Journal of Genetic Counseling, Vol. 6, No. 3, 1997

"Talking About Chance": The Presentation of Risk Information During Genetic Counseling for Breast and Ovarian Cancer Nina Hallowell,1'2 Helen Statham,1 Frances Murton,1 Jo Green,1 and Martin Richards1

Using observations, questionnaires, and interviews, this study describes the formats used to present risk information during genetic counseling for breast and ovarian cancer. Counselees' preferences for different types of qualitative and quantitative presentation formats are also discussed. The data indicate that there is considerable variation in the presentation of risk information both within and between consultations. The counselees were positive about the way the counselors had described their risk. Seventy-three percent of the sample expressed a preference for risk to be described using quantitative formats, and there was little difference in the number who stated a preference for percentages, proportions, or population comparisons. Comparing preferred formats with those used in the consultations indicated that in over 40% of cases, risk information was not presented in the counselees' preferred quantitative format. This descriptive study raises questions about the presentation of risk information which warrant further research. KEY WORDS: risk; genetic counseling; breast/ovarian cancer.

INTRODUCTION The bulk of the research which has attempted to evaluate genetic counseling has concentrated upon outcomes, for example, counselees' post 1Center

for Family Research, University of Cambridge, Free School Lane, Cambridge CB2 3RF, U.K. Correspondence should be directed to Nina Hallowell, Center for Family Research, University of Cambridge, Free School Lane, Cambridge CB2 3RF, U.K.

269 1059-7700/97/0900-0269$12.50/1 C 1997 National Society of Genetic Counselors, Inc.

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counseling behavior or their retention or understanding of genetic information (see Kessler, 1990; Shiloh, 1996; Hallowell and Richards, 1997). This paper will focus upon one aspect of the process of genetic counseling which has been neglected (Kaback, 1994)—the presentation of risk information. Probabilistic information can be presented qualitatively (for example, the risk of X is high/low or likely/unlikely etc.) and/or quantitatively (for example, the risk of X is 70%, 7 in 10 or 6 to 1 etc.) during genetic counseling sessions. Given the reliance on risk discourse in medical consultations, individuals' understanding of both qualitative and quantitative risk expressions within medical contexts has been the focus of a great deal of research. Many studies have looked at medical practitioners' and lay individuals' understanding of qualitative expressions of health risks (Mapes 1979; Toogood, 1980; Bryant and Norman, 1980; Kenney, 1981; Nakao and Axelrod, 1983; Robertson, 1983; Kong et al, 1986; O'Brien, 1989; Shaw and Dear, 1990). This research reveals considerable inter- and intragroup variation in the understanding of these terms, which has led researchers to conclude that health risks should always be described using quantitative formats (with qualitative qualification) if possible. The rationale underlying their argument is that qualitative expressions of risk are inherently subjective and, therefore, may be understood differently by individuals. Numerical descriptions of risk, in contrast, are regarded as more objective, and as a result, are seen as more likely to be interpreted in the same way by patient and clinician. In other words, it is argued that the use of quantitative expressions of risk is less likely to result in the patient misunderstanding risk information. However, investigations of lay individuals' understanding of quantitative risk estimates following genetic counseling raise questions about the objectivity of numerical risk estimates. Studies which compare counselees' risk perceptions with their objective (numerical) risk (see Kessler, 1990, 1992 for reviews) indicate that there is a great deal of interindividual variation in the interpretation of numerical risk estimates and that counselees' risk perceptions often differ markedly from those of the counselors (or other professionals). In reviewing the literature, Pearn (1973) argues that an individual's perception of numerical risk estimates is influenced by both personal and situational factors, and consequently the understanding of quantitative genetic risks must be regarded as subjective. If it is accepted that- lay individuals' understanding of both qualitative and quantitative expressions of risk is subjective, then this raises questions about how risk should be presented during genetic counseling. One way in which this question could be explored would be to run a trial which com-

