257. "HIV Testing of Infants: Privacy and Public Health," Health Affairs, Vol. 17, No. 4, (July/August 1998), pp. 170-183.
HIV TESTING OF INFANTS: PRIVACY AND PUBLIC HEALTH(1)
Congress is expecting to hear, by September 1998, about the results of a study it charged the Institute of Medicine to conduct. The question is whether 49 states and the District of Columbia should be expected to enact laws of the kind currently only in place in New York State. The New York law requires the disclosure of the results of testing for HIV antibodies of infants, to their mothers. This essay examines policy, moral, and legal issues raised by testing and disclosure.(2)
A. A Brief Overview of the Basic Relevant Facts
Since 1987 the CDC, in conjunction with local health authorities in 44 states and the District of Columbia, arranged and paid for "blind" testing of all newborn infants for the presence of HIV-antibodies.(3) The CDC used the resulting data to assess the level of HIV in the populations involved, both the infants and their mothers.
In 1993, New York State Assemblywoman Nettie Mayersohn introduced a bill that would mandate unblind the results of the said tests, which entails informing the mothers of the results. The bill followed New York State Department of Health reports estimating that as many as 60% of the infants that tested positive were leaving hospitals unidentified and untreated.(4) It should be noted that, technically speaking, standard HIV antibody tests, the ELISA and Western Blot, do not determine a newborn's HIV status but indicate the presence of the mother's HIV antibodies in the newborn's blood. The test of infants thus reveals that the mother is infected with HIV, which is widely considered a violation of the mother's privacy and autonomy.
It is also firmly established that a significant number of the infants whose mothers are infected will develop HIV and ultimately AIDS(5), that is will die after a prolonged and vicious illness. It is estimated that approximately 25% of infants born to HIV positive mothers contract HIV from their mothers during pregnancy or birth, while the other 75% of newborns may clear their systems of HIV antibodies and remain HIV-negative, under condition to be discussed shortly.(6)
The fate of both groups is deeply affected by treatments administered by their mothers and by health care personnel. If the 75% of newborns who could clear their systems from their mothers' HIV antibodies and so avoid developing HIV--are breastfed, a given percent of them will acquire HIV from their mothers in this manner. The World Health Organization reports that "up to one-third of HIV-infected infants are infected through breast feeding."(7) These infants' illness and death could be prevented if their mothers were warned not to breastfeed the infants and followed this warning.
Moreover, there is significant evidence that the lives of the 25% of infants born with HIV could be greatly improved and prolonged if mothers and health care personnel were informed of the condition of the infants. They would be able to provide AZT (and possibly newer drugs) to these infants which would reduce their viral loads, providing many corollary benefits.(8) The US Public Health Service recommends that if AZT treatment is not begun before or during delivery, such therapy should be "initiated as soon as possible after birth, preferably within 12-24 hours," and should continue for six weeks.(9) Doctors could also provide prophylaxis against opportunistic infections such as tuberculosis, varicella, meningitis, mycobacterium avium complex, thrush, and particularly pneumocystis carinii pneumonia (PCP). All these treatments presume that mothers and health care personnel are aware that the infants are endangered.
As these and other facts about the beneficial effects of postnatal treatment became known, public support for unblinding tests increased to the point that in June 1996, Nettie Mayersohn's legislation was passed in New York State, despite strong and prolonged objections by the American Civil Liberties Union (ACLU), Gay Men's Health Crisis, and the New York chapter of NOW, among others.(10)
As is often the case, opponents raised both principled and practical objections to this legislation. Principled objections focused on the violations of the rights of the mothers caused by the involuntary disclosure of the test results. The New York ACLU argued that "the testing of newborns is an underhanded way of testing mothers and circumventing their rights to consent to the test."(11) Jeffrey Reynolds, Deputy Director for the Long Island Association for AIDS Care stated that "[newborn testing] amounts to mandatory testing by proxy, and without informed consent or counseling requirements, for all pregnant women in New York..." HIV Law Project Director Terry McGovern has argued that "information is often not kept confidential. . . . I can't tell you how many heartbreaking cases we see where women are thrown out by their families, where children are thrown out of schools."(12) Given these strong objections, other states so far have not followed New York's example.
