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Patient Education and Counseling 33 (1998) 67–81 Communicating cancer risk information: the challenges of uncertainty a, a ,b a b ,c * Joan L. Bottorff , Pamela A. Ratner , Joy L. Johnson , Chris Y. Lovato , a ,b S. Amanda Joab a School of Nursing, T201-2211 Wesbrook Mall, University of British Columbia, Vancouver, BC V6T 2B5, Canada b Institute of Health Promotion Research, University of British Columbia, Vancouver, BC, Canada c Health Care and Epidemiology, University of British Columbia, Vancouver, BC, Canada Received 19 December 1996; received in revised form 6 May 1997; accepted 6 May 1997 Abstract Developments in predictive testing for inherited cancers have focused attention on the accurate and sensitive communication of risk information. Although sharing risk information is often equated with genetic testing, it is important to acknowledge that the need for risk information related to familial cancer is also relevant to those not eligible for, or interested in, testing. Communicating cancer risk information is germane to a number of health professions including physicians, geneticists, genetic counsellors, psychologists, nurses, health educators and social workers. Based on a literature review of 75 research reports, expert opinion papers and clinical protocols, we provide a synthesis of what is known about the communication of cancer risk information and make recom- mendations for the enhancement of knowledge and practice in the field. u 1998 Elsevier Science Ireland Ltd Keywords: Risk communication; Familial cancer; Genetic testing; Counselling; Patient education Prodigious efforts have been made by the forms of breast, ovarian, and colon cancers [1]. scientific community to identify genetic causes of Currently, programs for the provision of risk many diseases, including various forms of cancer. information related to hereditary cancer are in This research has led to identification of certain the nascent stage of development and, as such, genes that predispose individuals to dominantly- are offered on limited bases, usually as part of inherited cancer syndromes. With recent de- research programs. With continued advances in velopments in DNA testing, it is now possible to genetic technology and growing demands for risk offer individuals within identified ‘cancer information there is an emerging need for health families’ (i.e., with hereditary cancer syndromes) professionals to address the challenges associated specific information about their risk of some with communicating risk information and to identify effective methods for counselling pa- tients and their families. Communicating cancer * risk information is relevant to a number of health Corresponding author. Tel.: 604 822 7438; fax: 604 822 7466; e-mail: [email protected] professions including physicians, geneticists, ge- 0738-3991 / 98 / $19.00 u 1998 Elsevier Science Ireland Ltd All rights reserved. PII S0738-3991(97)00047-5

Communicating cancer risk information: the challenges of uncertainty

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Page 1: Communicating cancer risk information: the challenges of uncertainty

Patient Education and Counseling 33 (1998) 67–81

Communicating cancer risk information: the challenges of uncertainty

a , a ,b a b ,c*Joan L. Bottorff , Pamela A. Ratner , Joy L. Johnson , Chris Y. Lovato ,a ,bS. Amanda Joab

aSchool of Nursing, T201-2211 Wesbrook Mall, University of British Columbia, Vancouver, BC V6T 2B5, CanadabInstitute of Health Promotion Research, University of British Columbia, Vancouver, BC, Canada

cHealth Care and Epidemiology, University of British Columbia, Vancouver, BC, Canada

Received 19 December 1996; received in revised form 6 May 1997; accepted 6 May 1997

Abstract

Developments in predictive testing for inherited cancers have focused attention on the accurate and sensitivecommunication of risk information. Although sharing risk information is often equated with genetic testing, it isimportant to acknowledge that the need for risk information related to familial cancer is also relevant to those noteligible for, or interested in, testing. Communicating cancer risk information is germane to a number of healthprofessions including physicians, geneticists, genetic counsellors, psychologists, nurses, health educators and socialworkers. Based on a literature review of 75 research reports, expert opinion papers and clinical protocols, weprovide a synthesis of what is known about the communication of cancer risk information and make recom-mendations for the enhancement of knowledge and practice in the field. u 1998 Elsevier Science Ireland Ltd

Keywords: Risk communication; Familial cancer; Genetic testing; Counselling; Patient education

Prodigious efforts have been made by the forms of breast, ovarian, and colon cancers [1].scientific community to identify genetic causes of Currently, programs for the provision of riskmany diseases, including various forms of cancer. information related to hereditary cancer are inThis research has led to identification of certain the nascent stage of development and, as such,genes that predispose individuals to dominantly- are offered on limited bases, usually as part ofinherited cancer syndromes. With recent de- research programs. With continued advances invelopments in DNA testing, it is now possible to genetic technology and growing demands for riskoffer individuals within identified ‘cancer information there is an emerging need for healthfamilies’ (i.e., with hereditary cancer syndromes) professionals to address the challenges associatedspecific information about their risk of some with communicating risk information and to

identify effective methods for counselling pa-tients and their families. Communicating cancer

* risk information is relevant to a number of healthCorresponding author. Tel.: 604 822 7438; fax: 604 8227466; e-mail: [email protected] professions including physicians, geneticists, ge-

