This week on the blog we are highlighting a paper by M.A. Rubel, A. Werner-Lin, F. K. Barg, B. A. Bernhardt, titled Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results. The authors completed phone interviews with women and their partners who had received positive prenatal microarray testing results. The authors then analyze the data using modified grounded theory, discussing the theme of cultural expert knowledge and the implications on research and practice of prenatal testing. They close by recommending a future assessment of informational needs before testing to aid both the patient and their partners.
The authors begin by describing the increase in the use of prenatal genetic testing by pregnant women. Potential methods of genetic testing include invasive, non-invasive, and integrated screening for various potential fetal anomalies or genetic conditions. Chromosomal microarray, also called prenatal microarray, is a prenatal test that is used to “detect copy-number variants not detectable by conventional cytogenetic” (Rubel et al, 2017, 383). These test are recommended by the American College of Obstetrics and Gynecology if an anomaly is found via ultrasound. Parents feel anxiety after receiving a result of variant of uncertain significance, which can affect their decision-making following the result.
Western biomedicine helps to inform the biomedical expert knowledge (BEK) that holds a privileged status. BEK has roots in cultural and social conditions that shape how the knowledge is interpreted. BEK is founded in the idea that “aspects of the patient’s body and its symptoms are variables that can be independently and objectively evaluated and treated” (384). However, the genome may also be interpreted through a standard outside of biomedical knowledge. These other frameworks of medical knowledge may be used to interpret the testing done to women.
For this study, the authors recruited subjects for the study from the distribution of a pamphlet to pregnant women who received results from microarray testing. These women could then choose to participate in a short online survey that asked for demographic information and the results of the microarray test. The women who completed the survey and indicated interest were then e-mailed with information about the interview portion of the study. In total, 152 female patients completed the survey and 27 women were interviewed. 12 of their male partners were then subsequently interviewed.
Those who received positive results with uncertain or variable outcomes underwent a “state of crisis” after their results (388). They attempted to find the information related to their situation; some clinicians even provided the patients such biomedical information through literature and leaflets. Some patients were reassured by entrusting the health care providers to also provide the knowledge. Yet some providers may not wish to take a directive position and provide such materials.
Most of the patients interviewed expressed frustration that there was not enough information or resource provided initially by their clinicians. Patients that sought out BEK often turned to the internet. Those who considered themselves educated found it easier to search the information they could find online, yet there was still a general frustration about the BEK that was provided. Because of this frustration, patients often turned to other sources of understanding. The authors also extensively other ways of knowing and understanding their test results. These include embodied knowledge, spiritual beliefs, social networks, and a family history. These other types of knowledge other than BEK allowed the patients to understand their test results on their own terms.
The authors propose the term “Cultural Expert Knowledge” or CEK to encompass the types of knowledge that patients gained from outside the biomedical paradigm. This non-expert knowledge was some patients only information source. This provides a contrasting source of information to BEK and helps patients to understand their test results on their own terms. The authors close with a discussion about the difficulties of quantifying CEK since it is based on individual conceptions and outside of the biomedical sphere. They acknowledge the limitations of the study and provide further areas for expansion of the research base.