On the federal level, in 1995 Congressmen Tom Coburn (R-OK) and Gary Ackerman (D-NY) introduced draft legislation that would require all states to follow the New York State pattern or lose the sizable federal funds they receive under the Ryan White Care Act. However, the bill raised strong objections from many of the same groups that objected to it in New York. In response to this initial opposition, the law that was enacted in 1996 reflected a compromise according to which all states are required to meet certain goals for pediatric AIDS prevention within five years.(13) States that do not meet these goals would have to implement unblinded mandatory newborn testing for all mothers who do not receive a prenatal HIV test, or lose their Ryan White Care Act funds.(14) The Institute of Medicine was charged with the task of conducting a study of the states' testing procedures and the results obtained. Thus, through this bill, Congress delayed any ruling on the unblinding of infant tests for a period of close to five years. The next round of debate for these issues will arise when the Institute of Medicine (IOM) report is delivered to the Department of Health and Human Services (HHS) and Congress, anticipated in late in 1998.
B. The Public Policy Debate
An Alternative: Voluntary Testing of Pregnant Women
Parties that are opposed to unblinded testing argue that voluntary testing of pregnant women, as part of prenatal care or a special program, would achieve the same public health goals. The ACLU, the Gay Men's Health Crisis, and the CDC have adopted this position.(15) This stance is supported by the results of a 1994 study that found that if AZT treatment is administered to pregnant women who have HIV during pregnancy, delivery, and to the infant for six weeks after birth, the risk of infection for their infants would be reduced by two thirds, from 25% to 8%.(16) In 1995, the CDC issued guidelines calling for the voluntary testing of all pregnant women for HIV.(17) While as a result there may have been some reduction in these cases(18), the CDC reported in June 1997 that the total number of pediatric AIDS cases grew to 7,902.(19)
Voluntary testing of mothers during prenatal care would dispose of the ethical and legalistic objection that when infants are tested and mothers are informed without their prior consent, their privacy is violated. Moreover, if the proper funds are allocated, health care staff could provide mothers with the needed counseling before the test is administered and help them cope with the results. Furthermore, many health care professionals argue for prenatal as opposed to postnatal testing because prenatal treatment is most effective.(20) There is no denying that if all mothers did all that is required to give birth to healthy babies, at least free from HIV, the whole issue would be mute. Sadly, for various reasons addressed below, this is simply not the case.
The proper analysis, I suggest, would assume that testing pregnant women, counseling them, and encouraging them to take proper medications and care is beneficial. (Note that for this to occur (a) considerable resources must be allocated and (b) physicians, other health care personnel, hospitals, and clinics must be required to include HIV testing and counseling in their prenatal care programs and efforts must be made to find the mothers who do not present themselves for prenatal care). However, this benefit does not obviate the need for infant testing.
The main reasons infant testing is also needed are as follows: (a) Many pregnant women, including those most likely to develop HIV, do not present themselves for prenatal care despite considerable efforts to get them to come. (b) Only a proportion of those pregnant women who do present themselves for prenatal care consent to be tested for HIV. (c) Pregnant women who have tested negative may develop HIV after they have been tested, but before delivery (it should be noted here that research suggests that the greatest risk of infection occurs during birth(21)). Furthermore, if a pregnant woman was infected quite recently before the test, the results may not indicate her infection, thus producing a false negative. This problem is commonly referred to as the "window" problem.
These arguments are supported by the fact that voluntary counseling and testing programs have failed to identify numerous HIV carriers. In New York, a study which gathered data from July 1993 through September 1993 determined that only 53% of infected infants were identified through prenatal testing and counseling.(22)
It is theoretically possible that if more and more resources are invested in locating, counseling and testing pregnant women that a point may be reached that only a very few, one hopes none, would transmit the disease to their children. The best way to establish that this day has arrived is to test the infants. But efforts to reach such a day do not require canceling infant tests or keeping them blind. Indeed, these measures are important until such a goal is finally achieved.