0738-3991/98/$19.00 u 1998 Elsevier Science Ireland Ltd All rights reserved.PII S0738-3991( 97 )00047-5

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netic counsellors, psychologists, nurses, health in the literature relates to how these familyeducators and social workers. experiences shape and influence decision making

We conducted an extensive review of the related to the seeking of risk information. Previ-literature related to the communication of risk in ous research has focused on individuals in isola-the context of familial cancer [2]. Relevant litera- tion from their family networks and withoutture was identified via a variety of approaches consideration of the family’s status in relation toincluding on-line searches, manual searches using living with and understanding the risk of cancer.an ancestry approach, and direct contact with Although predictive testing for cancer bearsnational associations in Canada and the United some similarities to other fields of genetic testingStates, experts and investigators in the field. As (e.g., Huntington Disease), familial cancer isthis is a relatively new area, only approximately distinguished by some important characteristics300 relevant articles were identified, and most that fundamentally influence the context in whichwere discussion papers, position statements, case information is provided and received. First, onlystudies, and protocols. In this paper, we provide 5% to 10% of cases of cancer are estimated to bea synthesis and review of the key findings of 75 inherited [1,16,17]. If a person in a cancer familypublished papers, research reports (including is found to be a noncarrier, the probability ofcase studies), and clinical protocols that focus on developing a sporadic cancer (i.e., not linked to athe communication of cancer risk information. hereditary component) remains equivalent toThis review is augmented by selected literature that of individuals in the general population (e.g.,related to genetic counselling and testing, in a woman has a one in eight chance of developinggeneral, and risk perception and uncertainty. breast cancer sometime in her life) [18]. WithFinally, we make recommendations for enhanc- hereditary cancer syndromes, unlike Huntingtoning knowledge and practice in the field. Disease, early detection of disease (e.g., with

mammography or colonoscopy) and potentiallypreventive interventions (e.g., prophylactic

1. The context of providing cancer risk surgery or chemoprevention) offer hope to car-information riers. Although the effectiveness of prevention

strategies such as prophylactic surgery is incon-Apart from obtaining population-based infor- clusive, they have successfully relieved some

mation about risk factors for cancer, to date, individuals’ anxiety and fears of developing can-there are limited opportunities for obtaining cer [19,20]. Given these unique characteristics,accurate personalized information regarding there is general consensus that specific protocolsone’s risk. Based on clinical observations [3,4], to support the provision of familial cancer riskand a limited number of studies focused on information are needed.attitudes of the general public [5,6] and first-degree relatives of cancer patients [7–9], a mark-ed predilection for risk information is evident, 2. Providing risk informationparticularly in the form of testing for cancersusceptibility (i.e., genetic testing). The impetus Although risk is a commonly encounteredfor this demand likely originates from media concept in the health sciences, diverse notions ofattention and heightened anxiety related to can- it have varied across disciplines and betweencer susceptibility [10]. The limited research in professionals and the general public. Hanssonthis area indicates that factors influencing in- [21] pointed out that experts treat the term as aformation seeking include perceptions of vul- unidimensional, technical concept that refers to anerability, anxiety, and coping styles [8,11]. An particular, known probability. The general pub-additional important stimulus for seeking risk lic, on the other hand, attaches many meaningsinformation appears to emerge from family ex- to the term. One of the most striking features ofperiences with cancer [12–15]. A significant gap this incongruity is that there may be a vast

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difference between the estimated magnitude of Research has indicated that individuals’ under-different risks and individuals’ perceptions, inter- standing of numeric data is informed by par-pretations, and their ultimate acceptance of those ticular cognitive biases. For example, Parsonsrisks. and Atkinson [27] found in a study of mothers

In both clinical medicine and epidemiology, and daughters of families with Duchenne Muscu-the concept of risk is fundamental to an under- lar Dystrophy (a genetically transmitted disor-standing of the aetiology and prevention of der) that, although the subjects had been givendisease. The concept is operationalized as a risk values of their carrier status and reproduc-statistical measure of the degree of association tive risk expressed in percentage terms, theybetween particular characteristics or conditions frequently translated those values into ordinal orand a disease within a defined population [22,23]. categorical terms. Such crude or unrefined inter-As Gifford [24] pointed out, the concept of risk pretations (e.g., ‘high’, ‘low’, ‘fifty-fifty’) perhapsis broadened in clinical applications, in relation were more interpretable for the women involved;to both practitioners’ and the lay public’s use, in however, the inherently probabilistic character ofthat the term is used to convey a constellation of risk information was thereby converted intomeanings, some internal and some that remain definitive or declarative statements and ‘‘thelargely unconscious. For the most part, there is probabilistic was expressed as a matter of cer-confusion and continuing debate between sci- tainty’’ ([27], p. 454). Similarly, Lippman-Handentists (epidemiologists and biostatisticans) and and Fraser [28] found that recipients of geneticclinicians about how best to translate concepts of information related to reproductive concernsepidemiological risk into clinical risk. reduced the information to a dichotomous inter-