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pared the effect of different types of risk presentation upon counselees' understanding of genetic information or satisfaction with counseling. However, this type of study is inherently problematic because outlining methodological and conceptually adequate operational definitions of "understanding" and "satisfaction" is difficult, if not impossible (Hallowell and Richards, 1997). An alternative approach to this problem is to assess lay individuals' attitudes about, or preferences for, the presentation of risk information. Very few studies have attempted a systematic investigation of individuals' preferences for the different formats used to present risk information. Bloch et al. (1978) used interview and questionnaire methods to determine the presentation preferences of individuals who had attended genetic counseling in the past. They observed that individuals generally prefer to receive a quantitative expression of their genetic risk, although the respondents indicated that a qualitative expression of their risk will suffice if, and only if, it is impossible to provide a quantitative risk estimate. Shaw and Dear (1990) used vignettes to determine mother's preferences about the presentation of probabilistic information about the health of young children. They report that 59% of women who expressed a preference said they would like risks described numerically. There are, however, methodological problems with these studies. First, Bloch et al. report a very low response rate, only 36/133 (27%) of former counselees' responded to their questionnaire and only 7/24 (29%) agreed to be interviewed. Although they do not provide a reason for this poor response they note that the respondents had difficulties understanding their questionnaire. Second, one can question the salience of the hypothetical vignettes used in Shaw and Dear's (1990) study, given that most of the individuals within their sample had just delivered healthy babies. Finally, in both cases, the researchers only looked at the individuals' attitudes about the use of one type of numerical format—percentages (Bloch et al, 1978) or proportions (Shaw and Dear, 1990), thereby ignoring the fact that they may have preferences for particular types of quantitative formats. The latter criticism was addressed in the present study which investigated counselees' preferences for different types of qualitative and quantitative formats that may be used to describe risk. The data presented below were collected during a prospective study of women attending genetic counseling because of a family history of breast/ovarian cancer (Richards et al, 1995). In this paper, we will describe the presentation of probabilistic information during genetic consultations and the counselees' attitudes about, and preferences for, the different types of formats used to present risk information.

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METHODS Recruitment The participants were recruited from a well-established Cancer Family History clinic in Cambridge, England to which they had been referred because of a family history of breast and/or ovarian cancer. All women who were sent an appointment to attend the clinic between February 1994 and February 1995, who had not had cancer themselves, and who had not had genetic counseling for these cancers before, were sent a letter inviting them to take part in this study. Fifty-nine eligible women were approached, five did not reply and eight refused. The reasons given by those who declined to take part included a reluctance to have a researcher present during the consultation or an unwillingness to have their consultations, or interviews, tape-recorded. Forty-six women were recruited to the study. Sample Characteristics Demographic The mean age of the sample was 40 years (range 22-59 years, SD = 8.8). Forty-two women were married or living as married, three were divorced or separated, and one was not married. Twenty-three (52%) of the 44 women for whom data is available had completed their education by the age of 16, 11 (25%) by the age of 18, and the remaining ten (23%) had received education beyond the age of 18. Of the 45 women for whom data is available, ten (22%) were unemployed and 12 (26%) had worked at some time in a job with a medical connection (for example, doctor, nurse, or medical receptionist in a General Practioner's surgery). Cancer Family History Eighteen women (39%) attended the clinic because of a family history of breast cancer, 16 (35%) had a family history of ovarian cancer, ten (22%) had a family history which included both types of cancer, and two (4%) had a family history of breast and either uterine or stomach cancer. The 46 women reported a total of 132 female relatives affected by breast or ovarian cancer (mean 2.9, range 1-8) and a further 77 male and female relatives affected by other cancers. Only four women (9%) reported breast and ovarian cancers in paternal relatives, but only one of these had

