norway funded by The Research Council of Norway","award":["245464"],"award-info":[{"award-number":["245464"]}]},{"name":"Swedish Foundation for Humanities and Social Science","award":["M13-0260:1)"],"award-info":[{"award-number":["M13-0260:1)"]}]},{"name":"Biobanking and Molecular Resource Infrastructure of Sweden"},{"name":"BBMRI-ERIC"},{"name":"Portuguese Foundation for Science and Technology","award":["SFRH\/BD\/100779\/2014"],"award-info":[{"award-number":["SFRH\/BD\/100779\/2014"]}]},{"name":"Legal Regulation of Information Processing relating to Personalized Cancer Medicine funded by The Research Council of Norway","award":["BIOTEK2021\/238999"],"award-info":[{"award-number":["BIOTEK2021\/238999"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Community Genet"],"published-print":{"date-parts":[[2018,4]]},"DOI":"10.1007\/s12687-017-0331-7","type":"journal-article","created":{"date-parts":[[2017,9,26]],"date-time":"2017-09-26T08:10:33Z","timestamp":1506413433000},"page":"103-116","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":55,"title":["The challenges of the expanded availability of genomic information: an agenda-setting paper"],"prefix":"10.1007","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4931-9560","authenticated-orcid":false,"given":"Pascal","family":"Borry","sequence":"first","affiliation":[]},{"given":"Heidi Beate","family":"Bentzen","sequence":"additional","affiliation":[]},{"given":"Isabelle","family":"Budin-Lj\u00f8sne","sequence":"additional","affiliation":[]},{"given":"Martina C.","family":"Cornel","sequence":"additional","affiliation":[]},{"given":"Heidi Carmen","family":"Howard","sequence":"additional","affiliation":[]},{"given":"Oliver","family":"Feeney","sequence":"additional","affiliation":[]},{"given":"Leigh","family":"Jackson","sequence":"additional","affiliation":[]},{"given":"Deborah","family":"Mascalzoni","sequence":"additional","affiliation":[]},{"given":"\u00c1lvaro","family":"Mendes","sequence":"additional","affiliation":[]},{"given":"Borut","family":"Peterlin","sequence":"additional","affiliation":[]},{"given":"Brigida","family":"Riso","sequence":"additional","affiliation":[]},{"given":"Mahsa","family":"Shabani","sequence":"additional","affiliation":[]},{"given":"Heather","family":"Skirton","sequence":"additional","affiliation":[]},{"given":"Sigrid","family":"Sterckx","sequence":"additional","affiliation":[]},{"given":"Danya","family":"Vears","sequence":"additional","affiliation":[]},{"given":"Matthias","family":"Wjst","sequence":"additional","affiliation":[]},{"given":"Heike","family":"Felzmann","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2017,9,26]]},"reference":[{"key":"331_CR1","doi-asserted-by":"crossref","first-page":"1834","DOI":"10.1056\/NEJMcp074045","volume":"357","author":"PS Appelbaum","year":"2007","unstructured":"Appelbaum PS (2007) Assessment of patients\u2019 competence to consent to treatment. N Engl J Med 357:1834\u20131840","journal-title":"N Engl J Med"},{"key":"331_CR2","first-page":"747","volume":"2","author":"JJ Arias","year":"2016","unstructured":"Arias JJ, Pham-Kanter G, Gonzalez R, Campbell EG (2016) Trust, vulnerable populations, and genetic data sharing. J Law Biosci 2:747\u2013753","journal-title":"J Law Biosci"},{"key":"331_CR3","doi-asserted-by":"crossref","unstructured":"\u00c1rnason E, Andersen B (2013) deCODE and Iceland: a critique. eLS","DOI":"10.1002\/9780470015902.a0005180.pub2"},{"key":"331_CR4","unstructured":"Ayme S, JRC LG, Matthijs G, Borry P (2013) European workshop on genetic testing offer in Europe. EUR-Scientific and Technical Research Reports"},{"key":"331_CR5","doi-asserted-by":"crossref","unstructured":"Babkina N, Graham JM Jr (2014) New genetic testing in prenatal diagnosis.Semin Fetal Neonatal Med 19(3):214\u20139","DOI":"10.1016\/j.siny.2013.10.005"},{"key":"331_CR6","doi-asserted-by":"publisher","unstructured":"Badalato L, Kalokairinou L, Borry P (2017) Third party interpretation of raw genetic data: an ethical exploration. Eur J Hum Genet. https:\/\/doi.org\/10.1038\/ejhg.2017.126","DOI":"10.1038\/ejhg.2017.126"},{"key":"331_CR7","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/s12916-016-0612-8","volume":"14","author":"C Barbui","year":"2016","unstructured":"Barbui C (2016) Sharing all types of clinical data and harmonizing journal standards. BMC Medicine 14:1","journal-title":"BMC Medicine"},{"key":"331_CR8","doi-asserted-by":"crossref","first-page":"e1005716","DOI":"10.1371\/journal.pgen.1005716","volume":"11","author":"GS Barsh","year":"2015","unstructured":"Barsh GS, Cooper GM, Copenhaver GP, Gibson G, McCarthy MI, Tang H, Williams SM (2015) PLOS genetics data sharing policy: in pursuit of functional utility. PLoS Genet 11:e1005716","journal-title":"PLoS Genet"},{"key":"331_CR9","doi-asserted-by":"crossref","first-page":"205","DOI":"10.1111\/j.1399-0004.2012.01935.x","volume":"82","author":"L Battistuzzi","year":"2012","unstructured":"Battistuzzi L, Ciliberti R, Forzano F, De Stefano F (2012) Regulating the communication of genetic risk information: the Italian legal approach to questions of confidentiality and disclosure. Clinical Genetics 82:205\u2013209","journal-title":"Clinical Genetics"},{"key":"331_CR10","doi-asserted-by":"crossref","unstructured":"Bentzen HB, Svantesson DJB (2017) Jurisdictional challenges related to DNA data processing in transnational clouds. Transatlantic data privacy relationships as a challenge for democracy, vol 4. European Integration and Democracy Series edn. Intersentia, Mortsel, Belgium","DOI":"10.1017\/9781780685786"},{"key":"331_CR11","doi-asserted-by":"crossref","first-page":"129","DOI":"10.1038\/522129a","volume":"522","author":"M