What is the greatest challenge faced by genome sequencing?

  • Appelbaum PS (2007) Assessment of patients’ competence to consent to treatment. N Engl J Med 357:1834–1840

    CAS  PubMed  Article  Google Scholar 

  • Arias JJ, Pham-Kanter G, Gonzalez R, Campbell EG (2016) Trust, vulnerable populations, and genetic data sharing. J Law Biosci 2:747–753

    Google Scholar 

  • Árnason E, Andersen B (2013) deCODE and Iceland: a critique. eLS

  • Ayme S, JRC LG, Matthijs G, Borry P (2013) European workshop on genetic testing offer in Europe. EUR-Scientific and Technical Research Reports

  • Babkina N, Graham JM Jr (2014) New genetic testing in prenatal diagnosis.Semin Fetal Neonatal Med 19(3):214–9

  • 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

  • Barbui C (2016) Sharing all types of clinical data and harmonizing journal standards. BMC Medicine 14:1

    Article  Google Scholar 

  • 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

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • 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 82:205–209

    CAS  PubMed  Article  Google Scholar 

  • 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

  • Bobrow M (2015) Funders must encourage scientists to share. Nature 522:129–129

    CAS  PubMed  Article  Google Scholar 

  • 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 17:485–492

    PubMed  PubMed Central  Article  Google Scholar 

  • Budin-Ljøsne I, Isaeva J, Knoppers BM, Tassé AM, Shen H-Y, MI MC, Harris JR (2014) Data sharing in large research consortia: experiences and recommendations from ENGAGE. Eur J Hum Genet 22:317–321

    PubMed  Article  Google Scholar 

  • Budin-Ljøsne I et al (2016) Feedback of individual genetic results to research participants: is it feasible in Europe? Biopreserv Biobanking 14:241–248

    Article  Google Scholar 

  • Budin-Ljøsne I et al (2017) Dynamic consent: a potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics 18:4

    PubMed  PubMed Central  Article  Google Scholar 

  • Burn J (2016) A federated ecosystem for sharing genomic, clinical data. Science 352:1278–1280. https://doi.org/10.1126/science.aaf6162

    Article  Google Scholar 

  • Caleshu C, Ashley EA (2016) Taming the genome: towards better genetic interpretation. Genome Med 8:70

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • 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):520–521

  • 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):1106–1112

  • 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):627–644

    PubMed  PubMed Central  Google Scholar 

  • Caulfield T et al (2014) A review of the key issues associated with the commercialization of biobanks. J Law Biosci 1:94–110

    PubMed  PubMed Central  Article  Google Scholar 

  • Chalmers D, Nicol D (2004) Commercialisation of biotechnology: public trust and research International. J Biotechnol 6:116–133

    Google Scholar 

  • Contreras JL (2014) Constructing the genome commons. In: Frishcmann B, Madison M, Strandburg K (eds) Governing knowledge commons. Oxford University Press, Oxford, UK

    Google Scholar 

  • 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 21:585–588

    PubMed  Article  Google Scholar 

  • Costa FF (2012) Big data in genomics: challenges and solutions. GIT Lab J 11:1–4

    Google Scholar 

  • 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 20:347–366

    Article  Google Scholar 

  • 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 20:161–179

    CAS  PubMed  Article  Google Scholar 

  • D’Audiffret van Haecke D, de Montgolfier S (2016) Genetic test results and disclosure to family members: qualitative interviews of healthcare professionals’ perceptions of ethical and professional issues in France. J Genet Couns 25:483–494

    PubMed  Article  Google Scholar 

  • 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 15:697–706

    PubMed  PubMed Central  Article  Google Scholar 

  • 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 25:1179–1187

    PubMed  PubMed Central  Article  Google Scholar 

  • Department of Health UK (2013) Healthcare: public private partnerships. Department of Health, London, UK

    Google Scholar 

  • Dheensa S, Fenwick A, Lucassen A (2016) ‘Is this knowledge mine and nobody else’s? I don’t feel that.’ Patient views about consent, confidentiality and information-sharing in genetic medicine. J Med Ethics 42:145–146

    Article  Google Scholar 

  • Dheensa S, Fenwick A, Shkedi-Rafid S, Crawford G, Lucassen A (2015a) Health-care professionals’ responsibility to patients’ relatives in genetic medicine: a systematic review and synthesis of empirical research. Genet Med

