Publications

Journal articles

Thys, K., Borry, P., Schotsmans, P., Dobbels, F. (2019). Should minors and young adults qualify as potential live kidney donors? The views of international transplant professionals. PEDIATRIC TRANSPLANTATION, 23 (6), Art.No. ARTN e13526. doi: 10.1111/petr.13526

Vears, D.F., Sénécal, K., Borry, P. (2019). Exploration of genetic health professional - Laboratory specialist interactions in diagnostic genomic sequencing. Eur J Med Genet. doi: 10.1016/j.ejmg.2019.103749

Obasa, M., Borry, P. (2019). The Landscape of the "Spirit of Sport" : A Systematic Review. J Bioeth Inq. doi: 10.1007/s11673-019-09934-0

Devriendt, T., Phillips, A., Shabani, M., Borry, P. (2019). The Use of Samples Originating From Doping Control Procedures for Research Purposes: A Qualitative Study. JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS, 14 (3), 254-261. doi: 10.1177/1556264619842782

Devriendt, T., Chokoshvili, D., Borry, P. (2019). The athlete biological passport: challenges and possibilities. International Journal of Sport Policy and Politics.

Nicol, D., Eckstein, L., Bentzen, H.B., Borry, P., Burgess, M., Burke, W., Chalmers, D., Cho, M., Dove, E., Fullerton, S., Ida, R., Kato, K., Kaye, J., Koenig, B., Manson, S., McGrail, K., Meslin, E., O'Doherty, K., Prainsack, B., Shabani, M., Tabor, H., Thorogood, A., de Vries, J. (2019). Consent insufficient for data release. SCIENCE, 364 (6439), 445-446. doi: 10.1126/science.aax0892

Chokoshvili, D., Borry, P., Vears, D.F. (2019). A Systematic Analysis of Online Marketing Materials Used by Providers of Expanded Carrier Screening. Obstetrical and Gynecological Survey, 74 (2), 59-61. doi: 10.1097/OGX.0000000000000649

Chokoshvili, D., Vears, D.F., Borry, P. (2018). Reproductive autonomy in expanded carrier screening: more than meets the eye? EXPERT REVIEW OF MOLECULAR DIAGNOSTICS, 18 (12), 993-994. doi: 10.1080/14737159.2018.1544496 Open Access

Vears, D.F., Niemiec, E., Howard, H.C., Borry, P. (2018). Analysis of VUS reporting, variant reinterpretation and recontact policies in clinical genomic sequencing consent forms. EUROPEAN JOURNAL OF HUMAN GENETICS, 26 (12), 1743-1751. doi: 10.1038/s41431-018-0239-7 Open Access

Willem, L., Knops, N., Mekahli, D., Cochat, P., Edefonti, A., Verrina, E., Groothoff, J., Lagae, L., Pirenne, J., Dobbels, F., Borry, P., Van Geet, C., Levtchenko, E. (2018). Renal Replacement Therapy in children with severe developmental disability: guiding questions for decision-making. EUROPEAN JOURNAL OF PEDIATRICS, 177 (12), 1735-1743. doi: 10.1007/s00431-018-3238-3 Open Access

Shabani, M., Dyke, S., Marelli, L., Borry, P. (2018). Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies. GENETICS IN MEDICINE, 1-7. doi: 10.1038/s41436-018-0316-x Open Access

Vears, D.F., Niemiec, E., Howard, H.C., Borry, P. (2018). How do consent forms for diagnostic high-throughput sequencing address unsolicited and secondary findings? A content analysis. CLINICAL GENETICS, 94 (3-4), 321-329. doi: 10.1111/cge.13391 Open Access

Shabani, M., Borry, P., Smeers, I., Bekaert, B. (2018). Forensic Epigenetic Age Estimation and Beyond: Ethical and Legal Considerations. Trends in Genetics, 34 (7), Art.No. https://doi.org/10.1016/j.tig.2018.03.006, 489-491. doi: 10.1016/j.tig.2018.03.006 Open Access

Borry, P., Bentzen, H.B., Budin-Ljøsne, I., Cornel, M.C., Howard, H.C., Feeney, O., Jackson, L., Mascalzoni, D., Mendes, Á., Peterlin, B., Riso, B., Shabani, M., Skirton, H., Sterckx, S., Vears, D., Wjst, M., Felzmann, H. (2018). The challenges of the expanded availability of genomic information: an agenda-setting paper. Journal of Community Genetics, 9 (2), Art.No. 10.1007/s12687-017-0331-7, 103-116. Open Access

Kalokairinou, L., Howard, H.C., Slokenberga, S., Fisher, E., Flatscher-Thöni, M., Hartlev, M., van Hellemondt, R., Juškevičius, J., Kapelenska-Pregowska, J., Kováč, P., Lovrečić, L., Nys, H., de Paor, A., Phillips, A., Prudil, L., Rial-Sebbag, E., Romeo Casabona, C.M., Sándor, J., Schuster, A., Soini, S., Søvig, K.H., Stoffel, D., Titma, T., Trokanas, T., Borry, P. (2018). Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape. Journal of Community Genetics, 9 (2), Art.No. 10.1007/s12687-017-0344-2, 117-132. doi: 10.1007/s12687-017-0344-2 Open Access

Borry, P., Caulfield, T., Estivill, X., Loland, S., McNamee, M., Knoppers, B.M. (2018). Geolocalisation of athletes for out-of-competition drug testing: ethical considerations. Position statement by the WADA Ethics Panel. British Journal of Sports Medicine, 52 (7), Art.No. bjsports-2017-098299, 456-459. Open Access

Kleiderman, E., Pack, A., Borry, P., Zawati, M. (2018). The author who wasn't there? Fairness and attribution in publications following access to population biobanks. PLoS One, 13 (3), Art.No. 10.1371/journal.pone.0194997. Open Access

Shabani, M., Borry, P. (2018). Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation. European Journal of Human Genetics, 26 (2), 149-156. doi: 10.1038/s41431-017-0045-7

Chokoshvili, D., Vears, D., Borry, P. (2018). Expanded carrier screening for monogenic disorders: Where are we now? Prenatal Diagnosis, 38 (1), Art.No. 10.1002/pd.5109, 59-66.