Bobrow","year":"2015","unstructured":"Bobrow M (2015) Funders must encourage scientists to share. Nature 522:129\u2013129","journal-title":"Nature"},{"key":"331_CR12","doi-asserted-by":"crossref","first-page":"485","DOI":"10.1038\/gim.2014.134","volume":"17","author":"AR Bradbury","year":"2014","unstructured":"Bradbury AR et al (2014) Development of a tiered and binned genetic counseling model for informed consent in the era of multiplex testing for cancer susceptibility. Genetics in Medicine 17:485\u2013492","journal-title":"Genetics in Medicine"},{"key":"331_CR13","doi-asserted-by":"crossref","first-page":"317","DOI":"10.1038\/ejhg.2013.131","volume":"22","author":"I Budin-Lj\u00f8sne","year":"2014","unstructured":"Budin-Lj\u00f8sne I, Isaeva J, Knoppers BM, Tass\u00e9 AM, Shen H-Y, MI MC, Harris JR (2014) Data sharing in large research consortia: experiences and recommendations from ENGAGE. Eur J Hum Genet 22:317\u2013321","journal-title":"Eur J Hum Genet"},{"key":"331_CR14","doi-asserted-by":"crossref","first-page":"241","DOI":"10.1089\/bio.2015.0115","volume":"14","author":"I Budin-Lj\u00f8sne","year":"2016","unstructured":"Budin-Lj\u00f8sne I et al (2016) Feedback of individual genetic results to research participants: is it feasible in Europe? Biopreserv Biobanking 14:241\u2013248","journal-title":"Biopreserv Biobanking"},{"key":"331_CR15","doi-asserted-by":"crossref","first-page":"4","DOI":"10.1186\/s12910-016-0162-9","volume":"18","author":"I Budin-Lj\u00f8sne","year":"2017","unstructured":"Budin-Lj\u00f8sne I et al (2017) Dynamic consent: a potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics 18:4","journal-title":"BMC Medical Ethics"},{"key":"331_CR16","doi-asserted-by":"publisher","first-page":"1278","DOI":"10.1126\/science.aaf6162","volume":"352","author":"J Burn","year":"2016","unstructured":"Burn J (2016) A federated ecosystem for sharing genomic, clinical data. Science 352:1278\u20131280. https:\/\/doi.org\/10.1126\/science.aaf6162","journal-title":"Science"},{"key":"331_CR17","doi-asserted-by":"crossref","first-page":"70","DOI":"10.1186\/s13073-016-0325-9","volume":"8","author":"C Caleshu","year":"2016","unstructured":"Caleshu C, Ashley EA (2016) Taming the genome: towards better genetic interpretation. Genome Med 8:70","journal-title":"Genome Med"},{"key":"331_CR18","doi-asserted-by":"crossref","unstructured":"Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turnpenny PD, Lucassen AM, Kelly SE (2017a) Recontacting in clinical genetics and genomic medicine? We need to talk about it. Eur J Hum Genet. 25(5):520\u2013521","DOI":"10.1038\/ejhg.2017.8"},{"key":"331_CR19","doi-asserted-by":"crossref","unstructured":"Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turnpenny PD, Lucassen AM, Kelly SE (2017b) Recontacting in clinical practice: Recontacting in clinical practice: the views and expectations of patients in the United Kingdom. Eur J Hum Genet 25(10):1106\u20131112","DOI":"10.1038\/ejhg.2017.122"},{"issue":"3","key":"331_CR20","first-page":"627","volume":"2","author":"T Caulfield","year":"2015","unstructured":"Caulfield T, Borry P, Toews M, Elger BS, Greely HT, McGuire A (2015) Marginally scientific? Genetic testing of children and adolescents for lifestyle and health promotion. J Law Biosci 2(3):627\u2013644","journal-title":"J Law Biosci"},{"key":"331_CR21","doi-asserted-by":"crossref","first-page":"94","DOI":"10.1093\/jlb\/lst004","volume":"1","author":"T Caulfield","year":"2014","unstructured":"Caulfield T et al (2014) A review of the key issues associated with the commercialization of biobanks. J Law Biosci 1:94\u2013110","journal-title":"J Law Biosci"},{"key":"331_CR22","first-page":"116","volume":"6","author":"D Chalmers","year":"2004","unstructured":"Chalmers D, Nicol D (2004) Commercialisation of biotechnology: public trust and research International. J Biotechnol 6:116\u2013133","journal-title":"J Biotechnol"},{"key":"331_CR23","volume-title":"Governing knowledge commons","author":"JL Contreras","year":"2014","unstructured":"Contreras JL (2014) Constructing the genome commons. In: Frishcmann B, Madison M, Strandburg K (eds) Governing knowledge commons. Oxford University Press, Oxford, UK"},{"key":"331_CR24","doi-asserted-by":"crossref","first-page":"585","DOI":"10.1038\/ejhg.2012.217","volume":"21","author":"R Cook-Deegan","year":"2013","unstructured":"Cook-Deegan R, Conley JM, Evans JP, Vorhaus D (2013) The next controversy in genetic testing: clinical data as trade secrets? Eur J Hum Genet 21:585\u2013588","journal-title":"Eur J Hum Genet"},{"key":"331_CR25","first-page":"1","volume":"11","author":"FF Costa","year":"2012","unstructured":"Costa FF (2012) Big data in genomics: challenges and solutions. GIT Lab J 11:1\u20134","journal-title":"GIT Lab J"},{"key":"331_CR26","doi-asserted-by":"crossref","first-page":"347","DOI":"10.1177\/0963662509346910","volume":"20","author":"CR Critchley","year":"2009","unstructured":"Critchley CR, Nicol D (2009) Understanding the impact of commercialization on public support for scientific research: is it about the funding source or the organization conducting research? Public Underst Sci 20:347\u2013366","journal-title":"Public Underst Sci"},{"key":"331_CR27","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1353\/ken.0.0310","volume":"20","author":"GK Crozier","year":"2010","unstructured":"Crozier GK, Hajzler C (2010) Market stimulus and genomic justice: evaluating the effects of market access to human germ-line enhancement. Kennedy Inst Ethics J 20:161\u2013179","journal-title":"Kennedy Inst Ethics J"},{"key":"331_CR28","doi-asserted-by":"crossref","first-page":"483","DOI":"10.1007\/s10897-015-9896-7","volume":"25","author":"D