Journal of Genetic Counseling, Vol. 6, No. 1, 1997

Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer Josephine Green,1,2 Martin Richards,1,3 Frances Murton,1 Helen Statham,1 and Nina Hallowell1

In familial breast/ovarian cancer, the information that the proband is able to supply about other family members is of critical importance for genetic counseling. This frequently requires family communication. Forty-six women attending a cancer genetics clinic were interviewed as part of a longitudinal study. Nearly all reported affected maternal, rather than paternal relatives, which may indicate lack of awareness by women with paternal histories. There was also much more communication among female relatives. Mothers, where they were still alive, were key figures in supplying family information. Although the majority of the sample contacted at least one relative regarding counseling, most named a relative with whom they did not feel able to communicate on this subject. Probands balanced the perceived obligation of passing on information with that of not causing alarm. Communication, both obtaining and giving information, was impeded by adoption, divorce and remarriage, family rifts, and large age gaps between siblings. KEY WORDS: genetic counseling; family communication; breast/ovarian cancer.

INTRODUCTION Clinical genetics differs from other branches of medicine because inherited diseases may affect several members of the same family. The patient 1Centre 2Present

for Family Research, University of Cambridge, Cambridge, U.K. address: Midwifery Studies, University of Leeds, 22 Hyde Terrace, LEEDS LS2 9LN,

UK. 3Correspondence

should be directed to Martin Richards, Centre for Family Research, University of Cambridge, Free School Lane, Cambridge CB2 3RF, U.K.

45 1059-7700/97/0300-0045$12.50/l © 1997 National Society of Genetic Counselors, Inc.

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may thus be regarded as the family, not simply an individual. There is a growing body of research which has attempted to evaluate the effects and effectiveness of genetic counseling. Many studies have been concerned with such issues as the proband's understanding of the particular condition, risk information, knowledge of the process of inheritance or the reproductive or other decisions that may be taken after counseling. However, despite acknowledgment of the role of the family and family relationships in discussions of the impact of genetic disease (e.g., Kessler, 1988; Kessler and Bloch, 1989; Richards, 1996), little of this perception is reflected in research on the evaluation of genetic counseling: rather the focus has been on the individuals who have attended a clinic and their attitudes, knowledge, and subsequent actions. Only a small number of studies have specifically considered the communication of genetic knowledge, within the extended family. These have mainly concerned families with balanced translocations (Suslak et al, 1985; Wolff et al, 1989; Ayme et al, 1993), and cystic fibrosis (Denayer et al., 1992). There is considerable variation in the situations that bring people to genetic counseling. Many come to discuss the likelihood of children inheriting the condition and the future reproductive choices that may be available. Others come because of their own concern of developing a specific disorder in the future, or there may be a combination of issues. In most cases, the initial genetic counseling session will include taking a family history and the discussion will extend to relatives beyond the proband. Another important distinction is between those who come because one or more members of their family are known to be affected by a single gene (or chromosome) disorder, and those who come seeking information about the likelihood that a particular family history is in fact indicative of a genetic component. This latter situation is already commonly encountered with some cases of childhood disorders such as learning disabilities, and is likely to become an increasing part of genetic counselors' workloads as more common adultonset diseases, such as Alzheimer's disease and some cancers, are found to be associated with particular genetic mutations in some families. When a diagnosis of a Mendelian disorder has already been made, the family history may be little more than background material to the counseling session. But where the issue is whether or not a "genetic" disorder may be present, the pedigree is pivotal because it is the raw data with which the counselor has to work in order to assess the likelihood that there is a Mendelian disorder in the family. Gaps or inaccuracies in the information supplied by the proband about other family members, or misunderstanding of this by the geneticist, can result in critical differences in the geneticist's assessments and so counseling. Thus, the information that probands are

