Research That Matters (January 17 - 20, 2008)

Background: Recent literature on hereditary breast and ovarian cancer (HBOC) has identified unique medical and psychosocial challenges faced by young adults, specifically young adult women, living with BRCA mutations. Complicating the experience of these “pre-vivors” are (1) medical evidence suggesting cancer risk is highest before menopause, (2) the significant impact of preventive measures on reproductive capacity, identity, sexuality, and quality of life over a longer period of time than for older women, (3) the need to balance family planning concerns with HBOC risk management, and (4) the absence of appropriate psychosocial interventions to aid young women and their families in making medical management and family planning decisions.

Greater numbers of individuals pursuing genetic testing for HBOC are of reproductive age, and many are actively involved in family planning. Genetically enhanced assisted reproductive technologies (ART) may provide growing families with greater control over their children's genetic inheritance, carrying the promise of “normalcy” to families frequently entrenched in painful illness histories. However, the use of ART poses a number of significant ethical, financial, and relational challenges.

Method: This paper explores data from a qualitative investigation assessing the intersection of family histories with cancer and family development for young women. Twenty-three women aged 21-36, 13 of whom were mothers at the time of the interview, who carry a BRCA mutation completed an illness genogram and open ended interviews. Transcripts were analyzed using the Listening Guide, narrative data analysis tool that emphasizes the use of voice to highlight key themes, relationships, and meaning structures. Emergent themes involved family planning, child bearing and beliefs about the use of assisted reproductive technologies.

Results; Mothers in the sample were primarily concerned with remaining cancer free to be available to their children. This meant actively pursuing preventive surgery and curtailing further child bearing endeavors to ensure sustained health. Women interested in becoming mothers were concerned about maintaining reproductive capacity while minimizing cancer risk. Overall intent to pursue ART was minimal. Participants cited (1) the belief that cancer is easy to detect and treat, (2) hope for significant medical advances in prevention, and (3) prohibitive costs. The few participants interested in ART were from “medical families” where familiarity with medical intervention was well established, and, perhaps, where financial resources enabled access to expensive procedures.

Implications: Knowledge gained from this investigation will aid in developing comprehensive research protocols addressing interest in and intent to use ART to screen for deleterious mutations. Research implications, such as the need to include partners and attention to health care and access issues must be considered. Further, this study will aid health professionals in devising and implementing targeted psychosocial interventions to help couples use genetic information to make informed family planning decisions. Finally, health and mental health professionals are just beginning to chart this ethical terrain. Social work voices are crucial to advocacy, policy, and research development to ensure diverse and marginalized voices are heard.