Published on in Vol 10, No 1 (2021): Jan-Mar

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/23523, first published .
Barriers and Facilitators to Genetic Service Delivery Models: Scoping Review

Barriers and Facilitators to Genetic Service Delivery Models: Scoping Review

Barriers and Facilitators to Genetic Service Delivery Models: Scoping Review

Journals

  1. Tiller J, Cousens N, Kaur R, Rowley S, Ko Y, Mahale S, Bankier A, Meiser B, Barlow-Stewart K, Burnett L, Jacobs C, James P, Trainer A, Neil S, Campbell I, Andrews L, Delatycki M. Population-basedBRCA1/2testing programmes are highly acceptable in the Jewish community: results of the JeneScreen Study. Journal of Medical Genetics 2023;60(3):265 View
  2. Dillon J, Ademuyiwa F, Barrett M, Moss H, Wignall E, Menendez C, Hughes K, Plichta J. Disparities in Genetic Testing for Heritable Solid-Tumor Malignancies. Surgical Oncology Clinics of North America 2022;31(1):109 View
  3. Hutchcraft M, Zhang S, Lin N, Gottschalk G, Keck J, Belcher E, Sears C, Wang C, Liu K, Dietz L, Pickarski J, Wei S, Cardarelli R, DiPaola R, Kolesar J. Real-World Evaluation of a Population Germline Genetic Screening Initiative for Family Medicine Patients. Journal of Personalized Medicine 2022;12(8):1297 View
  4. Blout Zawatsky C, Leonhard J, Bell M, Moore M, Petry N, Platt D, Green R, Hajek C, Christensen K. Workforce Considerations When Building a Precision Medicine Program. Journal of Personalized Medicine 2022;12(11):1929 View
  5. Hurtado-de-Mendoza A, Reyna V, Wolfe C, Gómez-Trillos S, Sutton A, Brennan A, Sheppard V. Adapting a Theoretically-Based intervention for underserved clinical populations at increased risk for hereditary Cancer: Lessons learned from the BRCA-Gist experience. Preventive Medicine Reports 2022;28:101887 View
  6. Kaposy C. Prospects for limiting access to prenatal genetic information about Down syndrome in light of the expansion of prenatal genomics. The New Bioethics 2023;29(3):226 View
  7. Wand H, Kalia S, Helm B, Suckiel S, Brockman D, Vriesen N, Goudar R, Austin J, Yanes T. Clinical genetic counseling and translation considerations for polygenic scores in personalized risk assessments: A Practice Resource from the National Society of Genetic Counselors. Journal of Genetic Counseling 2023;32(3):558 View
  8. Panikker P, Roy S, Ghosh A, Poornachandra B, Ghosh A. Advancing precision medicines for ocular disorders: Diagnostic genomics to tailored therapies. Frontiers in Medicine 2022;9 View
  9. Richards S, Mu W, Nusbaum R, Lincoln K, Solimine J. The Genetic Testing Experience of Individuals with Parkinson's Disease. Movement Disorders Clinical Practice 2023;10(2):248 View
  10. Grant P, Cook C, Langlois S, Nuk J, Mung S, Zhang Q, Lynd L, Austin J, Elliott A. Evaluation of out‐of‐pocket pay genetic testing in a publicly funded healthcare system. Clinical Genetics 2023;103(4):424 View
  11. Husereau D, Steuten L, Muthu V, Thomas D, Spinner D, Ivany C, Mengel M, Sheffield B, Yip S, Jacobs P, Sullivan T. Effective and Efficient Delivery of Genome-Based Testing-What Conditions Are Necessary for Health System Readiness?. Healthcare 2022;10(10):2086 View
  12. Scheuner M, Huynh A, Chanfreau-Coffinier C, Lerner B, Gable A, Lee M, Simon A, Coeshott R, Hamilton A, Patterson O, DuVall S, Russell M. Demographic Differences Among US Department of Veterans Affairs Patients Referred for Genetic Consultation to a Centralized VA Telehealth Program, VA Medical Centers, or the Community. JAMA Network Open 2022;5(4):e226687 View
