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Heritable Genome Editing: Who Speaks for "Future" Children?

Knoppers BM, Kleiderman E.

CRISPR J. 2019 Oct;2(5):285-292. doi: 10.1089/crispr.2019.0019.


From Poetry to Policy: An Interview with Bartha Maria Knoppers.

Davies K, Knoppers BM.

CRISPR J. 2019 Oct;2(5):249-252. doi: 10.1089/crispr.2019.29071.bkn. No abstract available.


When information is the treatment? Precision medicine in healthcare.

Beauvais M, Knoppers BM.

Healthc Manage Forum. 2019 Sep 10:840470419859017. doi: 10.1177/0840470419859017. [Epub ahead of print]


Model consent clauses for rare disease research.

Nguyen MT, Goldblatt J, Isasi R, Jagut M, Jonker AH, Kaufmann P, Ouillade L, Molnar-Gabor F, Shabani M, Sid E, Tassé AM, Wong-Rieger D, Knoppers BM; IRDiRC-GA4GH Model Consent Clauses Task Force.

BMC Med Ethics. 2019 Aug 1;20(1):55. doi: 10.1186/s12910-019-0390-x.


Canada's Assisted Human Reproduction Act: Pragmatic Reforms in Support of Research.

Bubela T, Kleiderman E, Master Z, Ogbogu U, Ravitsky V, Zarzeczny A, Knoppers BM.

Front Med (Lausanne). 2019 Jul 10;6:157. doi: 10.3389/fmed.2019.00157. eCollection 2019.


The 'serious' factor in germline modification.

Kleiderman E, Ravitsky V, Knoppers BM.

J Med Ethics. 2019 Aug;45(8):508-513. doi: 10.1136/medethics-2019-105436. Epub 2019 Jul 20.


Regulatory Landscape of International Direct-to-Participant (DTP) Genomic Research: Time to Untie the Gordian Knot?

Rothstein MA, Zawati MH, Knoppers BM.

J Law Med Ethics. 2019 Jun;47(2):336-341. doi: 10.1177/1073110519857291. No abstract available.


The Human Right to Science and the Regulation of Human Germline Engineering.

Boggio A, Knoppers BM, Almqvist J, Romano CPR.

CRISPR J. 2019 Jun;2:134-142. doi: 10.1089/crispr.2018.0053.


Reciprocity and the Quest for Meaningful Disclosure.

Zawati MH, Knoppers BM.

Am J Bioeth. 2019 May;19(5):36-38. doi: 10.1080/15265161.2019.1587547. No abstract available.


A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research.

Dalpé G, Thorogood A, Knoppers BM.

Front Genet. 2019 Apr 5;10:289. doi: 10.3389/fgene.2019.00289. eCollection 2019.


Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.

McGuire AL, Majumder MA, Villanueva AG, Bardill J, Bollinger JM, Boerwinkle E, Bubela T, Deverka PA, Evans BJ, Garrison NA, Glazer D, Goldstein MM, Greely HT, Kahn SD, Knoppers BM, Koenig BA, Lambright JM, Mattison JE, O'Donnell C, Rai AK, Rodriguez LL, Simoncelli T, Terry SF, Thorogood AM, Watson MS, Wilbanks JT, Cook-Deegan R.

J Law Med Ethics. 2019 Mar;47(1):12-20. doi: 10.1177/1073110519840480.


Whose Commons? Data Protection as a Legal Limit of Open Science.

Phillips M, Knoppers BM.

J Law Med Ethics. 2019 Mar;47(1):106-111. doi: 10.1177/1073110519840489.


Letter: Relearning the 3 R's? Reinterpretation, recontact, and return of genetic variants.

Knoppers BM, Thorogood A, Zawati MH.

Genet Med. 2019 Oct;21(10):2401-2402. doi: 10.1038/s41436-019-0494-1. Epub 2019 Apr 11. No abstract available.


Health professionals' perspectives on breast cancer risk stratification: understanding evaluation of risk versus screening for disease.

Puzhko S, Gagnon J, Simard J, Knoppers BM, Siedlikowski S, Bartlett G.

Public Health Rev. 2019 Feb 28;40:2. doi: 10.1186/s40985-019-0111-5. eCollection 2019. Review.


A response to "Personalised medicine and population health: breast and ovarian cancer".

Antoniou A, Anton-Culver H, Borowsky A, Broeders M, Brooks J, Chiarelli A, Chiquette J, Cuzick J, Delaloge S, Devilee P, Dorval M, Easton D, Eisen A, Eklund M, Eloy L, Esserman L, Garcia-Closas M, Goldgar D, Hall P, Knoppers BM, Kraft P, La Croix A, Madalensky L, Mavaddat N, Mittman N, Nabi H, Olopade O, Pashayan N, Schmidt M, Shieh Y, Simard J, Stover-Fiscallini A, Tice JA, Van't Veer L, Wenger N, Wolfson M, Yau C, Ziv E.

