Women and ‘embodied’ responsibility
There was a clear sense of maternal responsibility among female respondents. The feelings of responsibility that women articulated were directly embodied (Ivry 2007). Women felt that because pregnancy took place in their bodies, it was their responsibility to maintain the health of the fetus through modifications to their own lifestyle. Liz, 32, a university researcher in the third trimester of pregnancy, who had received normal screening results, demonstrates this:
So, I think, biologically speaking you've just got to bow down to nature don't you? Take responsibility. If you have made that choice to have children then you have got to modify your lifestyle if you are a woman more than if you are a bloke.
This type of responsibility relating to lifestyle during pregnancy supports other studies’ explorations into maternal responsibility (Markens et al. 1997). Women's feelings of maternal responsibility can also be extended to prenatal screening. Women felt that screening was their responsibility because the screening took place on their bodies. This can be seen in the quote from Emma, 22, a self-employed childcare worker in the second trimester who again had received all normal screening results:
The responsibility is more on me, obviously, because I've got to have most of the tests . . . There's only one thing that he has to do at the beginning [of the pregnancy] (laughs). In terms of tests, I don't know if there are any [tests] that men are offered, maybe those for hereditary illnesses, you probably have to request them.
As authors such as Ettorre (2002) have highlighted, the responsibility women feel for the pregnant body here can be seen as an extension of the self-discipline placed on the pre-pregnant female body. While women may feel responsibility for the maintenance of a slim and healthy body before pregnancy, during pregnancy women are engaged in a type of reproductive asceticism.
Women's feelings of responsibility over screening were also articulated through their worry over screening and test results. As Suzie, 34, a housewife who was in the second trimester of her second pregnancy, articulates below:
I don't really think that men do [feel so responsible] because it's not their results that are coming back and the baby's not in them. So they can sort of get on with what they are doing and it's only when I say that I've got a letter from the hospital that's negative . . . that he's interested.
Women did exhibit different feelings of maternal responsibility (for lifestyle issues and for prenatal screening). However, as argued by Rapp (2000) in her study on amniocentesis, women rarely distinguished the two. As Emma's quote shows:
You carry this baby for nine months and everything you do affects the baby, everything you eat everything you drink, if you smoke, if you’re stressed out. So it's kind of me that has got to make everything different and change, and even though he wants to be a part of it, he's not fully. Do you understand what I mean? But yeah, the responsibility lies on me, because I have to have all these tests. So, definitely more on me.
Women demonstrated a clear sense of embodied responsibility for the health of the fetus. They linked their own behaviours directly with the health of the fetus. However, while respondents’ accounts show a clear sense of maternal responsibility in the context of routine prenatal care and screening, when it comes to high-risk screening results, maternal responsibility highlights a far more complicated picture.
‘It's them faulty genes again’: women and accountability
Several female respondents received positive results for haemaglobinopathy screening and two received high-risk8 results for screening for Down's syndrome and spina bifida. When it came to positive or high-risk screening results, women's articulation of maternal responsibility varied in extent and was related in part to men's involvement in screening (men's accounts are explored in the following section). The female respondents who tested positive for sickle cell and thalassemia were all very pragmatic about their positive result. This can be seen in the account from Jameela, an African student who was in the third trimester of her first pregnancy. She had received a positive test for sickle cell anaemia and her partner Tunde was subsequently tested:
No, I didn't feel as bad about it [the positive test] because he had to be tested too. My test was positive and his test was negative, which we sort of knew beforehand. It was no big deal and he was happy to be tested anyway.
It is also present in the account from Sarah, a school teacher in the second trimester of her first pregnancy:
Well, I was worried sick when I received the positive result. They [genetic counsellors] kept telling me the test was border-line and not to worry because he [partner] was white and it was unlikely he would be a carrier. But I was so glad he was tested, it made me feel it wasn't all down to me and that with his genes we had another shot at a healthy baby. He was great too, very laid back and supportive.
