Gender and Genetics

Sociology of the Prenatal

Kate Reed

• Publisher: Routledge
• Year: 2012
• eBook ISBN: 9781135197209
• Topic: Medicine
• Subtopic: Genetics in Medicine

Prenatal screening for genetic disorders is becoming an increasingly widespread phenomenon across the globe. While studies have highlighted the importance of women's experiences of such screening, little is known about men's roles and direct involvement in this process. With a focus on the experiences of both women and men, this text offers an innovative and passionate account of the gendered nature of prenatal screening.

Drawing on interview data with pregnant women and their male partners in a UK city, Reed provides a compelling analysis of maternal and paternal roles in prenatal screening. Through this analysis, the book raises important issues around genetics, gender and screening practice. With a focus on the gendered production of 'good' and 'bad' genes, the book explores differences between visual technologies and blood screening. It also explores the gendered nature of genetic responsibility and the impact this has on parenting roles.

Extending its arguments into other key debates in prenatal genetics – including a focus on the impact of screening on other types of stratification, including ethnicity and class – Reed provides an original and comprehensive analysis of some of the most pressing concerns in the field to date. This book will be of interest to students and scholars of the sociology of health and illness, science and technology studies, gender studies, feminist bioethics and medical anthropology, as well as professionals in the fields of midwifery and genetic counselling.

1 Information keeping/seeking

Introduction

Existing studies have shown that throughout pregnancy women seek out and are targeted with a range of information on pregnancy and screening. Such information ranges from formal information disseminated by health professionals orally or through leaflets, books, etc., to informal sources of information textbooks/magazines/pregnancy support groups (Marteau and Dormandy 2001; Lowe et al. 2009). While many authors have highlighted the benefits of women seeking/receiving such information (Marteau and Dormandy 2001), others have been more scathing, viewing this information as yet another form of biomedical regulation of women’s bodies (Marshall and Woollett 2000). One issue that is apparent however in existing research is that women remain the key targets/recipients of pregnancy-related information, emphasising their roles as exclusive guardians of fetal and child health (Rapp 2000). Little is known about men’s involvement in this process of information seeking (Locock and Alexander 2006). The aim of this chapter is to explore both women and men’s roles as information seekers, disseminators and consumers focusing on the ways in which this has the potential to both reinforce and challenge a traditional gender division of labour in reproduction.

Drawing on data from the study, the first two sections of the chapter will focus on women’s roles as key targets, seekers and consumers of pregnancy-related information. Women seek out information about pregnancy and genetic screening and selectively disseminate that information to partners, thus reinforcing their role as guardians of the fetus. As will be argued women establish their roles as guardians of fetal health through gate-keeping information about genetic screening. Traditional gender roles in reproduction are therefore reinforced with women taking more responsibility for the health of the fetus. This role is further supported by midwives and other health professionals who disseminate screening information predominantly to women. As the chapter will move on to explore however, this female exclusivity in the realm of prenatal genetics is currently being challenged by an increase in men’s access to information about genetic screening (Locock and Alexander 2006), particularly through men’s use of information technology. As argued elsewhere, the Internet constitutes a unique medium where ‘expert’ knowledge on health is accessible to anyone with a networked computer (Hardey 1999). Men use the Internet to seek out information on pregnancy, screening and genetic conditions. This allows them access to a previously exclusive female-only world, thus perhaps challenging women’s roles as exclusive guardians of fetal health. The chapter will conclude therefore by emphasising the ‘gender paradox’ surrounding women and men’s roles around information seeking/receiving, on the one they hand signal a reinforcement of traditional gender roles whilst attempting to move beyond them on the other.

Women, information and pregnancy

According to Lowe et al. (2009) as far as we can tell, women have always sought out and been given advice about pregnancy, although the sources of information have varied over time. In the UK information is presented using one or more media, most often orally and in writing by health care professionals providing prenatal care. In recent years there has also been an increase in dissemination of pregnancy information on the web (Marteau and Dormandy 2001). In the UK sources of information have ranged from official texts such as The Pregnancy Book (DoH 2006) and Emma’s Diary (Royal College of General Practitioners 2005) to leaflets produced by primary care or hospital trusts. There is also a range of books and magazines offering advice and guidance such as Pregnancy and Birth Magazine or self-help books such as What to Expect When You’re Expecting (Murkoff and Mazel 2009). In addition to printed sources, women also share pregnancy and birth stories with other women through various antenatal leisure groups for example, pregnancy yoga, prenatal swimming or National Childbirth Trust (NCT 2011) classes. Consequently seeking and receiving different forms of information could be considered a normal part of pregnancy (Lowe et al. 2009).