  • Dheensa S, Fenwick A, Shkedi-Rafid S, Crawford G, Lucassen A (2015b) Health-care professionals’ responsibility to patients’ relatives in genetic medicine: a systematic review and synthesis of empirical research. Genet Med 18:290–301

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • Dove ES, Joly Y, Knoppers BM (2012) Power to the people: a Wiki-governance model for biobanks. Genome Biol 13:1

    Article  Google Scholar 

  • 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

  • Eisenstein M (2015) Big data: the power of petabytes. Nature 527:S2–S4

    CAS  PubMed  Article  Google Scholar 

  • 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 26:199–214

    PubMed  Article  Google Scholar 

  • Erlich Y et al (2014) Redefining genomic provacy: trust and empowerment. PLoS Biol 12:e1001983

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • Expert Advisory Group on Data Access (2015) Governance of data access. Wellcome Trust, London

    Google Scholar 

  • Farrelly C (2007) Gene patents and justice. J Value Inq 41:147–163

    Article  Google Scholar 

  • 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

  • Feeney O (2012) Incentives, genetics and the egalitarian ethos. Ethical Perspect 19:83

    Google Scholar 

  • Forrest LE, Delatycki MB, Skene L, Aitken M (2007) Communicating genetic information in families—a review of guidelines and position papers. Eur J Hum Genet 15:612–618

    PubMed  Article  Google Scholar 

  • Gershon ES, Alliey-Rodriguez N (2013) New ethical issues for genetic counseling in common mental disorders. Am J Psychiatry

  • Gomez-Lobo V (2014) Multidisciplinary care for individuals with disorders of sex development. Curr Opin Obstet Gynecol 26:366

    PubMed  PubMed Central  Article  Google Scholar 

  • Gonzalez-Garay ML, McGuire AL, Pereira S, Caskey CT (2013) Personalized genomic disease risk of volunteers. Proc Natl Acad Sci 110:16957–16962

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  • Grody WW, Thompson BH, Hudgins L (2013) Whole-exome/genome sequencing and genomics. Pediatr 132:S211–S215

    Article  Google Scholar 

  • Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y (2013) Identifying personal genomes by surnmae inference. Sci 339:321–324

    CAS  Article  Google Scholar 

  • 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 41:317–321

    PubMed  Article  Google Scholar 

  • Hawkins N, de Vries J, Boddington P, Kaye J, Heeney C (2009) Planning for translational research in genomics. Genome Med 1:1

    Article  Google Scholar 

  • Hayden EC (2012) A broken contract. Nature 486:312–314

    PubMed  Article  CAS  Google Scholar 

  • Hodgson J, Gaff C (2013) Enhancing family communication about genetics: ethical and professional dilemmas. J Genet Couns 22:16–21

    PubMed  Article  Google Scholar 

  • 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

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • Hong W, Walsh JP (2009) For money or glory? Commercialization, competition, and secrecy in the entrepreneural university. Soc Q 50:145–171

    Article  Google Scholar 

  • Howard HC, Borry P (2012) Is there a doctor in the house? J Community Genet 3:105–112

    PubMed  Article  Google Scholar 

  • 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

  • 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 113:27–33

    CAS  PubMed  Article  Google Scholar 

  • Joly Y, Saulnier KM, Osien G, Knoppers BM (2014) The ethical framing of personalized medicine. Curr Opin Allergy Clin Immunol 14:404–408

    PubMed  Article  Google Scholar 

  • Kalokairinou L, Howard HC, Borry P (2015) Current developments in the regulation of direct-to-consumer gentic testing in Europe. Med Law Int 15:97–123

    Article  Google Scholar 

  • Katsanis SH, Katsanis N (2013) Molecular genetic testing and the future of clinical genomics. Nat Rev Genet 14:415–426

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  • Kaye J (2011) From single biobanks to international networks: developing e-governance. Human Genetics 130:377–382

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  • Kaye J, Hawkins N (2014) Data sharing policy design for consortia: challenges for sustainability. Genome Med 6:1

    Article  Google Scholar 

  • Kaye J, Muddyman D, Smee C, Kennedy K, Bell J (2015a) ‘Pop-Up’ Governance: developing internal governance frameworks for consortia: the example of UK10K. Life Sci, Soc Policy 11:1

    Article  Google Scholar 

  • 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 23:141–146

    PubMed  Article  Google Scholar 

  • Knoppers BM, Harris JR, Tassé AM, Budin-Ljøsne I, Kaye J, Deschênes M, Zawati MZ (2011) Towards a data sharing Code of Conduct of international genomic research. Genome Med 3:1