  13. Espinoza Moya M, Guertin J, Dorval M, Lapointe J, Bouchard K, Nabi H, Laberge M. Examining interprofessional collaboration in oncogenetic service delivery models for hereditary cancers: a scoping review protocol. BMJ Open 2022;12(12):e066802 View
  14. Álvaro-Sánchez S, Abreu-Rodríguez I, Abulí A, Serra-Juhe C, Garrido-Navas M. Current Status of Genetic Counselling for Rare Diseases in Spain. Diagnostics 2021;11(12):2320 View
  15. Katz S, Abrahamse P, Hodan R, Kurian A, Rankin A, Tocco R, Rios-Ventura S, Ward K, An L. Cascade Genetic Risk Education and Testing in Families With Hereditary Cancer Syndromes: A Pilot Study. JCO Oncology Practice 2023;19(6):e848 View
  16. Gunn C, Li E, Gignac G, Pankowska M, Loo S, Zayhowski K, Wang C. Delivering Genetic Testing for Patients with Prostate Cancer: Moving Beyond Provider Knowledge as a Barrier to Care. Cancer Control 2023;30 View
  17. Tedross M, Wang H, Heigl‐Maza C, Russell R, Young C, Kramer J, Martinez D, Chen W, Robbins‐Furman P, Page R, Montalvo‐Liendo N, Chen L. Pregnant Latinas' perspectives on pursuing expanded carrier screening: “It is better to know than not”. Journal of Genetic Counseling 2023;32(4):887 View
  18. Cohen S, Nixon D. Evaluating attributes of a collaborative model of service delivery for hereditary cancer risk assessment. Journal of Genetic Counseling 2024;33(2):291 View
  19. Gasteiger N, Vercell A, Khan N, Dowding D, Davies A, Davies A. Digital interventions for genomics and genetics education, empowerment, and service engagement: A systematic review. Journal of Community Genetics 2023;14(3):227 View
  20. Walton N, Christensen G. Paving a pathway for large-scale utilization of genomics in precision medicine and population health. Frontiers in Sociology 2023;8 View
  21. Bland H, Gilmore M, Andujar J, Martin M, Celaya‐Cobbs N, Edwards C, Gerhart M, Hooker G, Kraft S, Marshall D, Orlando L, Paul N, Pratap S, Rosenbloom S, Wiesner G, Mittendorf K. Conducting inclusive research in genetics for transgender, gender‐diverse, and sex‐diverse individuals: Case analyses and recommendations from a clinical genomics study. Journal of Genetic Counseling 2024;33(4):772 View
  22. Swisher E, Rayes N, Bowen D, Peterson C, Norquist B, Coffin T, Gavin K, Polinsky D, Crase J, Bakkum-Gamez J, Blank S, Munsell M, Nebgen D, Fleming G, Olopade O, Law S, Zhou A, Levine D, D’Andrea A, Lu K. Remotely Delivered Cancer Genetic Testing in the Making Genetic Testing Accessible (MAGENTA) Trial. JAMA Oncology 2023;9(11):1547 View
  23. Doberstein R, Pilipenko V, Pulda K, Wusik K, Spaeth C. Genetic counseling clinic model expansion: Impact on access for general genetics clinic. Journal of Genetic Counseling 2023 View
  24. Pozzar R, Seven M. Interventions to support decision making in people considering germline genetic testing for BRCA 1/2 pathogenic and likely pathogenic variants: A scoping review. Journal of Genetic Counseling 2024;33(2):392 View
  25. Wang T, Dossett L. Incorporating Value-Based Decisions in Breast Cancer Treatment Algorithms. Surgical Oncology Clinics of North America 2023;32(4):777 View
  26. Lavelle T, Smith H. Pediatric Genomic Medicine: Value, Implementation, and Access. Clinical Therapeutics 2023;45(8):687 View