Arguments in favor of unblinded testing in addition to testing the mother are: (a) The costs of testing the infants are minimal because blood is already drawn from the infants and subjected to a battery of tests for diseases including syphilis, phenylketonuria (PKU), branched-chain ketonuria, homocystinuria, galactosemia, hypothyroidism, biotinidase deficiency, and sickle-cell anemia.(23) The additional costs associated with conducting an ELISA test are estimated to be only a few dollars; $2 according to one source. True, a Western Blot test needs to be conducted to confirm positive ELISA results, which would add to the cost, but of course it would only have to be conducted for those infants found to be positive through the ELISA, a minority of those tested.
(b) To serve epidemiological purposes, infants must continue to be tested because these tests provide a highly reliable source of data. In effect, all babies delivered in the health care system can be tested, providing the possibility of taking random samples or stratified if desired. On the other hand, pregnant women self select themselves and hence their tests provide less reliable information.
(c) Most importantly, a very significant number of pregnant women, especially those most at risk, will not be located so that one can ask them to agree to be tested, and even if located, they will not take the needed medications. Testing infants will allow doctors to identify these mothers and provide them and their children with potentially life saving treatments and counseling, particularly regarding the dangers of breast feeding. In short, whether or not one favors testing of pregnant women, this seems not to be a compelling pragmatic reasons not to test the infants. The additional costs are small and the benefits very considerable.
Negative Unanticipated Consequence?
Opponents of unblinded, mandatory testing of infants argue that such a program will scare women away from the health care system, forcing them to avoid prenatal care and hospital deliveries.(24) For instance, the ACLU argues that "mandatory testing of pregnant women and newborns would have detrimental public health consequences, most significantly by deterring women, especially low income women, from seeking prenatal care. . . . Without trust there is rarely compliance, especially when a woman is confronting not only the possibility that her child has an incurable disease, but the certainty that she does as well."(25) Gay Men's Health Crisis concurs: "mandatory or coercive proposals, which offer no guarantee of services and which ignore the need to involve the mother in the care of her child, neither reduce the possibility of HIV transmission nor increase the likelihood that infants or their mothers will receive the care they need."(26)
These claims have been countered by the Association to Benefit Children (ABC), a foster-care provider in New York City. After years of work, it is their observation that "an HIV positive result typically meant that a mother took strengthened interest in managing her health and that of her child."(27) Observations by both sides on this point are anecdotal; until systematic data is generated it seems that this particular argument cannot be used any more to oppose unblinding than to support it.
While the main public policy debate so far has focused on the options discussed another one comes to mind and in effect has been tried: seeking the mothers' consent to be informed about the test's results. At first blush it would seem that this approach has the best of both worlds: practically all the mothers could be reached at delivery (which is not the case in prenatal counseling) and consensual disclosure does not violate privacy.
The costs of this approach are substantially higher than unblinding the test, because all mothers would need to be counseled (before they can be asked to consent) rather than only those whose test results are positive (if no a priori consent is required).
Ethically consent under the given conditions is far from compelling, indeed is unlikely to be considered ethical by a typical bio-ethical committee. First of all, it has been noted that many of the treating professionals are of a much higher socio-economic status than the mothers and constitute strong authority figures. Marcia Angell, the executive editor of the prestigious New England Journal of Medicine, notes that "many people can be coerced into submitting to harmful experiments, especially if they are poor and uneducated."(28) While this statement was made in reference to overseas AZT experiments involving pregnant women, the same principle applies here. Even many white middle class mothers find it difficult to object to suggestions by their physicians. Most important, the consent has to be sought as the pregnant women are in labor, a point at which it might be rather unethical to ask them to consider agreeing to a test that might establish that they have HIV and that they infected their about to be born child. Counseling under these conditions would be at least rather difficult.
While requests for consent to disclose might be delayed until after delivery, they must be made very shortly thereafter, to avoid breastfeeding and start medication if necessary, and because mothers' stay in the hospital is rather short these days. (One needs to ask all mothers for consent, because asking only those who infants' test are positive would soon become known and would be tantamount to disclosure without consent).
Last but not least the treatment of the mothers who will refuse consent must be faced. The fact that their number might be small, which is far from well established, does not solve the ethical questions discussed below. The life and well being of each infant, and the privacy and autonomy of each mother, must be treated in their own right.