    Article  Google Scholar 

  • Knoppers BM, Sénécal K, Borry P, Avard D (2014) Whole-genome sequencing in newborn screening programs. Sci Transl Med 6(229):229cm222

    Article  Google Scholar 

  • Lazaridis I et al (2016) Genomic insights into the origin of farming in the ancient near east. Nature 536:419–424

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  • 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 13:368–377

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  • Levenson D (2014) Whole-exome sequencing emerges as clinical diagnostic tool. American Journal of Medical Genetics Part A 164:ix–ix

    Google Scholar 

  • 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 71:519–520

    Article  Google Scholar 

  • 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 85–102

    Google Scholar 

  • Majumder MA, Cook-Deegan R, McGuire AL (2016) Beyond our borders? Public resistance to global genomic data sharing. PLoS Biol 14:e2000206

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • Manolio TA et al (2013) Implementing genomic medicine in the clinic: the future is here. Genet Med 15:258–267

    PubMed  PubMed Central  Article  Google Scholar 

  • Mascalzoni D, Hicks A, Pramstaller P, Wjst M (2008) Informed consent in the genomics era. PLoS Med 5:e192

    PubMed  PubMed Central  Article  Google Scholar 

  • McGuire AL, Burke W (2011) Health system implications of direct-to-consumer personal genome testing. Public Health Genom 14:53–58. https://doi.org/10.1159/000321962

    Article  Google Scholar 

  • Mesters I, Ausems M, Eichhorn S, Vasen H (2005) Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study. Familial Cancer 4:163–167

    PubMed  Article  Google Scholar 

  • Middleton A, Hall G, Patch C (2015) Genetic counselors and genomic counseling in the United Kingdom. Mol Genet Genomic Med 3:79–83

    PubMed  Article  Google Scholar 

  • Mitchell R, Conley JM, Davis AM, Cadigan RJ, Dobson AW, Gladden RQ (2011) Genomics, biobanks, and the trade-secret model. Science 332:309–310

    CAS  PubMed  Article  Google Scholar 

  • Mittelstadt BD, Floridi L (2016) The ethics of big data: current and foreseeable issues in biomedical contexts. Sc Eng Ethics 22:303–341

    Article  Google Scholar 

  • Morrison C, Trump D, Nowak JA (2014) How will the “$1,000 dollar genome” meet reality (and centers for Medicare & Medicaid Services)? Arch Pathol Lab Med 139:581–582

    PubMed  Article  Google Scholar 

  • 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

  • Niemiec E, Howard HC (2016) Ethical issues in consumer genome sequencing: use of consumers’ samples and data. Appl Transl Genomics 8:23–30

    Article  Google Scholar 

  • 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 13:35–47

    CAS  PubMed  Article  Google Scholar 

  • Novas C, Rose N (2000) Genetic risk and the birth of the somatic individual. Expert Rev Mol Diagn 29:485–513

    Google Scholar 

  • O’Doherty KC et al (2016) If you build it, they will come: unintended future uses of organised health data collections. BMC Med Ethics 17:54

    PubMed  PubMed Central  Article  Google Scholar 

  • O’Riordan K (2016) The genome incorporated: constructing biodigital identity. Routledge

  • Otlowski M (2013) Australian reforms enabling disclosure of genetic information to genetic relatives by health practitioners. J Law Med 21:217–234

    PubMed  Google Scholar 

  • Paneque M et al (2017) Implementing genetic education in primary care: the Gen-Equip programme. J Community Genet 8:147–150

    PubMed  PubMed Central  Article  Google Scholar 

  • Pereira S, Gibbs RA, McGuire AL (2014) Open access data sharing in genomic research. Genes 5:739–747

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • Pomey M-P, Ghadiri DP, Karazivan P, Fernandez N, Clavel N (2015) Patients as partners: a qualitative study of patients’ engagement in their health care. PloS one 10:e0122499

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • Ream MA, Mikati MA (2014) Clinical utility of genetic testing in pediatric drug-resistant epilepsy: a pilot study. Epilepsy Behav 37:241–248

    PubMed  Article  Google Scholar 

  • Rehm HL (2017) Evolving health care through personal genomics. Nat Rev Genet 18:259–267. https://doi.org/10.1038/nrg.2016.162

    CAS  PubMed  Article  Google Scholar 

  • 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 34:1322–1328

    PubMed  PubMed Central  Article  Google Scholar 

  • Roberts JL, Pereira S, McGuire AL (2017) Should you profit from your genome? Nat Biotechnol 35:18–20

