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HIV and pregnancy.

Recently in a hospital in an English provincial town where drugs, HIV infection, and prostitution are problems associated with a distant world of fast city life, a young woman encountered special difficulties with her first pregnancy. Clearly there were problems, but no diagnosis that seemed at all plausible had been offered. Only as she went into labor did a young woman physician make her first diagnosis of AIDS. For the young mother, this was a totally unforeseen disaster-once the diagnosis was made, she was able to identify the source of the infection as a brief sexual encounter preceding die committed relationship in which she had embarked on pregnancy and childbirth. But at this stage, it was too late for the tragedy to be anything other than a double one, for the child was later found to have been born with HIV infection. At the beginning of pregnancy, normal medical care includes testing a sample of blood for a variety of conditions it might be important for a woman embarking on pregnancy or for those caring for her to know about. These include tests for syphilis, rubella, hepatitis, and other possibilities. Few pregnant women are aware of the list of diseases being ruled out at this stage. There is no need for them to be, since for the vast majority the tests are negative. In addition, most of these conditions can be treated effectively and no stigma is attached to positive findings. HIV infection, however, is seen as a special case, posing a special need for informed consent. At the same time, the notion of informed consent is being given an especially strong interpretation, in which extensive counseling is regarded as a necessary condition if consent is to be considered truly informed."

The burden of this counseling is, however, likely to be less medical than social and economic. Medically, HIV infection is a condition that cannot be cured, although there is evidence that some approaches to the problem may help maintain health longer. Undoubtedly, however, the social and financial implications of a positive diagnosis are serious. Health and life insurance, mortgages, and house purchase may all be affected. There may be problems for some types of employment and there are clearly likely to be difficulties on the personal level where the question of what to tell sexual partners or close relatives must loom large. A special practical fear on the part of a pregnant woman may be the loss of a sexual partner who is providing home and support for her. These are far from negligible considerations, and it is understandable, therefore, that some people might prefer to avoid knowledge of seropositivity.

Nevertheless, there may be good reasons to establish a woman's HIV status early in pregnancy; and women who might become pregnant may have stronger reasons than others to be sure that they are not seropositive. Our argument is not that testing should be forced on women who genuinely do not want it, but that it is useful and should be recommended to them-indeed, more strongly, that it should be regarded as routine except where special objections are expressed. Respect for objections need not suggest, however, that "consent" should be given a stronger interpretation for HIV than for other tests administered during pregnancy, or that women should be counseled against giving consent.

Because AIDS in the USA and in Western Europe has been particularly associated both in the public mind and in medical reality with certain clearly defined groups-gay and bisexual males, IV drug users, and hemophiliacs-it would be easy to underestimate the problem it poses for young women contemplating or embarked on pregnancy. In New York City, however, the fact is that AIDS is already the leading cause of death for women aged between twenty and twenty-nine and is soon expected to become the leading cause of death for all women of childbearing age in that city. In the UK, there was a 26 percent rise in the discovery of new HIV infection in pregnant women in 1987. (No data exist, however, on the seroprevalence rate for all women of childbearing age in the U.K)

Once the scale of the problem is appreciated, it becomes clear that this is not a problem for a few individuals only. Nevertheless, in considering the wider aspects, it is important to remember that the problem does come back in the end to individuals. This suggests that the issue should be looked at from three interlocking perspectives.

First is the personal perspective, the considerations and concerns of a woman contemplating or embarking on pregnancy. Knowledge of seropositivity is emotionally traumatic for anyone in any situation, but for a woman in the emotionally precarious early stages of pregnancy it may be especially distressing. When counseling is involved, the nature of that counseling is itself an issue to be considered. What advice should others give to a woman in this position? Does she need to know her HIV status? On what grounds should this information be sought or not sought? And, as far as others are concerned, on what grounds should it either not be established or, if available, be withheld?

Second is the perspective of the caregiver. Here a major consideration is the need for safety in perinatal situations. Obsteuicians, gynecologists, and midwives have a duty to guard against the spread of infection from mother to baby and from patient to patient They also have a legitimate concern in relation to the risks they themselves run in perinatal care-risks that may exceed those of other areas of medicine, since in childbirth open wounds are the norm, and practices such as the sampling of cord blood and the draining of mucus present special hazards. Is knowledge of their patients' HIV status essential for caregivers' own security, and how will this knowledge, or lack of i% affect practice in the maternity unit?