Harper, J.C., Aittomäki, K., Borry, P., Cornel, M.C., de Wert, G., Dondorp, W., Geraerdts, J., Gianaroli, L., Ketterson, K., Liebaers, I., Lundin, K., Mertes, H., Morris, M., Pennings, G., Sermon, K., Spits, C., Soini, S., van Montfoort, A.P A., Veiga, A., Vermeesch, J., Viville, S., Macek, M. (2018). Recent developments in genetics and medically assisted reproduction: from research to clinical applications. European Journal of Human Genetics, 26 (1), Art.No. 10.1038/s41431-017-0016-z, 12-33.

Borry, P., Favaretto, M., Batthyany, A., Boey, E., Van Tongerloo, S., Dooms, M., Huys, I. (2018). Noninvasive prenatal testing: a survey of young (future) parents in Flanders. Personalized Medicine, 15 (1), 35-43.

Howard, H.C., van El, C.G., Forzano, F., Radojkovic, D., Rial-Sebbag, E., de Wert, G., Borry, P., Cornel, M.C. (2018). One small edit for humans, one giant edit for humankind? Points and questions to consider for a responsible way forward for gene editing in humans. European Journal of Human Genetics, 26 (1), Art.No. 10.1038/s41431-017-0024-z, 1-11.

Vears, D., Sénécal, K., Clarke, A.J., Jackson, L., Laberge, A.M., Lovrecic, L., Piton, A., Van Gassen, K.L I., Yntema, H.G., Knoppers, B.M., Borry, P. (2018). Points to consider for laboratories reporting results from diagnostic genomic sequencing. European Journal of Human Genetics, 26 (1), Art.No. 10.1038/s41431-017-0043-9, 36-43.

Shabani, M., Vears, D., Borry, P. (2018). Raw Genomic Data: Storage, Access, and Sharing. Trends in Genetics, 34 (1), 8-10. doi: 10.1016/j.tig.2017.10.004 Open Access

Chokoshvili, D., Borry, P., Vears, D. (2018). A systematic analysis of online marketing materials used by providers of expanded carrier screening. Genetics in Medicine, 20 (9), 976-984. doi: 10.1038/gim.2017.222 Open Access

Magavern, E.F., Finocchiaro, G., Sharma, S., Papadakis, M., Borry, P. (2018). Time out: ethical reflections on medical disqualification of athletes in the context of mandated pre-participation cardiac screening. British Journal of Sports Medicine, 52 (18), 1207-1210. doi: 10.1136/bjsports-2017-097524

Phillips, A., Borry, P., Shabani, M. (2017). Research Ethics Review for the use of anonymized samples and data: A systematic review of normative documents. Accountability in Research, 24 (8), 483-496. doi: 10.1080/08989621.2017.1396896

Badalato, L., Kalokairinou, L., Borry, P. (2017). Third party interpretation of raw genetic data: an ethical exploration. European Journal of Human Genetics, 25 (11), Art.No. 10.1038/ejhg.2017.126, 1189-1194.

Nobile, H., Borry, P., Pischon, T., Steinbrecher, A., Boeing, H., Vigl, M., Bergmann, M.M. (2017). Participants' decision to enroll in cohort studies with biobanks: quantitative insights from two German studies. PERSONALIZED MEDICINE, 14 (6), 477-485. doi: 10.2217/pme-2017-0049

Chokoshvili, D., Vears, D., Borry, P. (2017). Growing complexity of (expanded) carrier screening: Direct-to-consumer, physician-mediated, and clinic-based offers. Best Practice & Research in Clinical Obstetrics & Gynaecology, 44, Art.No. S1521-6934(17)30031-7, 57-67. Open Access

Kalokairinou, L., Borry, P., Howard, H.C. (2017). Regulating the advertising of genetic tests in Europe: a balancing act. Journal of Medical Genetics, 54 (10), Art.No. 104531, 651-656.

Vears, D., Sénécal, K., Borry, P. (2017). Reporting practices for variants of uncertain significance from next generation sequencing technologies. European Journal of Medical Genetics, 60 (10), Art.No. S1769-7212(17)30265-3, 553-558. Open Access

Feeney, O., Borry, P., Felzmann, H., Galvagni, L., Haukkala, A., Loi, M., Nordal, S., Rakic, V., Riso, B., Sterckx, S., Vears, D. (2017). Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality. Journal of Community Genetics, Art.No. 10.1007/s12687-017-0342-4. Open Access

Sénécal, K., Thys, K., Vears, D., Van Assche, K., Knoppers, B.M., Borry, P. (2017). Reply to C Harling. European Journal of Human Genetics, 25 (9), Art.No. 10.1038/ejhg.2017.89.

Shabani, M., Dove, E., Murtagh, M., Knoppers, B., Borry, P. (2017). Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees? Biopreservation and Biobanking, 15 (5), Art.No. 10.1089/bio.2017.0045.

Devriendt, T., Chokoshvili, D., Favaretto, M., Borry, P. (2017). Do athletes have a right to access their Athlete’s Biological Passport?

Vears, D., Sénécal, K., Borry, P. (2017). Reporting practices for unsolicited and secondary findings from next-generation sequencing technologies: Perspectives of laboratory personnel. Human Mutation, 38 (8), Art.No. 10.1002/humu.23259, 905-911.

Janssens, S., Chokoshvili, D., Vears, D., De Paepe, A., Borry, P. (2017). Pre- and post-testing counseling considerations for the provision of expanded carrier screening: exploration of European geneticists' views. BMC Medical Ethics, 18 (1), Art.No. 10.1186/s12910-017-0206-9. Open Access

Niemiec, E., Vears, D., Borry, P., Howard, H.C. (2017). Readability of informed consent forms for whole-exome and whole-genome sequencing. Journal of Community Genetics, Art.No. 10.1007/s12687-017-0324-6. Open Access

Hagan-Brown, A., Favaretto, M., Borry, P. (2017). Newspaper coverage of human-pig chimera research: A qualitative study on select media coverage of scientific breakthrough. Xenotransplantation, 24 (4), Art.No. e12317.

Moray, N., Pink, K., Borry, P., Larmuseau, M. (2017). Paternity testing under the cloak of recreational genetics. European Journal of Human Genetics, 25, 768-770.