Men's participation in haemoglobinopathy screening appeared to affect women's sense of embodied responsibility because testing was no longer directed just at them. As men's blood was also subjected to screening, women appeared more relaxed about the process. The majority of male partners were happy to be screened and all received normal screening results. Paul, whose partner Flo received a border-line test for thalassemia, was the only male respondent not to be screened. This couple decided jointly that he wouldn't be tested. This was because her test was only border-line, and he was white, and so they felt there was little chance of him being a carrier. As Paul's quote shows:
Well we didn't see much point in me being tested as the potential for me having it was low. I would have been happy to but Flo felt there was no need.
This lack of male refusal to be screened, coupled with the fact that all male respondents in the study had negative screening results, does limit the generalisability of the findings of this study. Male refusal to be screened or a male positive result could result in women experiencing a heightened sense of maternal responsibility as has been shown by research on thalassemia screening in India (Chattopadhyay 2006). In this study, however, where men were screened, their direct participation did seem to indicate a shared sense of responsibility between women and men.
While responsibility was partially shared between women and men with regard to haemaglobinopathy screening, when it came to other sorts of screening which were directed solely at women, the gender dynamics changed. For example, in cases where serum screening had indicated a high risk factor for Down's and spina bifida women's accounts demonstrated a palpable sense of maternal responsibility while men seemed to take less responsibility. This responsibility was directly embodied as women's bodies became the targets of diagnostic testing such as amniocentesis. Flo had received high-risk test indicators for Down's syndrome for both her first and second pregnancies. Her quote below highlights her feelings of maternal responsibility towards this:
I felt there was a sense of responsibility, because yeah, the mother's carrying the baby. . . . Me and Paul [her partner] are equals and he was with me every step of the way, but it's my pregnancy and so when I had to have the amniocentesis I did feel like it was down to me more.
It is worth noting here that routine screening for Down's syndrome was often a very emotive issue and four couples within the study opted not to have the screening.9 The gender dynamics that were played out between men and women regarding routine screening were complex. While men often took part in decision making about women's routine participation in screening (as will be highlighted in the next section), when a test was presented as high risk, women seemed to assume responsibility. This can be seen in the quote from Linda, a childminder who was in the third trimester of pregnancy:
The first pregnancy I had a high result come back on the spina bifida one and it was just awful . . . I was due to see the midwife the next week or something, but it was just really, you know, it made both of us really worry and stuff. But I felt particularly anxious, you know because it's my body. But then, I had the scan and everything was fine.
It's important to stress that within this study, although several respondents received high-risk results for Down's and spina bifida screening, the results of further diagnostic testing came back as normal. This paper can therefore make no claims about the nature of men's roles when these conditions are actually diagnosed.
There were female respondents within the study who emphasised a clear sense of embodied responsibility with regard to other genetic conditions that could be traced to a woman's genetic history. For example, Rosie, 27, was having her fifth child with her partner Pete. She had two children with Microcephaly, a neurological disorder in which the circumference of the head is slightly smaller than the normal average.10 This condition had resulted in two of her children experiencing learning difficulties. She took complete responsibility for this condition. Throughout her interview she talked frequently about how the problem with the children was her fault and related to her ‘faulty genes’:
Yes. Of course, Warren's [son] got problems, Claire's [daughter] not as bad, but the thing is could I cope with another child with all that because I've got two already. I've got two that are fine, it's just, like that, because it's my faulty gene and that's why it's gone on to my children.
How do you know it's your gene?
They did my head and my head's size o’ 16-year-olds. So my head is pretty small. When I were younger they never tested anything like that.
Rosie was interviewed with her partner Pete. During the interview Pete distanced himself from the reproduction of ‘faulty genes’ and made it clear that they were nothing to do with him as his quote below shows:
Well, I knew it wasn't in our family. There's nothing in our family except asthma and you can't test for that.
Female respondents seemed to exhibit a strong sense of embodied responsibility for some positive screening results. In these cases, in support of earlier studies women did appear to blame themselves for the production of faulty genes (Ettorre 2000, Finger 1990). This blame, however, was not extensive and did appear to be related to the type of screening in question and also to men's direct participation in screening.
