Based on the findings in this study, we propose use of a novel concept that we call “Ownership of Uncertainty” to advance the understanding of how health care professionals counsel and care for women who receive an inconclusive BRCA
1/2 genetic test result. This concept fits several of the conditions descriptive of a core category, or theory, as described by Glaser (1998)
: it suits the situation (inconclusive genetic test results), helps individuals make sense of their situation (health care professionals concern about informing patients about the meaning of inconclusive results and their own concerns about the uncertainty involved) and links different aspects of the situations (Ownership of Uncertainty and the five subcategories: sole ownership, shared ownership, diffused ownership, normalisation of uncertainty and transfer of uncertainty).
While this qualitative study cannot be generalized, it does shed light on how a segment of professionals in the genetics community counsel and care for patients from HBOC families. There is a serious need to take this information into account because the future may alter if testing becomes available for common low penetrance genes that may refine risk for unaffected women (Weber, 2000; Campeau, Foulkes, Tischkowitz, 2008
). Despite these recent advances, most of the familial risk of breast/ovarian cancers has yet to be explained (Turnbull, Rahman, 2008
). Furthermore, these advances will bring with them additional uncertainties.
The social context in which genetic medicine is practiced today has drastically changed. These social changes together with technological advances affect how patients evaluate risk (Beck-Gersheim, 2000
). It is characterized by interaction between increasingly sophisticated diagnostic tools, development of new medical management techniques, rapid advances in genome wide association studies (GWAS) and new social norms.
In the mid 20th
century when the norm for physicians was paternalism, (Elwyn et al.2000
), there were far fewer bio-technological advances, the Human Genome Project was a futuristic idea, BRCA1/2
genetic testing for women at increased risk for breast/ovarian cancer did not exist so health care professionals did not have to face the number and kind of uncertainties present in a genetic risk clinic today. Furthermore, at that time, rigorous enforcement of women’s rights and bioethical standards had not yet been achieved. Tomes (2007)
asserts that is impossible to return to the model of paternalism. Instead she advocates the improvement of collaboration between patient and physician that has been developing for the past two decades.
Patients now use alternate sources of information ranging from experiences of friends, relatives and the internet about their future risks of developing breast/ovarian cancer and their choices of medical management options (Kenen et al.2007
). While the health care professional is still considered to be an important resource by most of the women from HBOC families, they often expect more certainty than the health professionals are able to provide. Several of the professionals blamed the media’s black and white presentation of genetic testing for the women’s erroneous expectations (Petersen, 2001
; Bubela and Caulfield, 2004
). They needed to explain to the women that despite the enormous advances in the field, there was still a gap between scientific, technical possibilities and their clinical meaning. This comprised complicated information that the health care professionals were not always sure that the women completely understood.
Some research has reported that women deciding on BRCA1/2
testing frequently wanted to know the opinions of their primary care, as well as their cancer genetics care doctors regarding their options ( Armstrong, et al. 2002
). The researchers found that over three quarters of women who went for BRCA1/2
genetic testing wanted to know the opinion of their cancer genetics doctors and more than half wanted to know their primary care doctors’ opinions as to what they should do. In our conceptual terms, these women seemed to want to “share the ownership of uncertainty” with their health care professionals by factoring into their own decision-making how the practitioners viewed the uncertainty. We can interpret this in two ways; one, that the women wanted to incorporate this information into their repertoire of knowledge and preferred to make a completely autonomous decision, in effect having their health care professionals transfer ownership of uncertainty to them. In other words, the women wanted to share information, but not responsibility. Secondly, the women wanted this information as part of a shared ownership of uncertainty with their health care professionals contributing both information and responsibility. Both these interpretations indicate that women do not want to return to the paternalistic model. However, sharing uncertainties about the outcome of medical processes between health care professional and patient can result in an increase in anxiety for both partners (Elwyn, et al. 2000
Our data also showed that within our sample, most of the health care professionals did not want to revert to a paternalistic model. A decade ago Angela Coulter, writing in the British Medical Journal, claimed that paternalism on the part of the health professional led to “an unhealthy dependency which is out of step with other currents in society” (1999, p. 719). She further asserted that successful partnerships between patients and health care professionals should not be hierarchical and that the professionals need to value the patients’ expertise which is of a different type but equally important. A non hierarchical perspective regarding women’s knowledge acknowledges their autonomy, and autonomy holds contemporary dominance over other western principles of medical ethics (. et al. 2000). Autonomy can lead to a desire for empowerment. McAllister et al. (2008)
have developed a model of empowerment that evaluates patient benefits from utilizing genetic services. Perceived benefits, however, may not include possible latent negative consequences associated with increased knowledge and use of the latest technological options in the field of clinical genetics .
Currently, the high degree of uncertainty endemic in cutting edge hereditary breast/ovarian cancer genetics combined with changes in the way society views human rights in general, might be one reason why few health care professionals in this study chose a sole ownership of uncertainty model as their practice modality and tended to use the shared or transference of uncertainty models instead.
In 2000, Beck-Gersheim wrote presciently that genome analysis will lead to a redefinition of both health and responsibility. Health will be viewed as an end product, or just the promise of health will become a deeply held value, even when experts in the field debate both efficacy and ethics. Thus, both health care professionals and patients are likely to adhere to new social norms regarding a technological model of preventive health care despite the amount of uncertainty involved. The health care professionals stress new genetic screening and testing options and new surgical and biochemical methods of purported risk reduction. Women want to have this knowledge, yet paradoxically a large number of choices may reduce a woman’s control of her future well being, if the uncertainties and unknown risks of some of them are too high.
In concert with technologically driven changes in health care, the concept of responsibility has become an increasingly important value in the modern era. For example, genetic testing is voluntary, but there may be subtle pressure to have a test. Irresponsibility and blame may be attached to naysayers. For many physicians and women, use of modern genetic technology with all its downsides seems to provide a better handle on uncertainty and reduction of risk as well as reducing self blame and feelings of irresponsibility (Beck-Gernsheim, 2000
). “Anticipated regret”, the result of not taking advantage of the latest genetic tests and clinical advances is a potent driver of possible unwarranted or overuse of cutting edge technology. This regret is sometimes fuelled by social pressure (Aronowitz, 2007
). This social pressure probably reflects some of the “other currents in society” that Coulter mentioned but did not specify (1999).
The health care professionals daily traversed a minefield of uncertainty intrinsic to their practice. At times, they seemed caught between two creeds of sound and ethical medical practice – beneficence (doing good) and avoiding maleficence (doing no harm). The providers expressed hope that their dilemmas would be solved with better solutions in the relatively near future. They just did not know when, and however frustrating they currently found translating uncertainty laden information into effective risk communication, they expressed the belief that there was “light at the end of the tunnel” in providing comprehensive answers. They, however, did not appear to adhere to Becks’ (1992) assertion that in a risk society the growing complexity of modern knowledge systematically produces “non-knowledge” which allows risks and dangers to develop, and that this exists at every higher level of new knowledge. Practicing clinical genetics during an era dominated by a plethora of new genetic discoveries is a daunting endeavour, whether the perspective of the health care professional emphasises the advances in medical understanding and treatment or the uncertainties that are endemic in a risk oriented society.