Using Patient Perspectives to Analyze the Ethical Implications of Identity during Deep Brain Stimulation for Treatment Resistant Depression Open Access

Fong, Kristina (Summer 2019)

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Deep brain stimulation (DBS) has emerged as a potential therapy for individuals with treatment resistant depression (TRD). However, its use has been ethically controversial, with concern about the potential harm that it may have over its potential benefits. One such concern at the forefront of debates is its impact to concepts of identity. Many scholars have responded to the ethical concerns surrounding DBS for depression, though there are few of these studies that are supported by empirical evidence, especially as they relate to identity. This project has the means to collect this empirical evidence that is scarcely found in ethics literature. As such, this thesis will investigate how patient experiences with DBS for depression affect notions of identity, and how these might influence decisions to become involved with this experimental therapy. Five themes emerged from the analysis of patient perspectives: well-unwell distinction, control, narrative, relationship to others, and perception. These themes provide insight into the relationship between identity, DBS, and depression and assist in promoting a framework of identity to adequately respond to current ethics discussions regarding DBS for depression research.

Table of Contents

Introduction                                                                                                                 1

           Aims, Objectives, and Research Questions                                                 2

Section 1                                                                                                                                                   

Background                                                                                                                    4

           What is Major Depressive Disorder?                                                              4

Treatment resistant depression and a new potential therapy                              6

           What is Deep Brain Stimulation?                                                                      7

Literature Review                                                                                                             9

           What is identity?                                                                                                    9

           Ethical Considerations in Deep Brain Stimulation                                         21

           Ethical Considerations of DBS for Depression                                                33

Section 2                                                                                                                                            

Research Design and Methods                                                                                       39

Themes                                                                                                                                46

           Well-Unwell Distinction                                                                                        46

           Control                                                                                                                       50

           Development of Narrative                                                                                      56

           Relationship to Others                                                                                             61

           Perception                                                                                                                        64

Discussion                                                                                                                                   69

           Potential Themes                                                                                                            69

                       Informed Consent                                                                                               69

                       Enhancement                                                                                                        71

                       Identifying with the Device                                                                                 72

           Limitations                                                                                                                       73

Conclusion                                                                                                                                   76

References                                                                                                                                   78

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