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able to obtain about their family histories from other family members is crucial and family communication is of key importance. This latter situation is the one faced by women who attend counseling with a family history of breast and/or ovarian cancer (Richards et al, 1995). Because they will be aware that the clinic session will involve issues of inheritance and family history, most counselees will be thinking of family issues before they reach the clinic. They may also be forewarned that they will need to provide specific information about their family or there may have been telephone or letter contact with a clinic staff member who collects some basic information about the family history. For these reasons, there may be increased family communication prior to the counseling appointment. What is discussed in the counseling session is also likely to have implications for other close relatives, both male and female. So, family comTable II. Essential Do’s and Don’ts in Conflict Resolutionad the family history is being collected, but also after counseling when the proband may, or may not, pass on information to other family members. With whom do probands communicate? What determines whether information is passed on? What do probands see as their obligations? These questions have received scant attention in the genetic counseling literature. Even those few studies which have addressed these issues have frequently used proxy measures such as the number of relatives coming forward for testing, rather than collecting data directly from those concerned (e.g., Ayme et al, 1993). This paper will attempt to address these questions drawing on a prospective study of women attending a genetic counseling clinic because of a family history of breast and/or ovarian cancer.

METHODS Recruitment The sample was recruited from the Cancer Family History Clinic in Cambridge (U.K.) where counseling was given by one of two cancer clinicians with a special interest in genetics in consultations lasting about 1 hour. Clinic practice was to send counselees a form beforehand asking them to list names of relatives who had had cancer, the type of cancer, their relationship to the counselee, dates of birth, diagnosis, and death and details of hospitals where affected relatives had been treated. Between February 1994-February 1995, anyone who was offered an appointment to discuss breast, ovarian or both these cancers, but who had not themselves had cancer, was invited to take part. During this period all such consultands were women. Consent forms were sent with a letter ex-

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plaining the research 2 weeks before the clinic appointment. Women were only contacted directly by the researchers when the form had been returned. The study was approved by the Cambridge Local Research Ethics Committee. Data Collection Women were interviewed by telephone during the week before their clinic appointment, and their consultation was observed. A copy of the summary letter sent by the counselor after the consultation was obtained. Women were interviewed in depth at home about 8 weeks later, and again, by telephone, after 1 year. All of these interactions were tape-recorded, with consent, and transcribed. Women also completed a short questionnaire a few days before the postclinic interview. Questions about family communication focused both on whom the proband had spoken to and whom she had not. All questions were openended. The key questions from the precounseling interview for the data presented in this paper were "Have you contacted anyone in your family specifically to get information to take to the clinic?" and "Was there anyone else in the family who might have been able to help you but who you didn't feel able to approach for information?" These questions were often explored again in the much more detailed postcounseling interview. Most information about postcounseling communication, was elicited by the initial question "Who have you shown the [clinic] letter to?" Our other data sources have been drawn on as necessary for background information. The Sample Fifty nine eligible women were invited to participate, 46 of whom took part. Five did not reply and eight refused. Among the refusals were women who would have taken part in some part of the study but who either did not want to be tape-recorded or who did not want us to observe the consultation. Two other women agreed to take part but have been excluded from the data presented here because they were returning to clinic for follow-up consultations. Two women declined to be interviewed postclinic, and in a further four cases we deemed a follow-up interview to be inappropriate, for example because of a recent family death. Thus, data presented here is based on 46 preclinic and 40 postclinic interviews. The clinic appointments were invariably offered to an individual person. While they were not discouraged if they asked, there was no suggestion to them that other blood relatives might accompany them. In one consultation two sisters attended together, in another, a daughter sat in on her mother's consultation