Uncertainty is a condition of not knowing pretation (i.e., either it will or will not happen).indisputably—being unreliable, changeable, or These authors suggested that individuals’ pro-erratic. One way of distinguishing between risk pensity to convert risk information into a dich-and uncertainty is to stipulate that risk is associ- otomy is the result of an heuristic mechanismated with more than one possible outcome where employed to simplify very complex informationthe probability of each outcome is known. Un- so that decision-making processes can operatecertainty, on the other hand, exists when the [29]. Most important, as pointed out by Palmerprobability of outcomes are unknown [25]. Yet, and Sainfort [30], interpretation of the mag-even in the face of known probabilities, there is nitude of a risk as high or low lies within thesome uncertainty. Predictions by nature are recipient of the information and may not corre-probabilistic; unexpected events can alter ex- spond with the objective value.pected (highly probable) courses (e.g., medical Providing risk information about cancer toprognoses) [26]. The notion of uncertainty seems individuals who may perceive themselves to beparticularly relevant to considerations of risk healthy, and who may or may not have directlycommunication for familial cancers because its observed a close relative with the disease, re-very presence may be less apparent to the public quires these individuals to engage in sophisti-and even to some geneticists. As Davison et al. cated abstract thinking. This issue becomes more[26] pointed out, the domain of genetics is pronounced in situations where there is notthought of as being fixed, unavoidable, and effective therapy available or the information isimmutable, i.e., a person’s genetic endowment is only relevant in considerations of possible futurea ‘blueprint’ of his or her biology. Consequently, outcomes [31,32].‘‘it may be tempting...to envisage genetic screen- The manner in which risk information is pro-ing for predisposition to disease as having a vided and how risk estimates are expressed arespecial predictive or ‘oracular’ power’’ ([26], p. important factors that may significantly influence344). Indeed, the public’s perception of genetic individuals’ interpretations. Slovic et al. [33]testing has been found to be an overestimation of reported that the framing of risk information canits accuracy and its predictive power [26]. influence individuals’ perceptions and, conse-

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quently, their behaviour. In particular, they Related to this issue is the distinction madepointed out that several psychological elements, between individuals who have an external locusincluding individuals’ preconceptions (and mis- of control and those who have an internal locusconceptions) and previous experiences, will in- of control [42]. The latter may be far morefluence how they interpret risk information. For inclined to believe that, regardless of their biolo-example, they pointed to the presentation format gy, they can manipulate their environment inof the risk information as an important consid- their favour. The former may believe that theireration. Informing an individual that he or she genetics is their destiny. This distinction may behas a chance of a particular occurrence of 1.3 in similar to the one made by Alker [43], in which10 000 compared to the general population’s he noted that some individuals are achievement-chance of 1 in 10 000 is not particularly impres- oriented while others are failure-threatened.sive to most people. However, if the format was Some individuals believe they can ‘beat’ thesuch that the individual was informed that his or odds, while others believe they always will fail.her risk is 30% greater than that of the average The cognitive biases that influence one’s un-individual, the situation is likely to be seen as derstanding of risk should be balanced with the‘riskier’, although the two situations are equiva- consideration of the social biases that influencelent. Some researchers and practitioners are also an individual’s perception of risk. Contributingusing graphic displays of risk information, risk to these social biases are family history and thecomparisons, time intervals between expected degree to which one believes oneself and one’sharmful events (e.g., one death every four family members vulnerable [44]. Biases based onmonths to demonstrate a 1 in 1000 risk) and social factors are likely to be found amongrisk-factor information to enhance understanding cancer families and are worthy of consideration.of risk [34–39]. The effect of these strategies on Witnessing two sisters die from breast cancer, forthe perception of risk, especially as it relates to example, is a salient event that may affect one’srisk for cancer, still remains unclear. ability to make judgments about risk informa-

Risk information is not provided in a clinical tion. It is clear that individuals who considervacuum, but is framed by cultural assumptions themselves to be at high risk for cancer becausethat may be inconsistent with genetic knowledge. of their family history do not view risk inFor example, prior to any communication with hypothetical terms. Instead, the cancer risk is aprofessionals, individuals are likely to hold reality with social and familial meanings thatbeliefs about their risk status. These beliefs will inform the understanding of risk estimates. Riskact as the reference point for the interpretation information, from this perspective, is fit into aof the professional’s offered estimate of risk and well-established causal schema. Research haswill shape the individual’s subjective interpreta- demonstrated that the organization of cause–tion of the information provided [32,40]. Moran effect relations using schemas enables people to[41] suggested that the characteristics of one’s achieve coherent pictures of the events thatgeneral outlook also influence how risk infor- surround them [45]. For example, individualsmation is interpreted. Individuals described as may believe that they will develop cancer be-pessimists may inflate the significance of a par- cause they come from a cancer family. In theticular risk value. Pearn [40] explained that, face of contrary information suggesting they arealthough the risk may be relatively low, these not at high risk, some individuals may be reluc-individuals believe that their ‘bad luck’ greatly tant to revise rich and coherent schemas.increases the risk—‘‘almost in a metaphysical Individuals’ interpretations of risk informationway’’ (p. 132). These people tend to ignore or are also modified by their understanding of thedisregard the random nature of genetic disease. general population’s risk [40]. People withThe converse of this general way of responding is friends and associates with histories of particularthe optimist who believes that his or her real cancers may correctly or incorrectly believe thatpersonal risk is lower than that estimated—‘‘it they are predisposed to genetic disease depend-can’t happen to me’’. ing on their understanding of the general risk

