Selected Publications
Johnson LM, Talleur AC, Sharma A. Allocation of Gene Therapy for Rare Diseases: FDA Approved Therapy or Clinical Trial for Patients with Sickle Cell Disease? American Journal of Bioethics, forthcoming April 2025.
Johnson LM, Wilfond BS, Ray AD, Dawson L. Institutional Access to Gene therapy for Sickle Cell Disease – Treatment on a Clinical Trial or Receive a Newly Approved Therapy? (Research Ethics Case Series) American Journal of Bioethics, forthcoming April 2025.
Mandrell B, Boggs J, Gattuso, Caples M, Sawyer KE, Madni A, Johnson LM. Moral Distress and Moral Stress Among Nurses Facing Challenges in a Health Care System Under Pressure. American Journal of Bioethics December 2024. PMID: 39565260
Johnson LM, Sharma A, Carroll Y, Goodson D, Mandrell BN, Gattuso J, Young A, Boggs J, Wilfond BS, Unguru Y. Listening to patients and parents with sickle cell disease: the totality of gene therapy risks may outweigh the perceived benefits. Blood Advances November 2024. PMID: 38865716
Ray AD, Dawson L, Wilfond BS, Johnson LM. Disclosing interim results to parents offered enrollment in a Fetal Intervention Trial (Research Ethics Case Series) American Journal of Bioethics October 2024. PMID: 39283373
Dawson L, Ray AD, Wilfond BS, Johnson LM. To Swab or Not to Swab: Waiver of Consent to Collect Perianal Specimens from Incapacitated Patients with Severe Burn Injury (Research Ethics Case Series) American Journal of Bioethics April 2024. PMID: 38529965.
Berger A, Rennie S, Aijaz J, Johnson LM, Antillon F, Roberts MC, Chitsike I, Kambugu J, Saha V, Bhakta N, Davis AM, Alexander TB. The Role of Relative Advantage for Development of Sequencing- Based Diagnostics for Pediatric Cancer in Low- and Middle-Income Countries. Cancer January 2024. PMID: 37843081.
Wilfond BS, Duenas DM, Johnson LM. Researcher Obligations to Participants in Novel COVID-19 Vaccine Research. (Research Ethics Case Series). American Journal of Bioethics October 2023. PMID: 37812093
Unguru Y, Bernhardt MB, Berg SL, Johnson LM, Pyke-Grimm K, Woodman C, Fernandez CV. Letter to the Editor (Essential Medicines for Childhood Cancer in Europe). Lancet Oncology February 2023.
Johnson LM, Elliot A, Sawyer KE, Steuer KB, Levine D. Beyond Mediation: A Toolkit Approach to Preventing and Managing Conflict with Patients and Families in Difficulty. Open Peer Commentary, American Journal of Bioethics January 2023. PMID: 36595020
Wilfond BS, Duenas DM, Johnson LM. To Disclose or Not to Disclose: Secondary Findings of XXY Chromosomes. (Research Ethics Case Series). American Journal of Bioethics October 2022. PMID: 36170065
Benedetti D, Marron JM, Thomas SM, Caruso-Brown A, Pyke-Grimm K, Johnson LM, Kodish E, Unguru Y. Words Matter. Letter to the Editor, Journal of Clinical Oncology September 2022. PMID: 36150097
Johnson LM. Time for a Reboot: Multi-Modal Approaches to Improving Informed Consent Communication in Pediatric Oncology. Invited Highlight, Pediatric Blood and Cancer E-pub June 2022. PMID: 35731842
Wilfond BS, Duenas DM, Johnson LM. Enrolling Adolescents with Rare Disease for Early Phase Clinical Trials While Under the Care of Child Protection Services: Balancing Protection and Access. (Research Ethics Case Series). American Journal of Bioethics April 2022. PMID: 35420512
Wilfond BS, Duenas DM, Johnson LM. Supporting Community-Academic Research Partnerships: Reflections from the Ground (Research Ethics Case Series). American Journal of Bioethics October 2021. PMID: 34554061
Johnson LM, Duenas DM, Wilfond BS. When Professional Meets Personal: How Should Research Staff Advertise on Social Media for Research Opportunities? (Research Ethics Case Series). American Journal of Bioethics October 2021. PMID: 34554059
Rogers BR and Johnson LM. Informed Consent Conversations: Neither the Beginning Nor the End. American Journal of Bioethics May 2021. PMID: 33945412
Johnson LM, Duenas DM, Wilfond BS. Conjoined Consent: Informed Consent When Donor and Recipient Are Both Research Participants. (Research Ethics Case Series). American Journal of Bioethics April 2021. PMID: 33825622.