D\u2019Audiffret van Haecke","year":"2016","unstructured":"D\u2019Audiffret van Haecke D, de Montgolfier S (2016) Genetic test results and disclosure to family members: qualitative interviews of healthcare professionals\u2019 perceptions of ethical and professional issues in France. J Genet Couns 25:483\u2013494","journal-title":"J Genet Couns"},{"key":"331_CR29","doi-asserted-by":"crossref","first-page":"697","DOI":"10.1007\/s10689-016-9889-1","volume":"15","author":"MB Daly","year":"2016","unstructured":"Daly MB, Montgomery S, Bingler R, Ruth K (2016) Communicating genetic test results within the family: is it lost in translation? A survey of relatives in the randomized six-step study. Fam Cancer 15:697\u2013706","journal-title":"Fam Cancer"},{"key":"331_CR30","doi-asserted-by":"crossref","first-page":"1179","DOI":"10.1007\/s10897-016-9948-7","volume":"25","author":"E Geus de","year":"2016","unstructured":"de Geus E, Eijzenga W, Menko FH, Sijmons RH, de Haes HC, Aalfs CM, Smets EM (2016) Design and feasibility of an intervention to support cancer genetic counselees in informing their at-risk relatives. J Genet Couns 25:1179\u20131187","journal-title":"J Genet Couns"},{"key":"331_CR31","volume-title":"Healthcare: public private partnerships","author":"Department of Health UK","year":"2013","unstructured":"Department of Health UK (2013) Healthcare: public private partnerships. Department of Health, London, UK"},{"key":"331_CR32","doi-asserted-by":"crossref","first-page":"145","DOI":"10.1136\/medethics-2015-102781","volume":"42","author":"S Dheensa","year":"2016","unstructured":"Dheensa S, Fenwick A, Lucassen A (2016) \u2018Is this knowledge mine and nobody else\u2019s? I don\u2019t feel that.\u2019 Patient views about consent, confidentiality and information-sharing in genetic medicine. J Med Ethics 42:145\u2013146","journal-title":"J Med Ethics"},{"key":"331_CR33","doi-asserted-by":"crossref","unstructured":"Dheensa S, Fenwick A, Shkedi-Rafid S, Crawford G, Lucassen A (2015a) Health-care professionals\u2019 responsibility to patients\u2019 relatives in genetic medicine: a systematic review and synthesis of empirical research. Genet Med","DOI":"10.1038\/gim.2015.72"},{"key":"331_CR34","doi-asserted-by":"crossref","first-page":"290","DOI":"10.1038\/gim.2015.72","volume":"18","author":"S Dheensa","year":"2015","unstructured":"Dheensa S, Fenwick A, Shkedi-Rafid S, Crawford G, Lucassen A (2015b) Health-care professionals\u2019 responsibility to patients\u2019 relatives in genetic medicine: a systematic review and synthesis of empirical research. Genet Med 18:290\u2013301","journal-title":"Genet Med"},{"key":"331_CR35","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/gb-2012-13-1-r1","volume":"13","author":"ES Dove","year":"2012","unstructured":"Dove ES, Joly Y, Knoppers BM (2012) Power to the people: a Wiki-governance model for biobanks. Genome Biol 13:1","journal-title":"Genome Biol"},{"key":"331_CR36","unstructured":"EASAC and FEAM Working Group (2012) Direct-to-consumer genetic testing for health-related purposes in the European Union. EASAC Policy Paper 18. Available at: http:\/\/www.easac.eu\/fileadmin\/Reports\/EASAC_Genetic_Testing_Web_complete.pdf Accessed on 15 Sept 2017"},{"key":"331_CR37","doi-asserted-by":"crossref","first-page":"S2","DOI":"10.1038\/527S2a","volume":"527","author":"M Eisenstein","year":"2015","unstructured":"Eisenstein M (2015) Big data: the power of petabytes. Nature 527:S2\u2013S4","journal-title":"Nature"},{"key":"331_CR38","doi-asserted-by":"crossref","first-page":"199","DOI":"10.1007\/s10897-016-0008-0","volume":"26","author":"I Eisler","year":"2017","unstructured":"Eisler I et al (2017) Training genetic counsellors to deliver an innovative therapeutic intervention: their views and experience of facilitating multi-family discussion groups. J Genet Couns 26:199\u2013214","journal-title":"J Genet Couns"},{"key":"331_CR39","doi-asserted-by":"crossref","first-page":"e1001983","DOI":"10.1371\/journal.pbio.1001983","volume":"12","author":"Y Erlich","year":"2014","unstructured":"Erlich Y et al (2014) Redefining genomic provacy: trust and empowerment. PLoS Biol 12:e1001983","journal-title":"PLoS Biol"},{"key":"331_CR40","volume-title":"Governance of data access","author":"Expert Advisory Group on Data Access","year":"2015","unstructured":"Expert Advisory Group on Data Access (2015) Governance of data access. Wellcome Trust, London"},{"key":"331_CR41","doi-asserted-by":"crossref","first-page":"147","DOI":"10.1007\/s10790-007-9090-8","volume":"41","author":"C Farrelly","year":"2007","unstructured":"Farrelly C (2007) Gene patents and justice. J Value Inq 41:147\u2013163","journal-title":"J Value Inq"},{"key":"331_CR42","unstructured":"Federal Trade Commission (2014) Data brokers: a call for transparency and accountability. A report of the Federal Trade Commission (May 2014). Available from www.ftc.gov\/system\/files\/documents\/reports\/data-brokers-call-transparency-accountabilityreport-federal-trade-commission-may-2014\/140527databrokerreport.pdf"},{"key":"331_CR43","first-page":"83","volume":"19","author":"O Feeney","year":"2012","unstructured":"Feeney O (2012) Incentives, genetics and the egalitarian ethos. Ethical Perspect 19:83","journal-title":"Ethical Perspect"},{"key":"331_CR44","doi-asserted-by":"crossref","first-page":"612","DOI":"10.1038\/sj.ejhg.5201822","volume":"15","author":"LE Forrest","year":"2007","unstructured":"Forrest LE, Delatycki MB, Skene L, Aitken M (2007) Communicating genetic information in families\u2014a review of guidelines and position papers. Eur J Hum Genet 15:612\u2013618","journal-title":"Eur J Hum