Along with printed sources of information, oral advice given by midwives is one of the most important ways of disseminating information on antenatal care to pregnant women (Marteau and Dormandy 2001). Much of the discourse surrounding information disseminated by midwives (certainly when it comes to screening) focuses on enabling women to make informed choices about whether or not to opt for particular tests. According to guidelines by NICE (2003b) women and their partners should be informed of tests. Midwives are encouraged to highlight the use of such tests in enabling the best possible care is provided for women during pregnancy whilst also emphasising the importance of individual choice (see Chapter 2). The UK screening commission emphasises the importance of midwives engaging in annual revision/updating sessions on developments in genetic testing in order that they are able to give women the best possible advice (UK Screening Committee 2003).

Studies have shown that women value high-quality information given personally by health professionals and as early as possible in prenatal care to allow for reflection and informed decision-making (Carroll et al. 2000, Marteau and Dormandy 2001). However, despite women’s desire for good-quality information, recent studies in both the US and UK have highlighted significant variation in the quality of information available. Studies in the UK analysing written information have often judged these to be poor quality in terms of factual information covered (Murray et al. 2001). According to Marteau and Dormandy (2001) oral information has often shown to have more of an impact on women than written information. However, women are also critical of this type of information often deeming it to be misleading and insufficient. For example, health professionals disseminating screening information may not know about certain conditions found in pregnancy and fetal health, may not have adequate counselling skills, or may simply not have time to go through things thoroughly. Therefore existing studies show that while important, pregnancy information disseminated to women can be of varying quality.

A number of feminist authors have further queried the dissemination and content of information given to pregnant women, arguing that it is part of a further medical regulation of women and their bodies. Marshall and Woollett (2000) for example analysed a number of pregnancy texts/guides. They argue that a number of disciplinary practices are at work in such texts both in planning for pregnancy and through making women responsible for fetal health during pregnancy. Pregnancy texts encourage women to take on board healthy lifestyles which reinforce the importance of contact with health professionals, emphasising a repertoire of pregnancy at risk (Marshall and Woollett 2000). According to them, such practices serve to mask diversity and to decontextualise and individualise pregnancy. This then separates pregnancy from women’s other relationships, identities and knowledges with little regard to the circumstances in which women become pregnant (Marshall and Woollett 2000). This critique highlights an important issue to be explored in the context of this chapter – that is that traditional forms of pregnancy information are aimed at women. They emphasise the importance of women and maternal responsibility in pregnancy thus reinforcing women’s central roles as mothers and as guardians of fetal health (Rapp 2000).

Some of the problems raised by traditional forms of pregnancy information dissemination have perhaps been addressed through women’s use of the Internet. The Internet has great potential in pregnancy for providing tailored information to meet women’s needs. A number of authors have already emphasised the Internet as a great resource for women during pregnancy. For example, Lowe et al. (2009) in their secondary analysis of interview data with pregnant women and their partners found that the Internet was a particular useful resource for women when experiencing problematic pregnancy (‘problematic’ is used to describe women’s understanding that their pregnancy is problematic in some biological way). Lowe et al. (2009) found that often when a problematic pregnancy was defined, women had to look for information sources that went beyond their traditional ones and this is where the Internet was particularly useful. Recent studies have also shown that the Internet can be useful in increasing men’s roles in pregnancy and screening. In their study Locock and Alexander (2006) found that one of the roles men took during their pregnant partners’ screening was that of ‘gatherer and guardian of fact’. Within their study men sought out information about testing available and about the types of conditions found through screening. The findings of their study show that one of the issues that have increased men’s roles in this context is the Internet. Within their study there were accounts of men spending time searching the Internet and taking the lead in asking questions during consultations with health professionals. This is something that will be explored in greater detail in this chapter.

This chapter will explore gender roles in pregnancy information seeking, consuming and disseminating in relation to prenatal blood screening. Most of the chapter will focus on exploring routine screening and ‘normal’ screening results; however, where possible the chapter includes an exploration on information seeking when women are experiencing potentially problematic pregnancies. The chapter will first explore traditional types of information given to women in pregnancy, focusing on analysing the importance of such information to women during pregnancy. The chapter will move on to explore the gendered nature of information seeking. It will highlight the ways in which women actively seek out information about pregnancy and screening, taking the major role in disseminating it to male partners and encouraging partners to read such information. In doing so the chapter makes the argument that information seeking/consuming by both men and women reinforces women’s roles as guardians and gatekeepers of pregnancy. The role of health professionals will also be explored here. In particular, the chapter will focus on the ways in which the roles of health professionals tend to facilitate women’s position as guardians of fetal health. The final section of the chapter will move on to explore the ways in which these roles are perhaps shifting through men’s increased use of the Internet to seek out pregnancy-related information.