Magavern, E.F., Badalato, L., Finocchiaro, G., Borry, P. (2017). Ethical considerations for genetic testing in the context of mandated cardiac screening before athletic participation. Genetics in Medicine, 19 (5), Art.No. 10.1038/gim.2016.146, 493-495.

Chokoshvili, D., Belmans, C., Poncelet, R., Sanders, S., Vaes, D., Vears, D., Janssens, S., Huys, I., Borry, P. (2017). Public Views on Genetics and Genetic Testing: A Survey of the General Public in Belgium. Genetic Testing and Molecular Biomarkers, 21 (3), 195-201.

Bertier, G., Sénécal, K., Borry, P., Vears, D. (2017). Unsolved challenges in pediatric whole-exome sequencing: A literature analysis. Critical Reviews in Clinical Laboratory Sciences, 54 (2), Art.No. 10.1080/10408363.2016.1275516, 134-142.

Sénécal, K., Thys, K., Vears, D., Van Assche, K., Knoppers, B.M., Borry, P. (2017). Reply to Kranendonk et al. European Journal of Human Genetics, 25 (2), Art.No. 10.1038/ejhg.2016.160, 166-167.

Janssens, S., Chokoshvili, D., Vears, D., De Paepe, A., Borry, P. (2017). Attitudes of European Geneticists Regarding Expanded Carrier Screening. Journal of Obstetric, Gynecologic and Neonatal Nursing, 46 (1), Art.No. S0884-2175(16)30418-X, 63-71.

De Rechter, S., Kringen, J., Janssens, P., Liebau, M.C., Devriendt, K., Levtchenko, E., Bergmann, C., Jouret, F., Bammens, B., Borry, P., Schaefer, F., Mekahli, D. (2017). Clinicians' attitude towards family planning and timing of diagnosis in autosomal dominant polycystic kidney disease. PLoS One, 12 (9), Art.No. 10.1371/journal.pone.0185779. Open Access

Senecal, K., Thys, K., Vears, D., Vanassche, K., Knoppers, B.M., Borry, P. (2017). The Dutch legal approach regarding health care decisions involving minors in the NGS days Reply. European Journal of Human Genetics, 25 (2), 166-167.

Harper, J.C., Aittomäki, K., Borry, P., Cornel, M.C., de Wert, G., Dondorp, W., Geraedts, J., Gianaroli, L., Ketterson, K., Liebaers, I., Lundin, K., Mertes, H., Morris, M., Pennings, G., Sermon, K., Spits, C., Soini, S., van Montfoort, A.P A., Veiga, A., Vermeesch, J.R., Viville, S., Macek, M., European Society of Human Reproduction and Embryol, (2017). Recent developments in genetics and medically-assisted reproduction: from research to clinical applications†‡. Hum Reprod Open, 2017 (3). doi: 10.1093/hropen/hox015

Niemiec, E., Borry, P., Pinxten, W., Howard, H.C. (2016). Content Analysis of Informed Consent for Whole Genome Sequencing Offered by Direct-to-Consumer Genetic Testing Companies. Human Mutation, 37 (12), Art.No. 10.1002/humu.23122, 1248-1256. Open Access

Thys, K., Van Assche, K., Nys, H., Sterckx, S., Borry, P. (2016). Living Organ Donation by Minors: An Analysis of the Regulations in EU Member States. American Journal of Transplantation, 16 (12), Art.No. 10.1111/ajt.13868, 3554-3561. Open Access

Sénécal, K., Thys, K., Vears, D., Van Assche, K., Knoppers, B.M., Borry, P. (2016). Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing. European Journal of Human Genetics, 24 (11), Art.No. 10.1038/ejhg.2016.61. Open Access

Knoppers, B., Senecal, K., Boisjoli, J., Borry, P., Cornel, M., Fernandez, C., Grewal, J., Holm, I., Nelson, E., Pinxten, W., Shabani, M., Tasse, A.M., Zawati, M., Wright Clayton, E. (2016). Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority. IRB: Ethics & Human Research, 38 (6), 1-9.

Jeremic, V., Sénécal, K., Borry, P., Chokoshvili, D., Vears, D. (2016). Participation of Children in Medical Decision-Making: Challenges and Potential Solutions. Journal of Bioethical Inquiry, 13 (4), 525-534. doi: 10.1007/s11673-016-9747-8

Larmuseau, M.H D., Bekaert, B., Baumers, M., Wenseleers, T., Deforce, D., Borry, P., Decorte, R., Borry, P. (joint last author), Decorte, R. (joint last author) (2016). Biohistorical materials and contemporary privacy concerns-the forensic case of King Albert I. FORENSIC SCIENCE INTERNATIONAL-GENETICS, 24, 202-210. doi: 10.1016/j.fsigen.2016.07.008 Open Access

Borry, P. (2016). Minderjarigen en medische besluitvorming. Tijdschrift voor Jeugd en Kinderrechten, 3 (17), 221-230.

Shabani, M., Thorogood, A., Borry, P. (2016). Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts. European Journal of Human Genetics, 24 (12), Art.No. 10.1038/ejhg.2016.111, 1671-1675. doi: 10.1038/ejhg.2016.111 Open Access

Nobile, H., Bergmann, M.M., Moldenhauer, J., Borry, P. (2016). Participants' Accounts on Their Decision to Join a Cohort Study With an Attached Biobank: A Qualitative Content Analysis Study Within Two German Studies. Journal of Empirical Research on Human Research Ethics, 11 (3), Art.No. 1556264616657463.

Van Assche, K., Thys, K., Vansweevelt, T., Genicot, G., Borry, P., Sterckx, S. (2016). Living Tissue and Organ Donation by Minors: Suggestions to Improve the Regulatory Framework in Europe. Medical Law International, 16 (1), 58-93. doi: 10.1177/0968533216660877

Henneman, L., Borry, P., Chokoshvili, D., Cornel, M.C., van El, C.G., Forzano, F., Hall, A., Howard, H.C., Janssens, S., Kayserili, H., Lakeman, P., Lucassen, A., Metcalfe, S.A., Vidmar, L., de Wert, G., Dondorp, W.J., Peterlin, B. (2016). Responsible implementation of expanded carrier screening. European Journal of Human Genetics, 24 (6), Art.No. 10.1038/ejhg.2015.271. Open Access

Borry, P., Sénécal, K., Knoppers, B.M. (2016). Do It Yourself Newborn Screening. JAMA Pediatrics, 170 (6), Art.No. 10.1001/jamapediatrics.2016.0166.