Third is the wider community perspective. It would be a narrow ethical perspective that confined attention to the individual patient, for particularly in the case of a pregnant woman two other individuals are liable to be directly involved. One of these is, of course, the child she is carrying. The other is the child's father. His position raises special considerations we will discuss later. Apart from this immediate small circle, a new issue emerges here. It has been argued that the public interest requires sound epidemiological data on the extent and spread of the disease, and that pregnant women provide the best possible source of this information: they are healthy, sexually active, and provide a more representative sample of the general population than do other groups that have been used for this purpose. Here attention shifts from the interests of the woman to those of the community so that the issue becomes: Should pregnant women be treated as means to other people's ends?

In considering the set of problems that cluster around the issue of HIV and pregnancy, it would be easier to take this last issue first, for the questions involved here are very different from those in the more directly personal areas.

Monitoring HIV Infection by Antenatal Screening

It is important to distinguish between, on the one hand, the collection of epidemiological information that reveals facts relevant to named individuals and, on the other, anonymized testing, in which blood is not tested until all marks of identification other than place, age, and patient category have been removed (unlinked). In the latter case, it is difficult to see what valid objection can be raised to the practice.

One objection that is raised, however, by Dutch feminists, British midwives, and the UK-based National Childbirth Trust among others is that the mere use of women for purposes not directly aimed at their personal good is offensive in itself. As a spokeswoman for the Royal College of Midwives put this point: "Mothers should not be used in this way. There is no current justifiable reason to use them as a surveillance group. They attend antenatal clinics for specific reasons to do with the well-being of them and their babies." She went on to say that "Healthy mothers in this situation can hardly be called volunteers; but more as hostages to the need for new initiative to combat AIDS."

This emotive language can scarcely be justified in the case of genuinely anonymized testing. As the British Medical Association Foundation for AIDS has recently argued, the fact that no individual can be identified means that there cannot be any adverse consequences for people whose serum-already taken for other purposes-is exposed to this one extra test. For this reason, they suggest, specific consent for HIV testing is not required.

In fact many countries do routinely conduct anonymous seroprevalence surveys of this sort; this is why figures are available-from the United States and some African countries, as well as Sweden and other European countries. These make it clear that the figures of those affected are significant at a level recognized to justify routine prenatal screening in the case of other illnesses.

The moral argument about the use of women for ends not their own overlooks the way in which the interest of women beating children is more closely and deeply connected with the community interest than is the case with other patients or populations. To have a child is to commit oneself to society's future. Many women, seeing the issue as one of tackling a threat to that future, will be more than willing to contribute to the knowledge needed to maximize control of AIDS. So while an explicit refusal should of course be respected, explicit consent should not be regarded as a moral requirement where unlinked, anonyrnous testing is at issue.

The Personal Dilemma

The larger question concerns not anonyrnous surveys, however, but the use of HIV testing in clinical settings: Is ignorance the best policy for the individual? It must be accepted that many people do not want to know if they are seropositive since they are aware that even if they are, they may have a reasonable hope of some years of healthy and satisfying life, which could be blighted by knowledge of seropositivity. But this argument, which raises many questions when it is advanced in connection with testing proposals for homosexuals or for heterosexuals whose sexual lifestyle is varied and active, is particularly inadequate when applied to the case of women who are pregnant or contemplating pregnancy, for a number of reasons unique to this situation.

To begin with, some fear that because pregnancy may alter cell-mediated immunity, pregnancy and childbirth could be precipitating factors as far as the development of AIDS is concerned, or that if AIDS is already present these factors may operate to accelerate illness.-' Early diagnosis of opportunistic infections during pregnancy can certainly help prevent both maternal and neonatal morbidity. Most importantly, however, ignorance of a woman's HIV status may lead to the birth of a child with a poor medical prognosis, for there is a very considerable risk of children born to mothers who are HIV-infected being themselves infected, and neonatal morbidity and mortality associated with perinatal HIV is high. Approximately 30 percent of infants born to infected women can be expected to develop AIDS, and over half of these will die during the first year of life."