Genet"},{"key":"331_CR45","doi-asserted-by":"crossref","unstructured":"Gershon ES, Alliey-Rodriguez N (2013) New ethical issues for genetic counseling in common mental disorders. Am J Psychiatry","DOI":"10.1176\/appi.ajp.2013.12121558"},{"key":"331_CR46","doi-asserted-by":"crossref","first-page":"366","DOI":"10.1097\/GCO.0000000000000101","volume":"26","author":"V Gomez-Lobo","year":"2014","unstructured":"Gomez-Lobo V (2014) Multidisciplinary care for individuals with disorders of sex development. Curr Opin Obstet Gynecol 26:366","journal-title":"Curr Opin Obstet Gynecol"},{"key":"331_CR47","doi-asserted-by":"crossref","first-page":"16957","DOI":"10.1073\/pnas.1315934110","volume":"110","author":"ML Gonzalez-Garay","year":"2013","unstructured":"Gonzalez-Garay ML, McGuire AL, Pereira S, Caskey CT (2013) Personalized genomic disease risk of volunteers. Proc Natl Acad Sci 110:16957\u201316962","journal-title":"Proc Natl Acad Sci"},{"key":"331_CR48","doi-asserted-by":"crossref","first-page":"S211","DOI":"10.1542\/peds.2013-1032E","volume":"132","author":"WW Grody","year":"2013","unstructured":"Grody WW, Thompson BH, Hudgins L (2013) Whole-exome\/genome sequencing and genomics. Pediatr 132:S211\u2013S215","journal-title":"Pediatr"},{"key":"331_CR49","doi-asserted-by":"crossref","first-page":"321","DOI":"10.1126\/science.1229566","volume":"339","author":"M Gymrek","year":"2013","unstructured":"Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y (2013) Identifying personal genomes by surnmae inference. Sci 339:321\u2013324","journal-title":"Sci"},{"key":"331_CR50","doi-asserted-by":"crossref","first-page":"317","DOI":"10.1136\/medethics-2013-101996","volume":"41","author":"N Hallowell","year":"2015","unstructured":"Hallowell N, Hall A, Alberg C, Zimmern R (2015) Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: some ethical issue. J Med Ethics 41:317\u2013321","journal-title":"J Med Ethics"},{"key":"331_CR51","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/gm87","volume":"1","author":"N Hawkins","year":"2009","unstructured":"Hawkins N, de Vries J, Boddington P, Kaye J, Heeney C (2009) Planning for translational research in genomics. Genome Med 1:1","journal-title":"Genome Med"},{"key":"331_CR52","doi-asserted-by":"crossref","first-page":"312","DOI":"10.1038\/486312a","volume":"486","author":"EC Hayden","year":"2012","unstructured":"Hayden EC (2012) A broken contract. Nature 486:312\u2013314","journal-title":"Nature"},{"key":"331_CR53","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1007\/s10897-012-9514-x","volume":"22","author":"J Hodgson","year":"2013","unstructured":"Hodgson J, Gaff C (2013) Enhancing family communication about genetics: ethical and professional dilemmas. J Genet Couns 22:16\u201321","journal-title":"J Genet Couns"},{"key":"331_CR54","doi-asserted-by":"crossref","first-page":"e1000167","DOI":"10.1371\/journal.pgen.1000167","volume":"4","author":"N Homer","year":"2008","unstructured":"Homer N et al (2008) Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genet 4:e1000167","journal-title":"PLoS Genet"},{"key":"331_CR55","doi-asserted-by":"crossref","first-page":"145","DOI":"10.1111\/j.1533-8525.2008.01136.x","volume":"50","author":"W Hong","year":"2009","unstructured":"Hong W, Walsh JP (2009) For money or glory? Commercialization, competition, and secrecy in the entrepreneural university. Soc Q 50:145\u2013171","journal-title":"Soc Q"},{"key":"331_CR56","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1007\/s12687-011-0062-0","volume":"3","author":"HC Howard","year":"2012","unstructured":"Howard HC, Borry P (2012) Is there a doctor in the house? J Community Genet 3:105\u2013112","journal-title":"J Community Genet"},{"key":"331_CR57","unstructured":"Human Genome Organisation (1996) Summary of principles agreed at the first international strategy meeting on human genome sequencing. Human Genome Organization. Available at: http:\/\/www.casimir.org.uk\/storyfiles\/64.0.summary_of_bermuda_principles.pdf"},{"key":"331_CR58","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1016\/j.ymgme.2014.07.016","volume":"113","author":"V Iacobazzi","year":"2014","unstructured":"Iacobazzi V, Infantino V, Castegna A, Andria G (2014) Hyperhomocysteinemia: related genetic diseases and congenital defects, abnormal DNA methylation and newborn screening issues. Mol Genet Metab 113:27\u201333","journal-title":"Mol Genet Metab"},{"key":"331_CR59","doi-asserted-by":"crossref","first-page":"404","DOI":"10.1097\/ACI.0000000000000091","volume":"14","author":"Y Joly","year":"2014","unstructured":"Joly Y, Saulnier KM, Osien G, Knoppers BM (2014) The ethical framing of personalized medicine. Curr Opin Allergy Clin Immunol 14:404\u2013408","journal-title":"Curr Opin Allergy Clin Immunol"},{"key":"331_CR60","doi-asserted-by":"crossref","first-page":"97","DOI":"10.1177\/0968533215618441","volume":"15","author":"L Kalokairinou","year":"2015","unstructured":"Kalokairinou L, Howard HC, Borry P (2015) Current developments in the regulation of direct-to-consumer gentic testing in Europe. Med Law Int 15:97\u2013123","journal-title":"Med Law Int"},{"key":"331_CR61","doi-asserted-by":"crossref","first-page":"415","DOI":"10.1038\/nrg3493","volume":"14","author":"SH Katsanis","year":"2013","unstructured":"Katsanis SH, Katsanis N (2013) Molecular genetic testing and the future of clinical genomics. Nat Rev Genet 14:415\u2013426","journal-title":"Nat Rev Genet"},{"key":"331_CR62","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1007\/s00439-011-1063-0","volume":"130","author":"J Kaye","year":"2011","unstructured":"Kaye J (2011) From single biobanks to international networks: developing e-governance. Human Genetics 130:377\u2013382","journal-title":"Human