An amateur hip-hop dancer, Hoa D. felt “single and fabulous.”1 She worked as a human resources specialist at a busy health clinic and loved to travel, go fishing and dance.
But two weeks after celebrating her 32nd birthday, Hoa found out that she had stage 2A invasive ductal carcinoma, a common type of breast cancer. Because the chemotherapy and radiation in her treatment could compromise her reproductive functions, her oncologist recommended that she consider egg freezing before treatment. In four weeks, Hoa shuffled through appointments with a primary oncologist to design a treatment plan, a cardiologist to treat a pre-existing condition, a surgical oncologist to review the surgical plan and a fertility specialist to brainstorm her future fertility options.
An amateur hip-hop dancer, Hoa D. felt “single and fabulous.”1 She worked as a human resources specialist at a busy health clinic and loved to travel, go fishing and dance.
“Fertility was the last thing on my mind. Survival obviously came first, so the whole egg-freezing process was a whirlwind to me. I was given a bunch of forms to fill out at every doctor’s office. I was also busy fundraising among family and friends for the cost of egg freezing. It was very stressful. But now that I’m almost out of treatment, I’m glad I did it. It’s one less “what-if” to ponder in the future,” Hoa recalled.2
Few technological breakthroughs have turned the intimate human experience of reproduction on its head like assisted reproduction technologies (ARTs).3 Coupled with treatment advances that dramatically improve survival rates, ARTs offer nearly 750,000 young cancer patients like Hoa unprecedented opportunities to build a “new normal” life after cancer.4 For pubertal patients, the fertility preservation options include cryopreservation of sperms, eggs and embryos, all of which are the standard of care.5 For pre‐pubertal patients, the only options are ovarian and testicular tissue cryopreservation, which are still experimental.6
This article explores the unique legal issues that cancer patients may face as they navigate through fertility preservation. It is not a comprehensive survey of the law given the multidisciplinary nature of the topic. Instead, it highlights the more salient issues ― namely disputes over posthumous reproduction and disposition of genetic material ― and the resources that patients may need to mitigate them.
Cryopreservation of Sperms and Eggs
Male and female patients face inherently different medical and legal challenges in fertility preservation. For pubertal males, sperm banking presents an effective and relatively inexpensive option that takes from two to four hours.7 However, the story is different for females. Some have to weigh fertility against treatment delay because egg retrieval requires hormonal stimulation and multiple-visit procedures, which could take two to four weeks.8 Furthermore, the old technology, known as slow freezing, only yielded about 60 percent egg survival rates before the mid-2000s.9 Thus, many had to choose embryo freezing, which had better success rates but required a donor’s sperms and costly in vitro fertilization (IVF).
From a legal and reproductive justice perspective, vitrification changed the game. Vitrification is a flash-freezing method that improves egg survival rates to 90 percent or more.10 As it became a standard of care in 2012, the number of egg-freezing cycles exponentially increased from 2,020 in 2007 to 65,840 in 2016.11 Not only does it offer an option for patients who could not choose embryo freezing for religious or cultural reasons, the technology also empowers women to fully control their future fertility, potentially avoiding the legal quagmires of frozen embryo disposition in case of divorce or split-up.12
Two emerging legal issues from disputes over frozen sperms and eggs are posthumous disposition and reproduction. Typical disposition options include donation to a third party for procreation, donation for research, and discard/destroy. As a general rule, the provider of the gametes controls their use and disposition, as subject to public policy.13 For example, in deciding who could access and use the decedent’s banked sperms, at least three appellate courts have looked to the decedent’s intent in written directives such as a disposition agreement or a will.14 With uncertainties inherent in a cancer prognosis, this underscores the importance of securing clear written directives that include (1) the patient’s intended use during his or her lifetime and (2) a disposition option in the event of death or incapacity.