Sterckx, S., Rakic, V., Cockbain, J., Borry, P. (2016). "You hoped we would sleep walk into accepting the collection of our data": controversies surrounding the UK care.data scheme and their wider relevance for biomedical research. Medicine, Health Care and Philosophy, 19 (2), 177-190. Open Access

Janssens, S., Chokoshvilli, D., Binst, C., Mahieu, I., Henneman, L., De Paepe, A., Borry, P. (2016). Attitudes of cystic fibrosis patients and parents toward carrier screening and related reproductive issues. European Journal of Human Genetics, 24 (4), Art.No. 10.1038/ejhg.2015.160, 506-12.

Shabani, M., Borry, P. (2016). “You want the right amount of oversight”: interviews with data access committee members and experts on genomic data access. Genetics in Medicine, 18 (9), Art.No. 10.1038/gim.2015.189, 892-897. doi: 10.1038/gim.2015.189 Open Access

Chokoshvili, D., Janssens, S., Vears, D., Borry, P. (2016). Designing expanded carrier screening panels: results of a qualitative study with European geneticists. Personalized Medicine, 13 (6), 553-562.

Thys, K., Dobbels, F., Schotsmans, P., Borry, P. (2016). Is an absolute prohibition of living kidney donation by minors appropriate? A discussion of the arguments in favor and against. 59, 259-270.

Shabani, M., Dyke, S.O M., Joly, Y., Borry, P. (2015). Controlled Access under Review: Improving the Governance of Genomic Data Access. PLoS Biology, 13 (12), Art.No. 10.1371/journal.pbio.1002339. Open Access

Howard, H., Knoppers, B.M., Cornel, M.C., Wright Clayton, E., Sénécal, K., Borry, P., endorsed by the European Society of Human Genetics, (2015). Whole-genome sequencing in newborn screening? A statement on the continued importance of targeted approaches in newborn screening programmes. European Journal of Human Genetics, 23 (12), Art.No. 10.1038/ejhg.2014.289, 1593-1600. Open Access

Kalokairinou, L., Howard, H.C., Borry, P. (2015). Current developments in the regulation of direct-to-consumer genetic testing in Europe. Medical Law International, 15 (2), Art.No. 1, 97-123.

Caulfield, T., Borry, P., Toews, M., Elger, B., Greely, H.T., McGuire, A. (2015). Marginally scientific? Genetic testing of children and adolescents for lifestyle and health promotion. Journal of Law and the Biosciences, 2 (3), 627-644. doi: 10.1093/jlb/lsv038 Open Access

Dondorp, W., de Wert, G., Bombard, Y., Bianchi, D.W., Bergmann, C., Borry, P., Chitty, L.S., Fellmann, F., Forzano, F., Hall, A., Henneman, L., HOWARD, H., Lucassen, A., Ormond, K., Peterlin, B., Radojkovic, D., Rogowski, W., Soller, M., Tibben, A., Tranebjærg, L., van El, C.G., Cornel, M.C. (2015). Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. European Journal of Human Genetics, 23 (11), Art.No. 10.1038/ejhg.2015.57, 1438-50.

Borry, P. (2015). On-line genetische zelftest. Uitdaging voor de wetgever. Nederlands Tijdschrift voor Obstetrie & Gynaecologie, 128, 287-290.

Severin, F., Borry, P., Cornel, M.C., Daniels, N., Fellmann, F., Victoria Hodgson, S., Howard, H.C., John, J., Kääriäinen, H., Kayserili, H., Kent, A., Koerber, F., Kristoffersson, U., Kroese, M., Lewis, C., Marckmann, G., Meyer, P., Pfeufer, A., Schmidtke, J., Skirton, H., Tranebjærg, L., Rogowski, W.H. (2015). Points to consider for prioritizing clinical genetic testing services: a European consensus process oriented at accountability for reasonableness. European Journal of Human Genetics, 23 (6), Art.No. 10.1038/ejhg.2014.190, 729-735. Open Access

Dondorp, W., de Wert, G., Bombard, Y., Bianchi, D.W., Bergmann, C., Borry, P., Chitty, L.S., Fellmann, F., Forzano, F., Hall, A., Henneman, L., Howard, H.C., Lucassen, A., Ormond, K., Peterlin, B., Radojkovic, D., Rogowski, W., Soller, M., Tibben, A., Tranebjærg, L., van El, C.G., Cornel, M.C. (2015). Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Summary and recommendations. EUROPEAN JOURNAL OF HUMAN GENETICS, 2015 (23), 1438-1450. doi: 10.1038/ejhg.2015.56

Shabani, M., Knoppers, B.M., Borry, P. (2015). From the principles of genomic data sharing to the practices of data access committees. EMBO Molecular Medicine, 7 (4), Art.No. 10.15252/emmm.201405002, 1-3. doi: 10.15252/emmm.201405002 Open Access

Thys, K., Schwering, K-L., Siebelink, M., Dobbels, F., Borry, P., Schotsmans, P., Aujoulat, I., the ELPAT Pediatric Organ Donation and Transplanta, (2015). Psychosocial impact of pediatric living-donor kidney and liver transplantation on recipients, donors, and the family: a systematic review. Transplant International, 28 (3), Art.No. 10.1111/tri.12481, 270-280.