Genetics"},{"key":"331_CR63","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/gm523","volume":"6","author":"J Kaye","year":"2014","unstructured":"Kaye J, Hawkins N (2014) Data sharing policy design for consortia: challenges for sustainability. Genome Med 6:1","journal-title":"Genome Med"},{"key":"331_CR64","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/s40504-015-0028-9","volume":"11","author":"J Kaye","year":"2015","unstructured":"Kaye J, Muddyman D, Smee C, Kennedy K, Bell J (2015a) \u2018Pop-Up\u2019 Governance: developing internal governance frameworks for consortia: the example of UK10K. Life Sci, Soc Policy 11:1","journal-title":"Life Sci, Soc Policy"},{"key":"331_CR65","doi-asserted-by":"crossref","first-page":"141","DOI":"10.1038\/ejhg.2014.71","volume":"23","author":"J Kaye","year":"2015","unstructured":"Kaye J, Whitley EA, Lund D, Morrison M, Teare H, Melham K (2015b) Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet 23:141\u2013146","journal-title":"Eur J Hum Genet"},{"key":"331_CR66","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/gm262","volume":"3","author":"BM Knoppers","year":"2011","unstructured":"Knoppers BM, Harris JR, Tass\u00e9 AM, Budin-Lj\u00f8sne I, Kaye J, Desch\u00eanes M, Zawati MZ (2011) Towards a data sharing Code of Conduct of international genomic research. Genome Med 3:1","journal-title":"Genome Med"},{"issue":"229","key":"331_CR67","doi-asserted-by":"crossref","first-page":"229cm222","DOI":"10.1126\/scitranslmed.3008494","volume":"6","author":"BM Knoppers","year":"2014","unstructured":"Knoppers BM, S\u00e9n\u00e9cal K, Borry P, Avard D (2014) Whole-genome sequencing in newborn screening programs. Sci Transl Med 6(229):229cm222","journal-title":"Sci Transl Med"},{"key":"331_CR68","doi-asserted-by":"crossref","first-page":"419","DOI":"10.1038\/nature19310","volume":"536","author":"I Lazaridis","year":"2016","unstructured":"Lazaridis I et al (2016) Genomic insights into the origin of farming in the ancient near east. Nature 536:419\u2013424","journal-title":"Nature"},{"key":"331_CR69","doi-asserted-by":"crossref","first-page":"368","DOI":"10.1159\/000276767","volume":"13","author":"A Lemke","year":"2010","unstructured":"Lemke A, Wolf W, Hebert-Beirne J, Smith M (2010) Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 13:368\u2013377","journal-title":"Public Health Genomics"},{"key":"331_CR70","first-page":"ix","volume":"164","author":"D Levenson","year":"2014","unstructured":"Levenson D (2014) Whole-exome sequencing emerges as clinical diagnostic tool. American Journal of Medical Genetics Part A 164:ix\u2013ix","journal-title":"American Journal of Medical Genetics Part A"},{"key":"331_CR71","doi-asserted-by":"crossref","first-page":"519","DOI":"10.1097\/01.ogx.0000494727.10821.cc","volume":"71","author":"D Levenson","year":"2016","unstructured":"Levenson D (2016) Genetic discrimination lawsuit raises broader concerns about testing, privacy: case involves middle school student impacted by results of genetic screening test as newborn. Obstet Gynecol Surv 71:519\u2013520","journal-title":"Obstet Gynecol Surv"},{"key":"331_CR72","first-page":"85","volume-title":"Research handbook on digital transformations","author":"D Lupton","year":"2015","unstructured":"Lupton D (2015) Digital health technologies and digital data: new ways of monitoring, measuring and commodifying human embodiment, health and illness. In: Olleros FX, Zhegu M (eds) Research handbook on digital transformations. Edward Elgar, Cheltenham, pp 85\u2013102"},{"key":"331_CR73","doi-asserted-by":"crossref","first-page":"e2000206","DOI":"10.1371\/journal.pbio.2000206","volume":"14","author":"MA Majumder","year":"2016","unstructured":"Majumder MA, Cook-Deegan R, McGuire AL (2016) Beyond our borders? Public resistance to global genomic data sharing. PLoS Biol 14:e2000206","journal-title":"PLoS Biol"},{"key":"331_CR74","doi-asserted-by":"crossref","first-page":"258","DOI":"10.1038\/gim.2012.157","volume":"15","author":"TA Manolio","year":"2013","unstructured":"Manolio TA et al (2013) Implementing genomic medicine in the clinic: the future is here. Genet Med 15:258\u2013267","journal-title":"Genet Med"},{"key":"331_CR75","doi-asserted-by":"crossref","first-page":"e192","DOI":"10.1371\/journal.pmed.0050192","volume":"5","author":"D Mascalzoni","year":"2008","unstructured":"Mascalzoni D, Hicks A, Pramstaller P, Wjst M (2008) Informed consent in the genomics era. PLoS Med 5:e192","journal-title":"PLoS Med"},{"key":"331_CR76","doi-asserted-by":"publisher","first-page":"53","DOI":"10.1159\/000321962","volume":"14","author":"AL McGuire","year":"2011","unstructured":"McGuire AL, Burke W (2011) Health system implications of direct-to-consumer personal genome testing. Public Health Genom 14:53\u201358. https:\/\/doi.org\/10.1159\/000321962","journal-title":"Public Health Genom"},{"key":"331_CR77","doi-asserted-by":"crossref","first-page":"163","DOI":"10.1007\/s10689-004-7992-1","volume":"4","author":"I Mesters","year":"2005","unstructured":"Mesters I, Ausems M, Eichhorn S, Vasen H (2005) Informing one\u2019s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study. Familial Cancer 4:163\u2013167","journal-title":"Familial Cancer"},{"key":"331_CR78","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1002\/mgg3.123","volume":"3","author":"A Middleton","year":"2015","unstructured":"Middleton A, Hall G, Patch C (2015) Genetic counselors and genomic counseling in the United Kingdom. Mol Genet Genomic Med 3:79\u201383","journal-title":"Mol Genet Genomic Med"},{"key":"331_CR79","doi-asserted-by":"crossref","first-page":"309","DOI":"10.1126\/science.1199554","volume":"332","author":"R