Defense Date

2-12-2019

Graduation Date

Spring 5-10-2019

Availability

One-year Embargo

Submission Type

dissertation

Degree Name

PhD

Department

Health Care Ethics

School

McAnulty College and Graduate School of Liberal Arts

Committee Chair

Henk ten Have

Committee Member

Gerard Magill

Committee Member

Joris Gielen

Committee Member

James Swindal

Committee Member

Joris Gielen

Keywords

Precision Medicine, ELSI, Ethical and Social Implications, Genomics, Genetics, Global health genomics, Public health Genomics, Ethics

Abstract

Ever since President Obama's launch of the Precision Medicine Initiative (PMI) in 2015, precision medicine (PM) has been anticipated as the new paradigm for healthcare with the capacity to “empower patients, researchers, and providers to work together toward the development of individualized care,” through research, technologies, and policies (President Obama, 2015). Precision Medicine (PM), in the form of genomics, offers unprecedented promise of providing new tools for improving health and reducing the burden of diseases, not just for the U.S. - but also globally. According to World Health Organization, genomics research and precision medicine will play a major part in the prevention, diagnosis and management of many difficult or impossible to control diseases. Genomics research is progressing at an extraordinary speed and soon the application will be important for clinical application to benefit healthcare, in the U.S. and globally. In order for PM to be implemented in the everyday primary care setting, many considerable ethical and social implications of PM for families, researchers and policymakers need to be addressed, that will ensure the protection and fair treatment of patients and participants. The medical impact of PM will be less than revolutionary if proper implementation and translation processes are not in place, taking into consideration the social and ethical implications, and addressing the challenges involving public trust and participation, and adequately preparing the healthcare workforce to administer or give advice on the applications of PM. Recent studies that compare trends in the genetic curricula in the US and Canadian medical schools have identified that there is a need for health provider education and competency rich in genomics and ethics. Despite the barriers, it is evident that the precision medicine initiative is at the forefront of clinical practice and will impact the quality, safety, and cost of healthcare.

The primary focus of this dissertation is to analyze the clinical significance and social and ethical implications of PM in healthcare in order to critically explore how PM can be ethically implemented in the time of genomics and personalized medicine.

The dissertation is elaborated in nine chapters, with Chapter One being the introduction. Chapter two will give an overview of PM as the new paradigm of healthcare. Chapter three will focus into genomics and pharmacogenomics and PM’s clinical significance. Chapter four will look at the relevance of PM in infectious and non-communicable diseases, while Chapter five will look at the relevance of PM in Public Health Genomics and Global Health Genomics. Chapter Six will elaborately focus on the social and ethical implications of integrating Precision Medicine into healthcare. Chapter Seven will expand into laying the ethical foundation for the implementation of PM in healthcare organizations by looking at the organizational ethical issues that may arise, and how healthcare organizations can prepare themselves to address these challenges. Chapter Eight will look at the competency of healthcare workforce in the era of PM. Lastly, Chapter Nine will present the concluding thoughts.

Language

English

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