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MATERNAL AND INFANT HEALTH IN DIVERSE SETTINGS

Rethinking Mandatory HIV Testing During Pregnancy in Areas


With High HIV Prevalence Rates: Ethical and Policy Issues
We analyzed the ethical | Udo Schuklenk, PhD, and Anita Kleinsmidt, LLB, LLM
and policy issues surround-
ing mandatory HIV testing of
IN 2005, BETWEEN 36.7 AND contingent upon the pregnant almost universal uptake, whereas
pregnant women in areas
with high HIV prevalence 45.3 million people were esti- woman seeking antenatal care, testing rates in provinces using opt
rates. Through this analysis, mated to be HIV positive. Be- being screened for HIV, and in are only 50% to 60%.7 In
we seek to demonstrate that tween 4.3 and 6.6 million per- agreeing to medical intervention. Alabama, uptake increased from
a mandatory approach to sons were infected with HIV in The continuing high number of 75% to 88% after a switch from
testing and treatment has that year alone, and approxi- children with vertically acquired opt-in to opt-out testing.8
the potential to significantly mately 3.1 million deaths were HIV attests to failures at various It is significant that making it
reduce perinatal transmis- attributed to AIDS. About 35% stages of this process. The scale more difficult to avoid testing
sion of HIV and defend the of newborns born to HIV- of the problem demonstrates in- translates into larger numbers of
view that mandatory testing
infected women contract the dividual tragedies on an over- pregnant women finding out
is morally required if a num-
virus from their mothers if efforts whelming scale and a threat to about their HIV status. In turn,
ber of conditions can be met.
to prevent mother-to-child trans- the public health of the commu- they and their health care pro-
If such programs are to be
introduced, continuing med- mission are not in place. In nities in question. viders are able to make informed
ical care, including highly 2004, for example, this mode of Pregnant women who seek choices about appropriate
active antiretroviral therapy, transmission resulted in up to 2.8 antenatal care are typically of- courses of action. In Ivory Coast,
must be provided and preg- million HIV-infected children fered 1 of 2 types of HIV testing, fewer than 50% of pregnant
nant women must have worldwide. More than 600 000 referred to as opt in and opt out. women who test HIV positive re-
reasonable alternatives to children were newly infected With opt-in testing, the health turn to receive treatment, which
compulsory testing and with HIV during 2005, and it is worker offers the HIV test, and if would lower rates of mother-to-
treatment. We propose that estimated that a similar number the woman seeking antenatal child transmission.9 An analysis
a liberal regime entailing
of children died of AIDS in the care elects to have the test, it is of pregnant women in the United
abortion rights up to the
same year.1 accompanied by pretest counsel- Kingdom who refused testing
point of fetal viability would
A landmark 1994 multicenter ing and voluntary first-person in- showed that these refusers
satisfy these requirements.
Pilot studies in the high- trial conclusively demonstrated formed consent. In most devel- were twice as likely to be in-
prevalence region of south- the efficacy of using antiretroviral oped countries, HIV testing of fected with hepatitis B virus as
ern African countries should therapy to reduce mother-to- pregnant women is voluntary those who agreed to be tested.10
investigate the feasibility child transmission of HIV,2 show- and requires informed consent A study conducted at the
of this approach. (Am J Pub- ing a 67.5% relative reduction in and elaborate counseling proce- South African Johannesburg
lic Health. 2007;97:1179 mother-to-child transmission with dures.3 Whether opt-in testing Hospital determined that the
1183. doi:10.2105/AJPH.2006. the use of zidovudine. Since should be applied in developing HIV seroprevalence rate among
093526) then, researchers have investi- countries with substantially women who refused routine an-
gated the effects on mother-to- higher HIV prevalence rates has tenatal HIV screening was a stag-
child HIV transmission of differ- been called into question.4 In gering 44%. This rate was higher
ent drug regimens, shorter most developing countries, ante- than the HIV prevalence in the
courses of drugs, breastfeeding, natal clinics are short staffed and general antenatal population at
delivery by caesarian section, counselors overburdened.5 the hospital, which was 29.4%.11
vitamin supplements, and treat- Opt-out testing involves the The women who refused HIV
ment of newborns whose moth- woman being told that HIV test- testing agreed to take part in this
ers did not receive antiretroviral ing will be carried out along with anonymous study if their HIV
therapy. other routine tests unless she re- status was not disclosed to them.
This intensity of research into fuses. Adoption of the opt-out ap- Women may have refused testing
ways of reducing vertical trans- proach to prenatal HIV testing has because they believed that they
mission of HIV has led to a focus resulted in a marked increase in were not at risk or, conversely,
of attention on the obstetric care pregnant women agreeing to take that their fear of being at risk
of pregnant women in high- the test.6 In Canada, provinces would be confirmed by the test.
prevalence regions. Treatment is using the opt-out approach show Other crucial factors may have