Borry, P. (2015). Genetic tests via the internet: limitations and risks. Medicínska etika & Bioetika, 21, 1-32. Open Access

Corpas, M., Valdivia-Granda, W., Torres, N., Greshake, B., Coletta, A., Knaus, A., Harrison, A.P., Cariaso, M., Moran, F., Nielsen, F., Swan, D., Weiss Solís, D.Y., Krawitz, P., Schacherer, F., Schols, P., Yang, H., Borry, P., Glusman, G., Robinson, P.N. (2015). Crowdsourced direct-to-consumer genomic analysis of a family quartet. BMC Genomics, 16 (1), Art.No. 10.1186/s12864-015-1973-7. Open Access

Janssens, S., Kalokairinou, M.L., Chokoshvilli, D., Binst, C., Mahieu, I., Henneman, L., De Paepe, A., Borry, P. (2015). Attitudes of cystic fibrosis patients and their parents towards direct-to-consumer genetic testing for carrier status. Personalized Medicine, 12 (2), 99-107. doi: 10.2217/PME.14.75 Open Access

Senecal, K., Vears, D., Bertier, G., Knoppers, B.M., Borry, P. (2015). Genome-based newborn screening: a conceptual analysis of the best interests of the child standard. Personalized Medicine, 12 (5), 439-441.

Buekers, M., Borry, P., Rowe, P. (2015). Talent in sports. Some reflections about the search for future champions. Movement and Sport Sciences, 88, 3-12. doi: 10.1051/sm/2014002 Open Access

Shabani, M., Bezuidenhout, L., Borry, P. (2014). Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review. Expert Review of Molecular Diagnostics, 14 (8), 1053-1065.

Kalokairinou, L., Howard, H., Borry, P. (2014). Science and Regulation. Changes on the horizon for consumer genomics in the EU. Science, 346 (6207), Art.No. 10.1126/science.1256396, 296-298.

Harper, J., Geraedts, J., Borry, P., Cornel, M.C., Dondorp, W.J., Gianaroli, L., Harton, G., Milachich, T., Kääriäinen, H., Liebaers, I., Morris, M., Sequeiros, J., Sermon, K., Shenfield, F., Skirton, H., Soini, S., Spits, C., Veiga, A., Vermeesch, J., Viville, S., de Wert, G., Macek, M., on behalf of ESHG, E.S H R E A E. (2014). Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy†. Human Reproduction, 29 (8), Art.No. 10.1093/humrep/deu130, 1603-9. doi: 10.1093/humrep/deu130 Open Access

Ogbogu, U., Toews, M., Ollenberger, A., Borry, P., Nobile, H., Bergmann, M., Caulfield, T. (2014). Newspaper coverage of biobanks. PeerJ, 2, Art.No. e500, 1-14. doi: 10.7717/peerj.500 Open Access

Shabani, M., Borry, P. (2014). Challenges of web-based personal genomic data sharing. Open Access

Borry, P., Shabani, M., Howard, H.C. (2014). Is There a Right Time to Know? The Right Not to Know and Genetic Testing in Children. Journal of Law, Medicine & Ethics, 42 (1), 19-27.

Knoppers, B.M., Senecal, K., Borry, P., Avard, D. (2014). Whole-Genome Sequencing in Newborn Screening Programs. SCIENCE TRANSLATIONAL MEDICINE, 6 (229), 1-4. doi: 10.1126/scitranslmed.3008494

Borry, P., Rusu, O., Dondorp, W., De Wert, G., Knoppers, B.M., Howard, H. (2014). Anonymity 2.0: direct-to-consumer genetic testing and donor conception. Fertility and Sterility, 101 (3), Art.No. S0015-0282(13)03295-0, 630-632.

Borry, P. (2014). Gezocht of gevonden? Secundaire bevindingen in de genetische diagnostiek. Karakter: Tijdschrift van Wetenschap, 45, 22-24. Open Access

Caulfield, T., Burningham, S., Joly, Y., Master, Z., Shabani, M., Borry, P., Becker, A., Burgess, M., Calder, K., Critchley, C., Edwards, K., Fullerton, S., Gottweis, H., Hyde-Lay, R., Illes, J., Isasi, R., Kato, K., Kaye, J., Knoppers, B., Lynch, J., McGuire, A., Meslin, E., Nicol, D., O'Doherty, K., Ogbogu, U., Otlowski, M., Pullman, D., Ries, N., Scott, C., Sears, M., Wallace, H., Zawati, M. (2014). A review of the key issues associated with the commercialization of biobanks. Journal of Law and the Biosciences, 1 (1), 94-110. Open Access

Caulfield, T., Borry, P., Gottweis, H. (2014). Industry involvement in publicly funded biobanks. Nature Reviews. Genetics, 15, 220-220. doi: 10.1038/nrg3704

Janssens, S., De Paepe, A., Borry, P. (2014). Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature. Journal of Community Genetics, 5 (1), 13-29.

Cornel, M.C., van El, C.G., Borry, P. (2014). The challenge of implementing genetic tests with clinical utility while avoiding unsound applications. Journal of Community Genetics, 5 (1), 7-12.

Borry, P. (2014). Boekbespreking Genoom bewust. Belasting of belofte? Tijdschrift voor Gezondheidszorg en Ethiek, 24 (1), 28-28.

Sterckx, S., Cockbain, J., Howard, H., Borry, P. (2013). "I prefer a child with …": designer babies, another controversial patent in the arena of direct-to-consumer genomics. GENETICS IN MEDICINE, 15 (12), 923-924. doi: 10.1038/gim.2013.164 Open Access

Harper, J.C., Geraedts, J., Borry, P., Cornel, M.C., Dondorp, W., Gianaroli, L., Harton, G., Milachich, T., Kääriäinen, H., Liebaers, I., Morris, M., Sequeiros, J., Sermon, K., Shenfield, F., Skirton, H., Soini, S., Spits, C., Veiga, A., Vermeesch, J., Viville, S., de Wert, G., Macek, M. (2013). Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policyEuropean Society of Human Genetics and European Society of Human Reproduction and Embryology. European Journal of Human Genetics, 21, Art.No. 10.1038/ejhg.2013.219.