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faced. Other factors that may influence the ported to vary in relation to a three-phaseinterpretation of risk information include tempo- process of developing a personal view of risk:ral factors, intelligence, gender, cultural or ethnic living the breast cancer experience of the rela-identity, and religiosity. Although these factors tive(s), developing a risk perception, and puttinghave not been well explored, it seems reasonable risk in its place [13]. This suggests that someto believe that people will respond differently to flexibility in meeting information needs is neces-genetic information depending on the stage in sary.life in which it is received. Attitudes to infor- Some authors have argued that informationmation vary with moods, with readiness to re- should be presented in particular ways andceive, and with other situational factors. Intelli- tailored to individuals’ coping styles [49]. Forgence is an important factor in interpretation of example, it has been suggested that risk esti-risk information; what is at issue here is the mates be given in percentages (not as relativeindividual’s ability to comprehend the mathe- risks or in qualitative terms) [50,51], and thatmatical symbolism of risk, or, at least, the rela- shorter-term age-related estimates may be oftive order of the magnitude of risk [40]. most value (to avoid using cumulative lifetime

The challenge for health professionals is to risk estimates) [52].translate the epidemiological notion of risk as a Two factors appear to be important to success-technical, objective, or scientific phenomenon ful communication: (a) individuals’ affective re-into the language of the lay public, so consumers sponses to risk information and (b) com-can incorporate the information into their subjec- municators’ skill and sensitivity in disclosingtive, lived experience [24,46]. To the clinician, results. Affective responses, often observed inrisk is something an individual assumes or shoul- patients who have a family history of cancer (e.g.,ders and addresses as a sign of potential future fear, low self-esteem, anger, guilt, grief, anddisease, which can be prevented, treated, or embarrassment), have been recognized for somecured. To the individual, risk becomes an ex- time as potential barriers in the process ofperience characterized by concern for impending understanding risk [53,54]. Experiences of in-illness, and is viewed as a symptom of future dividuals with hereditary cancer syndromes seemdisease for oneself or one’s family. to bear this out [55]. During open-ended inter-

views, subjects revealed that it took a long timeto understand the diagnosis and, for some, it

3. Communicating cancer risk information: required repetition of the information from awhat is required? variety of sources. The time needed to process

information may be related to the need to adjustClinical observations and research support a to affective responses that arise in the context of

comprehensive approach to the communication risk notification [56] or to the need to reorganizeof risk beginning with information on the risks, causal schemas.benefits and limitations of susceptibility testing to The sensitivity and interpersonal skills of thehelp individuals decide if they indeed want to communicator /counsellor have been recognizedproceed with testing [47]. When offered risk as important components of effective risk com-information, women at risk for breast cancer munication. Sensitivity to different interpreta-have been observed to want more than a risk tions of health as well as communication andfigure. They tend to want background informa- decision-making patterns that reflect ethno–cul-tion about biology, cancer, non-genetic risk fac- tural differences are essential in genetic counsel-tors and emotional reactions to cancer, and want ling [57]. The language used in explanations canhelp in understanding how they might use the influence comprehension and in some instancesinformation to make decisions about screening may stigmatize a client (e.g., words such asoptions and treatments ranging from biopsies to ‘mutant’ or ‘defective’) [57]. It also has beenprophylactic mastectomies [48]. The timing of recognized that communicators need to be skil-each of these information needs has been re- led in giving positive results and providing emo-

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tional support [47]. In one study, women at risk offer interesting insights about communicatingfor breast cancer viewed videotapes of an on- risk information. In particular, the findings sug-cologist presenting mammogram results [58]. gest that people are unfamiliar with uncertaintyWomen who received the results of a mammog- in risk assessment, that graphics may help peopleram from a ‘worried’ physician, compared to recognize uncertainty, that risk attitudes affectthose who received results from a ‘non-worried’ perceptions of uncertainty, and that discussion ofphysician, recalled significantly less information, uncertainty, viewed by some as a sign of honesty,perceived the clinical situation as significantly is viewed by others as a sign of incompetence.more severe, reported significantly more anxiety, Both health care professionals and consumersand had significantly higher pulse rates. need to exercise caution about cancer predictive

testing. At this time, the best advice to giveprofessionals is to be clear and honest about the

4. Communicating risk when it is error prone limitations of testing and the possibility of error.Consumers must be informed that genetic testing

