alec stone
Alec Stone MA, MPA, ONS Public Affairs Director

Further understanding of the human genome and the proliferation of genetic data has spurred significant advancement in the understanding of the way cancer impacts individuals. To share the crucial work in genetics, the National Institutes of Health (NIH), led by the National Institute for Cancer (NCI), has compiled survivor stories from patients who have benefited from cutting-edge genomic technology. Their stories illustrate and contribute to the ongoing successes brought on by NIH’s genomic efforts.

After losing his vision in his sophomore year of college, Jace Ward was diagnosed with diffuse intrinsic pontine glioma, a cancer usually found in children. Ward’s treatment trajectory changed once he underwent surgery and doctors sent his tumor for genetic testing and sequencing. Discovering the H3 K27M gene mutation, Ward’s healthcare team explored new treatment options. NCI researchers, testing a new targeted therapy called ONC201 for patients with Ward’s mutation, connected him with the treatment and changed Ward’s outcomes.

Although Ward is doing well now, the process to understand his genetic information and connect him with the appropriate treatment was rigorous and daunting. Dubbed precision medicine, Ward’s treatment path is growing more common and has become a central focus for NIH. The plan is to target patients with cancer with the exact medications and treatments that fit their individual need, including their genetic mutations.

However, concerns about privacy and shared decision making have grown with further genetic testing and data sharing. NIH acknowledged the potential risks that patients take when having their tumors sequenced and shared in a large database for other providers. But most patients say that the benefits outweigh the risks.

As Ward’s mother commented on the NIH blog, “The concern for us—and for the parents of most children with rare diseases—is that our children are dying. Why should we be less worried about kids dying than we are about the potential risks of sharing genomic data?”

Nurses must understand the impact of genetics and genomics in cancer care and the implications for nursing practice. A solid foundation is understanding the difference between genetics and genomics and why nurses must embrace genetics in oncology practice. As patient educators, nurses can inform patients, help them participate in the conversation, and understand the risks and benefits involved in genetic testing.