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and, in a third, an affected mother accompanied her daughter. Only the individual who had been given the appointment was interviewed for our study, and none of these women were related to each other. Demographic All women were Caucasian. Forty-two were married or living as married, with three divorced or separated and one not married. Of the 44 women for whom the data is available, 23 (52%) had completed full-time education by the age of 16, 11 (25%) had further education up to the age of 18, and the remaining ten (23%) were educated beyond age 18. Only ten of the 45 women for whom data is recorded were not in paid employment; 12 (26%) had worked at some time in a job with a medical connection (e.g., doctor, nurse, medical receptionist). Family History The 46 women reported a total of 132 relatives affected by breast or ovarian cancer (mean 2.9, range 1-8), and a further 77 affected by other cancers. Only 13 women (28%) reported any cancers in paternal relatives and only four (9%) reported breast or ovarian cancer in paternal relatives. There was only one woman in the sample (GC12) who reported no maternal relatives with breast or ovarian cancer, although another (GC14) had a strong paternal history and no affected maternal relatives except her mother who had developed ovarian cancer at age 68. The most commonly reported relatives affected by breast or ovarian cancer were mother, sister(s), maternal grandmother, and maternal aunt (see Table I). Asymmetry in the reporting of maternal rather than paternal history is to be expected since those with a paternal history are very unlikely to have an affected parent and their affected relatives are necessarily more distant. However, if we consider only those 14 women without affected mothers, the asymmetry persists. Three had only affected sisters. The remaining 11 reported eight sisters, ten maternal aunts, five maternal cousins, two maternal grandmothers, but only one paternal aunt and one paternal grandmother. Their mean number of affected relatives is, as might be expected, lower than women with affected mothers: 2.5 compared with 3.2. Mother's Survival Status Given the earlier onset of inherited breast/ovarian cancer, the majority of the sample did not have living mothers: 14 had died of ovarian cancer,

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Green, Richards, Murton, Statham, and Hallowell Table I. Cancer Family History of the Sample (N = 46)

N Total no. of relatives reported with breast or ovarian cancer Total no. of relatives reported with other cancers Women reporting any cancer in a paternal relative Women reporting breast or ovarian cancer in a paternal relative Mother affected by breast or ovarian cancer At least one sister affected by breast or ovarian cancer Maternal grandmother affected by breast or ovarian cancer At least one maternal aunt affected by breast or ovarian cancer

132 77 13 (28%) 4 (9%) 32 (70%) 14 (30%) 16 (35%) 18 (39%)

eight of breast cancer, and five of other causes (stomach cancer, colon cancer, stroke, heart disease, "old age"). Women whose mothers were still alive (N = 19) were slightly younger than women whose mothers had died of breast or ovarian cancer (N = 22): mean 34.0 years (range 24-48), cf. mean 39.3 years (range 28-59). Women whose mothers had died of other causes (N = 5) were considerably older: mean 52.2 years (range 48-54). All but one of the women in this latter group had had a member of their own generation affected by breast or ovarian cancer; this was true for half the women in each of the other two groups (9/19 and 11/22). Of the 19 surviving mothers, five had themselves had breast cancer, and five ovarian cancer. Six were now well, but four were terminally ill (one with breast cancer, three with ovarian). Siblings Four women had no living siblings. Thirty (65%) had at least one living sister and 30 (65%) had at least one living brother. Children Six women had no children, and a seventh was pregnant with her first child. Of the other 39, 31 had at least one daughter and 29 at least one son. Most daughters were still children, but 16 were aged 16 or over. Data Analysis Verbatim transcripts were coded according to pre-defined categories based on questions asked, using the Textbase-Alpha package which facilitates categorization. After this initial coding, themes were identified within each category (Pope and Mays, 1995).

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RESULTS Obtaining Information Thirty-six of the 46 subjects (78%) approached at least one relative for information before going to the clinic. A significant variable was the survival status of the proband's mother. Women with Living Mothers Of the 19 women with a living mother, 14 approached only their mother for information and five approached no-one. Thus, no woman with a living mother approached any other relative for information. Two of those who did not approach anyone were distant from their relatives, including their mothers, both geographically and emotionally (GC8, GC12). GC12 was also the one woman in the sample with no affected maternal relatives. In two other cases, the mother was terminally ill (GC19, P03) and the remaining woman felt unable to raise it because her sister had recently died (P06). For the other 14 women with living mothers, the mother was the key informant. Mothers did not necessarily have all the requisite information themselves, but often approached other relatives on the proband's behalf. This could be inhibiting if the mother felt unable to approach a particular relative: in one case (GC13), the proband specifically mentioned that "it would encroach on Mum's sort of territory" if she were to approach a cousin of her mother's directly. Women Whose Mothers Had Died Recently Four mothers had died within the past 18 months and in three cases (GC1, GC2, GC22), they had been the key informants. These mothers had made a point of passing on details of relevant family history to their daughters before they died. GC22's maternal aunt had also been involved in the process and accompanied her to the clinic. However, in the other case of a recent maternal death (GC9), where the only other family history was a maternal grandmother, no one was approached, although the proband expressed the intention of contacting her maternal grandfather. Women Whose Mothers Had Died Less Recently For the 23 women whose mothers had died more than 18 months ago, information was most frequently obtained from: sisters (seven cases, ten