Caulfield, T., Evans, J., McGuire, A., McCabe, C., Bubela, T., Cook-Deegan, R., Fishman, J., Hogarth, S., Miller, F.A., Ravitsky, V., Biesecker, B., Borry, P., Cho, M.K., Carroll, J.C., Etchegary, H., Joly, Y., Kato, K., Lee, S.S-J., Rothenberg, K., Sankar, P., Szego, M.J., Ossorio, P., Pullman, D., Rousseau, F., Ungar, W.J., Wilson, B. (2013). Reflections on the cost of "low-cost" whole genome sequencing: framing the health policy debate. PLoS Biology, 11 (11), Art.No. 10.1371/journal.pbio.1001699. Open Access

Rigter, T., Henneman, L., Kristoffersson, U., Hall, A., Yntema, H.G., Borry, P., Tönnies, H., Waisfisz, Q., Elting, M.W., Dondorp, W.J., Cornel, M.C. (2013). Reflecting on earlier experiences with unsolicited findings: Points to consider for next generation sequencing and informed consent in diagnostics. Human mutation, 34 (10), Art.No. 10.1002/humu.22370, 1322-1328. doi: 10.1002/humu.22370

Thys, K., Van Assche, K., Nobile, H., Siebelink, M., Aujoulat, I., Schotsmans, P., Dobbels, F., Borry, P. (2013). Could minors be living kidney donors? A systematic review of guidelines, position papers and reports. Transplant International, 26 (10), Art.No. 10.1111/tri.12097, 949-60.

van El, C.G., Cornel, M.C., Borry, P., Hastings, R.J., Fellmann, F., Hodgson, S.V., Howard, H.C., Cambon-Thomsen, A., Knoppers, B.M., Meijers-Heijboer, H., Scheffer, H., Tranebjaerg, L., Dondorp, W., de Wert, G.M W R. (2013). Whole-genome sequencing in health care Recommendations of the European Society of Human Genetics. EUROPEAN JOURNAL OF HUMAN GENETICS, 21, S1-S5. doi: 10.1038/ejhg.2013.46

van El, C.G., Cornel, M.C., Borry, P., Hastings, R.J., Fellmann, F., Hodgson, S.V., HOWARD, H., Cambon-Thomsen, A., Knoppers, B.M., Meijers-Heijboer, H., Scheffer, H., Tranebjaerg, L., Dondorp, W., de Wert, G.M W R. (2013). Whole-genome sequencing in health care. European Journal of Human Genetics, 21 (6), Art.No. 10.1038/ejhg.2013.46, 580-4. doi: 10.1038/ejhg.2013.46

Sterckx, S., Cockbain, J., HOWARD, H., Huys, I., Borry, P. (2013). "Trust is not something you can reclaim easily": patenting in the field of direct-to-consumer genetic testing. Genetics in Medicine, 15 (5), Art.No. 10.1038/gim.2012.143, 382-387.

Borry, P., Shabani, M., HOWARD, H. (2013). Nonpropositional Content in Direct-to-Consumer Genetic Testing Advertisements. American Journal of Bioethics, 13 (5), Art.No. 10.1080/15265161.2013.776358, 14-6.

Howard, H., Borry, P. (2013). Survey of European clinical geneticists on awareness, experiences and attitudes towards direct-to-consumer genetic testing. Genome Medicine, (5), Art.No. 45.

Borry, P., Rusu, O., Howard, H.C. (2013). Anonymity of sperm donors under threat. NATURE, 496 (7444), 169-169. doi: 10.1038/496169e

Borry, P., Rusu, O., HOWARD, H. (2013). Genetic testing: anonymity of sperm donors under threat. Nature, 496 (7444), Art.No. 10.1038/496169e.

Caulfield, T., Borry, P. (2013). Direct-to-consumer genetic testing - where should we focus the policy debate? Medical Journal of Australia, 198 (9), 499-500.

Nobile, H., Vermeulen, E., Thys, K., Bergmann, M.M., Borry, P. (2013). Why do participants enroll in population biobank studies? A systematic literature review. Expert Review of Molecular Diagnostics, 13 (1), Art.No. 10.1586/erm.12.116, 35-47.

Hens, K., Van El, C.E., Borry, P., Cambon-Thomsen, A., Cornel, M.C., Forzano, F., Lucassen, A., Patch, C., Tranebjaerg, L., Vermeulen, E., Salvaterra, E., Tibben, A., Dierickx, K. (2013). Developing a policy for paediatric biobanks: principles for good practice. European Journal of Human Genetics, 21 (1), 2-7. doi: 10.1038/ejhg.2012.99 Open Access

Su, Y., Borry, P., Otte, I.C., Howard, H. (2013). “It’s our DNA, we deserve the right to test!” A content analysis of a petition for the right to access direct-to-consumer genetic testing. Personalized Medicine, 10 (7), 729-739.

Macleod, R., Tibben, A., Frontali, M., Evers-Kiebooms, G., Jones, A., Martinez-Descales, A., Roos, R., editorial committee working group 'Genetic testing, , Borry, P. (contr.) (2013). Recommendations for the Predictive Genetic Test in Huntington's Disease. Clinical Genetics, 83 (3), Art.No. 10.1111/j.1399-0004.2012.01900.x, 221-231.

Eikermann, M., Gluud, C., Perleth, M., Wild, C., Sauerland, S., Gutierrez-Ibarluzea, I., Antoine, S-L., Demotes-Mainard, J., Neugebauer, E.A M., On behalf of signatories of our open letter to the, , Borry, P. (contr.) (2013). Commentary: Europe needs a central, transparent, and evidence based regulation process for devices. BMJ - British Medical Journal, 346, 1-2. doi: 10.1136/bmj.f2771

Borry, P. (2013). Direct-to-consumer genetic testing: from ethical concerns to policy answers. Bioethica Forum, 6 (3), 115-118.

HOWARD, H., Swinnen, E., Douw, K., Vondeling, H., Cassiman, J-J., Cambon-Thomsen, A., Borry, P. (2013). The Ethical Introduction of Genome-Based Information and Technologies into Public Health. Public health genomics, 16 (3), 100-9.

Borry, P., Henneman, L. (2012). Debating the clinical utility of direct-to-consumer genetic testing for addiction susceptibility. Addiction, 107 (12), Art.No. 10.1111/j.1360-0443.2012.03939.x, 2076-2077.

