Working on ‘the human side’ of heritable cancers

“I love working with people,” says Allison Werner-Lin of the School of Social Policy & Practice (SP2). Werner-Lin’s office overlooking Locust Walk is homey and lamp-lit, with student gifts sharing space with scholarly tomes. This is just one of her workspaces, however. Recently returned from sabbatical, Werner-Lin has been working with the National Cancer Institute (NCI), as well as out of her home in upstate New York, which doubles as a private practice for families seeking bereavement therapy. The divide between academia and clinical practice suits her. “I feel like I have one foot in each world and in a very positive way,” Werner-Lin says. 

Werner-Lin has extensive clinical and research experience and uses both to inform her work, which centers on heritable cancers. She began her academic work studying young adults with mutations in genes associated with breast and ovarian cancer, BRCA1 and BRCA2. Recently, her work with the NCI has branched out to the study of Li-Fraumeni syndrome (LFS). Patients with LFS have a mutation in a tumor-suppression gene, resulting in a high incidence of cancer starting in childhood, and 50% of LFS patients develop cancer by age 40. Both patient populations make life-altering decisions based upon their family histories and medical diagnoses.   

“Dr. Werner-Lin’s groundbreaking research merges science with social work at the intersection of qualitative health research, the structure and evolution of genes, hereditary cancer, and how it impacts individuals and families at various stages of life,” says SP2 Dean Sara “Sally” Bachman. “Each day, Allison is pushing the frontiers of genomic study and oncological social work while also mentoring other social change agents who will undoubtedly make a difference locally, nationally, and internationally.”

For more than a decade, Werner-Lin has worked in the Clinical Genetics Branch of the Division of Cancer Epidemiology and Genetics of the NCI organizing “the human side” of research. Patients come annually to the NCI to receive full-body MRI cancer screenings and participate in data collection that covers everything from cancer history to family communication to risk management. Werner-Lin mentors an interdisciplinary team of predoctoral and postdoctoral fellows to explore how these families understand and cope with genetic information. Her work is used to train providers in delivering holistic medical and psychological care.

“We talk with families about their experiences communicating cancer-risk information with loved ones, making reproductive decisions, and managing the endless cycle of screening,” Werner-Lin says. She has seen patterns in how families share cancer-risk information and seek support, noting that information travels based on relationship patterns and emotional closeness, not necessarily degree of risk. 

People with LFS have limited options for cancer prevention, and expectations for a cancer diagnosis and early death are common. “We’re seeing a lot of physical loss, where amputations and other changes in physical function are common consequences of treatment.” 

Many of the people Werner-Lin speaks with are looking at different pathways to parenthood or are choosing not to have children at all,” she says. “Grief becomes a chronic part of their lives, and those kinds of sustained of losses can connect individuals in and across families.”

Former SP2 graduate student Catherine Wilsnack is a Cancer Research Training Award Fellow at the NCI, doing qualitative research as part of Werner-Lin’s team. Wilsnack first met Werner-Lin while in her second year at SP2 and calls the encounter “transformative.” Werner-Lin is a “phenomenal mentor in every way,” says Wilsnack, who earned her master’s in social work (MSW) in 2019. “She always goes above and beyond for her students. I would not be where I am today if it were not for her and her guidance, so I just feel extremely lucky.” 

Now in midcareer, Werner-Lin is taking the time to mentor younger generations. “There are so many opportunities to focus on other people’s career development without such a bounded focus on my own professional needs,” she says, crediting her own mentors with the ability to achieve professional success.

At Penn, Werner-Lin is involved in the Cancer Moonshot initiative led by Katherine Nathanson and Steve Joffe, an effort designed to accelerate cancer research aimed at prevention, detection, and treatment. Werner-Lin’s aspect of the project, based at the Abramson Cancer Center at Penn Medicine, involves issues surrounding genetic testing in people aged 18 through 40. Susan Domchek, executive director of the Basser Center for BRCA, says, “Allison’s work in terms of the psychosocial implications of having a BRCA mutation—how an individual can come to terms with that and how that information gets disseminated between families—has been extremely helpful. She has a deep expertise on helping families navigate these situations.”

Approximately 1 in 400 people carry mutated breast cancer genes, though mutations are more common in certain groups of people. The gene mutations are passed in an autosomal dominant pattern, meaning each parent with a mutation has a 50% chance of passing it on. Children of a BRCA-positive parent can pursue genetic testing to learn if they carry the mutation, adding pressure to family planning.

Werner-Lin was one of these children. Her mother has a BRCA1 mutation. She recovered from colon cancer when Werner-Lin was in college and is currently in remission from a rare ovarian cancer. “When I was 23 and was thinking about having kids, I couldn’t figure out how to do it,” Werner-Lin says. “I started talking to people, talking to other women, and that became my dissertation.” 

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This curiosity and compassion led Werner-Lin to operate a private therapy practice out of her home, where she exclusively sees children and young adults with a deceased parent. “People often don’t see how therapy is connected to the genetics part of my work, but for me they are inseparable,” Werner-Lin says. “In my cancer work, parents often die young, leaving small children.” Frequently, the children of cancer patients conflate their parents’ lives with their own, not seeing options, degrees of freedom, or technological innovation.

Working together with an MSW student, Werner-Lin does whole family-therapy, from diagnosis to end-of-life, through the grieving process. She helps to facilitate goodbyes, talks about legacy building, and makes the concept of death more concrete for young people. 

The language adults use to talk about death is often confusing and shrouded in existential concepts, Werner-Lin says, citing references to angels or “going to a better place.” Young kids don’t necessarily understand time or geography, she says. “If we’re in New York, and Mommy went to ‘the other side,’ is that a better place?” 

Instead, she says, “we talk about the brain being a light switch, and once you turn it off you can’t turn it on again. We talk about how the heart stops beating and the eyes stop seeing.” These practical realities are important, Werner-Lin says. “Kids need to understand the way the world is predictable, especially when people they love and need can fall off the earth at any moment.”

Now back on campus, Werner-Lin is focusing on teaching and engaging with her graduate students. Acting in service to her patients, her students, and her colleagues is a core part of Werner-Lin’s brand of academia. “If you tell her that you want to do something,” Wilsnack says, “she will go out of her way to help.”