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sisters), cousins (six cases, six female cousins, two male), and aunts (three cases, three aunts). Information was also obtained from a father (two cases), a mother's female cousin, and a sister-in-law. Female relatives were thus much more likely than males to be asked for information; women in this group reported approaching 21 females and four males. Seven women (30%) in this group approached no-one for information. Aunts were most frequently mentioned as potential sources of information, especially about the proband's grandmothers and earlier relatives (e.g., great-aunts, great-grandmothers) but, as we shall see in the next section, they were not always approached.

Factors Inhibiting Asking for Information Although most probands sought information from someone, 23 of the 46 subjects (50%) reported at least one potential informant whom they had felt unable to question. The reasons for this, in various combinations were: the person is old or ill (either with breast/ovarian cancer or unrelated illnesses); not wanting to upset people with painful memories; not getting on with a stepparent or in-law; not being close to siblings because of a big age gap; having lost touch with that branch of the family. There seemed to be particular difficulties if any of these reasons applied to someone who was male, for example the widower of an affected relative. I don't know whether my father knows all about it, but I didn't really want to bring it up with him, to be quite honest, although it's been a long time since my mother's death, I don't feel he's the person to talk to about it. (GC10) My stepfather who my mother was married to before she died, has moved [abroad] now, and we don't get on that well . . . . (GC17) I have an aunt who I—well, she's 91, and she's probably the only one who knows exactly what my grandmother died of ... and at the age she is, I didn't really want to discuss it with her, you know. She might find it upsetting. (GC2) My parents are quite old and, you know, that generation didn't talk about things. (GC12)

In addition, there were a number of other cases of communication difficulties. In one case (GC3), the proband's GP had specifically told her not to mention her forthcoming clinic appointment to relatives so as not to alarm them. She had, therefore, not felt able to ask her older sister for information. In another case, (GC34), where the proband's sister had recently died, she asked her mother for information about other relatives under another pretext, to avoid distressing her by raising the subject of cancer with her directly.

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Adequacy of the Family History Information Obtained The histories with which women arrived at the clinic were generally adequate as a basis for counseling, but there were inevitably gaps, and the advice given frequently had to make assumptions about the causes of death of key relatives. As we have reported elsewhere (Hallowell et al., 1997) some women were concerned that they could not be given a definitive risk estimate because their family history was incomplete. Requirement for Communication with Family Members Raised in the Consultation In the course of the consultation and again in the summary letter, the counselors sometimes indicated the desirability of seeking the cooperation of relatives or informing them of what the implications were for them. In all cases, it was made clear that this would be at the discretion of the proband and that no relatives would be approached direct until she had obtained their agreement. There were three principal ways in which the involvement of relatives was suggested: 1. To obtain information on where an affected relative had been treated in order that correct diagnosis may be obtained from hospital records (N = 5/46, 11%). 2. Recommendations for screening to include certain relatives by name (N = 10/46, 22%). 3. Blood samples requested from affected relatives for research purposes or to be stored in anticipation of future genetic testing. (N = 16/46, 35%). In 22 (49%) of the consultations, there was no indication for communication with other family members, other than, where appropriate, mention of implications for daughters. Postcounseling Information Giving By the time of the first follow-up interview, probands had all received a letter from the clinic summarizing the information given. All were asked who they had shown the letter to. Most (35/40) had either shown the letter or described its contents to at least one relative. In one case the proband regarded herself explicitly as a representative for the family and so took it for granted that she would pass on whatever information she received.