Hastings, R., de Wert, G., Fowler, B., Krawczak, M., Vermeulen, E., Bakker, E., Borry, P., Dondorp, W., Nijsingh, N., Barton, D., Schmidtke, J., van El, C.G., Vermeesch, J., Stol, Y., Carmen Howard, H., Cornel, M.C. (2012). The changing landscape of genetic testing and its impact on clinical and laboratory services and research in Europe. European Journal of Human Genetics, 20 (9), Art.No. 10.1038/ejhg.2012.56, 911-916. Open Access

HOWARD, H., Borry, P. (2012). To ban or not to ban? Clinical geneticists' views on the regulation of direct-to-consumer genetic testing. EMBO reports, 13 (9), 791-4. doi: 10.1038/embor.2012.114

Borry, P., van Hellemondt, R.E., Sprumont, D., Jales, C.F D., Rial-Sebbag, E., Spranger, T.M., Curren, L., Kaye, J., Nys, H., Howard, H. (2012). Legislation on direct-to-consumer genetic testing in seven European countries. European Journal of Human Genetics, 20 (7), Art.No. 10.1038/ejhg.2011.278, 715-721.

HOWARD, H., Borry, P. (2012). Is there a doctor in the house? The presence of physicians in the direct-to-consumer genetic testing context. Journal of Community Genetics, 3 (2), 105-112.

Howard, H., Latour, J., Vanderschuren, J., Borry, P. (2012). Définition et enjeux éthiques des tests génétiques offerts en accès libre. Revue Generale de Droit Medical, 42 (1), 15-20.

HOWARD, H., Borry, P. (2012). Europe and direct-to-consumer genetic tests. Nature Reviews. Genetics, 13 (2), Art.No. 10.1038/nrg3073-c1.

Rial-Sebbag, E., Borry, P. (2012). Direct-to-consumer genetic testing: regulating offer or use? Personalized Medicine, 9 (3), 315-317.

Cornel, M., Van El, C., Borry, P. (2011). The challenge of implementing genetic tests with clinical utility while avoiding unsound applications.

HOWARD, H., Avard, D., Borry, P. (2011). Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms? European journal of human genetics : EJHG, 19 (11), 1122-6.

Borry, P., van Hellemondt, R.E., Sprumont, D., Fittipaldi Duarte Jales, C., Rial-Sebbag, E., Spranger, T.M., Curren, L., Kaye, J., Nys, H., HOWARD, H. (2011). Legislation on direct-to-consumer genetic testing in seven European countries.

HOWARD, H., Borry, P. (2011). Direct-to-consumer pharmacogenomic testing. Pharmacogenomics, 12 (10), 1367-1370.

Borry, P. (2011). Stanovisko ESHG k DTC (direct-to-consumer) genetickému testování pro zdravotní účely. Ceska Gynekologie, 76 (1), 77-80.

Zawati, M.H., Borry, P., HOWARD, H. (2011). Closure of population biobanks and direct-to-consumer genetic testing companies. Human Genetics, 130 (3), 425-432.

Borry, P., HOWARD, H. (2011). Survey of European clinical geneticists on awareness, experiences and attitudes towards direct-to-consumer genetic testing.

Su, Y., Howard, H., Borry, P. (2011). Users’ motivations to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories. Journal of Community Genetics, 2 (3), 135-146. Open Access

Borry, P., Henneman, L., Lakeman, P., ten Kate, L.P., Cornel, M.C., HOWARD, H. (2011). Preconceptional genetic carrier testing and the commercial offer directly-to-consumers. Human Reproduction, 26 (5), 972-977. doi: 10.1093/humrep/der042

Becker, F., van El, C.G., Ibarreta, D., Zika, E., Hogarth, S., Borry, P., Cambon-Thomsen, A., Cassiman, J-J., Evers-Kiebooms, G., Hodgson, S., Janssens, A.C J W., Kaariainen, H., Krawczak, M., Kristoffersson, U., Lubinski, J., Patch, C., Penchaszadeh, V.B., Read, A., Rogowski, W., Sequeiros, J., Tranebjaerg, L., van Langen, I.M., Wallace, H., Zimmern, R., Schmidtke, J., Cornel, M.C. (2011). Genetic testing and common disorders in a public health framework: how to assess relevance and possibilities. Background Document to the ESHG recommendations on genetic testing and common disorders. European Journal of Human Genetics, 18.

Borry, P., Cornel, M., HOWARD, H. (2011). Where are you going, where have you been. A recent history of the direct-to-consumer genetic testing market. Journal of Community Genetics, 1 (3), 101-106. Open Access

Arellano, L., Willett, J., Borry, P. (2011). International survey on attitudes towards ethics in health technology assessment: an exploratory study. International Journal of Technology Assessment in Health Care, 27 (1), 50-54.

Borry, P. (2010). Statement of the ESHG on direct-to-consumer genetic testing for health-related purposes European Society of Human Genetics. European Journal of Human Genetics, 18 (12), 1271-1273. doi: 10.1038/ejhg.2010.129 Open Access

Howard, H.C., Knoppers, B.M., Borry, P. (2010). Blurring lines The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects. EMBO Reports, 11 (8), 579-582. Open Access

Borry, P., Willems, W. (2010). Genetica via het web. Is er een toekomst voor genetische zelftests? Tijdschrift voor Gezondheidszorg en Ethiek, 20 (2), 51-56.

Forzano, F., Borry, P., Cambon-Thomsen, A., Hodgson, S.V., Tibben, A., de Vries, P., van El, C., Cornel, M. (2010). Italian appeal court: a genetic predisposition to commit murder? European Journal of Human Genetics, 18 (5), 519-521. Open Access

Borry, P., Howard, H., Sénécal, K., Avard, D. (2010). Health-related direct-to-consumer genetic testing. A review of companies' policies with regard to genetic testing in minors. Familial Cancer, 9 (1), 51-59.

