Assisted reproductive technologies

Assisted reproductive technologies (ART) are medical interventions that help single people and infertile couples have children by increasing the likelihood of conceiving naturally or by creating embryos ex utero (outside the womb) for implantation into the mother or surrogate. Examples of ART include fertility drug treatment, artificial insemination, in vitro fertilization (IVF), and intracytoplasmic sperm injections (ICSI). ART may also involve prenatal testing and preimplanta-tion genetic diagnosis (PIG) to help parents select embryos that are free of inherited diseases. Gametes (sperm or eggs) or embryos may be frozen and stored for later use in ART; therefore, the disposition of excess gametes or embryos may also impact privacy considerations.
In 1890 Justice Louis D. Brandeis described privacy as “the right to be let alone.” This definition is pertinent to ART since parents often want to be left alone by sperm and egg donors, separated couples might want surplus embryos to be left alone rather than implanted, and sperm and egg donors want to protect their anonymity. The First, Fourth, and Fifth Amendments to the Constitution as well as case law have established that issues related to reproduction, sexuality, and family are private, and that government should limit its intrusions in these areas. However, the New York State Task Force on Life and the Law noted that, while ART as employed by married couples with their own gametes will likely be protected under the federal Constitution, noncoital reproduction including surrogacy and reproductive cloning may not be. Nonetheless, the Privacy Act of 1974 and the Health Information Portability and Accountability Act (HIPAA) of 1996 mandate the confidentiality of private, personally identifiable information.
Various parties may be involved in ART, each with privacy rights and each with expectations that information about identity and health will remain confidential. First, there are the individuals and couples who wish to become parents. Through ART, they may become biological parents or they may parent children who are not genetically related. Second, there are sperm and egg donors, some of whom are known to prospective parents and some of whom are anonymous. Third, there are surrogate mothers. Fourth, there are the children born using ART.
Gamete donation is either directed, in which case the donor knows the recipient, or anonymous, in which case the donor does not. In both cases, the parents seeking donor assistance with ART may stipulate that they or their children be left alone. For example, a co-worker or friend might volunteer to donate sperm with the understanding that his identity should remain private unless the parents later want to reveal it. Similarly, parents may not want the circumstances of conception revealed to other family members or to the child for fear the child will reject the nongenetic parent(s).
Many egg and sperm donors prefer to remain anonymous. They want to help infertile couples but do not yet want to become parents; therefore, their identities are withheld from prospective parents as well as from any biological offspring. When sperm and egg donors choose to remain anonymous, certain private information, such as health status and some genetic information, is disclosed so that prospective parents can make an informed choice about conception, but the donor’s identity is not disclosed. Still, some children want to learn the identity of their biological parent(s). In addition to personal reasons, there may be compelling medical reasons to seek out a donor, such as the need for a biological relative’s bone marrow. Several countries have laws or policies that support a child’s access to donor information or identity, including Switzerland, Austria, the Netherlands, Sweden, and the United Kingdom (Ethics Committee 2004, 528). A bill in Canada’s parliament would allow 18-year-old children to access nonidentifiable health information, and a donor may authorize release of his or her identity to children. In order to protect the privacy of anonymous donors, sperm banks and fertility clinics should discuss these policies with donors prior to donation because identifying an anonymous donor for any reason jeopardizes the donor’s privacy.
Children born using ART also have the right to be left alone by sperm or egg donors. Normally it is up to the parents to decide whether or not to disclose the circumstances of their conception, including the identity of known donors. Also, as preconception and preimplantation genetic testing become available, parents who select for certain genetic characteristics or select against for nonlethal diseases may face later objections from their children, either that the testing itself revealed information that the adult child would reasonably want to remain private (such as carrier status for cystic fibrosis) or that the testing itself is a violation of “fetal privacy.”
When, if ever, can the anonymous donor’s right to privacy be overridden? When the donor, parents, and child all consent, then disclosure by sperm bank or fertility clinic is permitted. Many sperm banks test donors for HIV infection, which means that some sensitive health information that might have been unknown to the donor is revealed in the process of sperm donation and shared with prospective parents. It is ethically justified to test all gamete donors for HIV and other sexually transmitted diseases to protect the offspring and the women who will become pregnant using donated gametes. The identity of an HIV-infected potential donor normally remains confidential, but the safety and health of women and newborns may legitimately override some privacy concerns. Discrimination and stigmatization are likely to ensue if the patient’s identity is revealed, however, so the patient’s name should only be revealed to a limited number of authorized individuals and only for compelling patient safety and public health reasons. HIV testing is recommended, not mandated, for all couples who wish to have biological children. It is not mandated in part because such a mandate could not be enforced except in the context of ART, which could be seen as discrimination against infertile people.
Issues of privacy are compounded when HIV-positive individuals want to become biological parents. Ethically, the risk of transmission must be balanced against the desire to be biological parents. ART may be employed to decrease the risk of transmission. Following education and counseling, HIV-discordant couples may be able to use intracytoplasmic sperm injections, where one sperm without the virus is injected into a harvested egg and IVF is employed. HIV-positive pregnant women and their newborns can also be treated with antiretroviral drugs to decrease transmission.
There are special privacy issues that arise with deceased sperm donors. The main question is who may use extracted and frozen sperm for the purpose of reproduction. Some argue that without the deceased man’s prior consent, postmortem “reproduction” should be prohibited. Others believe that surviving family members, particularly spouses, have proprietary right to use sperm for procreation without previous consent from the deceased donor.
ART raises the question of who is the legally and ethically responsible parent in disputes concerning frozen embryos and donated gametes. One legal scholar writes that “if courts resolve frozen preembryo disputes that involve non-gamete providers based on the constitutional right to privacy, then they should find that the constitutional right to privacy encompasses the interests of both gamete and non-gamete providers. Individuals who create preembryos with the intent to become a parent have made an intimate decision involving procreation, marriage, and family life that falls squarely within the right to privacy” (Dillon 2003, 625). Normally, privacy rights protect citizens from intrusion into family affairs, but intrafamilial disputes may raise questions about custody. In the case of In re Buzzanca, a California appeals court determined that a divorced couple whose child was conceived using anonymous sperm and egg donation and a surrogate mother were the legal parents, reasoning that it was their intention to become parents—not their biological relationship to the child—that was legally important. Kass v. Kass involved a woman who, in the course of divorce proceedings, sought sole custody of five frozen preembryos created through the couple’s IVF treatment. The New York Court of Appeals ruled that the preembryos did not implicate “a woman’s right to privacy or bodily integrity before implantation”; therefore, the contract signed by Mr. and Mrs. Kass prior to cryopreservation was binding. It stipulated that unused preem-bryos should be donated for research. These disputes raise complicated issues about who constitutes family: biological or “intentional” parents or both?
Protecting the privacy of those involved in ART helps to prevent discrimination and stigmatization and upholds constitutional privacy protections; however, an individual’s right to privacy may be overridden, especially in cases where divorced or separated families must discern who has custody when biological and nonbio-logical parents are involved.