For all these reasons, for women who are considering pregnancy or who are already pregnant, knowledge of HIV status can make a medical difference. In the United Kingdom, the fact of seropositivity is considered sufficient medical grounds for therapeutic abortion, and knowledge will likely deter many women from embarking on pregnancy if they have not already done so.

This is not, however, to preempt the decision about whether to proceed with pregnancy, for this must be the woman's alone. The question is rather whether such a decision is best made in ignorance. On the other side of the balance are more encouraging recent studies that suggest that a woman who is HIV positive but otherwise healthy may give birth to a healthy baby and remain in good health herself." Some women will be prepared to accept the odds. If a woman does not yet have any children, the decision not to proceed is, in the present state of affairs as regards AIDS, a decision to remain childless. Knowing that her own prognosis is bad, or even anticipating a short life expectancy, may provide a very strong reason for a woman to seek fulfillment in motherhood.

One special case may be mentioned here: that of the seronegative woman whose sexual partner is seropositive. In this case, a woman may have to consider incurring the risk of becoming HIV positive herself to become pregnant; but she may judge this risk to be worthwhile to preserve something substantial from a relationship of love cut short by illness. To make such a decision or to decide responsibly about childbirth, however, an individual needs to know not only the general position but also her own HIV status. If the arguments for personal knowledge are valid, it would clearly also be wrong for a counselor to recommend that the choice be made in ignorance of HIV status. Counseling produces very different results in different contexts, however. In Sweden, for example, where great openness in sexual matters prevails, more than 99 percent of pregnant women accept testing, which is routinely offered them, while in the UK where there is less openness, figures are dramatically lower. Indeed, in one study in a London clinic only nine out of an estimated 1,500 women deemed of "high risk" agreed to be tested.9 If we assume that the social consequences and support services for women identified as infected are similar in the two countries, the magnitude of the difference suggests a strong negative bias on the part of UK counselors. The poor acceptance of testing after counseling is even more a matter of concern in view of the Royal College of Midwives' demand for greatly increased expenditures to extend these services.

Two other special points regarding the individual perspective deserve attention. First if the case for testing at the beginning of pregnancy is accepted, there is a need for speed in diagnosis to allow a maximum of time for the difficult decision about possible termination. It is a disadvantage that HIV may take some time to detect by normal antibody tests, a second test after a three-month interval being recommended to confirm an initial negative finding, while other tests, which are less likely to be falsely negative, are not readily available outside research settings. But this is not a good reason for abandoning any attempt to test at all, since failure to identify the antibody is a problem only for the small minority of cases where the infection has been newly contracted.

Second, it may be argued that tests in these circumstances may be more visible and less confidential than tests taken by individuals in less pressured circumstances. The reason for a termination of pregnancy may emerge, bringing in its train all the consequences of publicity mentioned earlier. But this is not a necessary outcome, and the possibility is in any case not sufficient to outweigh the importance of this information for the woman herself given what is at stake.

The Issues for Caregivers

These two last considerations, however, point beyond the predicament of the pregnant woman and toward the surrounding circumstances, the social context within which decisions-decisions about testing, for example, or about termination of pregnancy-must be made. Most directly concerned are those with care responsibilities for pregnant women: physicians, midwives, nurses, counsellors. There are good reasons for beginning with their concern for safety, since as it turns out this has considerable consequences both for patients with HIV infection, for those deemed to be at risk of it, and for patients not thought to be at risk.

This may seem at first sight a surprising claim, but HIV/AIDS is already having a significant effect on antenatal, obstetric, and pediatric care. At the antenatal stage, invasive investigative techniques (such as chorionic villi sampling and amniocentesis) that can give information about the fetus during the early weeks (detecting, for example, such conditions as Down syndrome) are in the case of women who are HIV positive or considered to be "at risk" likely to be avoided for fear of mixing maternal/fetal blood and secretions."

Some clinicians, too, recommend cesarean deliveries for such women to avoid possible transmission of the virus to the baby during normal vaginal birth, pending definitive results of investigations into the relative risks of modes of transmission from mother to baby.12 Transmission, however, may take place during pregnancy, in utero, through the placenta, or during the birth process itself In the present state of knowledge, then, there is room for doubt as to whether cesarean operations do reduce the risk of transmission of the virus.