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While that position was unusual, many of the probands still had clear ideas about their duties to inform other family members. Many expressed the view that their relatives had the right to know, especially those of the next generation. Given that I have a seventeen year old daughter, I feel sort of an obligation to let her know what kind of risks she's facing and what kinds of things she might want to look for and watch out for. (GC8)

They also had clear ideas about who should pass on information. I think that her mum is totally aware of what's going on and it's her responsibility to make sure [that her daughter knows]. (GC25)

But some anticipated difficulties for the appropriate person in passing on the information. She [affected sister]'s probably a lot more aware of it than I can be. But she's also somebody who tends to smooth things over and doesn't like to talk about them . . . . So I think I'm concerned that she might not discuss it with her daughter. (GC15)

This raises the question of the clinic's role in facilitating communication. I: Would you like any help from, say, the clinic, or people associated with the clinic, in contacting members of the family? Or do you think it's something you'd rather do? R: Um ... I personally think it would be a brilliant idea if you could write to [nieces]. But they would think where the hell's this come from? Who are these people? (GC15)

The perception of a duty to inform was heavily tempered by a concern not to upset. It's very difficult ... my cousin may not want to know about cancer. Or if she does, she may not want to talk about it with me, necessarily. So it's an area that I have to tread very carefully, because I don't really want to upset or alarm her. (GC36)

The desire not to upset or alarm was one of the major determinants of the likelihood of information being passed on, because people were aware that the context in which information is given is itself part of the message. I would like to show [the clinic letter] to my brothers, but I thought it was—I am always accused of being melodramatic, and I thought suddenly, because I have decided I want to participate in research, to start sending photocopies of long complex letters seemed a bit inflammatory really. (GC13)

Letters and phone calls tended not to be seen as suitable ways of giving information to relatives who are not in close contact. I think it would be better if it was spoken rather than a letter, because a letter is frightening, because you think—if I thought those girls [nieces] weren't doing

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anything [i.e., having screening] and I was told that they are really at a high risk, I think in conversation I would say to them, do you have these checks that are available, you know? They are really a good idea. That's what—I think I would bring it up in a light way with them. (GC4) She [niece] isn't on the phone at the moment so that's the difficult thing, and I don't really want to write it in a letter. I'd rather see her and speak to her and say, look, you know, I'm not saying, oh my God, you're going to get cancer, or whatever. All I'm saying is, it's best to go and see somebody. (GC17)

Information was most likely to be passed on when it could be integrated into communication that would be taking place in any case. This was most likely where family members met face to face. I did get [clinic letter] photocopied and I did take it with me to my mum the following weekend when I saw her again. (GC28)

Conversely, where there was social and/or geographical distance between relatives it was less likely that information would be passed on. R: Since I don't at the moment live with my mother, I just haven't really got round to it [showing her the clinic letter]. I: Right, but you've told her? R: Oh yes, absolutely, yes. It's just through circumstances that I haven't shown her, not because I'm withholding the information. (GC36)

With this in mind, a number of probands were contriving a meeting, When I go up and see my sister ... I will try and make a point of getting over to see [brother] as well, because I think if I was talking to him face to face I might have better luck. (GC17)

Another solution adopted by some was to wait until a family gathering occurs for some other reason or to include the information with a regular communication like a Christmas letter. In both cases the aim was to reduce the possible alarmist effect of contacting relatives solely for the purpose of telling them of their, or their children's, possible cancer risk. Although virtually all probands told at least one relative about what they had been told at clinic, nearly all also had at least one first or second degree relative that they were not intending to inform. The most common reason for this was not being in touch with those relatives. This in turn could often be traced to the family history of cancer, for example, siblings being separated and/or remarriage following a mother's early death, or family rows about the way people had behaved during a relative's final illness. In most cases probands did not seem to feel an obligation toward those relatives with whom they were not in touch, but there were exceptions, especially for daughters and nieces. One woman was prepared to trace a daughter given up as a baby for adoption should she be shown to be a carrier of a dominantly inherited genetic mutation. Another felt a responsibility toward the daughter of her estranged sister:

