O58: Measuring perceived utility of genomic sequencing in children and adults: Instrument development and validation

Autor: Hadley Smith, Jill Robinson, Caryn Rubanovich, Ariel Levchenko, Janet Malek, Kyle Brothers, Benjamin Wilfond, Carol Horowitz, Christine Rini, Barbara Biesecker, Sara Knight, Cinnamon Bloss, Amy McGuire

Publikováno v: Genetics in Medicine Open, Vol 1, Iss 1, Pp 100747- (2023)

Externí odkaz: https://doaj.org/article/ee2d658ad44a46daab44fa1bf1055f37

Perceived Utility of Genomic Sequencing: Qualitative Analysis and Synthesis of a Conceptual Model to Inform Patient-Centered Instrument Development

Autor: Hadley Stevens Smith, Stephanie R. Morain, Jill Oliver Robinson, Isabel Canfield, Janet Malek, Caryn Kseniya Rubanovich, Cinnamon S. Bloss, Sara L. Ackerman, Barbara Biesecker, Kyle B. Brothers, Crispin N. Goytia, Carol R. Horowitz, Sara J. Knight, Barbara Koenig, Stephanie A. Kraft, Simon Outram, Christine Rini, Kelly J. Shipman, Margaret Waltz, Benjamin Wilfond, Amy L. McGuire

Publikováno v: The patient, vol 15, iss 3
Patient

BACKGROUND AND OBJECTIVES: Successful clinical integration of genomic sequencing (GS) requires evidence of its utility. While GS potentially has benefits (utilities) or harms (disutilities) across multiple domains of life for both patients and their

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::325dd09837edcbb6b73f3ebff3fddaeb
https://escholarship.org/uc/item/2zw0x7fb

Responding to signals of mental and behavioral health risk in pragmatic clinical trials: Ethical obligations in a healthcare ecosystem

Autor: Joseph Ali, Stephanie R. Morain, P. Pearl O'Rourke, Benjamin Wilfond, Emily C. O'Brien, Christina K. Zigler, Karen L. Staman, Kevin P. Weinfurt, Jeremy Sugarman

Publikováno v: Contemp Clin Trials

BACKGROUND: Ethical responsibilities for monitoring and responding to signals of behavioral and mental health risk (such as suicidal ideation, opioid use disorder, or depression) in general clinical research have been described; however, pragmatic cl

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::611801c6c86b36cb5f9ea373c2ad1142
https://pubmed.ncbi.nlm.nih.gov/34998990

Azithromycin for Early Pseudomonas Infection in Cystic Fibrosis. The OPTIMIZE Randomized Trial

Autor: Nicole Mayer-Hamblett, George Retsch-Bogart, Margaret Kloster, Frank Accurso, Margaret Rosenfeld, Gary Albers, Philip Black, Perry Brown, AnneMarie Cairns, Stephanie D. Davis, Gavin R. Graff, Gwendolyn S. Kerby, David Orenstein, Rachael Buckingham, Bonnie W. Ramsey, Frank J. Accurso, Michelle Howenstine, Susan Jacob, Richard Kronmal, Robert Kuhn, Karen McCoy, David Nichols, Scott Sagel, Lisa Saiman, John Sheridan, Benjamin Wilfond, Edith Zemanick, Irene Bondick, Lauren Braam, Margaret Brassil, Missy Cianciola, Sonya Heltshe, Miya Johnson, Jean Kirihara, Ada Kong, Shelly Ma, Sharon McNamara, Lindsey Mann, Kelly Moormann, Matthew Myers, Kathy Seidel, Michelle Skalland, Carmen Ufret-Vincenty, Jill VanDalfsen, Christopher H. Goss, David J. Horne, Erin K. Kross, Peter J. Leary, Kathleen J. Ramos, Patricia Roush, Jack C. Salerno, Gregory Omlor, Deborah Ouellette, Deanna Green, Kathy Hosler, Adrienne Savant, Zainub Ashrafi, Ariel Berlinski, Andrea Ross, Gregory Sawicki, Robert Fowler, Monica Ulles, Freda Branch, Kevin Kirchner, Kerry DiBenardo, Gwendolyn Kerby, Meg Anthony, Thomas Keens, Alejandra Franquez, Carmen Reyes, Ibrahim Abdulhamid, Catherine Van Wagnen, Elizabeth Hartigan, Carley Mihlo, Ronald Williams, Margaret Lessard, Laura Sass, Erin McAndrews, Jennifer Parrott, Julie Noe, Patricia Hastings, Theresa Kump, John Clancy, Stacey Niehaus, Juyan Zhou, Gary Mueller, Sandy Bartosik, Jason Fullmer, Colleen Millian, Arlene Stecenko, Joy Dangerfield, Gavin Graff, Diane Kitch, Carrie Milliard, Robert Zanni, Bridget Marra, Patsy Guittar, Melinda Smith, David Schaeffer, Elizabeth DeLuca, John Welter, Meighan Gallagher, Armando Ramirez, Alexandra Cornell, Erika Simeon, Dion Roberts, Katherine Nelson, James Chmiel, Cindy Schaefer, Lori Shively, James Wallace, Allisa Richter, Bonnie Ramsey, Jessica Pittman, Tina Hicks, Dixie Durham, Carlos Milla, Jacquelyn Zirbes, Christopher Fortner, Valoree Suttmore, Rose Thompson, Cori Daines, Monica Varela, Timothy Starner, Mary Teresi, Samya Nasr, Dawn Kruse, Heather Thomas, Lisa Houdesheldt, Carol Barlow, Rose Cunnion, Saumini Srinivasan, Catherine Horobetz, Fadi Asfour, Jessica Francis, Michael Rock, Linda Makholm, Marie Egan, Catalina Guzman

Publikováno v: American Journal of Respiratory and Critical Care Medicine

Rationale: New isolation of Pseudomonas aeruginosa (Pa) is generally treated with inhaled antipseudomonal antibiotics such as tobramycin inhalation solution (TIS). A therapeutic approach that complements traditional antimicrobial therapy by reducing

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::2e8de38deedbb09db05717ce5b591a87
https://doi.org/10.1164/rccm.201802-0215oc

Defining Patient Advocacy for the Context of Clinical Ethics Consultation: A Review of the Literature and Recommendations for Consultants

Autor: Tracy Brazg, Taryn Lindhorst, Denise Dudzinski, Benjamin Wilfond

Publikováno v: The Journal of clinical ethics. 27(2)

The idea of patient advocacy as a function of clinical ethics consultation (CEC) has been debated in the bioethics literature. In particular, opinion is divided as to whether patient advocacy inherently is in conflict with the other duties of the eth

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::a4213e2bd2b1e000cb0fea8f3741db9a
https://pubmed.ncbi.nlm.nih.gov/27333067