When all is said and done, consented disclosure (if issues of costs are not allowed to prevail) has some advantages over non-consensual disclosure but the difference is much smaller than it at first may seem, given that consent under these conditions is rather dubious. (It might be said that dubious consent is better than none, but note that consent will have to be gained from all mothers while disclosure needs to be made only to those who tested positive and were not reached during prenatal testing.) Finally the ethical issue of facing the mothers who would rather not be informed cannot be avoided in either case.
III. Ethical-Legal Issues
The unblinding of the test is strongly opposed on the grounds that it violates the mothers' legal right of privacy. People other than herself find out about her condition without her consent, especially medical personnel.(29) For HIV, there are specific laws requiring individuals be asked to grant written informed consent before they are submitted to an HIV test,(30) and providing for the strict confidentiality of HIV test results.(31) A law that requires mandatory testing of newborns would override all such considerations.
Violation of rights other than that of privacy are also said to follow, including discrimination, stigma, the loss of jobs, health and life insurance and housing, and even domestic abuse or the loss of one's family, all of which follow from the violation of privacy. The ACLU argues that "these woman are susceptible to the same kinds of discrimination faced by others if it becomes known that they are infected with HIV".(32) AIDS Project Los Angeles and the San Francisco AIDS Foundation point out that "there have been numerous court cases involving HIV-positive individuals who have lost their health insurance, their job, or both. The reality is that we cannot legislate away the stigmatization that people with HIV experience."(33) In addition, Karen Rothenberg and Stephen Paskey, writing for the American Journal of Public Health, opined "we believe that HIV-infected women are particularly vulnerable to the risk of domestic violence."(34) If the test remains blind, such consequences cannot follow from the test because nobody can identify the subjects who tested positive. They are merely nameless numbers in statistical tables. To deal with these challenges, one must consider the place of the rights at issue in our total sacle [[what word is "sacle"?]] of values.
The ranking of values
In ranking the rights and values involved one may draw on abstract ethical theories, such as weighing autonomy against beneficence. Here instead I draw mainly on the core values of the democratic society in which these issues must be worked out.(35) As I see it, these values provide clear guidance in the case at hand. Our core values and the legal code that expresses them generally ranks the loss of life over that of limb, and both higher than the loss of property. Other concerns are less clearly ranked but usually do not take precedence over life, or knowingly allowing a major illness to fester when it can be treated. The Tuskegee Experiment is a case in point; the fact that those who participated were not informed about their conditions and provided with the available treatment is considered one of the great ethical failures of American public health policy. This analogy has been strongly and very well defended by Marcia Angell.(36)
In terms of the law, this type of "ranking" values is evident in court cases involving the well being of children. While parents have the right to give informed consent for treatment on behalf of their children,(37) the "parents' right to determine the course of treatment for children is limited."(38) Renna states that "a parent may not deprive a child of life-saving treatment," and adds that "courts have consistently allowed the state to intervene when a child's health is in danger."(39)
If one views the issue before us from this standpoint, one set of facts stands out: if infant tests remain blind this will directly contribute to the death of a significant proportion of infants born to mothers who have HIV. These infants will not receive antiretroviral treatments early, and their mothers might breastfeed them out of ignorance. The data cited earlier underscore the importance of early AZT treatment as a means of saving lives and ameliorating severe suffering for HIV positive infants. [fn][What footnote do you want here?]
Aside from failing to avert infant deaths when they could be prevented (certainly a most grievous concern), infants that are not treated are also condemned to severe illness. AIDS, of course, differs from sudden crib deaths and many other illnesses in that AIDS entails a very debilitating and long period of suffering for both the infant and its family. A newborn is subject to many devastating opportunistic infections which painfully kill the infant over the course of many months or years. Further, infants with HIV also suffer from "recurrent severe bacterial infections, cancers, specific encephalopathy, and wasting syndrome."(40) Even if keeping the information from the mothers would not cause the death of a significant number of infants, the severity of the illness they will be exposed to if their mothers are kept uninformed is itself a very major concern. [The phrasing here might need to be reworked. "Only" those infants who would contract virus through breastfeeding can be saved from infection through newborn testing. We must recognize that newborn testing cannot stop transmission of virus save in those cases. Further, newborn testing cannot prevent infants from being exposed to this severe illness, again save in those cases of breastfeeding. But in can facilitate early intervention, which can improve quality of life, delay disease progression, etc.]