    CAS  PubMed  Article  Google Scholar 

  • Rothstein MA (2010) Is deidentification sufficient to protect health privacy in research? Am J Bioeth 10:3–11

    PubMed  PubMed Central  Article  Google Scholar 

  • 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

  • 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 14:1053–1065

    CAS  PubMed  Article  Google Scholar 

  • Shabani M, Borry P (2015) Challenges of web-based personal genomic data sharing. Life Sci Soc Policy 11:1

    Article  Google Scholar 

  • Shabani M, Dyke SO, Joly Y, Borry P (2015a) Controlled access under review: improving the governance of genomic data access. PLoS Biol 13:e1002339

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • 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 7:507–509

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  • Shringarpure SS, Bustamante CD (2015) Privacy risks from genomic data-sharing beacons. Am J Hum Genet 97:631–646

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  • Skirton H, Goldsmith L, Jackson L, O’Connor A (2012) Direct to consumer genetic testing: a systematic review of position statements, policies and recommendations. Clin Genet 82:210–218

    CAS  PubMed  Article  Google Scholar 

  • 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

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • Stemerding D, Krom A (2013) Expert paper for the future panel on public health genomics

  • Stephens ZD et al (2015) Big data: astronomical or genomical? PLoS Biol 13:e1002195

    PubMed  PubMed Central  Article  CAS  Google Scholar 

  • 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 215–236

  • Teare HJ, Morrison M, Whitley EA, Kaye J (2015) Towards ‘engagement 2.0’: insights from a study of dynamic consent with biobank participants digital. Health 1:2055207615605644

    Google Scholar 

  • Tercyak KP et al (2013) Decisional outcomes of maternal disclosure of BRCA1/2 genetic test results to children. Cancer Epidemiol Biomark Prev 22:1260–1266

    Article  Google Scholar 

  • The Organisation for Economic Cooperation and Development (2007) Guidelines for access to research data from public funding. OECD, Paris, France

    Google Scholar 

  • Thielking M (2016) Opposition stirring to Kuwaiti law mandating DNA tests for all residents. STAT, Boston, MA

    Google Scholar 

  • 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 12:486–495

    PubMed  PubMed Central  Article  Google Scholar 

  • van El CG et al (2013) Whole-genome sequencing in health care. Eur J Hum Genet 21:S1–S5

    PubMed  PubMed Central  Google Scholar 

  • van Zelst-Stams WA, Scheffer H, Veltman JA (2014) Clinical exome sequencing in daily practice: 1,000 patients and beyond. Genome Med 6:1

    Article  CAS  Google Scholar 

  • Vasta V, Merritt I, Lawrence J, Saneto RP, Hahn SH (2012) Next-generation sequencing for mitochondrial diseases: a wide diagnostic spectrum. Pediatr Int 54:585–601

    CAS  PubMed  Article  Google Scholar 

  • 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 38:905–911. https://doi.org/10.1002/humu.23259

    PubMed  Article  Google Scholar 

  • 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

  • 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 13:333–341

    PubMed  Article  Google Scholar 

  • Walport M, Brest P (2011) Sharing research data to improve public health. The Lancet 377:537–539

    Article  Google Scholar 

  • Weaver M (2016) The double helix: applying an ethic of care to the duty to warn genetic relatives of genetic information. Bioethics 30:181–187

    PubMed  Article  Google Scholar 

  • 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 107–128

    Google Scholar 

  • Widdows H (2013) The connected self: the ethics and governance of the genetic individual. Cambridge University Press, Cambridge

  • Wilbanks J, Friend SH (2016) First, design for data sharing. Nat Biotech 34:377–379. https://doi.org/10.1038/nbt.3516

    CAS  Article  Google Scholar 

  • Williams G, Pigeot I (2017) Consent and confidentiality in the light of recent demands for data sharing. Biom J 59:240–250

    PubMed  Article  Google Scholar 

  • 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

    PubMed  PubMed Central  Article  Google Scholar 

  • Wjst M (2010) Caught you: threats to confidentiality due to the public release of large-scale genetic data sets. BMC Med Ethics 11:1

    Article  Google Scholar 

  • Zerhouni EA, Sanders CA, von Eschenbach AC (2007) The biomarkers consortium: public and private sectors working in partnership to improve the public health. Oncol 12:250–252

    Google Scholar 


Page 2

Five salient/key relationships in the realm of genetics and genomics and the central cross-cutting themes