Mitchell","year":"2011","unstructured":"Mitchell R, Conley JM, Davis AM, Cadigan RJ, Dobson AW, Gladden RQ (2011) Genomics, biobanks, and the trade-secret model. Science 332:309\u2013310","journal-title":"Science"},{"key":"331_CR80","doi-asserted-by":"crossref","first-page":"303","DOI":"10.1007\/s11948-015-9652-2","volume":"22","author":"BD Mittelstadt","year":"2016","unstructured":"Mittelstadt BD, Floridi L (2016) The ethics of big data: current and foreseeable issues in biomedical contexts. Sc Eng Ethics 22:303\u2013341","journal-title":"Sc Eng Ethics"},{"key":"331_CR81","doi-asserted-by":"crossref","first-page":"581","DOI":"10.5858\/arpa.2014-0497-ED","volume":"139","author":"C Morrison","year":"2014","unstructured":"Morrison C, Trump D, Nowak JA (2014) How will the \u201c$1,000 dollar genome\u201d meet reality (and centers for Medicare & Medicaid Services)? Arch Pathol Lab Med 139:581\u2013582","journal-title":"Arch Pathol Lab Med"},{"key":"331_CR82","unstructured":"National Institutes of Health (2014) NIH genomic data sharing policy. Available at: https:\/\/grants.nih.gov\/grants\/guide\/notice-files\/NOT-OD-14-124.html . Accessed on 15 September 2017"},{"key":"331_CR83","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1016\/j.atg.2016.01.005","volume":"8","author":"E Niemiec","year":"2016","unstructured":"Niemiec E, Howard HC (2016) Ethical issues in consumer genome sequencing: use of consumers\u2019 samples and data. Appl Transl Genomics 8:23\u201330","journal-title":"Appl Transl Genomics"},{"key":"331_CR84","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1586\/erm.12.116","volume":"13","author":"H Nobile","year":"2013","unstructured":"Nobile H, Vermeulen E, Thys K, Bergmann MM, Borry P (2013) Why do participants enroll in population biobank studies? A systematic literature review. Expert Rev Mol Diagn 13:35\u201347","journal-title":"Expert Rev Mol Diagn"},{"key":"331_CR85","first-page":"485","volume":"29","author":"C Novas","year":"2000","unstructured":"Novas C, Rose N (2000) Genetic risk and the birth of the somatic individual. Expert Rev Mol Diagn 29:485\u2013513","journal-title":"Expert Rev Mol Diagn"},{"key":"331_CR86","doi-asserted-by":"crossref","first-page":"54","DOI":"10.1186\/s12910-016-0137-x","volume":"17","author":"KC O\u2019Doherty","year":"2016","unstructured":"O\u2019Doherty KC et al (2016) If you build it, they will come: unintended future uses of organised health data collections. BMC Med Ethics 17:54","journal-title":"BMC Med Ethics"},{"key":"331_CR87","doi-asserted-by":"crossref","unstructured":"O\u2019Riordan K (2016) The genome incorporated: constructing biodigital identity. Routledge","DOI":"10.4324\/9781315557793"},{"key":"331_CR88","first-page":"217","volume":"21","author":"M Otlowski","year":"2013","unstructured":"Otlowski M (2013) Australian reforms enabling disclosure of genetic information to genetic relatives by health practitioners. J Law Med 21:217\u2013234","journal-title":"J Law Med"},{"key":"331_CR89","doi-asserted-by":"crossref","first-page":"147","DOI":"10.1007\/s12687-017-0296-6","volume":"8","author":"M Paneque","year":"2017","unstructured":"Paneque M et al (2017) Implementing genetic education in primary care: the Gen-Equip programme. J Community Genet 8:147\u2013150","journal-title":"J Community Genet"},{"key":"331_CR90","doi-asserted-by":"crossref","first-page":"739","DOI":"10.3390\/genes5030739","volume":"5","author":"S Pereira","year":"2014","unstructured":"Pereira S, Gibbs RA, McGuire AL (2014) Open access data sharing in genomic research. Genes 5:739\u2013747","journal-title":"Genes"},{"key":"331_CR91","doi-asserted-by":"crossref","first-page":"e0122499","DOI":"10.1371\/journal.pone.0122499","volume":"10","author":"M-P Pomey","year":"2015","unstructured":"Pomey M-P, Ghadiri DP, Karazivan P, Fernandez N, Clavel N (2015) Patients as partners: a qualitative study of patients\u2019 engagement in their health care. PloS one 10:e0122499","journal-title":"PloS one"},{"key":"331_CR92","doi-asserted-by":"crossref","first-page":"241","DOI":"10.1016\/j.yebeh.2014.06.018","volume":"37","author":"MA Ream","year":"2014","unstructured":"Ream MA, Mikati MA (2014) Clinical utility of genetic testing in pediatric drug-resistant epilepsy: a pilot study. Epilepsy Behav 37:241\u2013248","journal-title":"Epilepsy Behav"},{"key":"331_CR93","doi-asserted-by":"publisher","first-page":"259","DOI":"10.1038\/nrg.2016.162","volume":"18","author":"HL Rehm","year":"2017","unstructured":"Rehm HL (2017) Evolving health care through personal genomics. Nat Rev Genet 18:259\u2013267. https:\/\/doi.org\/10.1038\/nrg.2016.162","journal-title":"Nat Rev Genet"},{"key":"331_CR94","doi-asserted-by":"crossref","first-page":"1322","DOI":"10.1002\/humu.22370","volume":"34","author":"T Rigter","year":"2013","unstructured":"Rigter T et al (2013) Reflecting on earlier experiences with unsolicited findings: points to consider for next-generation sequencing and informed consent in diagnostics. Human Mutation 34:1322\u20131328","journal-title":"Human Mutation"},{"key":"331_CR95","doi-asserted-by":"crossref","first-page":"18","DOI":"10.1038\/nbt.3757","volume":"35","author":"JL Roberts","year":"2017","unstructured":"Roberts JL, Pereira S, McGuire AL (2017) Should you profit from your genome? Nat Biotechnol 35:18\u201320","journal-title":"Nat Biotechnol"},{"key":"331_CR96","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1080\/15265161.2010.494215","volume":"10","author":"MA Rothstein","year":"2010","unstructured":"Rothstein MA (2010) Is deidentification sufficient to protect health privacy in research? Am J Bioeth 10:3\u201311","journal-title":"Am J