Opponents are correct in paying attention to the psychological and sociological effects of having one's privacy violated. But one must also pay mind to the suffering inflicted on the infants' mothers if they are not informed about positive test results. One far from atypical account runs as follows. A baby girl was born to a mother at Mt. Sinai Hospital in New York City on the morning of January 31, 1991. The doctor assured the mother that her baby was normal and healthy. Nine months later, the mother rushed her child to the same hospital. Her child was having seizures and had stopped breathing. To the mother's astonishment, she learned that her child was HIV positive and was suffering from meningitis, a pneumococcal infection brought on by an HIV-weakened immune system, which eventually left her child blind, deaf, brain-damaged and paralyzed. She was incredulous to discover two anguishing facts: first, that this debilitating infection could have been prevented if her child had been diagnosed and treated soon after birth, and secondly, that her child was actually tested for HIV as a newborn in the hospital, but the results were withheld from her "to protect her own privacy."(41)
Similar scenarios have been repeated many times across the country for more than ten years.(42) Mothers who take their infants home without being informed of their HIV status may have a child that gradually develops a variety of undiagnosed illnesses that may seem like a severe flu, pneumonia, diarrhea and so on. After continued treatment of these children for these various illnesses, their mothers will soon discover the true nature of their child's problem, and its prospects. The guilt these mothers may feel about having inadvertently contributed to the disease and death of their child must be a very serious concern, as well as their anger at the medical community for denying them information that could have potentially prevented death and suffering. One further wonders if such mothers do not have a legal, or at least an ethical, claim against those who did not inform them of their child's severe, though treatable, condition.
Aside from sparing the mother some measure of mental suffering, there are other benefits for mothers that may result from unblinded tests. As explained earlier, a positive newborn test result indicates the mother's HIV status. If the tests are unblinded, the mother may obtain medical treatment for herself. Given the favorable results obtained through "drug cocktails" including protease inhibitors, the medical benefit of knowing one's HIV status is, provided that care is available, undisputed. Further, the mother's treatment indirectly benefits the infant, who depends on her for care.(43) Additionally, "identification of a mother's seropositive status helps her make informed decisions about her future family plans."(44) She can make informed decisions as to future pregnancies and appropriate care if she does plan to have additional children. She may also make early arrangements for the care of her children who may survive her. Finally, the knowledge of her HIV status gives the mother the opportunity to take precautions against further transmission of HIV to sexual partners.
Given the apparent benefits of unblinded testing, one may ask whether preceding arguments do not call for mandatory testing for everybody, or least for all who run a high risk of infection. Without passing judgment on this question, it should be noted that there is a major ethical difference between not disclosing what one knows and is detrimental to the person about to be effected (the equivalent of not pulling them away when one sees a truck rushing at them), and involuntarily extracting the information from one and all to determine whether they may be in harms way (following them wherever a truck may be, because they may need saving). Not disclosing information when it has already been collected is an active act of omission; not collecting the information about one and all is a passive act of omission, a much less severe failing. [[The preceding is problematic (see memo)]]
Violation of Privacy
It should be noted that privacy is not an absolute value, and does not trump all other rights or concerns of the common good. As Alan Westin observed "an individual's desire for privacy can never be absolute, 'since participation in society is an equally powerful desire.'" (45) Thus, even civil libertarians recognize that the police have a right to search one's home if there is specific evidence that a murder weapon is hidden in it. It is hence not sufficient to argue that unblinding violates privacy and rest one's case. One must weigh the harm done by violations of and losses to the mother, infant, and community when there is no disclosure compared to those that are done by violating privacy.
In judging this question one must take into account that, even if newborn test results remain blind, privacy will not be preserved for long. As Leonardo Renna observes, "the reality is that she [an HIV positive mother] is likely to learn of her newborn's HIV status in short order. . . . Without treatment, the probability that an HIV-infected infant will develop an opportunistic infection within the first year is great. . . . She not only will be forced to deal with the sudden revelation of her and her infant's status, but will be forced to deal with her infant's serious HIV-related illness (and possibly her own), as well as the realization that this illness might have been preventable."(46) In short, the HIV status of both the baby and the mother will be revealed whether the newborn is tested or not, and the issue of discrimination and other ill effects of disclosures will not long be denied. (The mother herself is likely to develop more visible symptoms over time.)
