The growing role of genetic nurses: educating, empowering patients

Individualized Medicine

The growing role of genetic nurses: educating, empowering patients

By
Joel Streed

December 31, 2018

As genetic sequencing has become faster and cheaper, more people are considering predictive genetic testing to identify their future risk for disease, with the goal of taking charge of their health. Yet many face the challenge of understanding which genetic testing option would fit their health goals.

While genetic counselors have traditionally helped patients through this journey, there is a shortage of these professionals as genomics moves into more areas of clinical care.

That’s where Therese Hughes and Corinne Berg, genetic nurses in Mayo Clinic Center for Individualized Medicine, step in, working with genetic counselors to educate and empower patients. Hughes and Berg are part of the care team for healthy patients in the Executive Health Program who are considering predictive genomic testing.

“Over the last three years, we’ve added nurses to our team, developing a unique care model where they work together with genetic counselors to extend genomics education, and genetic testing when appropriate, to more patients. We’ve also shared our successful model with other institutions and professional organizations across the country,” says Teresa Kruisselbrink, genetic counselor and supervisor of genetic nurses in the Center.

Family trees – revealing clues about future health risks

As a first step in each appointment, Hughes and Berg map a patient’s family medical history.

“We’re looking for any clues that there may be a history of a medical condition that has a hereditary or genetic component – such as certain types of cancer, heart disease or neurological disorders, especially those experienced by family members before the age of 50. For example, if a family member died suddenly, it can be a sign of a hereditary heart disease or an increased risk for stroke," says Hughes.

The nurses record medical histories for three or more generations of a patient’s family – that can include grandparents, parents, siblings and children.

Berg is inspired by her own personal story, which highlights the lifesaving information a family medical history can reveal.

“My aunt died at a young age from breast cancer. After learning about hereditary cancers in nursing school, I was tested and discovered I had the BRCA2 gene, which increases my risk for breast, ovarian and pancreatic cancer as well as melanoma. It turns out my mother and sister have the same gene. We all had mastectomies to prevent cancer from developing. My mother’s surgery revealed that she had an early stage breast cancer. Discovering I had the BRCA2 gene actually saved her life,” says Berg.

All three women continue to have regular cancer screening. “Knowing our family history and having genetic testing has enabled us to take charge of our health,” adds Berg.

Genetics 101 and testing options

Next, Hughes and Berg educate patients about the basics of genetics with materials they developed with staff in the Centers’ Education Program.

Patients learn about:

How genetic traits are passed down from one generation to the next
Genetic test options available, which range from genetic testing focused on genes known to have a link to disease risk to more comprehensive testing that assess a broader number of genetic characteristics

“We’re continually looking for ways to bridge the knowledge gap for patients. For example, we discovered that many male patients are unaware that BRCA1 or BRCA2 mutations could affect their own health or that of their family members. So we’ve developed materials to provide that information,” says Berg.

Spreading the word – educating nurses at the bedside about genomics

According to Hughes, the role of genetic nurses is likely to increase as genomics moves into more areas of health care. She and Berg attend monthly nursing practice meetings, spreading the word about the role of genomics in health and disease.

“By presenting and participating in these monthly meetings, we hope to inform nurses so they can understand the role genomics may play in their patients' care. For example, nurses may be able to recognize when a patient has a family medical history or condition that warrants a consultation with a genetic counselor,” says Hughes.

The education will also help nurses understand pharmacogenomics information – how a person’s genetics may affect their response to medications. Mayo is at the forefront of moving this information into clinical practice.

“Pharmacogenomics data is being added to the electronic medical records of 10,000 Mayo patients participating in the RIGHT 10K study. Providers will receive an alert when prescribing a medication in which a patient’s genetics could cause serious side effects or require a dose adjustment. It is critical that both physicians and nurses carrying for these patients understand how pharmacogenomics can enhance individualized care,” explains Hughes.

To keep pace with the growing need for genetic nurses, both Berg and Hughes are pursuing additional training. Berg is earning a master’s in nursing education, and Hughes plans to become a nurse practitioner.

“We hope to play an even bigger role in guiding patients through their genomics journey,” explain Berg and Hughes.

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