July 2007, Vol 97, No. 7 | American Journal of Public Health Schuklenk and Kleinsmidt | Peer Reviewed | Maternal and Infant Health In Diverse Settings | 1179
MATERNAL AND INFANT HEALTH IN DIVERSE SETTINGS

been fear of the stigma associ- that a 25% increase in testing Botswana and other countries conflict between the rights to au-
ated with HIV/AIDS and the would result in an additional in- with similar programs offer free tonomy, privacy, and freedom of
possibility of being shunned by crease in HIV detection of 7.5%. (but voluntary) highly active anti- movement of pregnant women
ones community or worse (e.g., Use of the ACTG076 regimen retroviral therapy (HAART) to and the prevention of harm to fe-
harassment, loss of livelihood, (antepartum and intrapartum zi- parents for as long as clinically in- tuses. The Canadian case of
eviction, murder).12 dovudine for the mother and 6 dicated in an effort to ensure that Winnipeg Child and Family Ser-
Failure to undergo testing for weeks of treatment for the new- children have surviving parents vices v DFG concerned a glue ad-
HIV could also be related to ex- born) would result in HIV being capable of looking after them. dict who had given birth to 2
ternal factors such as poverty and averted in 1.1% to 1.5% of all This is a direct response to the children with abnormalities.17
poor access to clinics (the testing newborns. Given South Africas 1 ever-growing number of AIDS Upon her becoming pregnant for
model proposed here would million births per year, 11 000 to orphans on the African continent. the fourth time, the child care
apply to pregnant women who 15 000 infections could be pre- In a dramatic turnaround of the services department applied for
have access to antenatal clinics). vented (Mike Urban, National developed world status quo, an order placing her in a treat-
In a meta-analysis of recent stud- Health and Laboratory Services, Clark concluded his analysis of ment center to manage her with-
ies of HIV/AIDS-related stigma Johannesburg, South Africa, writ- the problem by suggesting that drawal and monitor the preg-
in developing countries, it was ten communication, September the prevention of perinatal HIV nancy. The lower court granted
concluded that much-feared neg- 2006). transmission in Botswana, be- the order because the court
ative community or partner re- Here we address an important cause of the availability of anti- should only step in when it is
sponses are far less common than ethical and policy issue, namely retroviral therapy for infected certain that the mother intends
women assume.5 Indian investiga- the obligations of pregnant mothers and their children, to proceed to give birth.17
tors concluded that actual stigma women and authorities in reduc- greatly outweighs the burdens of The majority in the appeals
experienced by women with HIV ing the number of infants born the possible violation of the preg- court overturned the order on
infection is lower (reported by with HIV infection in high- nant womans privacy.15(p7) the basis that the fetus did not
26% of women) than the fear of prevalence countries where med- Our argument in favor of have legal status while in utero
being stigmatized (reported by ications aimed at preventing mandatory testing and treatment and that the pregnant mother
97%).13 This suggests that many mother-to-child transmission are of HIV-infected pregnant women could not therefore be forcibly
women are probably overly con- available to individuals irrespec- in areas with high HIV preva- held for treatment. An infant ac-
cerned about stigma and that, in tive of their capacity to pay. Re- lence rates depends on a number quires rights only upon being
reality, their likelihood of being cent bioethical analyses diverge of conditions being met: the born alive. The court also ex-
stigmatized is substantially from the developed world con- women in question would have pressed concern that penalizing
smaller than they think it is. sensus on this issue and argue had voluntarily chosen to carry pregnant women might deter
Confidential HIV tests as well that both compulsory testing and the fetus to term; they would them from seeking antenatal
as free or affordable drugs aimed compulsory treatment could be have had a reasonable alternative care. Dissenting judges Sopinka
at preventing mother-to-child defensible in a public health to this course of action (e.g., abor- and Major were in favor of the
transmission of HIV are accessi- emergency such as that of tion at least until the point of fetal intervention to prevent harm to
ble to an increasing number of AIDS.15 The initial developed viability); and continuing volun- the fetus:
pregnant women in developing world consensus stemmed from tary treatment with HAART
countries. The price paid by the wide acceptance of argu- would be available to them. The this interference is always sub-
HIV-infected newborns for their ments suggesting that women confidentiality of the womens ject to the womans right to
end it by deciding to have an
mothers failure to undergo test- have an absolute right to control HIV status should ideally be abortion. . . . When a woman
ing and treatment is very high; their own body and that only maintained during as well as after chooses to carry a fetus to
the average life expectancy of an very few infections of newborns their pregnancy. Delivery mecha- term, she must accept some re-
sponsibility for its well-being
HIV-infected newborn who does would occur as a consequence of nisms should be developed that and the state has an interest in
not receive state-of-the-art med- some infected womens choice allow testing and treatment and trying to ensure the childs
ical care is about 2 years.14 Dur- not to undergo testing.16 ensure continuing confidentiality. health.17

