"I swear by Apollo the physician, and Aesculapius, and Health, and All-heal, and all the gods and goddesses, that according to my ability and judgment, I will keep this Oath and this stipulation...I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous."
When I was offered the opportunity to write this piece assuming a position counter to using assisted reproductive technology (ART) to help couples conceive when the male partner is HIV-positive, my first concern was whether I could defend a position denying a patient any form of treatment. This discussion is not in defense of denial of treatment; rather, it is about some serious concerns that I have regarding reproductive freedom in an age of acquired immunodeficiency syndrome (AIDS).
AIDS has reached epidemic proportions, and at the same time, ART and the ability to procreate by artificial means is developing at an unprecedented rate. During the early years of reproductive medicine, the major focus of clinicians was directed to the well-being of the infertile couple and the development of successful treatments was the first priority. Recently, important concerns have been raised regarding the long-term effects on children born as a result of such treatments.
Screening and prevention are two major weapons in the fight against AIDS. Although therapeutic regimens for AIDS have improved, treatment is associated with significant morbidity, expense, and disruption of lifestyle. To date, no cure for the disease has been found. Since it is well known that sex partners of individuals infected with HIV are at high risk for the disease, a preventive approach to curb the spread of disease is prudent. Prevention of transmission of HIV virus to the female partner and her unborn child is critical. Do we not have an obligation to consider the welfare of the unborn child?
Although the life expectancy of individuals with HIV cannot be accurately predicted, the manifestation of clinically apparent AIDS may be viewed as a floating point between seroconversion and death.2 The time required to develop AIDS following seroconversion and the time to death after seroconversion have been extended due to the increased use of potent antiretroviral therapy, protease inhibitors, and combination therapy.3 While it is not possible to predict how long a patient infected with HIV will live, several studies illustrate the natural history of untreated HIV.
In a prospective cohort study done in rural Uganda, the median survival time from enrollment to death for the prevalent cases was 4.5 years. The 5-year cumulative survival for prevalents was 46%.4 The cumulative probability of death in a cohort of Filipino sex workers was found to be 52.1% within 5 years following seroconversion and 52.7% within 1.5 years after a depressed CD4+ T-cell count or the onset of opportunistic infection.5 Pezzotti and colleagues reported on a prospective cohort study of HIV-positive individuals whose date of seroconversion was known with a good degree of precision.6 The median time from seroconversion to clinically apparent AIDS for 35-year-old people was approximately 8.2 years.
In another study reported by Lemp and colleagues, the median incubation period for AIDS among homosexual and bisexual men infected with the AIDS virus was 11 years.7 According to the registry of seroconverters maintained in the United Kingdom, the risk of death was 60.2%, and from death from any cause was 48.1% within 10 years of seroconversion. Older age at seroconversion was found to be associated with faster progression to AIDS and a shorter survival time.8 Individuals infected with HIV will, in general, have a shortened life span. Assuming an illness-free interval of 10 years and another 5 to 10 years of life after seroconversion, the father is unlikely to see his child finish high school. We must seriously consider the psychological impact on the child who grows up in a situation where one parent is severely ill and dying from AIDS.
As reproductive health-care professionals, we will encounter increasing requests for fertility services from HIV-infected individuals as the prevalence of HIV infection continues to rise. Can the practitioner legally deny treatment to individuals who are found to be HIV-positive? The United States Supreme Court provided legal precedent regarding this question when it ruled in Bragdon v Abbot, its first case involving HIV, that a woman with asymptomatic HIV infection is protected from discrimination in accessing dental services.9 The court endorsed an interpretation of the Americans with Disabilities Act that is broadly protective of individuals with disabilities, including individuals infected with HIV. The court also ruled in Bragdon v Abbot that health-care professionals may legally refuse to treat a patient because of concern that the patient poses a threat to safety only if there is an objective, scientific basis for concluding that the threat to safety is significant. A state-by-state survey of such laws demonstrates that, consistent with Bragdon v Abbot, individuals with asymptomatic HIV have widespread protection on the state level as well.
The "conscience clause" in the British Human Fertilization and Embryo Act allows conscientious objection by the medical staff to treat individuals carrying the HIV virus. This clause provides doctors in the United States with one of the few situations in medical practice in which they are free to choose not to participate in activities to which they are opposed.10 No case law could be found on the question of conscientious objection with regards to provision of assisted conception services to individuals with HIV in the US. Practitioners are generally required to suggest alternative means for the patient to obtain treatment that they have declined to provide or to refer the patient to another practitioner.