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no maternal relatives with these cancers. The most commonly reported relatives affected with breast or ovarian cancers were: mother (32/70%), sister (14/30%), maternal grandmother (16/35%), maternal aunt (18/39%). Data Collection Telephone interviews were carried out during the week before the women attended genetic counseling. These interviews established preclinic risk perceptions and their expectations of counseling. The consultations were observed and tape-recorded and the letter summarizing the clinic discussion was obtained. Approximately 6-8 weeks later, the counselees' attitudes and preferences regarding the presentation of probabilistic information were established in a postal questionnaire and during face-to face interviews. The format of these interviews was semistructured and included questions which addressed the following themes: experiences of counseling, family history, risk perception, risk management, understanding of inheritance, and general health behavior. The interview structure and, in some cases, the wording of the questions was dictated by counselees' spontaneous responses. All postclinic interviews took place in the counselees' homes and were tape-recorded with their consent. A follow-up telephone interview was carried out 12 months later, but is not reported here. All recordings of the counseling sessions and interviews were transcribed. Three women failed to return the postcounseling questionnaire. One woman declined to be interviewed postclinic and in a further five cases we deemed an interview to be inappropriate, for example, because of a recent bereavement. This paper is based on data collected in the consultations (n = 46), questionnaires (« = 43), and face-to-face interviews (n = 40). Data Analysis Transcripts of counseling sessions were coded manually using the following categories: agenda setting, drawing family pedigree, description of mendelian genetics, risk presentation (the different types of qualitative and quantitative formats used), discussion of risk management options (screening, surgery), Hormone Replacement Therapy, discussion of cancer genetics research and genetic testing, epidemiological information, and other (for example, discussion of causes of cancer, tamoxifen, cancer treatment). Atlas-ti (Muhr, 1994), a qualitative data analysis package, was used to analyze the interview transcripts. These were initially coded according to predefined categories based upon the interview questions and recurring themes were then identified within each category (Pope and Mays, 1995).

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The questionnaire data reported here were generated using forced-choice items, wording and response options are provided in the text. Statistical Package for the Social Sciences was used to provide a descriptive statistical analysis (percentages and frequencies) of the questionnaire responses.

RESULTS The Presentation of Risk Information During Genetic Counseling The clinic we observed was run by two counselors, both of whom are oncologists working in the field of cancer genetics research. Twenty-six women were seen by a female counselor and the remaining 20 by a male counselor. In every session, the counselor initially determined the counselee's agenda, drew the family tree, estimated the counselee's risk, and discussed appropriate risk management. Discussions of prophylactic surgery, HRT, genetic research, cancer research, the epidemiology of cancer etc. varied between sessions. The risk estimations provided during the consultations were calculated on the basis of the family history presented by counselees. These probabilities were computed according to the formula outlined by Claus et al. (1990). As none of the women in the study (or their relatives) had either had linkage or direct-mutation testing, both counselors stressed that the risk figures they provided were only estimates, and that risk could only be predicted more accurately if, and when, a woman's carrier status was confirmed. Linkage or diagnostic testing was not offered to any of the participants during the course of this study. In 13 (28%) cases, the counselors considered that the cancers described by counselees were unlikely to have been caused by a genetic predisposition. Seven of these women did not receive a numerical description of their cancer risk, while the remaining six women were given a numerical estimation of risk which was based upon epidemiological data associated with nongenetic risk factors. In two cases, the counselors were unsure about whether the cancers in the family were caused by the presence of a dominant gene or not, so they provided these women with two different calculations of the probability of developing cancer, one based upon nongenetic epidemiological data and one calculated as if the family history resulted from a genetic mutation. In the remaining 31 (82%) consultations, the counselors said that the family histories could be indicative of the presence a genetic mutation in the family. With one exception, all received a quantitative estimation of their risk of developing cancer which was calculated according to the Claus (1990) model.