Wilfond BS, Duenas DM, Johnson LM. Supporting Investigators in Challenging Cases: Unease in the Face of an Ethically Appropriate Action (Research Ethics Case Series). American Journal of Bioethics April 2021. PMID: 33825623
Johnson LM, Kaye EC, Sawyer K, Brenner AM, Friedrichsdorf SJ, Rosenberg AR, Antommaria AHM. Ethics Rounds. Opioid Management in the Dying Child with Addiction. Pediatrics February 2020. PMID: 33446508
Wilfond BS, Duenas DM, Johnson LM. Conflicts of Interest and Recommendations for Clinical Treatments That Benefit Researchers. (Research Ethics Case Series). American Journal of Bioethics October 2020. PMID: 32945746
Johnson LM, Duenas DM, Wilfond BS. Click Here to Complete this Survey: Online Research, Adolescents, and Parental Consent (Research Ethics Case Series). American Journal of Bioethics October 2020. PMID: 32945745
Sharma A, Bhakta N, Johnson LM. Germline Gene Editing for Sickle Cell Disease. American Journal of Bioethics August 2020. PMID: 32804058
Canavera K and Johnson LM. Integrating Mental Health Care for Medically Complex Children. Pediatrics July 2020. PMID: 32699070
Wilfond BS, Duenas DM, Johnson LM. Clearing Muddy Waters: The Need to Reconceptualize Minor Increase Over Minimal Risk in Pediatric Rare Disease Research. Editorial, American Journal of Bioethics April 2020. PMID: 32208084
Sharma A and Johnson LM. Bringing Known Drugs to Pediatric Research – Safety, Efficacy, and the Ambiguous Minor Increase in Minimal Risk. American Journal of Bioethics April 2020. PMID: 32223621
Wilfond BS, Duenas DM, Johnson LM. Greater than Minimal Risk, No Direct Benefit – Bridging Drug Trials and Novel Therapy in Pediatric Populations (Research Ethics Case Series). American Journal of Bioethics April 2020. PMID: 32208073
Johnson LM, Duenas DM, Wilfond BS. Ethical drug development for rare childhood diseases: When there are limited but promising data in adults, how to choose between safety or efficacy studies? (Research Ethics Case Series). American Journal of Bioethics April 2020. PMID: 32208077
Sharma, A and Johnson LM. Should poor social support be an exclusion criterion in bone marrow transplantation? American Journal of Bioethics November 2019. PMID: 31661405
Johnson LM, Zabrowski J, Wilfond B. A Cluster Randomized Trial to Screen for Abusive Head Trauma in the Pediatric Intensive Care Unit – How to Manage site-specific Evidence of Racial/Ethnic Disparity (Research Ethics Case Series). American Journal of Bioethics October 2019. PMID: 31557100
Wilfond B, Zabrowski J, Johnson LM. A pragmatic trial of suicide risk assessment and ambulance transport decision- making among Emergency Medical Services Providers: Implications for patient consent (Research Ethics Case Series). American Journal of Bioethics October 2019. PMID: 31557089
Sharma A and Johnson LM. Mitigating Challenges in Dual-Role Consent: Honoring Patient Preferences to Discuss Research Participation with Someone They Know. American Journal of Bioethics April 2019. PMID: 31544670
Wilfond BS, Zabrowski J, Johnson LM. The limitations of “boilerplate” language in informed consent: Single IRB review of multisite genetic research in military personnel (Research Ethics Case Series). American Journal of Bioethics April 2019, PMID: 30994423
Johnson LM, Zabrowksi J, Wilfond BS. Should Research Participants be Notified about Results of Currently Unknown but Potential Significance? (Research Ethics Case Series). American Journal of Bioethics April 2019, PMID: 30994427
Sisk BA, Canavera K, Sharma A, Baker JN, Johnson LM. Ethical issues in the care of adolescent and young adult oncology patients. Pediatr Blood Cancer Jan. 8:es7608, 2019, PMID:30623573
Johnson LM, Torres C, Sykes A, Gibson DA, Baker JN. Peer Loss Due to Death Increases Risk of Adverse Psychological Outcomes in Adolescents and Early Young Adults with Cancer. Plos One August 2017. PMID:28832654
Johnson LM, Hamilton KV, Valez JM, Knapp K, Baker JN, Nichols KE. Ethical Considerations Surrounding Germline Next Generation Sequencing of Children with Cancer. Expert Review of Molecular Diagnostics May;17(5):523-534, 2017. PMID: 28399664
Johnson LM, Frader J, Wolfe J, Baker JN, Anghelescu D, Lantos JD. Ethics Rounds: Palliative Sedation with Propofol for an Adolescent with a DNR Order. Pediatrics Aug;140(2), 2017. PMID: 28679640
Anghelescu DL, Knapp E, Johnson LM, Baker JN. The Role of The Pediatric Anesthesiologist in Relieving Suffering at the End of Life: When is Palliative Sedation Appropriate in Pediatrics? Pediatric Anesthesia Apr;27(4):443-444 2017. PMID: 28300355
Johnson LM, Valdez JM, Quinn E, Sykes A, McGee R, Nuccio R, Hines-Dowell S, Baker JN, Kesserwan C, Nichols KE, Mandrell B. Integrating Next Generation Sequencing into Pediatric Oncology Practice: An Assessment of Physician Confidence and Understanding of Clinical Genomics. Cancer 123(12):2352-2359 2017. PMID: 28192596
Nickels AS, Myers GD, Johnson LM, Joshi A, Sharp RR, Lantos JD. Ethics Rounds: Can Parents Refuse a Potentially Life-Saving Transplant for Severe Combined Immunodeficiency? Pediatrics July;138(1), 2016. PMID: 27307145
Levine DR, Johnson LM, Wiser RK, Gibson D, Kane JR, Baker JN. Integrating Palliative Care in Pediatric Oncology: An Evolving Paradigm at St Jude Children’s Research Hospital. Journal of National Comprehensive Cancer Network June;14(6):741-8, 2016. PMID 27283167.