Bioeth"},{"key":"331_CR97","doi-asserted-by":"crossref","unstructured":"Severin F et al (2015) Points to consider for prioritizing clinical genetic testing services: a European consensus process oriented at accountability for reasonableness. European Journal of Human Genetics, 735 23:729","DOI":"10.1038\/ejhg.2014.190"},{"key":"331_CR98","doi-asserted-by":"crossref","first-page":"1053","DOI":"10.1586\/14737159.2014.961917","volume":"14","author":"M Shabani","year":"2014","unstructured":"Shabani M, Bezuidenhout L, Borry P (2014) Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review. Expert Rev Mol Diagn 14:1053\u20131065","journal-title":"Expert Rev Mol Diagn"},{"key":"331_CR99","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/s40504-014-0022-7","volume":"11","author":"M Shabani","year":"2015","unstructured":"Shabani M, Borry P (2015) Challenges of web-based personal genomic data sharing. Life Sci Soc Policy 11:1","journal-title":"Life Sci Soc Policy"},{"key":"331_CR100","doi-asserted-by":"crossref","first-page":"e1002339","DOI":"10.1371\/journal.pbio.1002339","volume":"13","author":"M Shabani","year":"2015","unstructured":"Shabani M, Dyke SO, Joly Y, Borry P (2015a) Controlled access under review: improving the governance of genomic data access. PLoS Biol 13:e1002339","journal-title":"PLoS Biol"},{"key":"331_CR101","doi-asserted-by":"crossref","first-page":"507","DOI":"10.15252\/emmm.201405002","volume":"7","author":"M Shabani","year":"2015","unstructured":"Shabani M, Knoppers BM, Borry P (2015b) From the principles of genomic data sharing to the practices of data access committees. Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review. EMBO Mol Med 7:507\u2013509","journal-title":"EMBO Mol Med"},{"key":"331_CR102","doi-asserted-by":"crossref","first-page":"631","DOI":"10.1016\/j.ajhg.2015.09.010","volume":"97","author":"SS Shringarpure","year":"2015","unstructured":"Shringarpure SS, Bustamante CD (2015) Privacy risks from genomic data-sharing beacons. Am J Hum Genet 97:631\u2013646","journal-title":"Am J Hum Genet"},{"key":"331_CR103","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1111\/j.1399-0004.2012.01863.x","volume":"82","author":"H Skirton","year":"2012","unstructured":"Skirton H, Goldsmith L, Jackson L, O\u2019Connor A (2012) Direct to consumer genetic testing: a systematic review of position statements, policies and recommendations. Clin Genet 82:210\u2013218","journal-title":"Clin Genet"},{"issue":"265","key":"331_CR104","doi-asserted-by":"crossref","first-page":"265ra168","DOI":"10.1126\/scitranslmed.3010076","volume":"6","author":"SE Soden","year":"2014","unstructured":"Soden SE et al (2014) Effectiveness of exome and genome sequencing guided by acuity of illness for diagnosis of neurodevelopmental disorders. Sci Transl Med 6(265):265ra168","journal-title":"Sci Transl Med"},{"key":"331_CR105","unstructured":"Stemerding D, Krom A (2013) Expert paper for the future panel on public health genomics"},{"key":"331_CR106","doi-asserted-by":"crossref","first-page":"e1002195","DOI":"10.1371\/journal.pbio.1002195","volume":"13","author":"ZD Stephens","year":"2015","unstructured":"Stephens ZD et al (2015) Big data: astronomical or genomical? PLoS Biol 13:e1002195","journal-title":"PLoS Biol"},{"key":"331_CR107","doi-asserted-by":"crossref","unstructured":"Sterckx S, Cockbain J (2016) The natural, the informational, the claimable? Human body material in US and European patent law. In: van Klink B, van Beers B, Poort L (eds) Symbolic legislation theory and developments in biolaw. Springer, pp 215\u2013236","DOI":"10.1007\/978-3-319-33365-6_13"},{"key":"331_CR108","first-page":"205520761560564","volume":"1","author":"HJ Teare","year":"2015","unstructured":"Teare HJ, Morrison M, Whitley EA, Kaye J (2015) Towards \u2018engagement 2.0\u2019: insights from a study of dynamic consent with biobank participants digital. Health 1:2055207615605644","journal-title":"Health"},{"key":"331_CR109","doi-asserted-by":"crossref","first-page":"1260","DOI":"10.1158\/1055-9965.EPI-13-0198","volume":"22","author":"KP Tercyak","year":"2013","unstructured":"Tercyak KP et al (2013) Decisional outcomes of maternal disclosure of BRCA1\/2 genetic test results to children. Cancer Epidemiol Biomark Prev 22:1260\u20131266","journal-title":"Cancer Epidemiol Biomark Prev"},{"key":"331_CR110","volume-title":"Guidelines for access to research data from public funding","author":"The Organisation for Economic Cooperation and Development","year":"2007","unstructured":"The Organisation for Economic Cooperation and Development (2007) Guidelines for access to research data from public funding. OECD, Paris, France"},{"key":"331_CR111","volume-title":"Opposition stirring to Kuwaiti law mandating DNA tests for all residents","author":"M Thielking","year":"2016","unstructured":"Thielking M (2016) Opposition stirring to Kuwaiti law mandating DNA tests for all residents. STAT, Boston, MA"},{"key":"331_CR112","doi-asserted-by":"crossref","first-page":"486","DOI":"10.1097\/GIM.0b013e3181e38f9e","volume":"12","author":"SB Trinidad","year":"2010","unstructured":"Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W (2010) Genomic research and wide data sharing: views of prospective participants. Genet Med 12:486\u2013495","journal-title":"Genet Med"},{"key":"331_CR113","doi-asserted-by":"crossref","first-page":"S1","DOI":"10.1038\/ejhg.2013.46","volume":"21","author":"CG El van","year":"2013","unstructured":"van El CG et al (2013) Whole-genome sequencing in health care. Eur J Hum Genet 21:S1\u2013S5","journal-title":"Eur J Hum Genet"},{"key":"331_CR114","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/gm520","volume":"6","author":"WA Zelst-Stams