Assisted reproduction services have not been subject to formal regulation in the US. In sharp contrast to countries where assisted conception services are not subject to formal legislation and regulation, the position in the UK is clearly set out in the Human Fertilization and Embryology Act (HFEA).11 The HFEA code of practice required licensed treatment centers to take into account the welfare of any child born as a result of the treatment, including the need of that child for a father. The children's act allows children to be removed from their parents if they are at risk of "significant harm." The intent is to ensure that treatment services are withheld where there is thought to be risk of harm to the child. Historically, the "welfare of the child" concept is deeply rooted in family law.12 In the US, the notion of the welfare of the child underpins much of modern family law. When a court deals with a family matter, no other consideration can overrule that of the welfare of the child.
Issues regarding reproductive choice and responsible parenthood are confounded by debilitating and eventually fatal illness in patients infected with HIV. Problems of custody and foster care must be taken into consideration. The responsibility of the physician to the patient must be considered, and must be given its proper place within the broader context of responsibility to the public. Each case must be considered on its own merit. When one examines the potential plight of the child born to parents with HIV, it does not seem extreme to consider it a transgression of moral law that may be considered "wrongful life." Clearly, the child's position is a most vulnerable one. Every child is born into an existential relationship with the parents, and as a descendant, had no voice in its parents' decision to procreate. The child's welfare is directly dependent on the quality of the parental care that he or she receives.
A strong association exists between parents' psychological well-being and the psychological well-being of their children. Children whose parents have psychological problems are more at risk for psychological problems themselves. Clearly, a child growing up in a home where one parent is dying of AIDS is in a very desperate situation. The child will be exposed to the extreme conflict, distress, and family disruption that is commonly associated with the death of a parent, separation or divorce. The child will most likely grow up in a single-parent home or in a foster home. Children in single families generally do less well than those in two-parent households in terms of both psychological adjustment and academic achievement. Children who grow up in single-parent homes are also less likely to go on to higher education and are more likely to leave home and become parents themselves at an early age.13
What options are available to the physician when confronted with infertile individuals infected with the HIV virus? Infected individuals must be carefully counseled regarding their own health and longevity, and most importantly, they must be counseled regarding risks to the unborn child. Counselors have stressed the importance of nondirective counseling with regards to reproductive choice.14 The risks of HIV transmission during the perinatal period do not currently constitute grounds for morally criticizing the reproductive choices of infected men. When placed in the context of moral responsibility, judgments of reproductive irresponsibility may be justified. No person should be subjected to any form of coercion when making the decision to initiate pregnancy. However, a so-called "moral education" model of nondirective, noncoercive counseling seems appropriate for persons carrying HIV.
In certain cases, "conscientious objection" to treating individuals with HIV for infertility seems appropriate. ART should not be used to help HIV-infected males father a child when there is risk of "significant harm" to the child. When such objective evidence cannot be obtained, nondirective counseling and the use of the principles of so-called "moral education" should be used. All individuals infected with the AIDS virus, regardless of gender, must be thoroughly counseled about the real risk to themselves, to their partners, and to the unborn child with the hope that they make rational decisions about childbearing.
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4 Morgan D, Malamba SS, Maude GH, et al. An HIV-1 natural history cohort and survival times in rural Uganda. AIDS. 1997;11:633-640.
5. Manaloto CR, Perrault JG, Caringal LT, et al. Natural history of HIV infection in Filipino female commercial sex workers. J Acquir Immune Defic Syndr. 1994;7:1157-1168.
6. Pezzotti P, Galai N, Vlahov D, et al. Direct comparison of time to AIDS and infectious disease death between HIV seroconverter injection drug users in Italy and the United States: Results from the ALIVE and ISS studies. AIDS Link to Intravenous Experiences. Italian Seroconversion Study. J Acquir Immune Defic Syndr Hum Retrovirol. 1999;29:275-282.
7. Lemp GF, Payne SF, Utherford GW, et al. Projections on AIDS morbidity and mortality in San Francisco. JAMA. 1990;263:1497-1501.
8. The AIDS incubation period in the UK estimated from a national register of HIV seroconverters. UK Register of HIV Seroconverters Steering Committee. AIDS. 1998;12:659-667.
9. Gostin LO, Feldblum C, Webber DW. Disability discrimination in America: HIV/AIDS and other health conditions. JAMA. 1999;281:745-752.
10. Human Fertilization and Embryology Authority (1995) Code of Practice. HFEA, London, UK.
11. Blyth E. The United Kingdom's Human Fertilisation and Embryology Act 1990 and welfare of the child: a critique. Int J Children's Rights. 1995;3:417-438.
12. Shear LE. From competition to complementarity. Legal issues and their clinical implications. Child Adolesc Psychiatr Clin N Am. 1998;7:311-344, vi-vii.
13. Amato PR, Keith B. Parental divorce and the well-being of children: a meta-analysis. Psychol Bull. 1991;110:26-46.
14. Arras JD. HIV and childbearing. 2. AIDS and reproductive decisions: having children in fear and trembling. Milbank Q. 1990;68:353-382.
Ervin Jones. Should ART be used to help an HIV-infected man father a child? No..