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The counselors used both qualitative and quantitative formats to describe the women's personal risk of inheriting a genetic mutation or developing cancer. Six (13%) women were only given a qualitative estimate of their risk of developing cancer (cancer risk) for example, "... a little higher, but I doubt enormously high" (gc45). Thirty-eight (83%) counselees received quantitative estimations of their risk of developing breast/ovarian cancer and of these, 31 (82%) individuals were also given estimations of the probability that they had inherited a gene mutation (genetic risk). Finally, two (4%) women were given a qualitative estimate of their chances of developing cancer in addition to a quantitative estimate of inheriting a genetic mutation. The counselors presented risk information using five different types of quantitative formats: proportions, percentages, ratios, odds against, and as comparisons with population risks (see Table I). All these formats, with the exception of ratios were used to describe the risk of developing cancer. The risk of inheriting a genetic mutation was described using proportions, percentages, and ratios. Apart from the fact that only the male counselor presented risks as odds against, both counselors used all of the aforementioned formats when describing risk. As this table indicates, there was a great deal of variation in the way counselors presented risk estimates. The risk of developing cancer was described using a single quantitative format in 19 (50%) consultations, and two or more quantitative formats in the remaining 19 (50%). The most frequently used combination of formats, by both counselors, was percentages plus proportions 16 (42%). A single quantitative format was used to Table I. Frequencies of the Counselors' Use of Different Types and Combinations of Quantitative Formats When Describing Risk Information Cancer risk Format Percentages (e.g., 50%) Population comparison (e.g., twice population risk) Proportions (e.g., 1 in 4) Odds against (9 to 1 against) Ratio (e.g., 50:50) Percentages + population comparison Percentages + proportions Percentages + proportions + population comparison Percentages + proportions + ratio Percentages + ratio Percentages + proportions + odds against Percentages + population comparison + proportions + odds against

Genetic risk

n = 38

(%)

n = 33

(%)

11 2 4 2

(29) (5) (11) (5)

(27)

2

(5)

9 3 8 3 4 6 -

3

(8)

-

3 10 1

(8) (26) (3)

-

(9) (24)

(9) (12) (18)

-

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describe genetic risk in 20 (61%) consultations and more than one format was used in 13 (39%) consultations. Percentages plus ratios was the most frequent combination for describing genetic risk (10, 30%). Both counselors gave quantitative risk estimates of developing cancer for different time periods. Thirty-five (92%) of the counselees were given a lifetime risk, 13 (34%) were given their risks per decade, three (8%) were given risks per year, and six (16%) were given an estimate of their risks by a certain age. As Table II indicates, in 22 (58%) consultations, counselees were only given a lifetime risk of developing cancer. With the exception of three (8%) other consultations, risks for different time periods were always presented in combination with lifetime risks. The lack of standardization in the presentation of risk information was further revealed once these two types of data, ie., the different presentation formats and different time periods, were combined. As Table II demonstrates, in 11 (29%) consultations, counselees received a risk estimate which used a unique combination of presentation formats and time periods. The presentation of risk did not appear to be related to the counselees' estimated risk in any obvious way. Both high- and low-risk women received risk descriptions which used similar combinations of formats and time periods. For example, one woman whose risk of developing ovarian cancer was described as "not a terribly high chance" (i.e., 7% lifetime risk ) received risks by a certain age, risks per lifetime, decade, and year using a combinations of percentages, proportions, odds against, and as a population comparison, while another who was estimated as having a relatively high risk (33% lifetime) of ovarian cancer received the same combination of time periods and formats, although she did not have her risk described as a population comparison. Finally, 28 (61%) of the women were told the population risk of developing breast and/or ovarian cancer. In every case this risk was described as a proportion (for example, 1 in 12). Counselees' Attitudes About the Use of Quantitative Risk Estimates During the Consultation Forty-three (93%) women completed a questionnaire 6-8 weeks after they had attended counseling. The respondents who received a numerical estimation of their risk during the consultation were asked "What do you think of using numbers as a way of describing your chance of developing cancer?" (see Table III). With the exception of one individual who indicated that the counselor's use of numbers was confusing, all the respondents viewed the use of numerical risk estimates as helpful or informative.

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Hallowell, Statham, Murton, Green, and Richards Table III. Attitudes to the Use of Quantitative Estimations of Cancer Risk During Genetic Counseling Sessions

n

(%)

What do you think of using numbers as a way of describing your chance of developing cancer? (tick all that apply): Makes it easier to understand your own situation Meaningless Confusing Informative Adds nothing to what you are told

