Sharing Genetic Risk Information: Implications for Family Nurses Across the Life Span

Abstract

Sharing genetic risk information in families can be very challenging. However, the consequences of poor communication can be detrimental to the psychological health and well-being of parents and children in the present and the long term. Family nursing can play an important role in supporting family communication about genetic conditions. This role has several components: Firstly, improved assessment of families affected by or at risk from inherited genetic conditions. Secondly, facilitation of families' discussions of genetic risk, especially between parents and children. Family nurses can use an integrated model of family care to support parents and their children in discussion of genetic risk information throughout the child's development, including provision of assistance specifically for young people, who want to discuss the issues they face with informed nurses. Thirdly there is a role for family nurses in educating other specialist nurses in taking a more family-focused approach when they are caring for patients affected by genetic conditions. If the full benefits of genomic technologies are to be recognized and implemented, it is essential that the relational impact of the science be strengthened to enhance family relationships and support genetic risk information sharing.

When to break the news and whose responsibility is it? A cross-sectional qualitative study of health professionals’ views regarding disclosure of BRCA genetic cancer risk

“…A multidisciplinary approach to genomic medicine has been proposed to be effective in tackling the challenge of disclosure 28 41. GHPs are currently supporting young at-risk relatives within high-risk clinics in Australia, but can also potentially allow for ongoing support of families struggling with disclosure difficulties.…”

Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions

“…Actions included personal risk management through screening, information gathering, and surgical risk reduction, reducing the medical and emotional risks experienced by loved ones, and preserving important relationships. Clinicians working with families at risk of HBOC can apply these findings when providing test results to and counseling family members, to support and leverage naturally communication networks in families (Metcalfe, 2018).…”

“…Women in this study identified health care providers and other nonfamilial social network members as key providers of information and resources, and brought this new information back to the family to create new potential paths to health for themselves and other at-risk family members. While naturally occurring social networks can provide essential social and emotional support, those incorporating input from experts and extra-familial others expand information available to those at risk (Griffiths et al, 2012; Metcalfe, 2018). Nurses and other health care providers can recognize the importance of the information they provide to women at risk, and ensure that they have up-to-date information on health risks and treatment opportunities to share with at-risk women and others in their families.…”

Precision Health and Nursing: Seeing the Familiar in the Foreign

“…When an inherited condition is discovered that definitively leads to disease, discussions about how to share this news with family members can be complex especially if family members have expressed a preference not to be told the results of testing (Metcalfe, 2018). However, discovery of inherited risk for disease is also an opportunity to promote health and prevent disease with the potential for improved health for multiple individuals (Skirton, 2017).…”

“…Nurses can use their expertise in relational communication to help patients navigate challenging decisions emerging from genetic testing results. Understanding precision health in the context of families means optimizing the health of all family members by helping families navigate difficult conversations, adapt to living with a genetic condition, and cope with psychological challenges (Metcalfe, 2018). Family is defined not only by DNA; however, in the context of genetics and precision health of an individual, it is important to consider the potential benefits and challenges that an individual's genetic information has for their family members.…”