By Diana J. Mason, PhD, RN, editor-in-chief emeritus. Mason often writes for this blog about policy and research issues.
Last week, I attended the annual conference of CANS, the Council for the Advancement of Nursing Science, the “research-facilitation arm” of the American Academy of Nursing. The title of the conference was “Technology, Genetics and Beyond: Research Methodologies of the Future.”
‘Genomics’ vs. ‘genetics.’ I’m not a genomics researcher but I found the sessions enlightening in two ways. First, I admit to struggling with the terminology (and jargon) of the field. I was reminded today that the correct term for the field is “genomics,” since “genetics” refers to the study of single genes and thus limits the focus of study mostly to rare diseases. Genomics looks at associations among genes in the whole person—a shift in perspective that was enabled by the mapping of the human genome.
Targeted interventions. The second enlightenment came from keynote speaker and senior nurse researcher Christine Miaskowski, a dean and a professor of physiological nursing at the University of California at San Francisco School of Nursing. She noted that this shift to a focus on the whole person is what makes nurses and nursing research essential to the field. She gave an example from her own research looking at fatigue among people with cancer. When all patients are grouped together, it looks as if there is little variation across time. But when you diagram each patient’s changes in levels of fatigue, there is actually huge variation. By looking at the genetic composition of individual patients, she’s been able to determine who might respond best to a specific intervention that appears to have no effect when all patients are considered together. Such close examination of patient characteristics can help nurses and other health care providers to better tailor their interventions for the individual patient.
Ethical issues in research. That said, Suzanne Feetham, a nurse who has been a leader in advancing health care professionals’ understanding of genetics and genomics, talked about the ethical issues involved in conducting such research. All researchers must take care to protect the confidentiality and anonymity of their subjects or participants, making sure that their approach is approved by an Institutional Review Board—but with genomic research, the individual’s information is also information about the family. Does the family need to provide permission for participation? Whose information is it, anyway?
In addition, there are ethical issues surrounding the availability of subject data. The human genome map is in the public domain and the NIH (National Institutes of Health) now requires that researchers funded at levels above $500,000 make their data available to other researchers. All well and good, but if the genomic information a researcher has on someone actually can identify the person, what happens to the concept of protecting the confidentiality of subject data? Feetham noted that, with the public rightfully concerned about discrimination by employers and insurers on the basis of their genomic information, we must have crucial conversations about the ethical issues surrounding genomics and genomic research.
‘Point-of-living’ research. One of the most fascinating presentations on the use of technology in research was by Patricia Brennan, a professor in the School of Nursing and College of Engineering at the University of Wisconsin-Madison. She talked about “point of living” research with children with cystic fibrosis. How do you study interventions in a valid and reliable way when they are designed to take place in the home over time? She showed a vest that is being designed for the child to wear during chest therapy. The vest measures the effectiveness of the chest therapy and indicates to the family member doing the therapy where the most lung secretions are, among other things.
Underfunded, undervalued. I left this meeting wishing that policy makers, boards of health care organizations and major corporations, and the general public could see the fine work and thinking that some of our leading nurse researchers are doing. Patricia Grady, director of the National Institute for Nursing Research, reported on the state of that institute in relation to the NIH. She noted that funding for NINR parallels that for NIH, albeit at a fraction of the total amount. What she can’t say, but I and others will, is that it has demonstrated the importance and quality of its nursing research since it was started as a small center in the 1980s, one that evolved into an underfunded institute.
Isn’t it time for us to dramatically increase NINR’s proportion of the total NIH funding in order to support the growing cadre of nurse researchers who are studying issues that can improve people’s health and the quality of their care from birth through dying?