Men's values-based factors on prostate cancer risk genetic testing: A telephone survey

There are several factors to consider in undergoing genetic testing for cancer risk: potential benefits, possible risks, psychological distress, and the uncertainty in subsequent decision-making about prophylactic interventions [1‐9]. While the health professional's assessment of the potential benefits and harms frames the disclosure of informed consent, the patients' values and expectations are intrinsic on the decision-making process. Current understanding of these values and expectations has been primarily derived from patients considering genetic testing for breast and colorectal cancers [10]. It remains unclear how these same factors may influence men's decision making in testing for hereditary prostate cancer risk [2]. The question addressed in this article is what values and expectations influence the intention of men to undergo genetic testing for prostate cancer risk.

A definitive genetic test for prostate cancer is not clinically available yet. Current genetic tests are only conducted in research studies. Several potential genetic loci have been identified as linked to hereditary prostate cancer, including HPC1 [11], MXI1, KAI1, [12] and 1q42.2-q43 on chromosome 1q. In the future, a test (or set of tests) for hereditary prostate cancer risk may become available. Such testing may become an important tool in preventing prostate cancer, or be useful once prostate cancer is diagnosed (e.g., for treatment decisions). Further, it is prudent for physicians to be prepared for patient requests for genetic testing, even when there are no strong clinical indications. Learning why men would accept or refuse prostate cancer genetic risk information is therefore relevant to the future of testing, and its informed consent.

Informed consent for genetic testing for cancer risk is particularly controversial in cancers where knowledge of a positive test result does not provide opportunities for interventions for favorable outcomes, and a negative result does not provide reassurance [13]. High stated intention for genetic testing for prostate cancer risk (over 80%) has been reported in the past [14]. Identification of a man at genetic risk for prostate cancer presents an ambiguous dilemma: Should a positive result be followed by prophylactic surgery, medication, increased surveillance (via PSA testing or rectal examination), or standard screening recommendations? The knowledge gained through genetic screening may not necessarily lead to clear cut recommendations about what the patient should do next.

This study examines men's beliefs and values toward interest in prostate cancer genetic testing. A survey instrument was developed for men between 40 and 70 years of age, exploring their beliefs, attitudes, and concerns in considering a hypothetical blood test. Exploratory factor analysis was applied to identify the underlying factor dimensions. The relative importance of these factors was then compared to testing intention.

These data demonstrate that men in the general public, aged 40 to 70 years without a personal history of prostate cancer, consider prostate cancer genetic testing related to four value-based factor domains, similar to past literature findings on genetic testing for hereditary cancer risk. The motivation factor, which measures values of influence by others, is the strongest decision factor in guiding their opting for the test. More than 80% of men interviewed would consider getting tested if the test was available now. Their stated intention, as measured by the four intent items, is highly correlated with how strongly they feel they are motivated toward the test and inversely related to family influences. Men with strong motivation to get tested also have significantly lower concerns about psychological distress and higher levels of positive expectations. The recommendations of physicians and geneticists are important to men's expressed motivation, although the professionals did not appear to be more influential than their kin.

Prior hereditary breast cancer (BRCA) and colorectal cancer (CRC) literature has noted anecdotally that perception of benefit to one's family influences genetic test uptake. Eliciting patient perceptions of concerns regarding their family may be beneficial to consider in oncology genetic testing generally. Similar to this literature, intention was found to be influenced by the respondent's concerns about test validity, test accuracy, and by the availability of interventions that may lead to favorable outcomes. Not surprisingly, men who were concerned about potential psychological distress were less likely to want the test. One unanswered question is how men's anticipatory distress and expected adverse consequences may affect how family risk information is interpreted and discussed. Few men in our study anticipated high levels of distress. Although literature data clearly show elevated distress among patients and their family members [21]. More research is needed to better establish the family-risk construct and how it may be influenced by other beliefs and values.

The present study has limitations. Given the exploratory nature of factor analysis, these data are aimed at identifying coherent subsets of variables for data reduction, not at identifying specific attitude statements that discriminate skeptics from supporters. Nevertheless, the reduced set of 34 items is the most important among the administered 57 items, and comprises a coherent and reliable assessment tool of eliciting values and intention toward testing. This item set can thereby serve as a foundation for a confirmatory health beliefs model, using Structural Equation Modeling techniques to better elucidate the interactions of these value-based domains [22]. Also, we noted that this population had somewhat higher income and education levels than the overall Philadelphia Consolidated Metropolitan Statistical Area (CMSA). 51% of men had over $75,000 income, compared with the 32% in the Philadelphia CMSA 2000 census year dataset, and 41% had completed a Bachelor's degree or higher, compared with 28% in the CMSA. These differences may be due to affluent subjects living in suburban counties in the metropolitan Philadelphia area, who then self-select to be seen by physicians in the University of Pennsylvania system. As noted above, our prior work demonstrated no demographic differences except education (with more education correlating with diminished intention). Thus, we do not foresee an adverse impact of these discrepancies on the overall outcomes of our analysis [20].

Future directions of this research may include exploring the relationship between stated intent in prostate cancer genetic screening and actual testing behavior when testing is available. Studies have shown that expressed intention does not necessarily translate to actual behavior in taking genetic tests for breast and colorectal cancers [10, 23‐29]. The same discrepancy between attitude and behavior may exist when a test for prostate cancer is available for the general public. Our data suggest that potential psychological distress, worries about test validity, insurance, confidentiality, and the uncertainties in subsequent intervention decisions may need to be balanced with family considerations when testing becomes available [30].

Men in this survey voiced strong attitudes favoring future genetic testing for prostate cancer risk. In the past decade and a half, genetic testing for a variety of cancers concentrated on several key concepts: i.e., stigmatization, privacy, anxiety/stress, and the need to know. These notions of stigma and psychological impact were not as relevant in this population regarding prostate cancer risk genetic testing. For examples, the following statements did not show strong enough factor loadings to warrant their inclusion, such as "I will not be able to keep my job, or get a promotion, if I know I have the prostate cancer risk gene," "The government could use my test results in ways I do not want," "I often worry about getting prostate cancer," and "I would want to get tested because I just want to know if I have the gene for prostate cancer."

The most relevant aspect of data reported herein is that they begin to shed new light on the relevance of "others." How men were concerned about the impact on and the effects upon one's family were reflected in the factor analysis. As a result, future informed consent may likely include considerations of 1) how the test results will affect their own future lives, and 2) how the test results will affect their family members. The latter consideration is seldom brought into the informed consent process in the genetic counseling but may be relevant to the patient.