There are several aspects to predictive genetic is an inexact science and that there is sometesting that produce uncertainty or error. For degree of uncertainty present in all that is toldexample, variations in modes of inheritance, them. This approach requires a radical departureinteraction between environment and genes, re- from the commonly held belief that medicalliance on DNA markers prior to identification science is indubitable.and cloning of the specific gene, errors infamilies’ beliefs about their biological kinship,and variations in quality control and accuracy 5. Sequelae of communicating risk informationwithin laboratories all compound the probabilis-tic nature of screening results [26,59]. Information about risk can be important in

How then should tests results be communi- motivating individuals to engage in cancercated to concerned individuals? David Rimoin, a screening behaviours. Yet serious concerns havemedical geneticist at Cedars-Sinai Medical Cen- been raised about the psychosocial sequelaeter in Los Angeles and President of the Ameri- associated with cancer risk information [62].can College of Medical Genetics, argued that, to Issues and questions have primarily been basedensure that false diagnoses and false reassurances on anecdotal evidence and speculation, in theare not made, genetic testing should not be made absence of a large number of well designedavailable through general practitioners [60]. Yet, empirical studies to document psychological re-if this recommendation is to be met, how will the actions to genetic testing (for reviews see Croyleapparent demand for genetic risk information be and Lerman [63] and Macdonald et al. [64]).addressed in a timely and cost-effective manner? Anecdotal and qualitative data from familyAt minimum, health care professionals must members with hereditary cancer syndromes re-understand the limitations and pitfalls inherent veal themes of fear, anxiety, and apprehensionin molecular research to accurately communicate about cancer risk [65–69]. A preliminary exami-the uncertainties of genetic risk to their patients. nation of short-term psychological distress

Few studies have focused on communication of among women tested for the BRCA1 geneuncertainty. One notable exception is the work mutation associated with high risk of breast andof Johnson and Slovic [61] who, in a series of ovarian cancer indicated that distress is higheststudies, examined individuals’ abilities to assess among mutation carriers with no history ofrisk information. The investigators used a set of cancer or cancer-related surgery [70]. Relativelysimulated news stories to determine if the lay high levels of distress among these womenpublic notice ranges of risk estimates and occurred despite the provision of pretest andwhether these ranges affect perceived risk. Al- posttest counselling. In some cases, problems ofthough not specific to cancer risk, the findings denial and depression may require extensive

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counselling and psychiatric consultation [68]. guilt about transmitting the risk to one’s childrenSome clients reported that initially they felt a [62]. A study using in-depth, unstructured inter-sense of disbelief upon receiving the risk in- views of thirteen individuals with hereditaryformation; it took them a long time to under- cancer syndromes found that many individualsstand the diagnosis, and some believed that a voiced concern for the family rather than forsupport group would have been helpful [55]. themselves [55]. As one woman stated, ‘‘I would

Individual differences in coping styles seem to rather lose my other breast than have it happeninfluence emotional reactions to receiving her- to them’’ [ [55], p. 778]. It is interesting to noteeditary cancer risk information. Wardle et al. [71] that such comments reveal a poor understandingfound that among women screened for ovarian of the statistical probability of occurrence. Manycancer, those receiving a negative result ex- Huntington Disease families have erroneouslyperienced relief and reassurance. Among women interpreted risk estimates as applying to thewith positive results, distress was observed only entire family, rather than to each individual. Forfor those with information-seeking coping styles. example, if a family is told that there is a 50%More recently, Lerman et al. [8] found that chance that a child is a carrier, they may believewomen with information-seeking coping styles that, when one child is confirmed to have thewere significantly more likely to anticipate nega- mutation, his or her sibling will not have it (W.tive psychological consequences of genetic test- Mckellin, personal communication, February 23,ing than other high-risk women. This result 1997).compares to findings of Schwartz et al. [11] whoreported that women who had high monitoringneeds (information seekers) were more likely to 6. Current status of communication strategiesperceive themselves to be at high risk for ovariancancer, and had higher levels of intrusive There is great effort underway to developthoughts and psychological distress than those effective communication strategies for counsel-who were blunters (distracted themselves or ling related to cancer risk [49,55,77–81]. Guide-avoided threat-relevant information). One study lines and policies for genetic services and thedemonstrated that among women at risk for dissemination of health-risk information arefamilial cancer the provision of breast cancer risk being developed by groups in Canada (e.g.,information is associated with general distress for Canadian Collaborative Group for Cancer Ge-information seekers [72]. Although information netics), the United States (e.g., Cancer Geneticsseekers have been shown to benefit from in- Studies Consortium; the National Institutes offormation in other medical contexts [73,74], the Health Task Force on Genetic Testing), and theconditions under which cancer risk information United Kingdom [82,83]. American companiesshould be provided to enhance their responses such as OncorMed, Myriad Genetics and theare unknown. Both individuals’ desire for in- Genetics and I.V.F. Institute are beginning toformation and the level at which they choose to provide protocols and materials to physicians,control the decision-making process should be counsellors, and patients [59,84,85]. To a limitedconsidered in risk counselling [75]. extent, researchers have begun to evaluate the