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Green, Richards, Murton, Statham, and Hallowell I don't feel in a situation where I can approach my sister [affected with breast cancer], and I don't know where my niece is. ... My elder brother, whom I get on with very well, and I do talk to my elder brother about this, feels that may be it would be better if it came from him. So he's going to come one day and pick the letter up and talk to me about it, and then go and see my sister. (GC15)

Passing information to male relatives was often seen as particularly difficult, and not all probands understood why the information might be relevant. The other aunt who had cancer, her son, well, he's not going to get breast or ovarian cancer, is he? Men don't get breast cancer, do they? (GC25)

That men can carry such an essentially female disease is counterintuitive, and a number of women felt frustrated in their attempts to explain the situation to their brothers. Telling my brothers that they can carry the gene, and therefore their daughters should start to be aware, not worried but aware, was really important because it's assumed that it's nothing to do with them. (GC13)

This phrase "not worried but aware" reiterates the theme of needing to give information without being alarming.

DISCUSSION The data presented in this paper make it clear that, even if only one person attends, genetic counseling is a family affair. The act of coming for genetic counseling may itself be a result of family discussion about the disorder, but, whether or not this is the case, nearly all probands had contacted someone in the family for information. However, the required information is sometimes only available from relatives who are elderly and who may themselves be ill. Furthermore, they may be perceived as being a generation who "didn't talk about that kind of thing," in fact, there is a double taboo both regarding cancer and reference to reproductive parts of the female body. There are additional difficulties, for example, where the source of possible information is the widower of an affected relative, e.g., an uncle-by-marriage. Family communication is likely to have declined after the death of his wife (i.e., the blood relative) and he may have remarried. All this may make a critical difference to the information that the proband brings with her to the clinic, which is the only data that the counselor has to work with. Mothers, where they are still alive, are vital players, not only because they often have the requisite information, but also because they are the link with other relatives of the previous generations. It is striking that none of the 19 women with a living mother approached any other relative. Potentially, this could inhibit the acquisition of accurate information.

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The sample involved in this study presented with many more affected maternal relatives than paternal. Some imbalance is to be expected since those with a paternal history cannot have an affected parent and their affected relatives are therefore usually more distant. However, the imbalance was still present for women without affected mothers, for whom there ought to be equal numbers. It is likely that this is a result of breast/ovarian cancer being female disorders, and, as we have suggested elsewhere (Green et al., 1993), women do not see their paternal relatives as being relevant since it is counterintuitive that female disorders should be passed on by males. However, one implication of this is that there are women with indicative paternal family histories who are not presenting at the clinics because they (or their doctors) have not realized the significance of their family histories. There was also much more communication with female relatives than with male, reinforcing the idea that women are the "kin-keepers." We had thought that there might also be an overrepresentation in the sample of women with daughters, as opposed to sons, since concern for daughters was often mentioned as a reason for attending the clinic (Statham et al., 1996), but this was not the case. Neither were there more women with living sisters as opposed to brothers. While sex is clearly an important dimension in the transmission of genetic information, our particular data must be generalized from with great caution because we are dealing with an essentially female disorder. It remains as a question for future research whether the sex differences that we have observed are also present for disorders that are not sex-linked. The majority of women in this study passed on information to some relatives. The spread of information may be fast or may take place slowly over many months or years as family members meet through the usual round of family events. A dramatic example of the first was a woman who sent copies of the postcounseling letter to every known member of her kinship. More usually, as our examples have shown, probands will take a more cautious approach to dissemination. It is a process which involves a balance between the perceived obligations of, on the one hand giving information, and, on the other, not causing alarm. In many cases the balance is very delicate. Communication, both obtaining and giving information may be impeded by adoption, divorce and remarriage, family rifts, and large age gaps between siblings. All of these were observed in our sample. Where a mother has died young, as may well be the case with breast and ovarian cancer, there is an increased likelihood of all of these family disruptions. Women are then doubly deprived, since they may also have difficulty obtaining information about the rest of the family without their mother as a communication link. It should be clear that all genetic counseling is likely to have effects on family members beyond the proband whether or not the counselor in-