  27. Mackall M, Tschirgi M. Perceived barriers, recommendations, and resources for multistate licensure in the United States: A mixed‐methods study of laboratory genetic counselors. Journal of Genetic Counseling 2023 View
  28. Foil K, Christon L, Kerrigan C, Flume P, Drinkwater J, Szentpetery S. Experiences of cystic fibrosis newborn screening and genetic counseling. Journal of Community Genetics 2023;14(6):621 View
  29. Sobotka S, Ross L. Newborn Screening for Neurodevelopmental Disorders May Exacerbate Health Disparities. Pediatrics 2023;152(4) View
  30. Nisselle A, King E, Terrill B, Davey B, McClaren B, Dunlop K, Graves D, Metcalfe S, Gaff C. Investigating genomic medicine practice and perceptions amongst Australian non-genetics physicians to inform education and implementation. npj Genomic Medicine 2023;8(1) View
  31. Marsh L, Mendoza M, Tatsugawa Z, Pineda E, Markovic D, Holschneider C, Zakhour M. A Community Health Worker Model to Support Hereditary Cancer Risk Assessment and Genetic Testing. Obstetrics & Gynecology 2023;142(3):699 View
  32. Schostak M, Bradbury A, Briganti A, Gonzalez D, Gomella L, Mateo J, Penault-Llorca F, Stenzinger A, Wyatt A, Bjartell A. Practical Guidance on Establishing a Molecular Testing Pathway for Alterations in Homologous Recombination Repair Genes in Clinical Practice for Patients with Metastatic Prostate Cancer. European Urology Oncology 2024;7(3):344 View
  33. Jansen C, Lokich E. Lynch Syndrome. Topics in Obstetrics & Gynecology 2023;43(12):1 View
  34. Valencia I, Alexander A, Andrade D, Arevalo-Astrada M, Rubiños C, Auer N, Bainbridge J, Baxendale S, Bartolomei F, Becker D, Berg A, Bernasconi A, Bernasconi N, Bernhardt B, Bhatnagar S, Blümcke I, Blumenfeld H, Buchanan G, Burdette D, Burneo J, Busch R, Chauvel P, Chin J, Clifford L, Conner K, Cook M, Conway J, Diaz-Arastia R, Drees C, French J, Ganguly T, Gelfand M, Glauser T, Gleichgerrcht E, Goldman A, Gonzalez-Martinez J, Gotman J, Grinspan Z, Guilfoyle S, Gupta G, Hammer M, Hartman A, Hentges K, Hogan R, Huh L, Hyslop A, Jobst B, Josephson C, Kelley S, Knupp K, Koepp M, Kothare S, Krook-Magnuson E, Kwasa J, La Vega-Talbott M, Lam A, Lee J, Lowenstein D, Maturu S, Mayor L, McDonald C, McKee H, McKhann G, Meador K, Mefford H, Michael E, Mikati M, Millichap J, Mitchell J, Myers L, Naritoku D, Neville K, Noebels J, O’Brien T, Oluigbo C, Patel A, Pavlova M, T. Paz J, Pennell P, Perry M, Perucca P, Pitkänen A, Plueger M, Pugh M, Quigg M, Reddy S, Ryan C, Reynolds T, Sajatovic M, Santana-Gomez C, Schommer L, Schuele S, Shellhaas R, Shrey D, Singh R, Sperling M, Suleman S, Templer J, Thom M, Trinka E, Varadkar S, Velez-Ruiz N, Velíšková J, Voskobiynyk Y, Wagner J, Wagnon J, Waller C, Waller J, Wang Z, Welborn M, Wirrell E. Highlights From the Annual Meeting of the American Epilepsy Society 2022. Epilepsy Currents 2023 View
  35. Rasmussen L, Agrawal A, Gordon E. Transplant Nephrologists' Preferences for Clinical Decision Support for APOL1 Genetic Testing of Living Kidney Donors: A Focus Group Study. Kidney360 2023;4(11):1610 View
  36. Ahimaz P, Bergner A, Florido M, Harkavy N, Bhattacharyya S. Genetic counselors' utilization of ChatGPT in professional practice: A cross‐sectional study. American Journal of Medical Genetics Part A 2024;194(4) View
  37. Mazzola S, Schreiber A. Genetics evaluation outcomes of patients with pediatric hearing loss: 2008–2022 retrospective study. American Journal of Otolaryngology 2024;45(2):104196 View
