Meanings Surrounding Genetics Nurses' Lived Experience Relating to Encountered Ethical Concerns

Date of Award


Degree Type


Degree Name

Doctor of Philosophy (PhD)



First Advisor

Sherry Hartman

Advisor Department



Information obtained from the Human Genome Project (HGP) will provide health care providers with the possibility of improved prevention detection, and innovative treatment for patients with genetic disorders. Genetics nurses are the most likely health care professionals to interface with the majority of patients and their families at all levels at some point in the provision of genetic health care. It is imperative that as the knowledge of genetics technology grows that our ethical understanding continues to evolve in order to meet the needs of the patients. Understanding what it means to be a genetics nurse as it related to encountered ethical concerns is a significant missing piece in the nursing literature. The purpose of this research study was to examine and describe the meaning of the lived experience of the genetics nurse as it relates to encountered ethical concerns. This study used Munhall's and van Manen's methodological perspectives to explore meanings surrounding genetics nurses experience. A modified version of ISONG's definition of genetics nursing was used to guide sample selection. For purposes of the study genetics nursing was defined as: nursing care that focuses on providing care to patients and their families, who have known genetic conditions/ and or birth defects, or who are at risk to develop them. Participants for the research study were obtained using both purposeful and snowball sampling techniques. Initially, purposeful sampling was used to obtain the participants for the study. Five face to face interviews and three phone interviews were conducted. The interviews lasted from 1 to 2 hours. Six follow-up phone interviews were conducted for clarification purposes lasting 5 to 10 minutes each. Data analysis began with the first interview. Each recorded interview was transcribed verbatim and analyzed using van Manen's thematic analysis techniques. Data analysis revealed seven interwoven themes and two sub themes: (a) not your ordinary nurse-patient relationship, sub themes of this theme were, unique bond and caring for (b) shared pain and suffering, (c) my job is to educate, empower and equip, (d) it's not my decision, (e) fight for the patient, (f) the anger surrounding misinformation, and (g) the complexity and conflicts of maintaining confidentiality. Understanding the ethical nature of caring for the patient with a genetic disorder will benefit the genetics nurse by increasing the ethical knowledge related to caring for a patient with a genetic disorder. This new knowledge will improve patient care. In understanding the meaning of the encountered ethical concerns genetics nurses will better understand what values and beliefs they bring to the ethical decision making process, and what ethical issues they are likely to encounter. The ethical knowledge and meaning gained from this research study will benefit both the genetics nurse and the generalist nurse.