28 — 1 15 —

61 2 33

Those who had indicated that the counselor had not used numbers during their counseling session were asked "Would numbers have made it easier to understand your chance of developing cancer?" Of the eight women who reported that they had not received numerical estimations of risk, only two indicated that a quantitative estimation of risk would have made it easier to understand their situation, three said no, two said they did not know, and one failed to answer. Forty women were interviewed following genetic counseling. Although the interviews did not deliberately set out to establish counselees' attitudes about the presentation of risk information, these were spontaneously expressed in 29 interviews during discussions of the women's experiences of counseling. Twenty-two women described the use of quantitative formats positively, while four found the counselors' use of numerical risk estimates confusing, and three said that the numbers they received in counseling were not important. A recurring theme throughout these interviews was that quantitative descriptions of risk helped to clarify the counselees' situation by making things more "black and white." Women who had received a quantitative risk estimate, as well as those who had not, perceived numerical descriptions as clarifying risk both for the self and for others. Ten women said that numerical risk estimates clarified their perception of their risk, for example: I: So did that [receiving a quantitative risk estimate] reassure you?..... GC13: Yes, I wasn't worried before I went, but I feel more in control, its less guesswork now, which I found very helpful, you know, it makes it all more—I wasn't troubled at all, but it's tidied up things and I can refer to it, to my family, much more factually and less dramatically.

Similarly, four of those who had not received a quantitative description, said that a numerical description "would have made it more tangible" as

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their risk would be "kept in proportion." Five women said that having a numerical risk estimate to refer to was helpful when making decisions about future actions, for example: I: You've said numbers were helpful. GC11: Well, I have an analytical mind and I like to know these things so that I can go and think about it and decide what I am going to do based on it.

Three women also talked of the role played by numerical risk estimates in clarifying their situation for others. In other words, having a numerical risk estimate made it easier for a woman to explain her inherited risk to other family members and friends. GC22: Numbers to me don't really mean much but it's handy to have that in case somebody says to you what are your chances? And you can give them a quick answer instead of getting all long drawn out...

However, not everyone considered the clarity imparted by the counselors' use of numbers as positive. GC18: I think, I am not sure that percentages are the best way really. I mean it's perhaps too black and white. Something a bit vaguer might be a bit gentler and easier to....I'm not that keen on figures. I think words are kinder.

Although both counselors went to great lengths to stress that the probabilities they used to describe risk were only estimations, only three women maintained a degree of skepticism about the use of quantitative risk estimates, arguing that although numerical descriptions of risk made things clearer, statistics involved an element of guesswork and so could not be relied upon. Counselees' Preferences for the Formats Used to Present Risk Information The counselees' preferences for the presentation of risk information were established in the questionnaire. In response to the question "People can be told about their chance of developing cancer in words or in numbers. Which would you prefer?" the majority of respondents 34 (80%) indicated that they had a preference for the type of format used to present risk information (Table IV). The counselees were then asked to indicate which particular types of qualitative and quantitative formats they would prefer counselors to use when talking about risk (see Table V). 39/41 (95%) respondents stated that they had a preference for particular qualitative formats and 42/43 (98%) individuals expressed a preference for particular quantitative formats.

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Table IV. Counselees' Preferences for Different Types of Cancer Risk Presentation by Types of Format Used in the Consultation Format used during consultation

Preferred Format Words Numbers Both words and numbers No preference

Total

Words (n = 7)

Numbers (n = 35)

n = 42

(%)

2

1 9 18 7

3 9 22 8

7 21 52 19

4 1

Preferred formats were compared with the formats used during the consultation. This comparison revealed the existence of three different groups: those who preferred the format(s) that had been used during their consultations (15/41, 37%), those who preferred a different format(s) (19/41, 45%) and those who stated a preference for the format they had received in addition to a format that had not been used during genetic counseling (7/41, 17%). Comparing the actual formats used during the consultations with counselees' preferences revealed that over 50% of the women who stated a pref-

Table V. Counselees' Preferences for Different Types of Qualitative and Quantitative Formats for Presenting Cancer Risk

n

(%)

If you were to be told (about the chance of developing cancer) in words, which of the following would you prefer?: General description (e.g., high, medium, or low) A comparison with women in general (e.g., higher than women in general) Don't know Other (please specify) Total If you were to be told (about the chance of developing cancer) following would you prefer?: Percentages (e.g., 10%) Proportions (e.g., 1 in 10) Gambling odds (e.g., 9 to 1 against) A comparison with women in general (e.g., 1 in 10 compared with 1 in 12 for women in general) Don't know Other (please specify) Total

21

52

17 2 1 41

42 5 2

in numbers, which of the

15 19 —

35 44 —

17 1 _ 43

40 2 —

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erence for percentages or proportions (see Table VI) had received a risk estimate which used these formats, while only 29% who expressed a preference for population comparison had received this type of risk estimate during their consultation.