  38. Friedrich B, Vindrola-Padros C, Lucassen A, Patch C, Clarke A, Lakhanpaul M, Lewis C. “A very big challenge”: a qualitative study to explore the early barriers and enablers to implementing a national genomic medicine service in England. Frontiers in Genetics 2024;14 View
  39. Adams A, Ball R, Darilek S. Telegenetics to provide comprehensive prenatal diagnosis. Prenatal Diagnosis 2024;44(4):492 View
  40. Rodriguez N, Furniss C, Yurgelun M, Ukaegbu C, Constantinou P, Fortes I, Caruso A, Schwartz A, Stopfer J, Underhill-Blazey M, Kenner B, Nelson S, Okumura S, Zhou A, Coffin T, Uno H, Horiguchi M, Ocean A, McAllister F, Lowy A, Klein A, Madlensky L, Petersen G, Garber J, Lippman S, Goggins M, Maitra A, Syngal S. A Randomized Trial of Two Remote Health Care Delivery Models on the Uptake of Genetic Testing and Impact on Patient-Reported Psychological Outcomes in Families With Pancreatic Cancer: The Genetic Education, Risk Assessment, and Testing (GENERATE) Study. Gastroenterology 2024;166(5):872 View
  41. Cochrane C, Wetherill L, Delk P, Neidlinger T. The majority of parents of children undergoing genetic testing report preference for earlier genetic counseling appointments. Journal of Genetic Counseling 2024 View
  42. Costa C, Silva J, Azevedo L, de Lemos M, Paneque M. A collaborative model for Medical Genetics services delivery in Portugal: a multidisciplinary perspective. Journal of Community Genetics 2024;15(3):333 View
  43. Romagnoli K, Salvati Z, Johnson D, Ramey H, Chang A, Williams M. Genomics in nephrology: identifying informatics opportunities to improve diagnosis of genetic kidney disorders using a human-centered design approach. Journal of the American Medical Informatics Association 2024;31(6):1247 View
  44. Clausen M, Krishnapillai S, Hirjikaka D, Kodida R, Shickh S, Reble E, Mighton C, Sam J, Adi-Wauran E, Baxter N, Feldman G, Glogowski E, Lerner-Ellis J, Scheer A, Shastri-Estrada S, Shuman C, Armel S, Aronson M, Graham T, Panchal S, Thorpe K, Carroll J, Eisen A, Elser C, Kim R, Faghfoury H, Schrader K, Seto E, Bombard Y. Genetics Adviser: The development and usability testing of a new patient digital health application to support clinical genomic testing. Genetics in Medicine Open 2024;2:101814 View
  45. Greene B, Rosenberg A, Marron J. A Communication and Decision-Making Framework for Pediatric Precision Medicine. Pediatrics 2024;153(4) View
  46. Hafez S, Mohammed N, A. Alshehri A, Khalid Hussein M, Saad Abdullah Alwadei H, Eltaher Hamed Abdulrahman E, Ramadan Elrefaey S, Elhaj Alawad A, Elradhi Abdulrahman N, Saied Harfoush M. Exploring Public Knowledge, Attitudes, and Barriers to Using Genetic Services in Damanhur City and Beni-Suef City, Egypt: A Cross-Sectional Study. Cureus 2024 View
  47. Johnson D, Del Fiol G, Kawamoto K, Romagnoli K, Sanders N, Isaacson G, Jenkins E, Williams M. Genetically guided precision medicine clinical decision support tools: a systematic review. Journal of the American Medical Informatics Association 2024;31(5):1183 View
  48. Singh H, Nipp R. Bridging the Divide: From Universal Germline Testing Guidance to Real-World Implementation in Pancreatic Cancer Care. JCO Oncology Practice 2024;20(8):1012 View
