Principles and practices of returning individual research results to participants in large studies of pregnancy and childhood.
Investigators conducting human subject research have typically conveyed only clinically actionable results back to individual participants. Shifting scientific culture around viewing participants as partners in research, however, is prompting investigators to consider returning as much data or resul...
| Publicado en: | American Journal of Epidemiology Vol. 194; no. 3; pp. 830 - 837 |
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| Autores principales: | , , , , , , , , , , |
| Formato: | tables/charts Journal Article |
| Publicado: |
Oxford University Press / USA
Mar2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=184351208&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 184351208 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 00029262 1X1 jtl: American Journal of Epidemiology issn: 00029262 maglogo: N pubinfo: dt: Mar2025 vid: 194 iid: 3 pid: 622 pub: Oxford University Press / USA artinfo: ui: 184351208 184351208 184351208 10.1093/aje/kwae228 184351208 ppf: 830 ppct: 7 formats: tig: atl: Principles and practices of returning individual research results to participants in large studies of pregnancy and childhood. aug: au: Mash, Clay McAllister, Kimberly A Wonnum, Sundania Vargas, Ashley J Dowling, Gaya Arteaga, S Sonia Blaisdell, Carol J Hardy, Kristina K Das, Irene Prabhu Raju, Tonse N K Gillman, Matthew W affil: Environmental influences on Child Health Outcomes (ECHO) Program, Office of the Director, National Institutes of Health, North Bethesda, MD 20852, United States sug: subj: Research, Medical Research Subjects National Institutes of Health (U.S.) Pediatric Care Obstetric Care Seminars and Workshops Child Health Maternal-Child Health Adolescent Health ab: Investigators conducting human subject research have typically conveyed only clinically actionable results back to individual participants. Shifting scientific culture around viewing participants as partners in research, however, is prompting investigators to consider returning as much data or results as the participant would like, even if they are not clearly actionable. Expanding return of individual results may add value for individual participants and their communities, refine future research questions and methods, build trust, and enhance retention of participants. Yet, gaps remain in understanding the implications of these changes for groups of "vulnerable" participants, including pregnant and pediatric participants. Here we present the findings of a National Institutes of Health workshop on returning individual research results, particularly as applicable to pregnant and pediatric participants. Research participants who were panelists at the workshop agreed that they desired to receive their results. Workshop findings and current literature indicate that participants have differing preferences for what results they receive. One way to address the limits of current practice is to develop flexible digital platforms that convey individual results along with researchers' availability to answer questions, and to provide as much information as possible about actionable steps for controlling environmental exposures associated with disease risk. pubtype: Academic Journal doctype: tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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