Families' experiences accessing care after genomic sequencing in the pediatric cancer context: "It's just been a big juggle".

Autor: Vuocolo B; Department of Molecular and Human Genetics, School of Health Professions, Baylor College of Medicine, Houston, Texas, USA., Gutierrez AM; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA., Robinson JO; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA., Recinos AM; Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.; Texas Children's Cancer Center, Texas Children's Hospital, Houston, Texas, USA., Desrosiers LR; Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.; Texas Children's Cancer Center, Texas Children's Hospital, Houston, Texas, USA., Majumder MA; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA., Bernini JC; Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.; Cancer and Hematology Clinic, Vannie E. Cook Clinic, McAllen, Texas, USA., Gill J; UT MD Anderson Cancer Center, Children's Cancer Hospital, Houston, Texas, USA., Griffin T; Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.; Department of Pediatric Hematology-Oncology, Children's Hospital of San Antonio, San Antonio, Texas, USA., Tomlinson GE; UT Health Science Center, Greehey Children's Cancer Research Institute and Division of Pediatric Hematology-Oncology, San Antonio, Texas, USA., Vallance K; Cook Children's Hematology and Oncology, Cook Children's Hospital, Forth Worth, Texas, USA., McGuire AL; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA., Parsons DW; Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.; Texas Children's Cancer Center, Texas Children's Hospital, Houston, Texas, USA., Plon SE; Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.; Texas Children's Cancer Center, Texas Children's Hospital, Houston, Texas, USA., Scollon S; Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA.; Texas Children's Cancer Center, Texas Children's Hospital, Houston, Texas, USA.

Publikováno v: Journal of genetic counseling [J Genet Couns] 2024 Dec; Vol. 33 (6), pp. 1337-1350. Date of Electronic Publication: 2024 Jan 15.

An Ethical Framework for Disclosing the Training Status and Roles of Resident-Level Surgeons to Patients.

Autor: Le NT; Department of Ophthalmology, Bascom Palmer Eye Institute, University of Miami Health System, Miami, Florida., Brandt ML; Michael E. DeBakey Department of Surgery and Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas., Majumder MA; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas. Electronic address: majumder@bcm.edu.

Publikováno v: Journal of surgical education [J Surg Educ] 2024 Oct; Vol. 81 (10), pp. 1446-1451. Date of Electronic Publication: 2024 Jul 15.

Genomic sequencing research in pediatric cancer care: Decision making, attitudes, and perceived utility among adolescents and young adults and their parents.

Autor: Gutierrez AM; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX. Electronic address: ag3@bcm.edu., Robinson JO; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX., Smith HS; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX; Precision Medicine Translational Research (PROMoTeR) Center, Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA., Desrosiers-Battu LR; Department of Pediatrics, Baylor College of Medicine, Houston, TX; Texas Children's Cancer Center, Texas Children's Hospital, Houston, TX., Scollon SR; Department of Pediatrics, Baylor College of Medicine, Houston, TX; Texas Children's Cancer Center, Texas Children's Hospital, Houston, TX., Canfield I; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX., Hsu RL; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX., Schneider NM; Department of Pediatrics, Baylor College of Medicine, Houston, TX., Parsons DW; Department of Pediatrics, Baylor College of Medicine, Houston, TX; Texas Children's Cancer Center, Texas Children's Hospital, Houston, TX., Plon SE; Department of Pediatrics, Baylor College of Medicine, Houston, TX; Texas Children's Cancer Center, Texas Children's Hospital, Houston, TX., Allen-Rhoades W; Department of Pediatric and Adolescent Medicine, Mayo Clinic, Rochester, MN., Majumder MA; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX., Malek J; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX., McGuire AL; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.

Publikováno v: Genetics in medicine : official journal of the American College of Medical Genetics [Genet Med] 2024 Aug; Vol. 26 (8), pp. 101168. Date of Electronic Publication: 2024 May 17.

Data stewardship in FTLD research: Investigator and research participant views.

Autor: Arias JJ; Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.; Department of Health Policy & Behavioral Sciences, School of Public Health, Georgia State University, Atlanta, Georgia, USA., Tyler AM; Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA., Beskow LM; Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, Tennessee, USA., Carillo MC; Division of Medical & Scientific Relations, Alzheimer's Association, Chicago, Illinois, USA., Dickinson S; The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA., Goldman J; Neurological Institute, Columbia University Irving Medical Center, New York, New York, USA., Majumder MA; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA., Mello MM; Stanford Law School and Department of Medicine, Stanford University, Palo Alto, California, USA., Snyder HM; Division of Medical & Scientific Relations, Alzheimer's Association, Chicago, Illinois, USA., Yokoyama JS; Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.; Department of Radiology and Biomedical Imaging, University of California, San Francisco, San Francisco, California, USA.

Publikováno v: Alzheimer's & dementia : the journal of the Alzheimer's Association [Alzheimers Dement] 2024 Apr; Vol. 20 (4), pp. 2886-2893. Date of Electronic Publication: 2024 Mar 08.

Benefits of sharing neurophysiology data from the BRAIN Initiative Research Opportunities in Humans Consortium.

Autor: Rahimzadeh V; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA., Jones KM; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA; Department of History, Purdue University, West Lafayette, IN 47907, USA., Majumder MA; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA., Kahana MJ; Department of Psychology, University of Pennsylvania, Philadelphia, PA 19104, USA., Rutishauser U; Department of Neurosurgery, Cedars-Sinai Medical Center, Los Angeles, CA 90048, USA., Williams ZM; Department of Neurosurgery, Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114, USA., Cash SS; Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114, USA., Paulk AC; Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114, USA., Zheng J; Department of Ophthalmology, Boston Children's Hospital, Boston, MA 02115, USA., Beauchamp MS; Department of Neurosurgery, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA., Collinger JL; Rehab Neural Engineering Labs, Department of Physical Medicine and Rehabilitation, University of Pittsburgh, Pittsburgh, PA 15219, USA., Pouratian N; Department of Neurological Surgery, UT Southwestern Medical Center, Dallas, TX 75390, USA., McGuire AL; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA., Sheth SA; Department of Neurosurgery, Baylor College of Medicine, Houston, TX 77030, USA. Electronic address: sameer.sheth@bcm.edu.

Publikováno v: Neuron [Neuron] 2023 Dec 06; Vol. 111 (23), pp. 3710-3715. Date of Electronic Publication: 2023 Nov 08.