Josephine M. Green

Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer.

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.

Pregnant women's attitudes to abortion and prenatal screening

Recent advances in prenatal screening and diagnosis mean that an increasing number of women may be faced with the possibility of terminating a pregnancy on the grounds of fetal abnormality. Little ...

Counseling families with hereditary breast and ovarian cancer: A psychosocial perspective

Genetic linkage studies have established that a gene with mutations predisposing to breast and ovarian cancer (BRCA1) is located on chromosome 17q. The gene has been cloned and some of its many mutations described (Easton et al., 1994; Ponder, 1994). A second gene BRCA2 has been located (Wooster et al., 1994). The existence of other dominantly inherited predisposing genes has been suggested (Sobol et al., 1994). Family history clinics have been set up to provide counseling for those from families with a history of breast and/or ovarian cancer (e.g., Evans et al., 1994). Numbers seen in such clinics are as yet small but the potential demand is very large. Therefore, there is an urgent need to develop services in view of the likely rapid increase in numbers of women coming forward for genetic counseling. This paper aims to set out the issues which arise in, and are in some cases specific to, hereditary breast and ovarian cancer counseling from a psychosocial perspective and to describe the key elements in a genetic explanation which family members may require in order to make appropriate decisions. It supplements the recommendations for counseling that have been produced in Britain (Evans et al., 1992, 1994), and the USA (Biesecker et al., 1993; King et al., 1993; Lerman and Croyle, 1995; Lynch and Watson, 1992; Ngan and Shepherd, 1994). It is based on observations and pilot interviews for an ongoing study of lay knowledge and communication in families with genetic disorders which has involved interviews with members of families who carry hereditary breast and/or ovarian cancer. Work

Obstetricians' views on prenatal diagnosis and termination of pregnancy : 1980 compared with 1993

Objective To examine the attitudes of obstetricians in England and Wales concerning prenatal diagnosis and termination of pregnancy and to compare these with a similar survey carried out in 1980.

The effects of miscarriage and other ‘unsuccessful’ pregnancies on feelings early in a subsequent pregnancy

Abstract Data from pregnant women recruited to a prospective study of the psychological and social effects of screening for fetal abnormality were analysed according to previous reproductive experiences. In this paper we report on the effects of these previous experiences on womens feelings early in this pregnancy. Women who had experienced a previous unsuccessful pregnancy were more anxious, both generally and specifically, about the possibility of something being wrong with the baby and about the possibility of miscarriage. Women with unsuccessful pregnancies and no living children had the highest trait anxiety, when measured early in pregnancy. We show a number of ways in which women who have experienced a previous pregnancy failure differ from women who have not; these differences vary with a number of factors, notably the type of unsuccessful pregnancy, whether or not the woman has living children, the timing of the unsuccessful events, and whether a woman has also had a non-medical termination of p...

Positive experiences of early motherhood : predictive variables from a longitudinal study

Abstract Studies of womens postnatal experiences have tended to emphasize the negative, yet for many women experiences are positive. This paper attempts to redress the balance using data from a large prospective study of childbearing women in south-east England. Questionnaires were completed by 1285 women approximately 6 weeks after delivery. For most, motherhood was a positive experience: for example, two-thirds gave the maximum score of 5 for enjoying looking after the baby and 79% for being proud of being a mother while 72% had no disappointments about motherhood. Preliminary analysis indicated that answers to these questions were related to many of the concurrent measures that might be expected, such as support from partner, EPDS score and tiredness. These were also related to each other. Principal components analysis was therefore used to create a new ‘positive experiences of motherhood’ variable, POSMO and this was then subjected to multiple regression analysis. This showed that 25% of the variance...

Women's knowledge of prenatal screening tests. 1: Relationships with hospital screening policy and demographic factors

Abstract Screening for fetal abnormalities has become a major part of routine antenatal care, but previous research suggests that women are not always well-informed about the tests that they undergo. Building on the knowledge questionnaire developed by Marteau e t al (1988), we explored the knowledge of approximately 1200 pregnant women, booked for care at nine different hospitals, in relation to hospital screening policy and demographic factors. The same questions were asked pre-booking and at 22 weeks. Knowledge increased substantially between these two occasions but results from a control group indicated that the increase in knowledge did not result from our having asked the questions at the time of the first questionnaire. Age, education, parity and hospital policy were all found to be strongly related to womens knowledge scores, although hospital differences were spa& to questions related to alpha-fetoprotein testing. Hospital differences were apparent before the first hospital visit, both for multi...

BRCA1 testing: Some issues in moving from research to service

About 3% of cases of breast or ovarian cancer (i.e. 1000 women per year in the UK) are thought to result from mutations of the gene known as BRCA1. The identification of the gene opens up the possibility of identifying carriers before they develop the disease. All those who have so far been tested for BRCA1 mutations have been from highly selected multi‐case families. Most families who carry a BRCA1 mutation will not have such striking histories; individuals from these families are likely to be less well prepared for information about genetic susceptibility. This paper explains the practicalities of BRCA1 mutation testing and discusses the consequent limitations and some possible scenarios for widespread testing. The success of any screening programme will depend initially on affected individuals being willing to be tested, but at present nothing is known about how cancer patients will respond to the knowledge that their illness has a genetic basis. What distinguishes genetic disorders from other illnesses is their implications for families. We argue that it is important that the psychosocial processes involved in offering testing be investigated both for the individual and the family, before any testing is introduced on a wide scale.

Women’s experiences of prenatal screening and diagnosis

Although most pregnant women worry about the possibility that there might be something wrong with their baby, few have any specific grounds for this. Statham, Green and Snowdon (1992) found ‘the possibility of something being wrong with the baby’ to be one of the highest scoring worries in a sample of over 1800 women in early pregnancy, with only 11% being not at all worried. However, when asked ‘Have you any reason to think that your baby might be more likely than any other to have some sort of a problem?’ only 13% said ‘yes’, and these were primarily on grounds of age. Age is now widely recognized by women as a risk factor, which, as I shall argue below, may be a mixed blessing. Women take part in screening programmes in order to be reassured that their babies are healthy, rather than with any expectation that they are not and, as Farrant (1985) and Green, Snowdon and Statham (1993) have argued, it is important for service providers to appreciate the implications of this.

Prenatal screening and diagnosis: Some psychological and social issues

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