  49. Austin S, Hanson E, Delacroix E, Bacon E, Rice J, Gerido L, Rizzo E, Pleasant V, Stoffel E, Griggs J, Resnicow K. Impact of barriers and motivators on intention and confidence to undergo hereditary cancer genetic testing. Journal of Genetic Counseling 2024 View
  50. Abdelwahed N. The Screening Strategies Used to Establish Egyptian Women Entrepreneurs’ Attitudes towards Genetic Technology. OBM Genetics 2024;08(02):1 View
  51. Murfin M. Patient Education on Genomics. Physician Assistant Clinics 2024;9(4):601 View
  52. Ashenden A, Chowdhury A, Anastasi L, Lam K, Rozek T, Ranieri E, Siu C, King J, Mas E, Kassahn K. The Multi-Omic Approach to Newborn Screening: Opportunities and Challenges. International Journal of Neonatal Screening 2024;10(3):42 View
  53. Scollon S, Robinson J, Jo E, Suckiel S, Amendola L, Foreman A, Jarvik G, Rini C, Wang T, Slavotinek A. Satisfaction with mode of delivery of genomic sequencing results in a diverse national sample of research participants through the Clinical Sequencing Evidence-Generating Research Consortium. Genetics in Medicine 2024;26(9):101176 View
  54. Horgan D, Hofman P, Subbiah V. Welcoming the future: embracing novel technologies for a progressive health system. ESMO Open 2024;9(8):103656 View
  55. Knoppers T, Haley C, Patrinos D, Zawati M. “Protection for the public, better use of resources and clearer lines”: Interviews with genetic counselors and their colleagues on the need for regulation in Quebec. Journal of Genetic Counseling 2024 View
  56. Morgan S, Lajonchere C, Prelip M, Palmer C. Exploring perceptions of genetic counseling student‐run free clinics as an innovative service delivery model to increase access to genetic counseling services. Journal of Genetic Counseling 2024 View
  57. Brown R, Close C, Mailes M, Gonzalez L, Goetz D, Filigno S, Preslar R, Tran Q, Hempstead S, Lomas P, Brown A, Flume P. Cystic fibrosis foundation position paper: Redefining the cystic fibrosis care team. Journal of Cystic Fibrosis 2024;23(6):1045 View
  58. Kiser D, Elhanan G, Bolze A, Neveux I, Schlauch K, Metcalf W, Cirulli E, McCarthy C, Greenberg L, Grime S, Blitstein J, Plauth W, Grzymski J. Screening Familial Risk for Hereditary Breast and Ovarian Cancer. JAMA Network Open 2024;7(9):e2435901 View
  59. Kanbergs A, Rauh-Hain J, Wilke R. Differential Receipt of Genetic Services Among Patients With Gynecologic Cancer and Their Relatives: A Review of Challenges to Health Equity. Clinical Obstetrics & Gynecology 2024;67(4):666 View
  60. González Peña T, Huang M. Genetic Predisposition for Gynecologic Cancers. Clinical Obstetrics & Gynecology 2024;67(4):660 View
  61. Chan A, Bogyo K, Geltzeiler A, Zhang Y, Ahimaz P. Piloting an Educational Module on Consenting for Exome Sequencing Among Non-Genetics Physicians at a Medical Institution. Journal of Continuing Education in the Health Professions 2024 View
  62. Miller E, Brown E, Christian S, Kelly M, Knight L, Saberi S, Rigelsky C, Ingles J. Genetic testing and counseling for hypertrophic cardiomyopathy: An evidence‐based practice resource of the National Society of Genetic Counselors. Journal of Genetic Counseling 2024 View
  63. Sibomana O. Genetic Diversity Landscape in African Population: A Review of Implications for Personalized and Precision Medicine. Pharmacogenomics and Personalized Medicine 2024;Volume 17:487 View
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Books/Policy Documents

  1. Hasadsri L, Allyse M. Diagnostic Molecular Pathology. View