Although not discussed explicitly by respondents in this study, ethnicity perhaps also has a role here. Apart from one white respondent, Sarah, the women who tested positive for blood-related conditions were South Asian, African and Mauritian. Inherited blood conditions are more common among certain ethnic minority populations then they are among white North European communities.11 In her study Rapp (2000), found that ethnic minority women felt quite knowledgeable about these conditions because they often knew sufferers within their families and communities, and thus took a more practical approach to screening. The connections between gender, ethnicity and responsibility are worthy of further exploration in future research in this area. Within the rest of this paper however, having focused so far almost exclusively on the complex nature of maternal responsibility, the aim is to move on to explore the extent and nature of men's articulations of genetic responsibility.
Men, genetics and fetal responsibility
Little attention has been given to men's direct involvement in prenatal screening in existing research. Recent studies on women's experiences of prenatal screening have started to see the importance of men's involvement in screening (Locock and Alexander 2006). Studies such as these have been useful in highlighting the importance of male roles in screening. However, they focus on men's roles as partners of screening recipients. Expanding on these studies further to include a direct focus on men, this section will explore the diverse nature of paternal responsibility found in male respondents’ accounts in this study.
Although sometimes constrained by work commitments, most men within the study did try to attend at least some of their partners’ screening appointments. Out of the 16 men interviewed, seven attended all prenatal appointments, both community and hospital midwife appointments. This included all blood screening appointments, both haemoglobinopathy screening and screening for Down's syndrome and neural tube defects. Twelve men attended hospital appointments only which included haemoglobinopathy screening and the dating scan, both of which took place at around 12 weeks. It also included attendance at the 20 week anomaly scan.12 Two male partners did not attend any prenatal appointments. One was posted overseas in the army, and the other was a father of five who didn't feel his attendance was necessary.
The majority of male respondents did try to get involved and take responsibility through gathering screening information and by being involved in decision making. An example of this can be seen in the quote from William whose partner Lucy was in the second trimester of pregnancy and who had received normal screening results. William was a doctor, who gathered information on various screening procedures, disseminated information to his partner, attended all screening appointments and encouraged his partner to have a private nuchal fold scan, to check that everything was ok.
I mean, I didn't push her into extra tests. Ultimately it's her body and her decision. However, I wanted to be involved and take responsibility too . . . Men want assurance that everything is alright, just like women.
Another way in which male partners took responsibility was through their involvement in decision making about screening. This can be seen in the quote from Dave below. Dave's partner Zoë was in the third trimester of pregnancy and again had received normal screening results. Dave wanted to be involved in the process of decision making.
Well I wanted to be involved and make the decisions with her. I didn't want her to feel alone. I mean at the end of the day it's our baby isn't it?
Some studies have emphasised the potentially negative aspects of men's roles as decision makers in screening. As Rapp (2000) has argued, this can be an articulation of men's control over women. This, however, was not the case within this study. Men's involvement in decision making was perceived by most women within the study as supportive and indicative of men sharing responsibility for the health of the fetus. In fact, the majority of women felt that they did not want to make decisions without discussing the implications with their partners.
As well as being involved with partners in decision making and information gathering, men also wanted to be more directly involved in screening. They wanted to know how their genes would be passed onto the fetus. Alan, for example, whose partner Jan was in the first trimester of their first pregnancy and who was yet to receive her screening results, wanted to know how his blood was passed onto the fetus:
The screening is all on her, but I would like to know how my genes are passed on, for example will the baby have my blood group or hers? I mean how does that work? It would be nice if men were offered testing too, to see how they might influence the baby's genetic make-up.
The data from this study support the findings of earlier studies which highlight men's interest in paternity, as men wanted to see how their blood or the paternal line was passed on to their offspring (Rothman 1986). However, men's interest in issues such as blood groups in this study also indicated a desire for them to connect with the fetus during blood screening. Several studies have documented the importance of ultrasound in helping men visualise the baby and realise their transition to fatherhood (Draper 2002, Sandelowski 1994). Both women and men argued that it was difficult for men to take responsibility for blood screening because it wasn't happening directly to them and it didn't connect them directly to the fetus in the same ways that ultrasound did. By actively asking midwives about the babies’ blood type men felt more engaged and involved with the fetus and felt that they were taking more responsibility for the health of the fetus.