Communication of cancer risk can also have effectiveness of selected approaches. This workserious implications for family relationships has provided important foundations for the de-[63,64,76], however, nearly all of the empirical velopment of familial cancer risk communicationliterature concerning the impact of testing solely strategies.addresses the individual [63]. For example, nega- Position papers and policy statements havetive test results may not result in expected relief been produced by the National Breast Cancerif one or more siblings receive positive test Coalition [86], the Council for Responsible Ge-results. And, alternatively, a positive test result netics [87], the American Society of Clinicalmay have the additional psychological burden of Oncology [88], the National Action Plan on

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Breast Cancer [89], and the American Society of disease aetiology and morbidity have in relationHuman Genetics [90,91]. For example, the to communication of risk is still unclear. Mac-American Society of Clinical Oncology recom- donald et al. summarize a recommended proto-mends that individuals receiving genetic testing col as follows:be counselled before and after on the potentialbenefits and risks of early detection and preven- The protocol is designed to ensure informedtion interventions, which may be efficacious but consent for testing, to minimize negative psy-are largely unproven. The US National Action chological sequelae and to promote surveil-Plan on Breast Cancer recommends that people lance and early detection practices by consum-must be provided with comprehensive informa- ers and the providers. Fulfilment of thesetion about surveillance and treatment modalities criteria requires education of consumers, as-and their respective risks and benefits. They also sessment of psychological readiness to receivesuggest that disclosure of such information test results, full disclosure of all relevant in-should be provided within a multi-disciplinary formation in a comprehensible fashion, disclo-approach and minimal standards of care should sure of the potential benefits and risks ( psycho-be established. Additionally, key organizations logical, social and economic) of risk-informa-such as the American Society for Human Ge- tion giving, presentation of medical alterna-netics and the National Breast Cancer Coalition tives, and follow-up of individuals and theirargue strongly for the maintenance of suscep- families. Such a protocol would be resourcetibility testing within the confines of controlled intensive, and modifications may be required toresearch settings at least ‘‘until the true risk of produce an acceptable cost-benefit analysis.the mutation is determined and appropriate ([96], p. 41)counselling and intervention guidelines [are] es-tablished’’ ([84], p. 1033). A review of protocols from current genetic

Communication of genetic risk information testing programs for cancer revealed the de-often is equated with genetic counselling, and velopment of several potentially useful strategiesthis trend is also apparent with respect to familial related to the fulfilment of these criteria. Forcancer. Comprehensive clinical models recom- example, the research protocol related to cancermended for the operation of familial cancer predictive testing at the Fox Chase Center re-programs generally establish genetic counselling flects an integrated, multi-disciplinary, multi-as the foundation of multi-disciplinary services phased process [97,98]. What is noteworthy aboutthat encompass complete medical assessments, this protocol is that it is tailored to identifiedfamily history taking (pedigree analyses), genetic patterns of cancer (i.e., hereditary or familial vs.testing, disclosure of test results, psychological sporadic), individual circumstances, and clientcounselling, and educational components related preferences related to disclosure of results. Theto prevention strategies [92–95]. The primary, providers offer several opportunities for patientsunderlying intent of genetic counselling appears to reconsider whether they want to know theto focus on information dissemination to ensure results. To assist clients in determining the po-individuals can make informed decisions about tential impact of receiving risk information, theparticipation in testing, screening, or prevention, protocol incorporates predisclosure role playand that they understand test results. exercises that encourage clients to appreciate the

In a recent review, Macdonald et al. [96] noted reality of the impact of the results on themselvesthat, despite differences in disease aetiology, and their family members. Both short- (one tomorbidity, and mortality, researchers involved in two weeks postdisclosure) and long-term follow-genetic testing for cancer have recommended up (at six and twelve months) is provided. Thethat protocols be based on those developed for protocol is exemplary in that it is flexible andMendelian late-onset disorders such as Huntin- tailored, and for these reasons, can serve as agton Disease. The importance that differences in model for others.

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As part of the Massachusetts General Hospital out in the health-care relationship. Rather thanComprehensive Breast Health Center Program, recommending an entirely non-directive ap-MacDonald [99] developed a counselling format proach, they advocate an approach based onfor use in the hospital’s Breast Cancer Risk partnered decision making in which the profes-Assessment Program. The format is comprehen- sional engages with the client to achieve ansive and includes rapport and trust building, understanding of the meaning of the genetic risk.history taking, explanations of risk, and risk Unlike approaches that tend to distance theassessments. Efforts are made during counselling client from the professional, they argue for ato help clients put risk in perspective and to relationship of mutual responsibility.understand the meaning of risk estimates in Alternative models of genetic counselling mayrelation to other life events. Special attention is be useful in the context of communicating famili-paid to the imprecision of risk estimates and al cancer risk information [104]. The mutual-counsellors are instructed to emphasize that risk participation model is characterized by a part-of developing disease is not the same as risk of nership between the counsellor and the patientdying from the disease. Visual aids have been where they jointly participate in decision making.developed to assist counsellors in communicating In the life-history-narrative model, clients’ storiesrisk estimates. What is noteworthy about this are used to reintroduce the kinship network as aprotocol is its detailed description concerning the basis for understanding views of ‘proneness’ tocommunication of risk estimates, particularly hereditary diseases. The counsellor’s main task istheir error-proneness. to hear the stories clients tell and to recognize