Hum Genet. 2019 Mar;138(3):287-289. doi: 10.1007/s00439-019-01984-z. Epub 2019 Feb 27. No abstract available.


"CRISPR babies": What does this mean for science and Canada?

Knoppers BM, Kleiderman E.

CMAJ. 2019 Jan 28;191(4):E91-E92. doi: 10.1503/cmaj.181657. No abstract available.


Return of individual genomic research results: are laws and policies keeping step?

Thorogood A, Dalpé G, Knoppers BM.

Eur J Hum Genet. 2019 Apr;27(4):535-546. doi: 10.1038/s41431-018-0311-3. Epub 2019 Jan 8.


Overcoming barriers to facilitate the regulation of multi-centre regenerative medicine clinical trials.

Kleiderman E, Boily A, Hasilo C, Knoppers BM.

Stem Cell Res Ther. 2018 Nov 8;9(1):307. doi: 10.1186/s13287-018-1055-2. Review.


Pre-implantation Genetic Diagnosis: The Road Forward in Canada.

Ravitsky V, Nguyen MT, Birko S, Kleiderman E, Laberge AM, Knoppers BM.

J Obstet Gynaecol Can. 2019 Jan;41(1):68-71. doi: 10.1016/j.jogc.2018.08.001. Epub 2018 Oct 22.


Consent recommendations for research and international data sharing involving persons with dementia.

Thorogood A, Mäki-Petäjä-Leinonen A, Brodaty H, Dalpé G, Gastmans C, Gauthier S, Gove D, Harding R, Knoppers BM, Rossor M, Bobrow M; Global Alliance for Genomics and Health, Ageing and Dementia Task Team.

Alzheimers Dement. 2018 Oct;14(10):1334-1343. doi: 10.1016/j.jalz.2018.05.011. Epub 2018 Jul 2.


Ethical, Legal, and Regulatory Issues for the Implementation of Omics-Based Risk Prediction of Women's Cancer: Points to Consider.

Lévesque E, Kirby E, Bolt I, Knoppers BM, de Beaufort I, Pashayan N, Widschwendter M.

Public Health Genomics. 2018;21(1-2):37-44. doi: 10.1159/000492663. Epub 2018 Sep 17.


Autologous bilayered self-assembled skin substitutes (SASSs) as permanent grafts: a case series of 14 severely burned patients indicating clinical effectiveness.

Germain L, Larouche D, Nedelec B, Perreault I, Duranceau L, Bortoluzzi P, Beaudoin Cloutier C, Genest H, Caouette-Laberge L, Dumas A, Bussière A, Boghossian E, Kanevsky J, Leclerc Y, Lee J, Nguyen MT, Bernier V, Knoppers BM, Moulin VJ, Auger FA.

Eur Cell Mater. 2018 Sep 13;36:128-141. doi: 10.22203/eCM.v036a10.


Correction to: Accelerating evidence gathering and approval of precision medicine therapies: the FDA takes aim at rare mutations.

Issa AM, Thorogood A, Joly Y, Knoppers BM.

Genet Med. 2019 Aug;21(8):1894-1900. doi: 10.1038/s41436-018-0264-5.


A roadmap for restoring trust in Big Data.

Lawler M, Morris AD, Sullivan R, Birney E, Middleton A, Makaroff L, Knoppers BM, Horgan D, Eggermont A.

Lancet Oncol. 2018 Aug;19(8):1014-1015. doi: 10.1016/S1470-2045(18)30425-X. No abstract available.


Introduction: the why and whither of genomic data sharing.

Knoppers BM, Joly Y.

Hum Genet. 2018 Aug;137(8):569-574. doi: 10.1007/s00439-018-1923-y. No abstract available.


Registered access: authorizing data access.

Dyke SOM, Linden M, Lappalainen I, De Argila JR, Carey K, Lloyd D, Spalding JD, Cabili MN, Kerry G, Foreman J, Cutts T, Shabani M, Rodriguez LL, Haeussler M, Walsh B, Jiang X, Wang S, Perrett D, Boughtwood T, Matern A, Brookes AJ, Cupak M, Fiume M, Pandya R, Tulchinsky I, Scollen S, Törnroos J, Das S, Evans AC, Malin BA, Beck S, Brenner SE, Nyrönen T, Blomberg N, Firth HV, Hurles M, Philippakis AA, Rätsch G, Brudno M, Boycott KM, Rehm HL, Baudis M, Sherry ST, Kato K, Knoppers BM, Baker D, Flicek P.