Violation of Autonomy
The argument has been made that, in addition to privacy concerns, the autonomy of mothers is violated when they are informed about the results of a test that they did not seek, and when provided with information they do not wish to have. Violation of autonomy can be seen even when mothers are merely asked to consider whether or not they wish to know, because the mothers may be perturbed by having to make such considerations.
One could go here into a valuable discussion of what autonomy encompasses, the difference between a right to know versus a right not to know and related issues. The main issue that must be faced here, though, is not whether or not autonomy is being infringed upon and to what extent, but whether there is another consideration that justifies whatever diminution of autonomy is entailed. The moral equation seem to me similar to that we faced when the standing of privacy was examined: given that there is a high probability of causing a death if autonomy is fully honored, and given that the intrusion is limited to sharing information (best made in the context of counseling), it seems that life should take precedence. Indeed, a case could be made that health care personnel have a moral obligation to proceed.
If this is a valid argument, the same holds only more strongly for a mother, which--if even one would completely respect her autonomy--if not informed she is likely to cause irreparable harm to a defenseless infant. Even strong libertarians concede that one's various rights do not entail a right to cause serious damage, let alone endanger the life, of others. And our laws and ethics fully support taking the much more drastic step of removing children from their parents when they abuse or even just neglect them. Informing mothers about action that must be undertaken, when life might well be endangered, seems in comparison a rather temperate step.
Discrimination is certainly a matter of grave concern. In effect, many of the mothers involved are already subject to discrimination. Two thirds of mothers whose newborns tested positive are poor and members of minorities.(47) Further, the greatest percentage of the children's mothers contracted HIV through injection drug use (41%).(48) However, it should be noted that laws against discrimination based upon a person's HIV status have already been toughened in several states.(49) For example, in New York, a person disclosing confidential HIV information may be fined heavily or prosecuted.(50) Additional penalties on unauthorized disclosure might well be called for and are being contemplated for medical records in general.
One must, though, not overlook the fact that unblinding entails informing the mother and not public health authorities, nor does it involve inclusion in public records (as when a crime is alleged to have taken place, long before conviction), informing employers or the neighbors (as in Megan's Laws). If the mother and those health care professionals who attend to her and the infant keep the information confidential, they are required by law and professional code, and elementary ethics, there are no obvious ways she will suffer discrimination.
When all is said and done, it seems that unblinding the HIV tests of infants and a concurrent disclosure of the results to their mothers and those entrusted with their health care is strongly justified. Indeed, it should be noted that in other medical research projects, when it has been discovered early in the process that certain treatments are highly beneficial, the studies have been stopped and the results shared with one and all. The same urgency applies here.
1. 1.This article benefitted greatly from the research assistance of Tim Bloser and from a report prepared for the George Washington University Institute for Communitarian Policy Studies by Lorien Abroms. It is part of a larger study of privacy and the common good carried out by the Institute. I am also greatly indebted to Dr. Michael Stoto for his critical comments.
2. 2. "Prophylaxis Against Pneumocystis Carinii Pneumonia Among Children With Perinatally Acquired Immunodeficiency Virus Infection in the United States," The New England Journal of Medicine, (23 March 1995): 786. Centers for Disease Control, "Guidelines for Prophylaxis Against Pneumocystis Carinii Pneumonia for Children Infected with Human Immunodeficiency Virus," Morbidity and Mortality Weekly Report, (Atlanta: 15 March 1991), 40. Leonardo Renna, "New York State's Proposal to Unblind HIV Testing for Newborns: A Necessary Step in Addressing a Critical Problem," 60 Brooklyn Law Review, 407 (1994): 415. Lawrence K. Altman, "AIDS is Now the Leading Killer of Americans from 24 to 44," New York Times, 31 January 1995. Colin Crawford, "An Argument for Universal Pediatric HIV Testing, Counseling and Treatment," 3 Cardoza Women's Law Journal, 31 (1996): 39-41.
