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Amy Colver, MSSA, MA, LISW
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Jeanice Hansen, LCSW, OSW-C
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Oncology Social Work Practice in the Genomic Era: Using What is Already in Our Toolbox
By Allison Werner-Lin, PhD, LCSW, and Catherine Wilsnack, LMSW
The sequencing of the human genome fundamentally shifted the ways we consider health and disease. These scientific advances led to the emergence of a new class of cancer patients: healthy individuals with identifiable genetic variants linked to increased lifetime cancer risk (called pathogenic variants or mutations) but without the certainty regarding the timing, severity and course of a diagnosis. Today, the capacity to identify such pathogenic variants still outpaces the development of tools to prevent or cure the cancers they predict. Expanded availability of testing for heritable cancer risk, and the increasingly nuanced interpretation of such tests, present novel challenges for individuals, families and communities impacted by cancer. Some of these challenges may include consideration of risk management, family formation, the distress of anticipating change and loss, and chronic grief.
The last 20 years has witnessed an explosion in research about the ethical, legal and social implications of genetic technologies, such as genetic testing for cancer risk. These findings must now be integrated into psychosocial, behavioral, and fiscal interventions. This intersection of genetics and cancer presents a unique opportunity for social workers with experience in chronic illness, disability, caregiving, and bereavement to support families. Oncology social workers do not need special knowledge of each inherited cancer syndrome to work effectively with families living with hereditary cancer. Rather, we have many of the skills in our repertoire from our work in oncology settings.
In oncogenetics, individuals with pathogenic variants who have a cancer diagnosis are often referred to by doctors as “affected.” This is, perhaps, our biggest pet peeve with language in this space. Social workers know that cancer impacts every part of the patient’s familial and social network. In families with hereditary cancer syndromes, family members within and across generations are always “affected” whether they have also had a diagnosis or struggled with caregiving. Further, multigenerational experiences map expectations about when one might anticipate a diagnosis, how one navigates communication with family, friends and clinicians, and how decisions about treatment and prevention are made. Using a genogram, or any comparable tool that tracks family dynamics through illness experiences, can be helpful to identify patterns and expectations, and begin to explore alternatives toward agency. Examination of family rules and practices around communication of emotionally laden information may also help individuals share risk and diagnostic information with intentionality, facilitate meaningful and sensitive dialogue, and advocate for comprehensive care for other loved ones who may be living with inherited cancer risk.
Social workers can support information seeking from reputable resources so that risk perceptions align not only with multigenerational experiences with illness and loss, but also with up-to-date science. Such resources include physicians, genetic counselors, nurses, other health care specialists, and rare disease advocacy organizations that may have partnerships with a variety of healthcare systems. Trustworthy information helps clients identify and articulate their own beliefs, hopes, and priorities. In collaboration with physicians and genetic counselors, social workers can facilitate shared information seeking that help clients distinguish between important decisions and urgent decisions. Oftentimes decisions that are important, such as the decision to get genetic testing for a familial pathogenic variant, feel urgent. When important decisions are treated as urgent, they may be overwhelming and motivated by fear. Urgent decisions are those that require immediate attention, such as whether to consider contralateral mastectomy as a preventive measure while in surgery for a unilateral breast cancer diagnosis. Helping clients differentiate between what is important and what is urgent can alleviate decision fatigue and ensure clients prioritize health related decisions appropriately.
Finally, connections with supportive communities, such as syndrome-specific advocacy organizations, provide a social network with shared experience and offer a clearinghouse of health-related information and resources. These organizations are often looking for social workers and other mental health and allied professionals to collaborate in support of their members. For more information, see below for a brief list of hereditary cancer resources and disease advocacy groups:
About the Authors
Allison Werner-Lin, PhD, MEd, LCSW
Associate ProfessorSchool of Social Policy and Practice, University of Pennsylvania
Allison Werner-Lin, PhD, MEd, LCSW, is Associate Professor at the School of Social Policy and Practice at the University of Pennsylvania. Her work explores the intersection of genomic discovery and family life with a particular focus on adolescent...
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Allison Werner-Lin, PhD, MEd, LCSW
Associate ProfessorSchool of Social Policy and Practice, University of Pennsylvania
Allison Werner-Lin, PhD, MEd, LCSW, is Associate Professor at the School of Social Policy and Practice at the University of Pennsylvania. Her work explores the intersection of genomic discovery and family life with a particular focus on adolescents and young adults from families with genetic predisposition to cancer. Dr. Werner-Lin collaborates with investigators at the Abramson Cancer Center to investigate barriers to accessing genomic medicine. She also holds an appointment with the Clinical Genetics Branch of the National Cancer Institute’s Division of Cancer Epidemiology and Genetics where she oversees an interprofessional team conducting mixed methods, psychosocial and behavioral research on hereditary cancer syndromes. Dr. Werner-Lin is a licensed practicing social worker with experience in community-based and private practice settings working with individual, family, and group affected by cancer. Dr. Werner-Lin received her PhD from the School of Social Service Administration at the University of Chicago. She holds a master’s degree in clinical social work from the University of Chicago and a master’s degree in human development and psychology from the Graduate School of Education at Harvard University.
Articles
Oncology Social Work Practice in the Genomic Era: Using What is Already in Our Toolbox
Catherine Wilsnack, LMSW
Doctoral StudentSteve Hicks School of Social Work, University of Texas at Austin
Austin, Texas
Catherine Wilsnack, MSW, LMSW, is a doctoral student at the Steve Hicks School of Social Work at University of Texas at Austin. Catherine earned her B.S. in Psychology from the University of North Carolina at Chapel Hill and a Master’s in So...
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Catherine Wilsnack, LMSW
Doctoral StudentSteve Hicks School of Social Work, University of Texas at Austin
Austin, Texas
Catherine Wilsnack, MSW, LMSW, is a doctoral student at the Steve Hicks School of Social Work at University of Texas at Austin. Catherine earned her B.S. in Psychology from the University of North Carolina at Chapel Hill and a Master’s in Social Work from the University of Pennsylvania’s School of Social Policy and Practice. During her master’s degree, Catherine completed an aging certificate program and clinically specialized in outpatient and inpatient interdisciplinary healthcare settings caring for terminally ill patients and their families. Upon graduating with her MSW, Catherine accepted a Cancer Research Training Award Fellowship at the National Institutes of Health in the National Cancer Institute where she trained in a research-intensive environment for two years. She has continued to earn her clinical hours toward licensure by working as mental health clinician for a private practice group in Maryland where she specializes in treating individuals facing terminal illness, cancer, grief, loss, depression, anxiety, and PTSD. In addition to her research and clinical accomplishments, Catherine currently serves on the board of directors for a patient advocacy group associated with Li-Fraumeni Syndrome called LivingLFS.
Articles
Oncology Social Work Practice in the Genomic Era: Using What is Already in Our Toolbox