Eur J Hum Genet. 2018 Dec;26(12):1721-1731. doi: 10.1038/s41431-018-0219-y. Epub 2018 Aug 2.


Responsible sharing of biomedical data and biospecimens via the "Automatable Discovery and Access Matrix" (ADA-M).

Woolley JP, Kirby E, Leslie J, Jeanson F, Cabili MN, Rushton G, Hazard JG, Ladas V, Veal CD, Gibson SJ, Tassé AM, Dyke SOM, Gaff C, Thorogood A, Knoppers BM, Wilbanks J, Brookes AJ.

NPJ Genom Med. 2018 Jul 23;3:17. doi: 10.1038/s41525-018-0057-4. eCollection 2018. Review.


Privacy-Preserving Linkage of Genomic and Clinical Data Sets.

Baker DB, Knoppers BM, Phillips M, van Enckevort D, Kaufmann P, Lochmuller H, Taruscio D.

IEEE/ACM Trans Comput Biol Bioinform. 2019 Jul-Aug;16(4):1342-1348. doi: 10.1109/TCBB.2018.2855125. Epub 2018 Jul 30.


Bridging stem cell research and medicine: a learning health system.

Touré SB, Kleiderman E, Knoppers BM.

Regen Med. 2018 Sep;13(6):741-752. doi: 10.2217/rme-2017-0129. Epub 2018 Jul 25.


Accelerating evidence gathering and approval of precision medicine therapies: the FDA takes aim at rare mutations.

Issa AM, Thorogood A, Joly Y, Knoppers BM.

Genet Med. 2019 Mar;21(3):542-544. doi: 10.1038/s41436-018-0099-0. Epub 2018 Jul 10. No abstract available. Erratum in: Genet Med. 2018 Sep 4;:.


Genome-wide sequencing in acutely ill infants: genomic medicine's critical application?

Friedman JM, Bombard Y, Cornel MC, Fernandez CV, Junker AK, Plon SE, Stark Z, Knoppers BM; Paediatric Task Team of the Global Alliance for Genomics and Health Regulatory and Ethics Work Stream.

Genet Med. 2019 Feb;21(2):498-504. doi: 10.1038/s41436-018-0055-z. Epub 2018 Jun 12.


The Canadian Partnership for Tomorrow Project: a pan-Canadian platform for research on chronic disease prevention.

Dummer TJB, Awadalla P, Boileau C, Craig C, Fortier I, Goel V, Hicks JMT, Jacquemont S, Knoppers BM, Le N, McDonald T, McLaughlin J, Mes-Masson AM, Nuyt AM, Palmer LJ, Parker L, Purdue M, Robson PJ, Spinelli JJ, Thompson D, Vena J, Zawati M; with the CPTP Regional Cohort Consortium.

CMAJ. 2018 Jun 11;190(23):E710-E717. doi: 10.1503/cmaj.170292.


Genetically Enhanced Minors: Whose Responsibility?

Kleiderman E, Boily A, Knoppers BM.

Am J Bioeth. 2018 Jun;18(6):1-3. doi: 10.1080/15265161.2018.1459941. No abstract available.


Research on Human Embryos and Reproductive Materials: Revisiting Canadian Law and Policy.

Ogbogu U, Zarzeczny A, Baltz J, Bedford P, Du J, Hyun I, Jaafar Y, Jurisicova A, Kleiderman E, Koukio Y, Knoppers BM, Leader A, Master Z, Nguyen MT, Noohi F, Ravitsky V, Toews M.

Healthc Policy. 2018 Feb;13(3):10-19. doi: 10.12927/hcpol.2018.25401.


Key Implications of Data Sharing in Pediatric Genomics.

Rahimzadeh V, Schickhardt C, Knoppers BM, Sénécal K, Vears DF, Fernandez CV, Pfister S, Plon S, Terry S, Williams J, Williams MS, Cornel M, Friedman JM.

JAMA Pediatr. 2018 May 1;172(5):476-481. doi: 10.1001/jamapediatrics.2017.5500.


Geolocalisation of athletes for out-of-competition drug testing: ethical considerations. Position statement by the WADA Ethics Panel.

Borry P, Caulfield T, Estivill X, Loland S, McNamee M, Knoppers BM; WADA Ethics Panel.

Br J Sports Med. 2018 Apr;52(7):456-459. doi: 10.1136/bjsports-2017-098299. Epub 2018 Mar 2.


Epigenome-based cancer risk prediction: rationale, opportunities and challenges.

Widschwendter M, Jones A, Evans I, Reisel D, Dillner J, Sundström K, Steyerberg EW, Vergouwe Y, Wegwarth O, Rebitschek FG, Siebert U, Sroczynski G, de Beaufort ID, Bolt I, Cibula D, Zikan M, Bjørge L, Colombo N, Harbeck N, Dudbridge F, Tasse AM, Knoppers BM, Joly Y, Teschendorff AE, Pashayan N; FORECEE (4C) Consortium.