In the majority of the protocols reviewed, the and value clients’ beliefs and perceptions.predominant model of genetic counselling rec- Through this process, clients articulate how theyommended and used appears to be based on a construct their understanding of risk.non-directive approach. This approach is based What often is missing from descriptions andon a principle of autonomy, in which clients’ recommendations about genetic services relatedpreferences take precedence. Clinicians allow to familial cancer is a clear description of exactlyindividuals to make their own decisions without how risk information is communicated. Thethe interference of professionals. Critics of the focus on clinical models of genetic counsellingnon-directive approach have drawn attention to has limited the extent to which genetic cancerthe limits it places on counsellors’ abilities to give risk communication may occur in other contextsinformation and to facilitate decision making (e.g., in homes), with individuals other than[100], particularly in the context of diseases such health professionals (e.g., clergy or lay experts),as cancer [101]. In clinical practice, rather than or with other than one-to-one counselling ap-being non-directive, counsellors are often proac- proaches. Shrinking health care budgets aretive in suggesting and encouraging behavioural unlikely to afford expensive one-to-one counsel-changes that may modify the risk of developing ling services for everyone interested in learningcancer [56]. In addition, primary care practition- more about a possible familial risk for cancer. Iners, who work to establish long-term relation- fact, Taylor and Kelner [46] advocate that physi-ships with patients that are characterized by cians need to adopt a family-based approach totrust, have found the goal of non-directiveness in genetic counselling and testing.genetic counselling impossible to achieve [102].

Rather than using an approach solely based onthe principle of autonomy, Dosseter and Briggs[103] hold that the field of genetic counselling 7. What works in practice?should be based on principles of autonomy andrelationality. They recommend an approach The first prospective randomized trial of breastgrounded in respect for autonomy, while em- cancer risk counselling for women with familyphasizing the role of relationality as it is played histories of breast cancer has been published

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recently [105]. Although the breast cancer risk 8 creation of a registry for studies of familialcounselling protocol did not include genetic breast cancertesting, the results are relevant to this review. 8 evaluation of different counselling approachesUsing a combination of scripted oral presenta- 8 examination of knowledge and responses totions and visual aids, the risk counselling ap- genetic screening in a Health Maintenanceproach included: (a) discussion of individual Organization populationfactors associated with cancer risk; (b) provision 8 development of knowledge of health careof individualized risk estimates for breast cancer providers’ and patients’ perceptions of cancerbased on the risk estimate model developed by 8 evaluation of how knowledge of genetic testGail et al. [106]; (c) recommendations for regular results influences consumer behaviours andmammography and clinical breast examination; attitudes regarding life insurance coverageand (d) instruction in breast self-examination. 8 development and evaluation of a program toUncertainties related to the risk estimates were train community-based oncology nurses toemphasized and both absolute risks (percentage conduct familial cancer risk counsellingprobabilities) and relative risks (risk ratios) were 8 development and evaluation of familial cancerpresented. Participants also received information risk assessment programs, andin printed form. To evaluate the psychological 8 review of the dissemination of risk informa-benefits of this approach, women who received tion by health care providers and their knowl-counselling were compared to a control group edge, attitudes, and beliefs about breast,who received general health information. Among ovarian, and colon cancer risk information.women with less formal education, those whoreceived the breast cancer risk counselling were A team of researchers in Canada is evaluatingobserved to report significantly less breast can- a substitute for individual counselling for her-cer-specific psychological distress at the three editary breast cancer in the form of an infor-month follow-up, compared to women in the mation aid (workbook and audio tape) that cancontrol group. In contrast, no significant changes be used with women identified to be at moderatein distress were observed among women with at risk. Outcomes to be measured include psycho-least some college education. Contrary to the logical sequelae, knowledge of cancer risk fac-hypothesis, changes in women’s perceptions of tors, participation in screening options, and satis-their cancer risk did not alleviate the distress faction with the format in which the informationthey experienced. was provided. An evaluation of a group educa-

Evaluation of strategies to communicate tion and support program for women with familyfamilial cancer risk is clearly necessary and there histories of breast cancer to provide informationhas been some response to this obvious need. A about breast cancer risks, address emotionalsearch of the World Wide Web database on issues, and improve prevention and screeninggrants given by the US National Institutes of habits in these women has also been fundedHealth revealed that close to three dozen studies recently in Canada.related to communication of cancer risk infor- Providing opportunities for individuals to im-mation currently are funded. These projects are agine their future, as an aid to personal decisionaimed at filling the gaps previously identified, making in the context of genetic risk is theincluding: subject of exploration by a group of researchers

in Belgium [107]. There is work underway in8 development and evaluation of multiple for- Britain to formally evaluate the practice of

mats to educate individuals about cancer risk cancer family history clinics [83] and developand genetic testing information (e.g., comput- educational videos to assist women in determin-er-based education, tailored information ma- ing if their family history places them at higherterials, peer educators, and interactive mul- risk for breast cancer and to understand thetimedia educational programs) implications of genetic testing.