ing this time the newborn suffers Botswana, a southern African However, ultimately the latter
from a range of life-threatening country, has adopted the opt-out condition is not imperative. Canadian law does backdate
illnesses; the average HIV- system of HIV testing for all pa- fetal rights if the child is born
infected newborn lives a short tients who seek care at health LIABILITY FOR HARM TO alive. This means that a child
life of low quality. care facilities, including pregnant AN UNBORN CHILD born alive who suffered harm be-
In South Africa, where the HIV women. One of the objectives of fore birth can recover compensa-
antenatal prevalence rate is ap- such programs is to reduce the Courts have often been con- tion for damages, even though
proximately 30%, we estimated number of infected newborns. fronted with the problem of the harm occurred at a time

1180 | Maternal and Infant Health In Diverse Settings | Peer Reviewed | Schuklenk and Kleinsmidt American Journal of Public Health | July 2007, Vol 97, No. 7
MATERNAL AND INFANT HEALTH IN DIVERSE SETTINGS

when he or she was not legally a child she wished to carry to morally acceptable. A variety of HIV testing of pregnant women
person. In one instance, a mother term. In South Africa and Aus- hotly contested marker events mandatory.22 The prevalence of
who withheld her HIV status tralia, legal personhood of the (i.e., stages in fetal development) HIV is several magnitudes lower
from medical staff and subse- fetus can be backdated if the were proposed after which abor- in the United States than it is, for
quently gave birth to an HIV- child is born alive and has a legal tion was argued to be unethical.23 instance, in Botswana, yet even
positive child was charged with claim that arose while he or she The abortion debates effectively there liberal attitudes are begin-
criminal negligence causing bod- was in utero. Although it is be- address the question of whether ning to be replaced by policies
ily harm and failure to provide yond the scope of this article to fetuses have an overriding moral designed to achieve better (pub-
the necessities of life (i.e., proper discuss wrongful life litigation claim on women to carry them to lic) health outcomes.
care, protection, shelter, food).18 and disability rights arguments term. There is at least 1 similarity Feminist activists in devel-
In contrast, civil courts have against prenatal screening, we between these debates and the oped countries have argued
ruled that a child cannot sue his wish to point out that a number current debate, namely the ques- against compulsory testing and
or her mother for injuries in- of legal systems are attempting to tion of whether an abortion might treatment, criticizing a suppos-
curred during pregnancy as a re- find a balance between discour- be an acceptable solution for an edly maternal ideology [ac-
sult of the mothers conduct (e.g., aging prenatal harm and preserv- HIV-infected pregnant woman cording to which] good mothers
Dobson v Dobson,19 a Canadian ing the right to termination of trying to avoid giving birth to an engage in acts of self-sacrifice
case in which a child sued his pregnancy. infected newborn. This is compa- and self-abnegation, always put-
mother for the injuries he in- rable to traditional discussions ting the interests of their chil-
curred as a consequence of her THE TRADITIONAL VERSUS about the moral acceptability of dren before their own.22(p349) It
negligent driving while pregnant THE CURRENT DEBATE abortion in cases in which the is unclear to us how HIV test-
with him). newborn is at serious risk of an ing and acceptance of medica-
In Canada, child protection In this debate, it is worthwhile inheritable genetic illness. tion that not only reduces peri-
legislation has also been used to to recall strategies deployed in That, however, is where the natal HIV transmission rates
forcibly treat pregnant women in the abortion controversies and similarity ends. Although this is but also preserves mothers
an effort to prevent harm to the reflect on the question of how not the place to argue2426 our lives can reasonably be consid-
fetus. In the United States, health the current debates do and do position on the abortion contro- ered self-sacrificial acts. The
and social services authorities not relate to those bitterly fought versy, we consider it important to critics have also reconstructed
obtain court orders for this pur- issues. Arguments by various au- stress that, from a policy perspec- the dispute as akin to the tradi-
pose.20 Given that a competent thors have attempted to place the tive and from an ethics perspec- tional conflict between fetal
person is allowed to refuse even suggestion that compulsory test- tive, logically it is perfectly feasi- and maternal interests, that is,
life-saving treatment, some courts ing should be introduced for ble to hold a liberal point of view the fetuss supposed interests
appear to be giving recognition women in high-prevalence areas in the abortion controversy and weighed against the pregnant
to the fetus as a separate patient, in the same category as the view to favor a restrictive point of womans interest in maintaining
although technically, as men- that abortion is always wrong.22 view on the issue of mandatory control over her own body.
tioned, infants acquire rights only The suggestion here is that the HIV testing of pregnant women This argument is flawed in
after being born alive. US social fetuss life is of greater impor- in areas with high HIV preva- a crucial respect. What if we
services agencies have removed tance than the womans right to lence rates. granted such women the right
children from the custody of a control her own body. This anal- The current debate on this to have an abortion instead of
pregnant woman who has ex- ysis overlooks the fact that the issue started in developed coun- undergoing testing? If pregnant
posed a fetus to harm through pro-test argument is not neces- tries, most vigorously in the women decide voluntarily not to
substance abuse and brought sarily about fetal life but about United States, after a 1994 study have an abortion, the issue is no
charges of inter alia child abuse, that of the newborn itself. In the demonstrated that zidovudine, longer about fetal rights but
neglect, reckless endangerment, current controversy, it is logically when given to infected pregnant clearly about an infant they want
and manslaughter.21 possible to hold a pro-choice women and newborns, would re- to bring to term. Moral obliga-
The United States has seen a view in the abortion debates and duce perinatal transmission of the tions toward improving the new-
wave of fetal protectionism in a compulsory testing and treat- virus. After years of controversy, borns chances of living a life
the form of laws criminalizing ment view. the scales seem to be tipping worth living can be derived from
prenatal harm through abuse of The traditional debates on the slowly toward the mandatory ap- the pregnant womens decision
alcohol and illegal drug use, as issue of interfering with womens proach we advocate. Several US that the infant should come into
well as legislation allowing dou- reproductive choices were states advocate mandatory testing being (i.e., the decision not to
ble homicide charges to be squarely focused on the moral of newborns, and recently, addi- abort). The decision to simultane-
brought against someone who status of embryos and the ques- tional states have moved toward ously choose to carry the fetus to
harms a pregnant woman and a tion of whether or not abortion is introducing legislation making term and not, at the very least,

