Degree Date

9-2023

Document Type

Dissertation - Public Access

Degree Name

Psy.D. Doctor of Clinical Psychology

Academic Discipline

Clinical Psychology - Florida School of Professional Psychology

First Advisor

Kathie Bates, Ph.D.

Second Advisor

Elizabeth Lane, Ph.D.

Abstract

Two of this century’s most significant healthcare challenges are Alzheimer’s disease and mild cognitive impairment, with 40 million people suffering from the diseases. In fact, a conservative estimate projects that both conditions will double every 20 years until 2050. Alzheimer’s disease involves memory impairment, disorientation, confusion, and various problematic behaviors. Presently, no prevention method or cure has been discovered for Alzheimer’s. Mild cognitive impairment typically includes problems with memory, language, thinking, and judgment beyond those typical of one’s age. Usually, these symptoms do not interfere with daily activities but do not improve and have been linked with a risk of developing Alzheimer’s as time goes on. As research in this area has evolved, genetic biomarkers have been discovered that determine the potential risk of Alzheimer’s disease. While there are no guarantees that individuals will develop Alzheimer’s, they can increase the likelihood of disease onset. Despite the potential for life changes and behaviors that could reduce disease risk, most health professionals are unwilling to disclose these biomarkers to their patients. Clinicians’ perceived risk and biases in believing that disclosing this biomarker will harm patients can result in patients receiving limited health information in this area. However, the debate surrounding this disclosure as harmful to patients should be informed by objective outcomes, rather than only perceived harm. This literature review examines the objective outcomes of genetic risk disclosure and ethical guidelines relevant to any disclosure(s).

Comments

This work has been ongoing for some time and would not have been possible without the support of National Louis University faculty. I am also especially indebted to my current advisor, Dr. Christina Brown, who has been supportive of my career goals, actively working to provide me with the essential professional guidance needed in the face of adversity. The faculty at National Louis University has been a bright light in the face of my previous school closure at Argosy University in Phoenix, Arizona. I am grateful to all those with whom I have had the pleasure to work during this and other related projects. Each member of my Clinical Research Project Committee has provided extensive personal and professional guidance and taught me a great deal about research and life. I especially thank Drs. Kathie Bates and Elizabeth Lane, the chairman and co-chairman of my committee. As my teachers and mentors, they have taught me more than I could ever credit them for here. I also thank Dr. Marwan Sabbagh, Neurologist at Barrow Neurological Institute in Phoenix, Arizona, who provided me with an amazing experience for three years while working on his research team as the primary rater on over 20 clinical research trials for Alzheimer’s disease. This research and clinical experience provided me with the professional insight needed to explore the debate surrounding ApoE patient disclosures in depth. Finally, and most importantly, nobody has been more important to me in pursuing this project than my family members. I thank my parents who have supported me throughout this journey and my two amazing children, Brittney and Ryan, who have provided unending inspiration and will always be my best work on this earth.

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