Genetic Testing Puts Nurses at Frontline of Answering Patients’ Emerging Concerns

Genetic testing and new gene therapies may raise new questions for patients, and as front-line health workers, nurses could be the ones answering questions about how they related to health.

The issue is at the forefront as direct-to-consumer companies offering genetic testing grow and as new treatments, such as the first gene therapy available in the United States for acute lymphoblastic leukemia that was approved at the end of August, become available.

“Especially at a research institution such as UCSF, patients are going to come in and ask what does it all mean,” said UC San Francisco Assistant Professor of Physiological Nursing Elena Flowers, PhD, RN.

The questions, Flowers said, will include if the latest technologies could help patients and what such information says about their future health.

To help nurses address inquiries from the burgeoning industry, the UCSF School of Nursing is now offering a course surveying the impact of genomics – the interplay of all a person’s genes – and the modern genomic technologies on health care.

Giving an Overview of New Technology

The curriculum, developed by Flowers, focuses on the practical outcomes of genomics advances and aims to make the complicated and sometimes controversial technologies pertinent to current nursing practice.

“Genomic technologies have changed so much so fast,” she said. “It is overwhelming. It’s also unrealistic for our students to try to keep up with all of it on top of other changes in technology in health care.”

To help provide answers about the technology and testing that is available for patients, Flowers designed the course to give a broad overview of genetic concepts without getting bogged down in the details of molecular biology. The idea is that nurses don’t all need to be experts in every aspect of genomics, but they should understand the relevant issues in their particular specialty and feel empowered to find the resources they need for their patients.

The focus of the course is on the critical role nurses play in obtaining a thorough family history that will uncover hereditary influences in diseases, and in being able to communicate the implications of technologies to patients.

“I don’t think it’s widely recognized how many ways that we as nurses use genetic information in practice,” said Sandra Weiss, PhD, RN, FAAN, the Interim Dean of the School of Nursing.

Two main ways genetics is used by nurses are to help patients interpret tests and by incorporating information into care plans. For example, if a patient is identified with a genetic predisposition for high cholesterol, that information allows nurses to design approaches to help the patient avoid developing high cholesterol and the illnesses associated with it.

“That genetic knowledge prompts the nurse to say ‘we need to start preventing problems now’ and not wait until symptoms appear,” said Weiss, who is the Robert C. and Delphine Wentland Eschbach Chair in Mental Health.

Specific and Larger Questions

Through the new curriculum, Flowers is looking to give insights into specific questions and larger topics. Course topics include genetic factors in drug reactions, CRISPR/cas9 genome editing technology, the Precision Medicine Initiative and the role of big data in genomics.

More personal to Flowers is the topic of direct-to-consumer genetic testing. In the interest of being able to speak authoritatively on the topic, she had her entire genome sequenced. The results she received are far beyond what is offered by companies such as 23andMe, which earlier this year received approval the Food and Drug Administration to report directly to consumers on 10 diseases or conditions. She posted about her experience in a series of blog posts.

Aside from the specifics around testing, the kinds of things Flowers wants her students to be thinking about include how much people think they want to know about their genetic predispositions versus how they will feel after the fact. There are also questions such as how patients can be properly informed to obtain their consent for sequencing.

“We really need to start thinking about these technologies in terms of ethical, social and legal issues,” she said.

Overall, the course, which is fully online so it can be flexible for all nursing students, is to prepare the health care workers for the questions that are bound to face them in the clinical setting.

“Nurses often have more time with the patients compared with other providers, so there is time to discuss pros and cons, making it that much more critical that nurses are prepared,” said Flowers. “I don’t want nurses to be completely blindsided by the patient who comes in with questions.”