July 2007, Vol 97, No. 7 | American Journal of Public Health Schuklenk and Kleinsmidt | Peer Reviewed | Maternal and Infant Health In Diverse Settings | 1181
MATERNAL AND INFANT HEALTH IN DIVERSE SETTINGS

reduce the fetuss chances of DEFENDING with continuing access to essen- such concerns are legitimate
contracting HIV constitutes a CONDITIONALITY tial life-extending AIDS drugs. and must be taken seriously. We
case of harm to the subsequently This access would have to be propose a compromise solution.
born child. As has been argued We propose stringent condi- voluntary, in that continuing Health care providers should
persuasively by various authors tions that must be met before mandatory HAART treatment develop treatment strategies
from different philosophical tradi- the introduction of any manda- would not be feasible in a coer- that enable practitioners to
tions, choosing deliberately not tory testing and treatment pro- cive regulatory environment. maintain the confidentiality of
to act to prevent harm when one grams. Our first condition: There are several good reasons both the mother and the new-
could have acted without unrea- women must have made a vol- for this condition. Newborns born. However, at the same
sonably high costs to oneself is untary decision to carry the chances of survival are improved time, we recognize that once
comparable to similarly deliber- fetus to term, and the option of significantly if there is a parent women decide to carry on with
ate actions that actively produce abortion must be made avail- available to care for them. De- their pregnancy, they must ac-
the same amount of harm.27,28 able to them. Building on Thom- veloping countries with high cept some of the negative con-
What is significant about both sons classical analysis,29 we HIV prevalence rates are unable sequences that flow from an
the conservative and the liberal agree that although women are to cope with the existing number HIV-positive test result, espe-
view is that they lead to a con- not morally obliged to altruisti- of AIDS orphans. Adding or- cially the difficulty of obtaining
clusion many would consider cally carry a fetus to term that phans to those already in exis- medical care for themselves and
counterintuitive, namely that they do not wish to carry to tence is likely to increase the their newborns under condi-
pregnant women in countries term, they are not entitled to in- strain on such societies. tions of strict confidentiality.
with high HIV prevalence rates jure or prejudice the future life Third, women who are tem- One could argue that, as op-
should undergo compulsory test- of a fetus they wish to carry to porarily on HAART and then posed to advocating mandatory
ing and, if HIV positive, they term. As Colb pointed out, the taken off such medication are testing and treatment, we should
should possibly be compelled to latter is a qualitatively different likely to develop drug-resistant aim to increase the number of
take medication to reduce the proposition altogether.30 How- strains of HIV.31 Approximately women who voluntarily undergo
risk of perinatal transmission. ever, if women are unable to ac- 25% of women who only have testing and treatment. We should
The conservative, or anti-choice cess a reasonable alternative to taken a HAART short course expand educational programs
view, arrives at this conclusion carrying the fetus to term (i.e. (e.g., nevirapine) develop drug- and persuade rather than force
because it prioritizes the develop- abortion) and their decision to resistant HIV strains within a pregnant women to be tested
ing fetus above womens rights to continue the pregnancy is ren- year. Should they give birth in and treated. We believe that al-
privacy and control over their dered involuntary, it is less clear a subsequent year, treatment though such programs are valu-
own bodies. The liberal, or pro- why they should accept obliga- would be substantially more able, it is not good public health