DISCUSSION This study demonstrates that risk information is presented in a variety of different ways during genetic counseling. In the consultations we observed, the counselors used both qualitative and quantitative formats to describe the counselees' risk. Variations in the types of quantitative formats used to present probabilistic information were observed both within and between consultations. In some cases, counselors described risk in more than one way and quoted risks for different time periods, in others the counselee was given one type of risk estimate for one time period. These observations have important implications for the interpretation of the findings of the research which investigates risk recall and risk perception following genetic counseling. As Hallowell and Richards (1997) note, few of these studies have attempted to determine the format that was used to present risk information or even whether numerical risk information was provided during counseling. In the case of studies which employ open-ended questions to determine risk recall (for example, Somer et al, 1988), this oversight may result in an overestimation of the number of counselees who fail to recall this information. Alternatively, studies which use forced-choice questions to establish counselees' risk perception, or recall accuracy, the numerical format of the response options may differ from the format used in the counseling session (Evans et al, 1994), and, therefore, counselees' errors may be computational mistakes, for example, converting probabilities to percentages or vice versa (Kessler and Levine,

Table VI. Number of Counselees Who Received a Cancer Risk Estimate in the Preferred Format Preferred and received format = same Preferred Percentages (n = 15) Proportions (n = 19) Pop. comparison (n = 17)

Preferred and received format ; = different

n

(%)

n

(%)

8 11 5

53 58 29

7 8

47 42 71

12

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1987), rather than demonstrations of biased risk perception or recall failure. With a few exceptions, the counselors' use of quantitative formats when describing risk was perceived as informative and helpful in clarifying the counselees' situation. These results contrast with the findings of Green and Murton's (1993) study which describes attitudes toward the use of quantitative risk estimates during genetic counseling for Duchenne Muscular Dystrophy. Green and Murton report a much greater level of dissatisfaction with the genetic counselors' use of numerical risk estimates than was observed in the present study; 23% of mothers reported that numerical risk estimates were confusing, 14% said they were meaningless, and 16% said that they added nothing. One explanation for this difference is that all of the women in the present study expected to establish their risk of developing a cancer (Statham et al., 1996; Hallowell et al., 1997) so that they could take appropriate steps to manage their risk (seek or continue with screening or proceed with prophylactic surgery), whereas not all of the respondents in Green and Murton's study were actively seeking risk information as they had already made reproductive decisions, in some cases many years ago. Some support for this argument is provided by Shaw and Dear (1990) who report that many of the mothers in their study described numerical expressions of risk as "more definite." In their discussion of the data, they draw a distinction between information used for decision-making and information "for the record," arguing that in the former case quantitative estimates should be given as it is essential that risk information should not be misinterpreted, while less precise qualitative descriptions of risk will suffice for the latter. As was noted above, many of the women we interviewed said that numerical expressions of risk helped to clarify the decision-making process. Indeed, six women said they came to genetic counseling with the purpose of obtaining a risk information so that they could make a decision about prophylactic surgery. An alternative explanation for the differences observed in these two studies is that counselees' presentation preferences are related to the different type of risks that are discussed in genetic counseling. The present study focused upon the counselees' preferences for the ways in which health risks were presented, whereas Green and Murton (1993) investigated attitudes about the presentation of reproductive risks. The issue of whether counselees' have different presentation preferences for these different types of risks was not explored in the present study because reproductive risk was not directly addressed during the counseling sessions we observed. Indeed, counselees' reproductive risks were only communicated indirectly, in-