Johnson LM, Unguru Y. Recruiting Children for Clinical Trials: Lessons from Pediatric Oncology. Am J Bioeth 15(11):24-26, 2015.
Johnson LM, Leek AC, Drotar D, Noll RB, Rheingold SR, Kodish ED, Baker JN. Practical Communication Guidance to Improve Phase I Informed Consent Conversations and Decision-Making in Pediatric Oncology. Cancer 121(14):2439-48, 2015.
Johnson LM, Church CL, Metzger M, Baker JN. Ethics Consultation in Pediatrics: Long-Term Experience from a Pediatric Oncology Center. Am J Bioeth 15(5):3-17, 2015.
Weaver M, Johnson LM. International Child Health Competencies. JAMA Pediatr 169(7):621-622, 2015.
Baker JN, Levine DR, Hinds PS, Weaver MS, Cunningham MJ, Johnson LM, Anghelescu D, Mandrell B, Gibson DV, Jones B, Wolfe J, Feudtner C, Freibert S, Carter B, Kane JR. Research Priorities in Pediatric Palliative Care. J Pediatr 167(2):467-70.e3, 2015.
Johnson LM and Sanchez AM (co-first authors), Kane JR, Kasow KA, Quintana Y, Barfield R, Church CL, Hester M, Baker JN. Ethical Decision Making About End-of-life Care Issues by Pediatric Oncologists in Economically Diverse Settings. J Pediatr Hematol Oncol 37(4):257-63, 2015.
Levine DR, Johnson LM, Mandrell B, Yang J, West N, Hinds PS, Baker JN. Does phase 1 trial enrollment preclude quality end‐of‐life care? Phase 1 trial enrollment and end‐of‐life care characteristics in children with cancer. Cancer 121(9):1508-1512, 2015.
Zaidi A, Johnson LM, Church CL, Gomez-Garcia WC, Popescu M, Margolin J, Ribeiro R. Management of Concurrent Pregnancy and Acute Lymphoblastic Malignancy in Teenaged Patients. Two Illustrative Cases and Review of the Literature. J Adolesc Young Adult Oncol 3(4):160-175, 2014.
Johnson LM, Snaman JM, Cupit MC, Baker JN. Review Article: End of Life Care for Hospitalized Children. Pediatr Clin North Am 61(4):835-854, 2014.
Johnson LM, Levine D. Allocation of Drugs in Short Supply. Virtual Mentor 15:645-648, 2013.
Johnson LM, Feudtner C, Baker JN. Minimally Conscious Assumptions and Dangerous Decision-making Inferences. AJOB Neurosci 4(1):61-63, 2013.
Johnson LM, Church CL, Walsh M, Baker JN. Clinically Significant? Depends Who You Ask. Am J Bioeth (10):18-20, 2012.
Anghelescu DL, Hamilton H, Faughnan LG, Johnson LM, and Baker JN. Pediatric Palliative Sedation Therapy with Propofol: Recommendations Based on Experience in Children with Terminal Cancer. J Palliat Med 15(10):1082-90, 2012.
Johnson LM, Spraker HL, Coleman JL, Baker JN. An unusual case of Ogilvie Syndrome in a pediatric oncology patient with progressive incurable cancer who failed treatment with neostigmine. J Palliat Med 15(9):1042-6, 2012.
Last update: March 2024