Because staff must see that other mothers and babies are protected, the Royal College of Obstetricians and Gynecologists' guidelines advise that women who are known to be HIV positive or who are considered to be "high risk" should be looked after apart from other mothers and babies during labor, delivery, and immediately following birth, and that they should not be allowed to handle other women's babies.

The threat of HIV infection means, too, that a baby is likely to be delivered by a team wearing full protective clothing: cap, eye protection, mask, and boots or overshoes since "body fluids may be shed unexpectedly and explosively."

These precautions are recommended also following labor and during the early post-partum period. The use of speedy and efficient mouth-operated suction of mucus at the time of delivery is no longer recommended. Investigative techniques to detect abnormal responses during labor-such as scalp blood sampling, a technique that is highly specific and accurate-are likely to be abandoned in favor of less efficient but safer procedures in terms of avoiding transmission of the virus.

Care of the newborn also involves quite extreme precautionary measures. Babies are to be handled with surgical gloves. These are recommended not only when touching the cord or doing heel pricks, but also when changing diapers or dealing with vomit. Disposable paper tape measures are proposed for measuring the infant's length and head circumference. Breast-feeding by HIV mothers is also discouraged, in view of the evidence of virus transmission by this means.

In the United States, some of these measures are recommended as universal practice independently of the HIV risk as a precaution against all blood-borne infections. In the United Kingdom, however, the natural childbirth movement has long campaigned for less technological management of birth and its aftermath. They would see unmediated human touch as important for both mother and baby.

It may be that informality of approach and setting must now be abandoned in general in maternity care. However, at least in the UK, it seems that RCOG remains ambivalent on this issue, seeing stringent precautions as necessary in the case of women seen as "high risk" for HIV, and unnecessary in other cases.

Yet the question of "high risk" women and how they are to be identified is extremely controversial. Guidelines vary, but include: IV drug-users and their sexual partners; partners of known HIV-positive men, such as some hemophiliacs; the partners of male bisexuals; prostitutes; women from African countries other than those bordering on the Mediterranean; and women who have had sexual relations with men from these places, or whose sexual partners have. In Sweden, the categories are widened to include people from the U.S., and recipients of blood transfusions since 1979. A mere summary of these guidelines is sufficient to show that both many apparently "at risk" women will be wrongly presumed to be so, and also that many genuinely "at risk" will fail to be identified merely by questioning. Sheldon Landesman and colleagues, for example, report a study in an inner city hospital in New York in which self-reporting and interviews failed to identify 42 percent of seropositive women. Without the follow-up testing of all individuals in this sample, five out of twelve women who were in fact HIV antibody positive would have gone undetected. This constitutes a seroprevalence rate of 1.1 percent in a group of women with "no identifiable risk factors."

Compared with actually testing for evidence of HIV infection, it is clear that the risk concept, when used so as to affect significantly a woman's perinatal care and that of her child, is a dubious and unreliable tool. In the case of genuine infection the precautions may unfortunately be necessary. Whether they are is a medical judgment on which we do not embark. But in the face of mere possibility they are undoubtedly distasteful and extreme. Uncertainty about HIV status creates a situation of anomaly and paradox for patients and staff alike. Meanwhile, contradictory messages are sent out: for example, it is recommended that a woman who needs resuscitation should be dealt with by staff who wear the correct clothing and proceed according to the current recommended practice and standards," but "it must be emphasized that maternal resuscitation should not be delayed whilst awaiting the appropriate equipment .... If these measures are essential, then the tension can only be resolved by treating all untested women as infected, or, as the term universal precautions" suggests, treating all women as potentially infectious. The conclusion, then, to be drawn from these complex safety considerations points in the same direction as the considerations to be taken into account by the patient herself- accurate knowledge of HIV status is important in the perinatal situation. But what of the broader picture?

The Wider Context

A number of official statements about caregivers' responsibilities have defined these in terms that seem to limit them to the patient directly before them. But a woman on the threshold of pregnancy and childbirth is not an isolate or a unit. Intimately connected with her are child and-in most cases-husband or sexual partner. The narrower perspective has in fact never obtained in the case of maternity care, where mother and baby are regarded as a joint responsibility of the medical team.

