I have a dream that only you as a nurse can help fulfill. The dream is that individuals and their families receive the best healthcare possible. That they can ask their nurse about cutting-edge options of care and get knowledgeable answers. That as they make their journey along the healthcare continuum (from birth to death) they encounter nurses who are able to recognize and provide information that will help them make informed decisions. You may think that you are already providing that kind of care and information. If you have begun to incorporate genetic and genomic-research advances and information into your professional responsibilities, then I say congratulations, and thank you for helping me make this dream a reality. If not, or if you are unsure of what I am talking about, then I encourage you to read the articles in this OJIN Genetics and Genomics topic to learn more about your responsibilities in helping your patients access healthcare that meets their needs.
If you were the one experiencing the personal ramifications of an illness, wouldn’t you want to be able to access those clinical care services that integrate up-to-date discoveries today? If we were already doing the best we could - to predict those at risk for illness, to help prevent health problems, and to promote healthy responses - then research regarding the genetic contributions to health and illness would be unnecessary. Unfortunately, that is not the case. That’s one of the reasons I encourage you to join me in this struggle to make this dream a reality for patients and their families. The pathway may appear fuzzy, but let’s put some clarity to it by examining some of influencing factors. Think of it as a large wheel with multiple spokes all working together to gain momentum rolling towards improved healthcare outcomes for all.
Organizations We Work With
Many professional nursing organizations have begun to recognize the importance of their members’ awareness of genetics and genomics information. Forty-nine such organizations have endorsed the Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics and have begun to implement initiatives. Read the article by Badzek et al. to learn more about the American Nurses Association’s efforts to partner with others to prepare the practicing nurse to be able to offer care that integrates emerging genetic and genomic information and technology into clinical care.
Organizations We Work In
It takes time and effort to change traditional healthcare systems. The Prows article provides a view of the value of application of the nurse’s perspective in designing service delivery models that promote the safe, efficient, and effective utilization of genetic/genomic information in care decisions, such as pharmacogenomic genotype testing. Recognition by organizational leadership of the value of genomic services is necessary to the design of systems and resources that integrate new technology, such as point-of-care genetic testing.
Our Patients and Their Families
The discoveries learned today have implications for the types of options available for care of patients with rare genetic diseases, for example, lysosomal storage diseases (LSDs) and those with genomic contributions to chronic disease risks and illness. Read the article by Bailey to learn more about a therapeutic intervention available for patients with an LSD today. This example of individualized care illustrates the importance of knowing more about the burden and benefits of requiring a lifetime of treatment. Research by nurses caring for such patients will provide insights into the stressors, costs, effectiveness, and other outcomes of interventions currently available for this group of genetic diseases. Learning from their experiences will enlighten us about some of the issues those receiving genomic-based healthcare will soon face.
Advances that require clinical translation into genetic and genomic healthcare require consideration of ethical ramifications for individuals, their family, and society. The article by Lea discusses current and emerging ethical issues encountered throughout the life continuum and around the world. Nurses are important advocates for the development of policy to address several of these issues. An understanding of the ethical challenges encountered by those receiving genetic and genomic-based health care is an essential competency for all nurses.
The more we learn about genetic variation within populations, the greater the potential for tailoring of care that incorporates a cultural assessment. For example, recognizing populations at highest risk for diabetes can help target interventions. However, this potential also increases the possibility for discrimination against certain populations. It is important that nurses recognize the value of utilizing such sensitive information to improve care. However, as noted by Paniagua and Taylor, research with regards to the cultural perspective on utilization of genomic information and services is scarce. Nursing research as to the implications of ethno-cultural beliefs and practices for utilization of genomic-based care within our diverse populations is an integral component to assuring appropriate utilization of genomic-based healthcare.
None of these factors can be viewed in isolation of each other. However, you are the center of all these spokes of the wheel! You interact with each of these components both personally and professionally. But you can only make a difference if, as Maradiegue mentions in her article, you “embrace genetics.” This final article in OJIN’s topic on Genetics and Genomics discusses how you can learn and teach genetics. Identification of valuable resources presented by Maradiegue can arm you with crucial information. Then you can join me in making this dream a reality by assuring competency within our nursing profession: with the incorporation of genetic and genomic knowledge and skills enable yourself and others to assess, identify, refer, and provide education, care, and support to all individuals and their families interested in receiving the best care possible.
I know this may only be my dream…. “You see things; and you say, 'Why?' But I dream things that never were; and I say, ‘Why not?’” (Shaw, 1921). I hope you will become excited about the possibilities and join me in helping make my dream a reality.
Jean F. Jenkins, PhD, RN
© 2008 OJIN: The Online Journal of Issues in Nursing
Article Published January 31, 2008
Shaw, G. B. (1921). Back to Methuselah, part 1, act 1. Retrieved January 4, 2008 from www.quotationspage.com/quotes/Geaorge_Bernard_Shaw/31