3. 3. Report of the Subcommittee on Newborn Screening of the New York State AIDS Advisory Council 5-6, 10 February 1994,
4. 4. New York State Department of Health statistics.
5. 5. Stephen Arpadi and William B. Caspe, "HIV Testing," Pediatrics (July 1991): S8. Margaret H. Burroughs and Paul J. Edelson, "Medical Care of the HIV-Infected Child," Pediatric Clinics of North America, (February 1991): 47.
6. 6. Estimates as to the number of infants infected perinatally range from as low as 20% to as high as 30%. Wilfert et al., "Evaluation and Medical Treatment of the HIV-Exposed Infant," Pediatrics, (June 1997): 909-917.
7. 7. It should be noted that these figures reflect world-wide vertical HIV transmission rates. World Health Organization, "HIV and Infant Feeding: An Interim Statement," World Health, (13 March 1997): 30.
8. 8 Renna, "New York State's Proposal to Unblind HIV Testing for Newborns: A Necessary Step in Addressing a Critical Problem," 418.
9. 9 Department of Health and Human Services, U.S. Public Health Service Recommendations for Use of Antiretroviral Drugs During Pregnancy for Maternal Health and Reduction of Perinatal Transmission of Human Immunodeficiency Virus Type 1 in the United States; Request for comment, (Washington: 1997): 18.
10. 10. Jim Dwyer, "A Silence that Kills Children," Newsday, 15 April 1994, 2. Nat Hentoff, "The New Tuskegee Experiment: Infected Has a Right to Be Told--No Matter What the ACLU Says," The Village Voice, 1 October 1996, 8.
11. 11. American Civil Liberties Union, "New York to Require All Mother[s] Be Tested for AIDS," ACLU News Wire, 6 June 1996.
12. 12. CNN, Transcript of "NEWS," 1 May 1996, 8:07pm (transcript number 1504-3).
13. 13 By the year 2000, states must reduce their number of pediatric AIDS cases by 50% or, through counseling, test 95% of pregnant women for HIV. (Office of Rep. Tom Coburn, private communication.)
14. 14. Office of Rep. Tom Coburn, private correspondence. "U.S. House bill passed requiring HIV test for infants," AIDS Weekly Plus, 13 May 1996, 17.
15. 15. See Chapman, Michael, "CDC Still Plays Politics While Babies Die," Human Events, 10 January 1997. CDC Draft Guidelines for HIV Counseling and Voluntary Testing for Pregnant Women, 21 February 1995. "Disclosure Battle Halts HIV-Testing of15 Newborns," American Civil Liberties Union, ACLU Position Statement on Prenatal and Newborn HIV Testing, 1996. Gay Men's Health Crisis, New York State Legislative Agenda, 1996, 7.
16. 16. Wilfert et al., "The Evaluation and Medical Treatment of the HIV-Exposed Infant." It should be noted here that the study only reflects treatment for women meeting very specific conditions with regards to their HIV infection.
17. 17. Centers for Disease Control and Prevention, "U.S. Public Health Service recommendations for human immunodeficiency virus counseling and voluntary testing for pregnant women," Morbidity and Mortality Weekly Report, (Atlanta: 28 July 1995).
18. 18. "AIDS Drug Revolution Excludes the Young," The New York Times, 8 September 1997, A14.
19. 19 For sources see note 6 above.
20. 20 "HIV Testing Project Draws Complaints," The New York Times, Monday, 16 June 1997.
21. 21. "30% to 50% of HIV-infected infants have detectable levels of virus in their blood within 48 hours of birth. Of the remainder, more than 90% have detectable virus within two weeks of birth. These facts suggest that most infected infants acquire infection around the time of delivery." Catherine Wilfert, "Preventing Vertical Transmission: A Wise Investment," HIV Newsline, (August 1997): 85.
22. 22. Renna, "New York State's Proposal to Unblind HIV Testing for Newborns: A Necessary Step in Addressing a Critical Problem," 430-1.
23. 23. Nat Hentoff. "Sweet Land of Liberty--Privacy that Kills," Washington Post, 8 April 1995, A19. Colin Crawford, "An Argument for Universal Pediatric HIV Testing, Counseling and Treatment," pp. 33-4.