Leget, C., Borry, P. (2010). Empirical Ethics: the case of dignity in end-of-life decisions. Ethical Perspectives, 17 (2), 231-250. Open Access

Bombard, Y., Miller, F.A., Hayeems, R.Z., Avard, D., Knoppers, B.M., Cornel, M.C., Borry, P. (2009). The expansion of newborn screening: is reproductive benefit an appropriate pursuit? Nature reviews genetics, 10 (10), 666-667. Open Access

Boyce, A., Borry, P. (2009). Parental authority, future autonomy and assessing risks of predictive genetic testing in minors. Journal of Bioethical Inquiry, 6 (3), 379-385. Open Access

Borry, P., Evers-Kiebooms, G., Cornel, M., Clarke, A., Dierickx, K. (2009). Genetic testing in asymptomatic minors.Background considerations towards ESHG Recommendations. European Journal of Human Genetics, 17 (6), 711-719. Open Access

Borry, P., Evers-Kiebooms, G., Cornel, M.C., Clarke, A., Dierickx, K. (2009). Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics Recommendations of the European Society of Human Genetics. European journal of human genetics, 17 (6), 720-721. Open Access

Bezuidenhout, L., Borry, P. (2009). Examining the role of informal interpretation in medical interviews. Journal of Medical Ethics, 35 (3), 159-162. Open Access

Howard, H., Borry, P. (2009). Personal Genome Testing: Do you know what you are buying? American Journal of Bioethics, 9 (6), 11-13. doi: 10.1080/15265160902894005 Open Access

Borry, P. (2009). Coming of age of personalized medicine: challenges ahead. Genome Medicine, 1 (109), 109-109. doi: 10.1186/gm109 Open Access

Leget, C., Borry, P., De Vries, R. (2009). 'Nobody tosses a dwarf!' The relation between the empirical and the normative reexamined. Bioethics, 23 (4), 226-235. Open Access

Borry, P., HOWARD, H., Senecal, K., Avard, D. (2009). Ethics watch DIRECT-TO-CONSUMER GENOME SCANNING SERVICES. ALSO FOR CHILDREN? Nature reviews genetics, 10 (1), 8-8. Open Access

Lerkiatbundit, S., Borry, P. (2009). Moral Distress Part I: Critical Literature Review on Definition, Magnitude, Antecedents and Consequences. Thai Journal of Pharmacy Practice, 1 (1).

Lerkiatbundit, S., Borry, P. (2009). Moral Distress Part II: Critical Review of Measurement. Thai Journal of Pharmacy Practice, 1 (1).

Borry, P., Stultiens, L., Goffin, T., Nys, H., Dierickx, K. (2008). Minors and informed consent in carrier testing. A survey of European clinical genetics. Journal of medical ethics, 34 (5), 370-374. Open Access

Phelan, R., Borry, P., Howard, H.C. (2008). Letter to the Editor. Per Med, 5 (5), 425-426. doi: 10.2217/17410541.5.5.425

Borry, P. (2008). Europe to ban direct-to-consumer genetic tests? Nature biotechnology, 26 (7), 736-737. Open Access

Howard, H.C., Borry, P. (2008). Direct-to-consumer genetic testing: more questions than benefits? Personalized medicine, 5 (4), 317-320. Open Access

Borry, P., HOWARD, H. (2008). DTC genetic services: a look across the pond. American Journal of Bioethics, 8 (6), 14-16. Open Access

Borry, P., Goffin, T., Nys, H., Dierickx, K. (2008). Predictive genetic testing in minors for adult-onset genetic diseases. Mount sinai journal of medicine, 75 (3), 287-296. Open Access

Goffin, T., Borry, P., Dierickx, K., Nys, H. (2008). Why eight EU Member States signed, but not yet ratified the Convention for Human Rights and Biomedicine. Health policy, 86 (2), 222-233. doi: 10.1016/j.healthpol.2007.10.011 Open Access

Porteri, C., Borry, P. (2008). A proposal for a model of informed consent for the collection, storage and use of biological materials for research purposes. Patient education and counseling, 71 (1), 136-142. Open Access

Borry, P., Dierickx, K. (2008). What are the limits of the duty of care? The case of clinical genetics. Personalized medicine, 5 (2), 101-104. Open Access

Borry, P., Clarke, A., Dierickx, K. (2008). Carrier screening: look before you leap: Carrier screening for type 1 Gaucher disease: difficult questions. European Journal of Human Genetics, 16 (2), 139-40. Open Access

Borry, P., Goffin, T., Nys, H., Dierickx, K. (2008). Attitudes regarding predictive genetic testing in minors: a survey of European clinical geneticists. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 148 (1), 78-83. Open Access

Borry, P., van Reusel, W., Roels, L., Schotsmans, P. (2008). Donation after Uncontrolled Cardiac Death (uDCD): A Review of the Debate from a European Perspective. Journal of law medicine & ethics, 36 (4), 752-759. Open Access

Nadarajah, S. (2008). Letter to the Editor. INTERNATIONAL JOURNAL OF MATHEMATICAL EDUCATION IN SCIENCE AND TECHNOLOGY, 39 (3), 425-426. doi: 10.1080/00207390701867489

Borry, P., de Vries, R. (2008). Empirisch onderzoek in de gezondheidsethiek. Tijdschrift voor gezondheidszorg en ethiek, 18 (3), 90-94. Open Access

Borry, P., Goffin, T., Nys, H., Dierickx, K. (2007). Attitudes regarding carrier testing in incompetent children: a survey of European clinical geneticists. European journal of human genetics, 15 (12), 1211-1217. Open Access

Borry, P., Stultiens, L., Nys, H., Dierickx, K. (2007). Attitudes towards predictive genetic testing in minors for familial breast cancer: A systematic review. Critical reviews in oncology hematology, 64 (3), 173-181. Open Access

Borry, P., Nys, H., Dierickx, K. (2007). Ethics watch - Carrier testing in minors: Conflicting views. Nature reviews genetics, 8 (11), 828-828. Open Access

Nys, H., Stultiens, L., Borry, P., Goffin, T., Dierickx, K. (2007). Patient rights in EU member states after the ratification of the convention on human rights and biomedicine. Health policy, 83 (2), 223-235. Open Access

Borry, P., Goffin, T., Nys, H., Dierickx, K. (2007). Attitudes regarding genetic testing in minors. A survey of European clinical geneticists.

Stultiëns, L., Goffin, T., Borry, P., Dierickx, K., Nys, H. (2007). Minors and informed consent: a comparative approach. European Journal of Health Law, 14 (1), 21-46. Open Access

Borry, P., Stultiens, L., Nys, H., Dierickx, K. (2007). Informed consent in children and young people: an introduction. Revista Latinoamericana de Bioética, 10 (1), 66-83.

Borry, P., Schotsmans, P., Dierickx, K. (2006). Author, contributor or just a signer? A quantitative analysis of authorship trends in the field of bioethics. Bioethics, 20 (4), 213-220.