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sofar as the counselors indicated that the risks of a counselee's existing, or future, children being mutation carriers were half that of the counselee. In the majority of sessions, reproduction was not discussed at all because the counselees had already completed their families. In those cases where counselees had not yet started a family, the counselors stressed the risk for future children was half that of the counselee, but that by the time any children had reached the age when their cancer risk became an issue, it was very likely that screening procedures would be improved and that there would be alternative preventative measures that did not involve prophylactic surgery. The view that reproduction is not an issue for these women was reinforced during the follow-up interviews, as only one of the counselees said that she might have reconsidered her decision to have a family had she known about the risks of cancer beforehand. Analysis of the counselees' preferences for the presentation of risk information revealed that 73% of the participants preferred risk to be presented numerically, either with or without a qualitative qualification, replicating Bloch et al.'s (1978) and Shaw and Dear's (1990) findings. However, it is difficult to interpret these findings, and those reported by Bloch et al., as the data were collected retrospectively and, therefore, it is possible that the counselees' experience of counseling may have influenced their preferences. In the case of the present study, we did not collect data on counselees' presentation preferences prospectively as we wanted to avoid setting up too many expectations about what would occur during the consultation. Given that eight of the women we observed did not receive a quantitative estimation of their risk during counseling, we would argue that this was the right decision. Although the design of this study meant it was impossible to determine the extent to which counseling influenced individuals' preferences, comparing the formats used during the consultations with counselees' preferences suggests that preferences for particular types of format are not totally dependent upon experience. Almost half of the counselees who expressed a preference for percentages or proportions received a risk estimate in a nonpreferred format during their consultation and nearly three quarters of those who said they preferred risk to be presented as an explicit population comparison had not received information in this way during their consultation. Nevertheless, it must be borne in mind that counselors did provide information about population risks during 61% of the consultations, although an explicit comparison between the counselees' risk and that of the general population was drawn in only 24% of consultations. Furthermore, it must be noted that the comparative example used in the questionnaire referred to proportions rather than percentages, therefore, individuals who chose this option may have been expressing a preference for risk to be

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presented as proportions. However, the interview data indicates that it may be the framing of risk as a comparison that is important, as during the interviews many counselees said that being told the population risk helped to put their personal risk in perspective. Indeed, this explanation seems more likely as psychological studies of risk perception indicate that individuals regard risk comparisons as more meaningful that risks presented alone (Slovic, 1986). Finally, this paper raises a number of questions about the presentation of risk information during genetic counseling. First, why do counselors use different types of quantitative formats to present this information? Our results indicate that presentation may be influenced to some extent by the type of family history presented, as counselors were more likely to provide low-risk women with qualitative descriptions of risk. Nevertheless, some counselees who presented a family history which the counselors thought was unlikely to result from a genetic mutation received quantitative estimations of their risk. Furthermore, there were no observable differences between the family histories of those who received a different types of quantitative explanations. However, there is another explanation for the observed differences in risk presentation. Counselors may also have preferences about the formats they use to present risk information, and these may be informed by their perceptions of the counselees. Indeed, given that counseling is a dynamic interaction it is quite possible that the actions and reactions of the counselees may have influenced the counselors' presentation of risk information in the consultations. Clearly, further research which investigates counselors' preferences for the framing of risk information and the influences of counselee behavior upon these preferences is needed. Second, does the format used to present numerical risk information affect counselees' perception or recall of risk estimates? Systematic investigation of these questions was not feasible in the present study given the size of the sample and the variability observed in the presentation of risk information. In conclusion, this study demonstrated that there is considerable variation in the way that risk information is presented during genetic counseling for breast/ovarian cancer. For the most part, the counselees were positive about the way that the counselors had described their risks. Analysis of the counselees' preferences for the presentation of quantitative risk information revealed that the majority of the participants would like risk to be presented using numerical formats. Although there was no overall preference for particular types of qualitative or quantitative formats many of the counselees expressed a preference for their risks to be described as an explicit comparison with those of the general population.

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ACKNOWLEDGEMNTS We would like to thank Professor BAJ Ponder, Dr. C. Eng, Claire Snowdon, Maggie Ponder, Sally Roberts, Jill Brown, and all the women who took part in this study. In addition, we would like to thank the referees of this paper for their helpful comments. This research was funded by the Medical Research Council. The familial cancer clinic was supported by grants from the Cancer Research Campaign [CRC] to BAJ Ponder. BAJ Ponder is a Gibb Fellow of the Cancer Research Campaign [CRC].

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