Women as information seekers and recipients

In support of the findings of earlier studies, most women within the study discussed the ways in which they sought out and used pregnancy-related information. Women relied on information disseminated from a range of traditional sources such as oral information and leaflets given during routine antenatal care by midwives. Women also sought out other non-traditional sources such as the Internet as can be seen in the account from Liz who was in the third trimester of pregnancy:

I actively found stuff out you know, about the tests and that. You know, I read the leaflets that the midwife gave me and I went on the net to look around, especially about the Down’s testing. What it meant. What the chances were and that.

(Liz, 32, University researcher)

Again, as with existing research on pregnancy, many women within this study wanted to receive information early on so they could make informed choices about the various tests available. Women tended to view this positively as highlighted by Katarina who was at the end of her first trimester of pregnancy with twins:

Actually, again like you say, I just want to know everything as early as possible, at the earliest possible point, then you can make a decision one way or the other, and then you can get used to that then.

(Katarina, 28, Self-employed)

Some women found the amount of information that they received was overwhelming. In fact some women didn’t read everything as they felt that there was just too much information. This can be seen in the account from Rosie who was in the second trimester of her fifth pregnancy:

Well, they did give us lots of information, in fact I were a bit overwhelmed by it, endless leaflets and stuff. Also, there was loads of stuff in the bounty pack (free information pack given to women at the start of pregnancy) about pregnancy and testing. I never really got chance to read them and that.

(Rosie, 28, Housewife)

Women sometimes felt that the information given to them during routine antenatal clinic was repetitive. This can be seen in the account from Chelsea who was in the third trimester of pregnancy:

I did read everything that the midwives gave us you know about the tests but I have to say a lot of it was very repetitive. I actually found that talking to my friends was the best thing, you know, the ones that had already gone through pregnancy.

(Chelsea, 25, Care-worker)

Other women felt that the information they received during antenatal clinic on issues relating to screening was quite limited in terms of content. This can be seen in the quote from Emily who was in the second trimester of pregnancy:

Erm, I think it’s quite limited, the role that the hospital was playing, I don’t think they inform you that much about it, about the choices you can make. But maybe that was because they assumed that I would know anyway, because I do feel quite confident in the choices that I make, so they don’t ask the questions, so maybe that’s why we don’t have those discussions.

(Emily, 30, Health professional)

Some women felt that the formal information disseminated by health professionals in the hospital could be quite intimidating. Again in support of earlier studies women found that the information they got through other women and pregnancy groups was more useful and reassuring (the role of friends will also be explored in more detail in Chapter 6). This can be seen in the account from Katarina who was at the end of her first trimester of pregnancy with twins:

KATARINA: The hospital information is great but a bit frightening, pregnancy twin group is better especially the birth stories at the end (of the session), they take the fear away.

INTERVIEWER: Is that something that you do on a regular basis?

KATARINA: Yes, we meet once a week and swap stories about pregnancy and birth. It’s really helpful, you know to hear other people’s experiences and know that you’re not alone, especially when you are having twins!

KATARINA: (Katarina, 28, Self-employed)

Women who were experiencing their second or third pregnancy generally seemed to feel that they were already more informed as this wasn’t their first pregnancy. However, women who had been through the process already were sometimes still sceptical about the information they had received. Some women felt that midwives didn’t give them enough information about the tests and just performed them without too much discussion. This was especially the case with the first set of blood tests as can be seen in the account from Suzie who was in the second trimester of pregnancy:

Erm, I think I’m quite well informed. But I don’t know whether that’s because it’s the second time, or not. I mean, you’re sort of sat down in a room having a load of blood tests and that in your arm, but you don’t particularly know why. And then the results come back and it’s like everything’s fine, and you sort of think, what have they tested for? You know, why? Why did they take all that blood? Why do this and that? And I don’t know, you don’t particularly get any information from the staff at the h...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Contents
• Acknowledgements
• Introduction
• 1 Information keeping/seeking
• 2 Gender, choice and time
• 3 Imaging and imagining genetics
• 4 Men, masculinity and decision-making
• 5 Gendering ‘good’ and ‘bad’ genes
• 6 Family, friends and heredity
• 7 Transforming social divisions
• Conclusion
• Appendix
• Notes
• Bibliography
• Index