Literature DB >> 36092452

Engagement, Exploitation, and Human Intracranial Electrophysiology Research.

Michelle T Pham1, Nader Pouratian2, Ashley Feinsinger3.   

Abstract

Motivated by exploitation concerns, we argue for the importance of participant engagement in basic human intracranial electrophysiology research. This research takes advantage of unique neurosurgical opportunities to better understand complex systems of the human brain, but it also exposes participants to additional risks without immediate therapeutic intent. We argue that understanding participant values and incorporating their perspectives into the research process may (i) help determine whether and to what extent research practices and the resulting distributions of risks and benefits constitute exploitation and (ii) contribute to building a brain research paradigm that is genuinely responsive to participant values. More broadly, we highlight the importance of paying attention to participant interests in non-therapeutic brain research.

Entities:  

Keywords:  Engagement; Exploitation; Human intracranial; Neuroethics; electrophysiology research

Year:  2022        PMID: 36092452      PMCID: PMC9451055          DOI: 10.1007/s12152-022-09502-1

Source DB:  PubMed          Journal:  Neuroethics        ISSN: 1874-5490            Impact factor:   1.427


  36 in total

1.  What makes clinical research ethical?

Authors:  E J Emanuel; D Wendler; C Grady
Journal:  JAMA       Date:  2000 May 24-31       Impact factor: 56.272

2.  Altruistic discourse and therapeutic misconception in research informed consent.

Authors:  Steven Joffe
Journal:  Am J Bioeth       Date:  2006 Sep-Oct       Impact factor: 11.229

Review 3.  Transforming genetic research practices with marginalized communities: a case for responsive justice.

Authors:  Sara Goering; Suzanne Holland; Kelly Fryer-Edwards
Journal:  Hastings Cent Rep       Date:  2008 Mar-Apr       Impact factor: 2.683

4.  Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute.

Authors:  Laura P Forsythe; Kristin L Carman; Victoria Szydlowski; Lauren Fayish; Laurie Davidson; David H Hickam; Courtney Hall; Geeta Bhat; Denese Neu; Lisa Stewart; Maggie Jalowsky; Naomi Aronson; Chinenye Ursla Anyanwu
Journal:  Health Aff (Millwood)       Date:  2019-03       Impact factor: 6.301

5.  Safety and Utility of Hybrid Depth Electrodes for Seizure Localization and Single-Unit Neuronal Recording.

Authors:  April A Carlson; Ueli Rutishauser; Adam N Mamelak
Journal:  Stereotact Funct Neurosurg       Date:  2018-10-16       Impact factor: 1.875

6.  Analysis of Morbidity and Outcomes Associated With Use of Subdural Grids vs Stereoelectroencephalography in Patients With Intractable Epilepsy.

Authors:  Nitin Tandon; Brian A Tong; Elliott R Friedman; Jessica A Johnson; Gretchen Von Allmen; Melissa S Thomas; Omotola A Hope; Giridhar P Kalamangalam; Jeremy D Slater; Stephen A Thompson
Journal:  JAMA Neurol       Date:  2019-06-01       Impact factor: 18.302

7.  Patient and family engagement: a framework for understanding the elements and developing interventions and policies.

Authors:  Kristin L Carman; Pam Dardess; Maureen Maurer; Shoshanna Sofaer; Karen Adams; Christine Bechtel; Jennifer Sweeney
Journal:  Health Aff (Millwood)       Date:  2013-02       Impact factor: 6.301

Review 8.  Neurosurgical Patients as Human Research Subjects: Ethical Considerations in Intracranial Electrophysiology Research.

Authors:  Winston Chiong; Matthew K Leonard; Edward F Chang
Journal:  Neurosurgery       Date:  2018-07-01       Impact factor: 4.654

9.  What constitutes meaningful engagement for patients and families as partners on research teams?

Authors:  Agnes Black; Kimberly Strain; Christine Wallsworth; Sara-Grey Charlton; Wilma Chang; Kate McNamee; Clayon Hamilton
Journal:  J Health Serv Res Policy       Date:  2018-03-04

10.  What is it like to use a BCI? - insights from an interview study with brain-computer interface users.

Authors:  Johannes Kögel; Ralf J Jox; Orsolya Friedrich
Journal:  BMC Med Ethics       Date:  2020-01-06       Impact factor: 2.652

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