Nat Rev Clin Oncol. 2018 May;15(5):292-309. doi: 10.1038/nrclinonc.2018.30. Epub 2018 Feb 27. Review.


The Genomic Commons.

Contreras JL, Knoppers BM.

Annu Rev Genomics Hum Genet. 2018 Aug 31;19:429-453. doi: 10.1146/annurev-genom-083117-021552. Epub 2018 Jan 25. Review.


Human gene editing: revisiting Canadian policy.

Knoppers BM, Isasi R, Caulfield T, Kleiderman E, Bedford P, Illes J, Ogbogu U, Ravitsky V, Rudnicki M.

NPJ Regen Med. 2017 Jan 5;2:3. doi: 10.1038/s41536-017-0007-2. eCollection 2017. No abstract available.


Points to consider for laboratories reporting results from diagnostic genomic sequencing.

Vears DF, Sénécal K, Clarke AJ, Jackson L, Laberge AM, Lovrecic L, Piton A, Van Gassen KLI, Yntema HG, Knoppers BM, Borry P.

Eur J Hum Genet. 2018 Jan;26(1):36-43. doi: 10.1038/s41431-017-0043-9. Epub 2017 Nov 28.


Policies and strategies to facilitate secondary use of research data in the health sciences.

Burton PR, Banner N, Elliot MJ, Knoppers BM, Banks J.

Int J Epidemiol. 2017 Dec 1;46(6):1729-1733. doi: 10.1093/ije/dyx195. No abstract available.


Creating a data resource: what will it take to build a medical information commons?

Deverka PA, Majumder MA, Villanueva AG, Anderson M, Bakker AC, Bardill J, Boerwinkle E, Bubela T, Evans BJ, Garrison NA, Gibbs RA, Gentleman R, Glazer D, Goldstein MM, Greely H, Harris C, Knoppers BM, Koenig BA, Kohane IS, La Rosa S, Mattison J, O'Donnell CJ, Rai AK, Rehm HL, Rodriguez LL, Shelton R, Simoncelli T, Terry SF, Watson MS, Wilbanks J, Cook-Deegan R, McGuire AL.

Genome Med. 2017 Sep 22;9(1):84. doi: 10.1186/s13073-017-0476-3.


Criminal Prohibition of Wrongful Re‑identification: Legal Solution or Minefield for Big Data?

Phillips M, Dove ES, Knoppers BM.

J Bioeth Inq. 2017 Dec;14(4):527-539. doi: 10.1007/s11673-017-9806-9. Epub 2017 Sep 14.


Ethics approval in applications for open-access clinical trial data: An analysis of researcher statements to

So D, Knoppers BM.

PLoS One. 2017 Sep 8;12(9):e0184491. doi: 10.1371/journal.pone.0184491. eCollection 2017.


Precision medicine: a matter of regulation or collaboration?

Knoppers BM.

J Law Biosci. 2016 Oct 22;3(3):687-690. doi: 10.1093/jlb/lsw049. eCollection 2016 Dec. No abstract available.


Substitute consent to data sharing: a way forward for international dementia research?

Thorogood A, Deschênes St-Pierre C, Knoppers BM.

J Law Biosci. 2017 Jan 10;4(1):133-158. doi: 10.1093/jlb/lsw063. eCollection 2017 Apr.


Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees?

Shabani M, Dove ES, Murtagh M, Knoppers BM, Borry P.

Biopreserv Biobank. 2017 Oct;15(5):469-474. doi: 10.1089/bio.2017.0045. Epub 2017 Aug 24. Review.


Mitochondrial Replacement Therapy: The Road to the Clinic in Canada.

Knoppers BM, Leader A, Hume S, Shoubridge EA, Isasi R, Noohi F, Ogbogu U, Ravitsky V, Kleiderman E.

J Obstet Gynaecol Can. 2017 Oct;39(10):916-918. doi: 10.1016/j.jogc.2017.05.007. Epub 2017 Jul 18. No abstract available.


"Matching" consent to purpose: The example of the Matchmaker Exchange.

Dyke SOM, Knoppers BM, Hamosh A, Firth HV, Hurles M, Brudno M, Boycott KM, Philippakis AA, Rehm HL.

Hum Mutat. 2017 Oct;38(10):1281-1285. doi: 10.1002/humu.23278. Epub 2017 Jul 12.


The sIRB System: A Single Beacon of Progress in the Revised Common Rule?

Rahimzadeh V, Dove ES, Knoppers BM.

Am J Bioeth. 2017 Jul;17(7):43-46. doi: 10.1080/15265161.2017.1328530. No abstract available.


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