24. 24.American Civil Liberties Union, ACLU Position Statement on Prenatal and Newborn HIV Testing. Nina Lowenstein, "Mandatory Screening of Newborns for HIV: An Ida Whose Time Has Not Yet Come," 3 Cordoza Women's Law Journal, 43, 46-7 (1996).
25. 25. American Civil Liberties Union, ACLU Position Statement on Prenatal and Newborn HIV Testing.
26. 26. Gay Men's Health Crisis, New York State Legislative Agenda, 7.
27. 27. Colin Crawford, "An Argument for Universal Pediatric HIV Testing, Counseling, and Treatment," 35; Gretchen Buckenhold, Association to Benefit Children, private conversation.
28. 28 Marcia Angell, "Tuskegee Revisited," The Wall Street Journal, 28 October 1997.
29. 29. Lowenstein, "Mandatory Screening of Newborns for HIV: An Idea Whose Time Has Not Yet Come," 43-4. American Civil Liberties Union, ACLU Position Statement on Prenatal and Newborn HIV Testing.
30. 30. Lowenstein, "Mandatory Screening of Newborns for HIV: An Idea Whose Time Has Not Yet Come," 44.
31. 31. In New York, disclosure is permitted to the attending health care providers, third party reimburses or insurance companies authorized by the protected individual, and certain employees of correctional facilities. Renna, "New York State's Proposal to Unblind HIV Testing for Newborns: A Necessary Step in Addressing a Critical Problem," 424.
32. 32. American Civil Liberties Union, ACLU Position Statement on Prenatal and Newborn HIV Testing.
33. 33. Sofia Kwong and Randy Allgaier, "Letters to the Editor" in The Recorder, 9 August 1996, 5.
34. 34. Karen J. Rothenberg and Stephen J. Paskey, "The Risk of Domestic Violence and Women with HIV Infection: Implications of Partner Notification, Public Policy, and the Law," American Journal of Public Health, (November 1995): 1570.
35. 35. I am quite aware that these themselves require further examination. See Amitai Etzioni, The New Golden Rule (New York: BasicBooks, 1996), Chapter 8.
36. 36 Marcia Angell, "The Ethics of Clinical Research in the Third World," New England Journal of Medicine, (18 September 1997). Marcia Angell, "Tuskegee Revisited."
37. 37. Suzanne Sangree, "Control of Childbearing by HIV-positive Women: Some Responses to Emerging Legal Policies," 309 Buffalo Law Review, 374 (1993).
38. 38. Renna, "New York State's Proposal to Unblind HIV Testing for Newborns: A Necessary Step in Addressing a Critical Problem," 426.
39. 39. Ibid, 426.
40. 40. Marie-Jeanne Mayaux, et al., "Neonatal Characteristics in Rapidly Progressive Perinatally Acquired HIV-1 Disease," JAMA, (28 February 1996): 606-610.
41. 41. Story adapted from Jim Dwyer, "Breakthroughs Damn HIV Rule," Newsday, 17 June 1994, A02.
42. 42. Jim Dwyer, "They Want to Know: Law Kept Women in Dark that their Babies had HIV," Newsday, 13 June 1994, A02. Jim Dwyer, "A Silence that Kills Children," Newsday, 15 April 15 1994, 2. Jim Dwyer, "AIDS Rule Not Kid Proof," Daily News 12 October 1995, 4.
43. 43. Renna, "New York State's Proposal to Unblind HIV Testing for Newborns: A Necessary Step in Addressing a Critical Problem," 434.
44. 44. Ibid, 435.
45. 45. Quoted by Randall P. Bezanson, "The Right to Privacy Revisited: Privacy, News, and Social Change, 1890-1990," California Law Review, vol. 80, no. 5, October, 1992, p. 1147.
46. 46 Renna, "New York State's Proposal to Unblind HIV Testing for Newborns: A Necessary Step in Addressing a Critical Problem," 441.
47. 47. "AIDS Among Children--United States, 1996," American Health Association Journal of School Health (May 1997): 175.
48. 48 "AIDS Among Children--United States, 1996," 175.
49. 49 Renna, "New York State's Proposal to Unblind HIV Testing for Newborns: A Necessary Step in Addressing a Critical Problem," 441.
50. 50. Ibid, 424.