choice view, reaches the same tions toward the fetus or the difficult. Mothers are likely to policy, given resource constraints
conclusion through a very differ- prospective newborn for that die faster as a consequence of in countries with high HIV prev-
ent route. Here the argument matter. this problem. To expect such ex- alence rates, to divert resources
focuses entirely on the harm-to- In cases in which women visit cessive altruism from them is away from testing and treating
others case. Abortion is consid- antenatal clinics too late to have unreasonable. It is also likely people toward activities related
ered morally neutral (or nearly an abortion (after the fetus is that some of these women to health promotion and counsel-
neutral) for reasons that predom- viable outside the pregnant would introduce drug-resistant ing. In cases of conflicting needs
inantly have to do with the de- womens body in its own right), strains of the virus into the and limited resources, preserving
velopmental state of the fetus. it is arguable that mandatory wider community, making the lives must take priority over
This pro-choice rationale leads to testing and treatment are accept- fight against AIDS even more counseling.
a seemingly nonliberal conclu- able. Prior to viability, abortion, difficult to win. Our analysis cannot be ex-
sion whenever women decide from a liberal perspective, could Our final condition is that tended directly to developed
autonomously to carry the fetus be argued to be morally cost womens confidentiality should countries with low HIV preva-
to term. In that case, all other neutral. After viability has been be maintained. Although there lence rates. The ethical frame-
things being equal, there is a attained by the fetus, destroying is some evidence that the con- work driving our model is
high likelihood that a newborn it is morally questionable be- cern displayed by many preg- consequentialist in nature. The
will be born. Infected newborns, cause its survival does not de- nant women about the probable negative effect of subjecting ex-
then, have been harmed by their pend any longer on a pregnant negative reaction a positive test cessively large numbers of preg-
mothers refusal to test for HIV womans altruistic act of carrying result would trigger from part- nant women at very low or low
and to take the necessary med- it to term. ners and their communities is levels of risk to the stress of HIV
ication to reduce the likelihood Our second essential condi- exaggerated, there is also suffi- testing arguably outweighs the
of passing on the infection. tion is that women be provided cient evidence to suggest that beneficial effect of reducing the

1182 | Maternal and Infant Health In Diverse Settings | Peer Reviewed | Schuklenk and Kleinsmidt American Journal of Public Health | July 2007, Vol 97, No. 7
MATERNAL AND INFANT HEALTH IN DIVERSE SETTINGS

number of HIV-infected new- Faculty of Health Sciences, Johannesburg, screening rates. Obstet Gynecol. 2001; 25. Warren M. The moral significance
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Requests for reprints should be sent to 9. AIDS Epidemic Update 2001. Ge- Feminist Perspectives in Medical Ethics.
Udo Schuklenk, PhD, Department of Phi- neva, Switzerland: Joint United Nations Bloomington, Ind: Indiana University
CONCLUSIONS losophy, Queens University, Kingston, Programme on HIV/AIDS; 2001. Press; 1992:198215.
Ontario, Canada (e-mail: udo.schuklenk@ 26. Singer P. Rethinking Life and Death.
gmail.com). 10. Boxall E, Smith N. Antenatal
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About the Authors what is optimal for prenatal screening 23. Gibson S. The problem of abor-
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July 2007, Vol 97, No. 7 | American Journal of Public Health Schuklenk and Kleinsmidt | Peer Reviewed | Maternal and Infant Health In Diverse Settings | 1183

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