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8. Recommendations between different professions need to bearticulated to provide a foundation for educa-

The research literature and the experience of tional initiatives to ensure practitioners areexperts in the field point to several recommenda- adequately prepared.tions for the enhancement of knowledge andpractices related to communicating cancer riskinformation. 9. Conclusion

8 A variety of innovative, easily accessed and Many questions remain unanswered abouteconomically feasible communication strate- how to sensitively and effectively communicategies need to be developed and tested to meet cancer risk information to individuals andinformation needs of the general public. The families at risk for familial cancer, as well asincreasing demand for cancer risk information those who are not. There are no clear directionswill not emanate solely from high risk about how to ensure that the probabilistic naturefamilies. Individuals and families who are of risk estimates is accurately communicated andtouched by cancer (e.g., have one relative with understood. Additionally, there is uncertaintycancer) may also be concerned about risk and about how to sensitively communicate the error-interested in this information. proneness of genetic tests. If clients are to be

8 Although informed consent must be ensured fully informed about their test results, healthprior to genetic testing for cancer, adhering to professionals must address these issues. Thethis principle is difficult, when researchers and strategies currently used to communicate cancerpractitioners are unable to predict all poten- risk have not been adequately evaluated, makingtial implications of genetic testing for cancer. it difficult to determine which strategies result inIt is likely, therefore, that protocols for in- benefits for clients and which strategies placeformed consent will need to be revised con- them at further jeopardy. Specifically, the se-tinually as new information becomes avail- quelae of providing familial cancer risk infor-able. mation to individuals are only beginning to be

8 Disclosure of risk estimates for cancer should understood. Much of this knowledge is acquiredbe tailored to the individual’s affective state from the experiences of research programs thatand information-processing preferences, and have the resources to offer comprehensive, mul-should consider pre-existing perceptions of ti-disciplinary models of service. The extent torisk. Risk communication must always be which this experience can be generalized toaccompanied by appropriate information broad-based health care programs that mustabout surveillance and early detection of compete for scarce resources remains unknown.disease. Without this information, unnecessary With these current gaps in knowledge, the chal-anxiety may be created and a sense of help- lenge to plan effective programs to meet thelessness instilled. needs of individuals and their families is

8 All health professionals need to be involved in monumental.the communication of risk information. While It is timely to consider the uncertainties intrin-many successful genetic testing programs in- sic to the field of familial cancer risk communica-volve specialized multi-disciplinary teams, it is tion. There is every indication that the demandclear that health professionals working outside for cancer risk information and genetic testingof these teams also have a role to play in the will continue to grow. Rather than responding tocommunication of risk information. For exam- this demand on an emergent basis, researchers,ple, primary care physicians, genetic counsel- policy makers, health professionals, and thelors, and public health nurses will all have public have the opportunity to take stock of thedifferent roles. These roles and respon- situation and to consider the future for familialsibilities at different levels of practice and cancer risk communication. Rather than being

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[11] Schwartz MD, Lerman C, Miller SM, Daly M, Masny A.overwhelmed by the uncertainties, stakeholdersCoping disposition, perceived risk, and psychologicalare advised to consider the challenges that mustdistress among women at increased risk for ovarian

be met. cancer. Health Psychol 1995;14:232–5.[12] Chalmers K, Thomson K. Coming to terms with the risk

of breast cancer: perceptions of women with primaryrelatives with breast cancer. Qual Health ResAcknowledgements1996;6:256–82.

[13] Chalmers K, Thomson K, Degner LF. Information,Funding for this project was made available support and communication needs of women with a

through a grant from the National Cancer Insti- family history of breast cancer. Cancer Nurs1996;19:204–13.tute of Canada. Support from the National

[14] Luker KA, Beaver K, Leinster SJ, Owens RG. In-Health Research and Development Programformation needs and sources of information for womenthrough a National Health Research Scholarwith breast cancer: a follow-up study. J Adv Nurs

Award to Dr. Bottorff and the Medical Research 1996;23:487–95.Council through a Postdoctoral Fellowship to Dr. [15] Waxler-Morrison N, Doll R, Hislop TG. The use of

qualitative methods to strengthen psychosocial researchRatner is also acknowledged.on cancer. J Psychosoc Oncol 1995;13:177–91.

[16] Colditz GA, Willett WC, Hunter DJ, Stampfer MJ,Manson JE, Hennekens CH, Rosner BA, Speizer FE.

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