As far as the well-being of the child is concerned, most modem societies declare their interest by making it, for example, a legal requirement on a pregnant woman to seek medical care. Without entering into the debate about abortion, it should be stated that the authors of this article have no doubt that a woman who has good reason not to proceed with a pregnancy should not be forced by others to do so. Nonetheless, society does have an interest in women making these choices in a thoughtful and well-informed way. Neither women nor their medical attendants can reach rationally based decisions in relation to HIV issues in ignorance of the facts in a particular situation. To be taken into account here if the woman is in fact HIV positive are not only the medical risks, but also the question of who is to care for the child if either or both parents are unlikely to survive its infancy. It is important that medical advisors, counselors, or caregivers should not attempt to preempt the patients fight to consider these aspects, although paternalistic attitudes in medicine, particularly in the area of gynecology and obstetrics, are not uncommon. A British gynecologists for example, writes: "What should we do about mothers-to-be with positive tests?" and goes on to argue, "There is at present no effective treatment to offer pregnant women with HIV infection" (emphasis added). Yet clearly there is much to be done medically with pregnancies taken to term, even apart from the important issue of termination.

And what, finally, of the sexual partner of an infected woman? He may or may not be the source of her infection and may or may not be HIV positive. If he is not the source of her infection and is HIV negative, then he is clearly at risk, and the question of disclosure to him is more sharply at issue than it is in the more general cases that have been discussed elsewhere by writers concerned with the question of medical confidentiality.2' The pregnancy is in itself evidence of an active sexual relationship without protection, and would also be seen by most couples as a time to continue sexual relations without protection.

Clearly in such a case a woman must be urged to tell her sexual partner, and many women will, in any case, set their partners' health above their own more narrowly defined interest. As far as physicians are concerned, the situation could be regarded as one in which a breach of confidentiality would be justified where a woman was unwilling to take any kind of action herself, though as a special exception and not as one in which a new principle of a duty to inform had supplanted the usual need to preserve confidentiality.)

Such widening implications may lead us to reiterate the position so far argued for: that women contemplating pregnancy are in a particular "need to know" situation regarding their HIV status. Once this is more widely perceived by women, it is possible that they will fill a vital role in the war against AIDS by bringing this disease out into the open, where it will be treated as a disease like any other, and not as a social embarrassment or stigmatizing condition.

If this does not happen, the wider picture is bleaker still, as evidence from other parts of the world suggests. We may expect a dramatic impact on health and social services with huge economic costs and in the end-since this is a disease that attacks human beings in their reproductive function-an impact on birth patterns and a threat to population replacement. In the Third World these consequences, already visible, are beginning to be perceived as a threat to economic and political stability.

What is the way forward? Ultimately, of course, the prevention of perinatal transmission depends on protecting women of child-bealing age from HIV infection. In the absence of medical means of doing this, it is important that those with responsibility for health and sex education move this issue to the front of education about HIV and AIDS. (Currently, such programs in the UK, for example, give scant attention to the problem of perinatal transmission, and programs of education for maternity do not mention AIDS.) It is vital for girls to understand the importance of knowing, before becoming pregnant, that they are not HIV positive. It is important for them to understand that if they are pregnant, there are good reasons to establish their HIV status at the earliest possible stage.

As far as counseling and medical practice are concerned, those working in this field should recognize the importance of testing for HIV infection as another routine procedure except in those cases where a patient specifically objects. Patients should be notified that HIV screening will take place, but in-depth counseling should be reserved for those with questions or who later return with positive results.

This iS not to set the community or the public interest above that of the individual woman. Far from it. For the worst thing that could happen to any young woman embarking on childbearing is to reach the later stages of pregnancy and childbirth and then find out what she would so much have preferred to know earlier: that what would have been a single tragedy has been converted through ignorance into a double one.

References

1 John Osborne "Mothers and Babies" in AIDS., Meeting the Community Challenge, Vicky Cosstick, ed. (Slough: St Paul's Publications, 1987), A press report states that the percentage of HIV positive women who have acquired the virus solely through sexual contact has risen from 11 percent in 1985 to approximately 40 percent in 1988; the report adds that the typical profile of a woman diagnosed as HIV-positive in the United Kingdom is that she is white, in her twenties, working, and in a steady relationship. The Guardian, 14 December 1988.