van","year":"2014","unstructured":"van Zelst-Stams WA, Scheffer H, Veltman JA (2014) Clinical exome sequencing in daily practice: 1,000 patients and beyond. Genome Med 6:1","journal-title":"Genome Med"},{"key":"331_CR115","doi-asserted-by":"crossref","first-page":"585","DOI":"10.1111\/j.1442-200X.2012.03644.x","volume":"54","author":"V Vasta","year":"2012","unstructured":"Vasta V, Merritt I, Lawrence J, Saneto RP, Hahn SH (2012) Next-generation sequencing for mitochondrial diseases: a wide diagnostic spectrum. Pediatr Int 54:585\u2013601","journal-title":"Pediatr Int"},{"key":"331_CR116","doi-asserted-by":"publisher","first-page":"905","DOI":"10.1002\/humu.23259","volume":"38","author":"DF Vears","year":"2017","unstructured":"Vears DF, Senecal K, Borry P (2017a) Reporting practices for unsolicited and secondary findings from next-generation sequencing technologies: perspectives of laboratory personnel. Hum Mutat 38:905\u2013911. https:\/\/doi.org\/10.1002\/humu.23259","journal-title":"Hum Mutat"},{"key":"331_CR117","doi-asserted-by":"publisher","unstructured":"Vears DF, Senecal K, Borry P (2017b) Reporting practices for variants of uncertain significance from next generation sequencing technologies. Eur J Med Genet. https:\/\/doi.org\/10.1016\/j.ejmg.2017.07.016","DOI":"10.1016\/j.ejmg.2017.07.016"},{"key":"331_CR118","doi-asserted-by":"crossref","first-page":"333","DOI":"10.1097\/GIM.0b013e318204cfed","volume":"13","author":"J Vos","year":"2011","unstructured":"Vos J, Jansen AM, Menko F, Van Asperen CJ, Stiggelbout AM, Tibben A (2011) Family communication matters: the impact of telling relatives about unclassified variants and uninformative DNA-test results. Genet Med 13:333\u2013341","journal-title":"Genet Med"},{"key":"331_CR119","doi-asserted-by":"crossref","first-page":"537","DOI":"10.1016\/S0140-6736(10)62234-9","volume":"377","author":"M Walport","year":"2011","unstructured":"Walport M, Brest P (2011) Sharing research data to improve public health. The Lancet 377:537\u2013539","journal-title":"The Lancet"},{"key":"331_CR120","doi-asserted-by":"crossref","first-page":"181","DOI":"10.1111\/bioe.12176","volume":"30","author":"M Weaver","year":"2016","unstructured":"Weaver M (2016) The double helix: applying an ethic of care to the duty to warn genetic relatives of genetic information. Bioethics 30:181\u2013187","journal-title":"Bioethics"},{"key":"331_CR121","first-page":"107","volume-title":"Genetics as social practice: transdisciplinary views on science and culture","author":"G Werner-Felmayer","year":"2014","unstructured":"Werner-Felmayer G (2014) Consequences of sequences, codes and messages: artistic and scientific readings of chromosomes in an era of consumerism. In: Prainsack B, Schicktanz S, Werner-Felmayer G (eds) Genetics as social practice: transdisciplinary views on science and culture. Ashgate, Surrey, pp 107\u2013128"},{"key":"331_CR122","doi-asserted-by":"crossref","unstructured":"Widdows H (2013) The connected self: the ethics and governance of the genetic individual. Cambridge University Press, Cambridge","DOI":"10.1017\/CBO9781139051798"},{"key":"331_CR123","doi-asserted-by":"publisher","first-page":"377","DOI":"10.1038\/nbt.3516","volume":"34","author":"J Wilbanks","year":"2016","unstructured":"Wilbanks J, Friend SH (2016) First, design for data sharing. Nat Biotech 34:377\u2013379. https:\/\/doi.org\/10.1038\/nbt.3516","journal-title":"Nat Biotech"},{"key":"331_CR124","doi-asserted-by":"crossref","first-page":"240","DOI":"10.1002\/bimj.201500044","volume":"59","author":"G Williams","year":"2017","unstructured":"Williams G, Pigeot I (2017) Consent and confidentiality in the light of recent demands for data sharing. Biom J 59:240\u2013250","journal-title":"Biom J"},{"key":"331_CR125","doi-asserted-by":"crossref","DOI":"10.2196\/medinform.3525","volume":"3","author":"H Williams","year":"2015","unstructured":"Williams H, Spencer K, Sanders C, Lund D, Whitley EA, Kaye J, Dixon WG (2015) Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research. JMIR Med Inform 3:e3","journal-title":"JMIR Med Inform"},{"key":"331_CR126","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/1472-6939-11-21","volume":"11","author":"M Wjst","year":"2010","unstructured":"Wjst M (2010) Caught you: threats to confidentiality due to the public release of large-scale genetic data sets. BMC Med Ethics 11:1","journal-title":"BMC Med Ethics"},{"key":"331_CR127","doi-asserted-by":"crossref","first-page":"250","DOI":"10.1634\/theoncologist.12-3-250","volume":"12","author":"EA Zerhouni","year":"2007","unstructured":"Zerhouni EA, Sanders CA, von Eschenbach AC (2007) The biomarkers consortium: public and private sectors working in partnership to improve the public health. Oncol 12:250\u2013252","journal-title":"Oncol"}],"container-title":["Journal of Community Genetics"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/article\/10.1007\/s12687-017-0331-7\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s12687-017-0331-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s12687-017-0331-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,10,18]],"date-time":"2020-10-18T07:32:23Z","timestamp":1603006343000},"score":1,"resource":{"primary":{"URL":"http:\/\/link.springer.com\/10.1007\/s12687-017-0331-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,9,26]]},"references-count":127,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2018,4]]}},"alternative-id":["331"],"URL":"https:\/\/doi.org\/10.1007\/s12687-017-0331-7","relation":{},"ISSN":["1868-310X","1868-6001"],"issn-type":[{"type":"print","value":"1868-310X"},{"type":"electronic","value":"1868-6001"}],"subject":[],"published":{"date-parts":[[2017,9,26]]}}}