Pacientes, material y métodos

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Communication is an important aspect of GC. In a recent systematic review on communication during genetic consultations, Paul and colleagues (2015) determined that GC communication studies fall under three main objectives: 1) searching for structural patterns during consultations, 2) determining communication and GC concepts, and 3) linking processes with input- and outcome- measures (Paul et al. 2015). Each of these three main objectives also had identified themes. In the studies to identify structural patterns, it was determined that clinicians dominate the discussion and that communication tends to be mostly educational and scientific rather than psychosocial (Paul et al. 2015:19). Concepts and communication themes that arose included the communication of risk, negotiations of power and knowledge, and the use of “indirect speech” to remain non-directive (Paul et al. 2015:20; 28-29). Finally, the review found that studies that attempted to link process with input- and outcome- measures were not typically successful (Paul et al. 2015:20).

Importantly, while the systematic review by Paul et al. (2015) found that most counseling sessions were primarily educational/biomedical in nature, another review on risk communication interventions determined that the psychosocial aspects (supportive/emotional elements) of counseling provided the most benefit to counselees (Edwards et al. 2008). While counselees and counselors obviously have different agendas and goals for their session, the focus of communication (education vs. emotional) may need to shift in order to best address the counselee and their needs.

A particularly in-depth view of GC was undertaken by anthropologist Rayna Rapp who studied prenatal GC in the early 1980s. Her research, in part, was to study the discourse between genetic counselors, a relatively “new health profession” at the time, and the multilingual, multicultural clients they came into contact with in New York City. Specifically, she was interested in how amniocentesis, as a new reproductive technology, was not only being communicated in regards to risks and benefits, but how power, social knowledge, and popular meanings about disability played out in the hospital (Rapp 1988). One of the most important findings from Rapp’s research is that despite the emphasis on being nondirective and for a patient to make up their own mind regarding pursuing testing, it was instead found that “counselors stand in a contradictory position with respect to their clients’ decisions…for they are always making choices about what sort and how much information a pregnant woman needs and can use, as well as the form in which she can

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best absorb it” (Rapp 1988:154). This situation is mirrored in the genetics clinic, for the genetic counselor cannot/does not go over every single type of test that is available to the counselee, nor do they provide information on the many different laboratories that conduct the testing (personal observation, 2014). Rapp also clearly and effectively presents power differentials that exist between counselor and patient, as well as calls into question the supposed universality of the language of science, which is portrayed as objective and fact-based (Rapp 1988). This research, clearly focused on communication and discourse, was enveloped within her larger research focus that contributed to assessing new reproductive technologies, disability rights, reproductive rights, and the role of scientific literacy in America (Rapp 1999).

Summary of literature review and theory

This chapter seeks to situate the reader among a variety of disciplines in order to understand the current research. As guiding frameworks, feminist theory and CMA are the interpretive lenses that this work is conducted through, impacting what data is collected and how it is interpreted. Feminist theory requires a gendered analysis to interrogate the ways in which power, gender, and privilege are constructed within a biomedical setting. While feminist theory can sometimes be used to understand individuals on the ground, CMA is then used to interpret individual actions under a larger framework. In this work, CMA reminds us that macrolevel forces are also at work which we cannot forget in the face of individual stories.

Part of the macrolevel approach is understanding the healthcare system in which this work is embedded, especially that of oncology care in the United States. Cancer care has grown by leaps (people) and bounds (money) since the National Cancer Act was signed in 1971. Recent renewed momentum in the form of the Cancer Moonshot 2020 indicate that while much progress has been made, more work has yet to be done. Racial cancer disparities are growing among some cancers, the price of cancer drugs is skyrocketing, and some Healthy People 2020 cancer objectives are slipping through our fingers.

Within cancer care there exists a relatively small portion of the pie which deals with hereditary cancers. While only 5-10% of cancers worldwide are estimated to be hereditary, more than 200 hereditary cancer syndromes have been identified since the early 1990s. Critical to this research are the BRCA1 and

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BRCA2 genes and hereditary breast and ovarian cancer (HBOC) syndrome. Mutations for these genes increase cumulative risks for breast and ovarian cancer primarily. In the United States, breast cancer is the most common cancer diagnosed and is the second leading cause of cancer death. Ovarian cancer is rarer but is responsible for more deaths than any other cancer of the female reproductive system.

Finally, an understanding of genetic counseling (GC) is critical to this research. As a master’s degree profession, GC is relatively young having started in the late 1960s. However, it has experienced massive growth in both practitioners and programs. Guidelines for genetic counseling indicate several components that anyone ordered genetic testing should adhere to: personal and family history intake; psychosocial assessment to discuss impact of genetic information on the patient and their family members; as well as a cancer risk assessment, which is accomplished through various risk assessment models.

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