2. General Secretary Ruth Ashton quoted in Press Release of Royal College of Midwives, London, 25 May 1988.

3. British Medical Association, "BMA urges anonymous HIV testing," The Guardian, 27 August 1988.

4 Howard Minkoff et al, Routinely Offered Prenatal HIV Testing," New England journal of Medicine 319:15 (1988), 1018.

5 See Howard Minkoff, Acquired Immuno-deficiency Virus," Journal of Nurse Miduifery 31:4 (1986), 189-93, at 191; Catherine S. Peckham, Yvonne D. Sentura, and Anthony E. Ades, "Obstetric and Perinatal Consequences of Human Immuno-deficiency Virus HIV) Infection: A Review," British journal of Obstetrics and Gynecology 94 (May 1987), 403-407; see also Minkoff et al,, "Routinely Offered Prenatal HIV Testing." However, in the case of asymptomatic women, recent studies would indicate a more optimistic outcome: Dr. Martha Rogers, Chief, Pediatric and Family Studies AIDS Program, CDC, private correspondence.

6 See The National Swedish Board of Health and Welfare, HIV and AIDS in Care" (1988), 11.

7 BMA, Third BMA Statement on AIDS (1987).

8 Gwendolyne B. Scott et al., "Mothers of Infants with the Acquired Immuno-deficiency Syndrome. Evidence for Both Symptomatic and Asymptomatic Carriers,"journal of the American Medical Association 253:3 (1985), 363-66.

9 Ministry of Health and Social Affairs (Stockholm, 1988), 36. On the British example, see Raymond B, Heath et aL, "Anonymous Testing of Women Attending Antenatal Clinics for Evidence of Infection with HIV," Lancet, 18 June 1988, 1394. In the US, testing in a Brooklyn health center was offered to all pregnant women (i.e., not simply those from high risk groups) and was accepted by 40 percent. See Minkoff et at, Routinely Offered Prenatal HIV Testing."

10 Ashton, Press release.

11 See advice given in The Royal College of Obstetricians and Gynecologists" "Report on Problems Associated with AIDS in Relation to Obstetrics and Gynecology' UV, 1988), 6, Note 5.

12 See E Chiodo et aL, Vertical Transmission of HTLV III" Lancet, 29 March 1986, 739.

13 RCOG, "Report on Problems Associated with AIDS in Relation to Obstetrics and Gynecology," Appendix III.

14 RCOG, Report on Problems Associated with AIDS."

15 Department of Health and Social Security, UK HIV Infection, Breatfeeding and Human Milk Banking Guidelines for Doctors, Midwives, Chief Nursing Officers. (London: Department of Health and Social Security, April 1988).

16 See Sheldon Landesman et al, "Serosurvey of Human Immunodeficiency Virus Infection in Parturients," Journal of the American Medical Association 258:19 (1987), 2701-2703, at 2703.

17 National Swedish Board of Health and Welfare, HIV and AIDS in Care" (1988), 19.

18 Landesman et aL, Serosurvey," 2702.

19 RCOG, Report on Problems Associated with AIDS," 8.

20 The Royal College of Nursing in London, for example, was until recently of the opinion that anonymous screening is an invasion of the integrity and privacy of the human being: testing, even if anonymous, should only be done with consent and with full counseling support. See letter to Chief Nursing Officer, Department of Health and Social Security, "Response of RCN to DHSS Consultative Document on Anonymous Screening" (August 1988).

21. Janine Railton, "Women with AIDS" in AIDS.Meeting the Community Challenge, 52-54, at 54.

22 John Osborne, Mothers and Babies," in AIDS. Meeting the Community Challenge, 3235, at 33.

23 See, for example, Grant Gillett, "AIDS and Confidentiality,"journal of applied Philosophy 4 (1987), 15-20; Raanan Gillon, "AIDS and Medical Confidentiality," British Medical journal 27 June 1987,1675-77.
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Title Annotation:includes related article
Author:Almond, Brenda; Ulanowsky, Carole
Publication:The Hastings Center Report
Date:Mar 1, 1990
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