Men's interest in the impact of their genes on the health of the fetus became more pronounced when they were offered screening themselves. Three men within the study were participants in screening because their female partners had tested positive for sickle cell or thalassemia. These men were African, Asian and white. Most men were happy to be tested. Jameela's partner Tunde, a doctor, was tested for sickle cell and received normal results. As this quote below shows, he was more than happy to do this:
Yes, I was happy to take the test so that we could have assurance that everything was ok. I had no problems with this but saw it as my duty.
Two male respondents were tested for thalassemia, again both received normal results. The first was Bihar, 31, a south Asian shopkeeper who had to be screened for thalassemia as his wife Pinky, 30, had tested positive for the gene. Bihar was happy to be screened and articulated his feelings of shared responsibility:
Well, it's our baby so it's our responsibility. She might be carrying it but I'm the dad so I need to take responsibility too. She had the thalassemia gene so I had to be tested. It was frightening because what happened if we were both positive? We were both really worried but fortunately it was ok in the end.
The second respondent to be tested for thalassemia was Nick, a white secondary school teacher whose wife Sarah had received a borderline positive result. Nick emphasises his role in screening as one of reassurance for his partner.
Well, I think it was a bit of a novelty really, me being tested. I felt like a bit of a spectacle for the midwives. They kept saying, ‘ooh we don't get many men in here’ (participating in screening). Anyway, it didn't bother me and I didn't think twice about being tested. My partner was really worried that her test had turned up positive, and what if mine did too, but I wasn't worried, I kept reassuring her that everything would be ok.
The men who had to be screened themselves articulated direct feelings of responsibility. Their blood and their genes ‘mattered’ and could have a direct impact on the health of the fetus. They felt therefore that they had a partial sense of responsibility with their partners in screening.
While not all men had to be screened themselves, some male respondents embarked on detective work into their ‘genetic’ past. They wanted to search their own history for genetic conditions which might influence the genetic health of their baby. An example of this was Emma's partner, Jo, who had grown up without his biological father. When Emma found out she was pregnant, he went off to trace his genetic history. Unfortunately Jo could not be interviewed as he was overseas with the British army. However, Emma, his partner, talked at length about his detective work into his genetic past:
There's nothing genetically that runs in the family that we know of. The only problem that we do have is that we don't know his real Dad. He grew up with a different Dad, so he's actually gone round to his Nan's and asked her to have a word with his Dad. She did go looking for him (his Dad), and asked him whether there was anything in his history. So he (Jo) has kind of looked into it quite a lot, so, I know it sounds silly but we were just thinking we couldn't take that risk because you never know what's hereditary in other families. He might even be a carrier of something that hasn't developed yet.
Some male respondents already knew of histories of genetic conditions in their families. Other respondents felt that there might be a greater potential for the baby to develop certain conditions due to family history. They seemed to feel an increased sense of responsibility for screening decisions and results in these instances. For example, Ben, whose partner Suzie was pregnant with her second baby (their first baby together), discussed the ways in which having a brother with Down's syndrome affected his feelings of responsibility during screening:
Well, with Down's syndrome we gave it a lot of thought. I have an older brother with Down's syndrome and so I thought about it a lot and wondered whether that might be in the family somehow. This was my responsibility because it's my family. We decided in the end not to have the test because of my experiences. It wasn't just me but her as well. She's pretty strong minded, so if she hadn't agreed with me it wouldn't have affected anything, she would have made her own decision, but luckily, we felt the same.
Data from this study show that men, across class and ethnicity, did take partial responsibility for the genetic health of the foetus. They were involved in decision making and information gathering about screening, and where necessary were also direct participants in screening themselves. This sense of paternal responsibility is part of the expansion of men's roles in pregnancy and childrearing which has occurred more generally from the 1960s onwards (LaRossa 1997). Furthermore, for the respondents in this study who were direct participants in screening themselves, the nature of paternal responsibility signified more than indirect involvement through partners’ experiences in screening. It also highlighted the importance of material connections between fathers and fetuses.