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tends this. Any counselor who thinks that information will not be passed on, or who tries to prevent it, is being unrealistic. Given this, counselors would be well advised to consider what information they would like to be transmitted and to whom and to discuss how this might be achieved with the proband. One strategy would be to encourage other relatives to attend the initial consultation. This would give the counselor more control over what information is given and reduce the chances of the message getting garbled. While this may be efficient in terms of clinic time as it may save further appointments for other family members, it can give rise to difficulties in counseling especially if the different family members have adopted different coping strategies, perhaps with one seeking a great deal of information while the other takes a more avoidant strategy of learning a necessary minimum. Another course of action for the counselor is to accept that the letter summarizing the consultation will be shown to other relatives and to write it with that in mind. A variant is to write the proband two letters: one that is a general family letter to be shown to others and another that is specific to her, based on the particular issues raised in the consultation. This overcomes the problem of the proband's confidentiality. The general letter could possibly be replaced by a leaflet or booklet, such is currently being developed under the auspices of the European Consortium on Breast and Ovarian Cancer (Jackson and Ponder, 1996). Another variant is to send probands a leaflet before their clinic appointment, which may result not only in more focused preclinic family communication, but also a less one-sided consultation. Though very time-consuming, the counselor could, on request, also write personalized covering letters for other relatives, e.g., daughters, explaining the implications for them and the options for action. The proband can be asked who she intends to show the letter to, or the counselor can be more directive and indicate to her who he thinks should be shown it. Counselors tempted by the more directive course should, however, bear in mind the proband's need to maintain the balance between information and alarm; they can only advise. If there are relatives that counselors feel strongly should be informed, then, in many cases, probands are going to need help with this task. Although direct contact from the genetics department without preparation is unlikely to be seen as desirable, there are still ways in which counselors could perhaps do more to help probands to communicate with their relatives. Certainly, counseling could (and often does) include a discussion of those relatives who might be told, and their likely reactions, and the counselor could suggest ways of coping with anticipated difficulties. Understanding of family systems theory should inform genetic counselors of

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the family (as well as individual and marital) processes which facilitate or impede seeking genetic information and acting on it (Eunpu, 1997). Some clinics have genetic nurses who maintain contact after counseling, and it is likely that they could usefully be involved in the process, particularly for those probands who are hesitant about being able to reproduce any technical explanations that they have been given. The data presented in this paper suggests that probands recognize a duty upon themselves to inform relatives of genetic risks. Some were prepared to go to some lengths to meet that responsibility. We have not raised the possibility of someone who refuses to allow information to be passed to relatives, since we did not encounter this. This is an issue that has recently received consideration in the U.K. by both the Nuffield Council on Bioethics (1993) and the House of Commons' Science and Technology Committee (Third Report, 1995). The Nuffield report recommends that if counselors are unable to persuade counselees to share important information with other family members to whom it may have serious implications, they should be free to override the individuals' desire for confidentiality. We have suggested (Richards and Green, 1996) that such a principle runs the risk of bringing both genetic counseling and medical confidentiality into disrepute as well as failing to take family processes into account. Counselors cannot assume that family members who counselees may not wish to inform about a genetic condition would necessarily want to have the information. The House of Commons Science and Technology Committee's report, also reject's Nuffield's conclusions. "If counseling cannot persuade someone to consent to share information with their relatives the individual's decision to withhold information should be paramount" (para 228). At present, in the absence of genetic testing for most families with a history of breast and ovarian cancer, probands are able to do no more than convey some notion of probability of risk to other family members. The situation for counselees and their relatives will change fundamentally in the future when they will be faced with options for genetic testing. Women wishing to be tested will not only need to obtain information but will also need to ask affected relatives, who may be seriously ill and/or elderly, to provide blood samples (Ponder and Green, 1996). Individuals will need to decide whether they would want the information that testing could give them, not only for themselves but for their children as well.

ACKNOWLEDGMENTS

We would like to thank Professor Bruce Ponder and Dr. Charis Eng for access to their clinic and their patients. This research was supported

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