A gestational surrogate “fleeing” from Alaska to Texas is getting a lot of press. The issues around this story may not be that new, but rather reflect the precarious situation between legal surrogate contracts and the primary rights of the surrogate as a patient. This case raises several ethical challenges in commercial surrogacy, as well as emerging clinical ethics issues in fetal health centers. Frequently, the surrogate pregnancy is the result of a contracting couple’s fertilized egg being implanted into the surrogate. The fetus is, therefore, not genetically related to the surrogate. Even if one ignores the value assigned to the gestational bond, it is critical to recognize that the surrogate is the patient while pregnant. Consent to any procedure, exam, or test, including abortion, requires the consent of the surrogate regardless of contractual language. Commercial surrogacy is risky for both parents and surrogates because, throughout the gestational period, surrogates and parents may disagree on some aspects of prenatal care, may change their minds, and may encounter a myriad of unanticipated issues, even with the strongest preimplantation contract. This case highlights many of the clinical, legal, and bioethical challenges involved with surrogacy. We, however, want to highlight specifically that the surrogate is the patient and thus, regardless of a contract with the biological parents, consent is required for any procedure or surveillance of the fetus during a surrogate pregnancy.
Ethical considerations regarding prenatal diagnosis of HLHS
McKenna West, the surrogate in this case, traveled to Texas from Alaska after the 20-week prenatal ultrasound in order to avoid the abortion the parents requested and to seek treatment for the fetus once born. The fetus had been diagnosed with hypoplastic left heart syndrome (HLHS), a serious congenital condition where the heart only has one functional ventricle. There is no cure, but a series of major cardiac surgeries can prolong life. These interventions can extend life years, but surviving patients have limitations in quality of life, and often still require a heart transplant or die. Survival statistics vary by study, but around 70% who undergo interventions or heart transplants are alive at 5 years of age.
While some children survive, treatment comes with significant burdens. Thus, there are value differences around the proportion of benefit to burden related to the arduous interventions after birth, each carrying risks of premature death. In general, it is up to parental discretion whether to terminate the pregnancy, continue the pregnancy with perinatal hospice, or seek post-natal interventions.
Abortion, surrogate contracts, and ethics
Terminations anywhere are only ethically permissible where the patient, i.e., the pregnant person, requests and consents to the procedure. No clinician in any state should perform a termination against a patient’s wishes, even where it might be court ordered. However, surrogacy laws and varying legal views on what constitutes parentage may differ between states and jurisdictions.
Contracts in commercial surrogacy are limited by the primary moral status of the surrogate as patient. While a fetus, parents have the ethical authority to decide what they feel is best. Clinicians, ethically, owe obligations to the patient. As such, clinicians involve the biological parents of the fetus only as much as the surrogate desires. This is because, as a patient, the surrogate has a right to privacy. The contract may include agreements to medical surveillance, testing, and nutrition supplements, but these still require the clinician to obtain the consent of the surrogate, whether the biological parents agree or not.
Once the child is born, they have their own moral status, and thus, in terms of treatment for the child, parents guide decisions. The question then is, who are the rightful parents with authority to represent the child’s interests and make value-based decisions towards care?
Ethical considerations around parental authority
The issue of parentage in surrogacy is complex. It involves considerations of gestational time, genetics, and contractual agreements. In traditional pregnancies, the person who gestates the fetus and gives birth to the child is a genetic and legal parent. Technology, however, has changed this. Pregnancies can now be carried without a genetic connection, which puts parentage into the legal arena. Adoption of embryos, IVF, and surrogacy require legal processes to determine parentage. In this case, there are biological parents.
In HLHS, equally loving parents may make entirely different decisions. Some loving parents may feel that any chance at any type of life justifies the most extraordinary risks and interventions, e.g., a Norwood procedure. Other loving parents may feel that the extraordinary treatments required to extend life in HLHS, and the risks involved, are out of proportion to any of the potential benefits. This is the question that requires answering for this child. Whose values should speak for this child who cannot speak for itself- the parent who carried it through gestation or the biological parents? Ethically, the genetic parents of the child have a weightier claim, especially given their contractual agreement with the surrogate. This is because parents are determined, all things considered, to be the best parties to represent the values of their children. This should not be any different here, even with due consideration given to the emotional bond of gestation.
The Texas Case
While this case is grabbing headlines, the ethical issues around surrogacy in fetal health centers and clinical spaces are not new, though they generally don’t lead to conflicts. There is a lot of room for misinterpretation of this case. The surrogate is the patient and consent is required for any procedure or surveillance of the fetus during a surrogate pregnancy. This is just as true in Alaska as it is in Texas. Surrogacy contracts must not contain language that encroaches upon or imposes penalties for the surrogate’s exercise of their rights as a patient to bodily autonomy. Healthcare practitioners alike should never show deference to a surrogacy contract when treating a pregnant surrogate. It is important to note that the legal strategy pursued by Texas Attorney General Paxton raises significant ethical concerns. Paxton assisted in obtaining a court order through strategic use of the normally neutral child-protection system to usurp parental decision-making and legally order clinicians to provide stabilizing “life-saving medical care.” This limits values-based parental decision-making in a condition where there are essentially three recognized ethically and medically appropriate options for parents to choose (Norwood procedure, heart transplantation, or comfort care). By casting this case in a context of parental neglect, if the comfort care approach is chosen, it serves as a legal end-run, with the state invoking parens patriae to mandate a specific class of intervention in a condition where (an)other recognized option(s) exist. If this holds legally, this will be a significant encroachment on parental autonomy.
It may be tempting to see this case simply as a matter of life or death, but life through intervention here brings a significant amount of burden that any patient would have the right to refuse. For children, parents exercise autonomy based on their application of values to the medical facts. Therefore, the ethical question in this case is who is the best person to make value-based determinations of the child’s best interests, not which option is the best. We believe that any ethical analysis would determine the genetic parents as the most appropriate to make these value-laden decisions, especially given consideration to the previous freely agreed-upon contract. However, this determination has also now been cast as a legal question that a court will have to decide.
Ian D. Wolfe, PhD, RN, HEC-C is the Director of ethics at Children’s Minnesota
Rafael Escandon, DrPH, PhD, HEC-C, is the founder of DGBI Clinical Research and Ethics Consulting