In case the patient intends to have a child posthumously, the directive should also include (1) consent for posthumous reproduction by a specific partner, (2) the patient’s intended relationship with and (3) consent to support any resulting child. As illustrated in Woodward v. Commissioner of Social Security, these items could become essential to secure inheritance rights for the child.15 Two years after her husband passed away from leukemia, a woman gave birth to twins using his banked sperms. Questions about parentage arose when she applied for Social Security survivor’s benefits for the children.16 Answering a narrow question about inheritance rights of posthumously-conceived children by a married couple, the Massachusetts Supreme Judicial Court acknowledged the inheritance rights of the children,17 as long as (1) the claimant established a genetic relationship between the children and the gamete provider, and (2) the gamete provider “clearly and unequivocally consent[ed] not only to posthumous reproduction but also to the support of any resulting child.”18
Cryopreservation of Testicular and Ovarian Tissues
Preserving fertility in pediatric patients is a major quality-of-life issue, as most children now survive their cancer.19 Currently, ovarian and testicular tissue cryopreservation offer the only options for pre-pubertal patients. Despite being experimental, the technologies are fast-evolving. Around 130 live births have been reported worldwide with estimated pregnancy rates of 37.7 percent after transplantation of frozen ovarian tissues.20
Many legal questions surrounding these experimental methods remain hypothetical. Imagine every parent’s nightmare: your nine-year-old daughter, Anne, has been diagnosed with leukemia. You are anxious to begin treatment. But in the long list of side effects that Anne would endure, you see “infertility.” You may enroll her in an experimental protocol to preserve her ovarian tissues for future transplantation with about 37 percent success chance. To her, this means more needles, pain but no immediate benefits. You look at Anne’s pale face, wondering what would be best for her.
This scenario poses two thought-provoking questions. The first concerns the legal status of the frozen ovarian tissues. Like a kidney, they make up an organ that could be transplanted to treat medical problems such as pre-mature menopause. Should they be subjected to the laws governing body organs?21 On the other hand, they contain genetic materials and can lead to a pregnancy, like eggs and sperms. Thus, should they be considered quasi-property like gametes?22 A dispute over ownership or over whether gonad tissues could be exchanged for consideration could necessitate such legal classification.23 So far, no court has decided on this issue.
The second question is whether parents and healthcare providers have an affirmative duty to preserve a minor’s fertility. In the above scenario, what if the parent decides to forgo the experimental protocol? Is failure to preserve Anne’s fertility the same as active sterilization?24 Some factors have been proposed to weigh in this question, including medical risks and benefits, societal expectations, effects on the child’s future, and success rates of the treatment.25 This hypothetical question may become increasingly relevant if gonad tissue cryopreservation technologies become the standard of care in the future.
Disposition of frozen gonad tissues or gametes of minors are complicated by issues of capacity and informed consent. Pre-pubertal children rely on their parents to consent to treatments by proxy. One common approach to parental consent in healthcare is to decide in the best interests of the child.26 However, for decision-making about disposition in the above scenario, whether it would be in Anne’s best interests to destroy or donate her frozen tissues for research if she does not survive cancer is speculative at best. The ethical dilemmas have prompted calls for a multi-step informed consent process in which fertility preservation protocols for minors should exclude disposition options typically available to adults, such as destroying, donating to a third party and donating to research.27 The minor patients should have an opportunity to consider these options in the future after obtaining legal capacity.
Cryopreservation of Embryos
Embryo freezing is an established fertility preservation method. There are estimated 600,000 to one million frozen embryos kept at fertility clinics in the United States.28 The disposition of these embryos in the event of death or divorce generates a host of legal issues. Many of the court battles involved cancer survivors because, to many, the embryos represent their last chance at having a biological child.
A patchwork of legislative and judicial approaches currently govern embryo disposition. A dozen states have statutes regulating ARTs, but most are inadequate in addressing disposition issues.29 For example, Florida requires fertility providers and couples to agree in writing about their disposition intention before IVF, but does not prescribe any penalty for violation.30 California provides a more comprehensive statutory framework, requiring the fertility clinic’s form to list specific disposition options, such as “thawed with no further action taken,” upon death, divorce and failure to pay embryo storage fees.31 In contrast, some states such as Louisiana and New Mexico refrain from prescribing any disposition option in favor of protecting the embryos.32 New Mexico, for example, requires that the IVF procedure “shall include provisions to ensure that each living fertilized ovum, zygote and embryo is implanted in a human female recipient” with no mention of disposition at all.33
In more than 20 appellate embryo disposition cases,34 courts have adopted two primary analytical frameworks: (1) the contractual approach and (2) the balancing approach.35 As the majority, courts adopting the contractual approach generally hold that an oral or written agreement between the embryo progenitors at the time of IVF is controlling as long as it is consistent with public policy.36 If an agreement is absent or found unenforceable, the courts would apply a balancing test to weigh the parties’ interests.37 While the facts and outcomes of the cases wildly differed, the common thread is that, between the rights of one party to procreate and the rights of the other party not to procreate, the courts tended to side with the latter.
However, two recent cases involving cancer survivors carved out an “infertility exception” to this rule. In the 2012 case Reber v. Reiss, 44-year-old Reiss asked for custody of the embryos created with her ex-husband prior to her breast cancer treatment over his objection.38 Without any agreement about disposition upon divorce, the trial court applied the balancing test. The court found that Reiss’ interests to procreate outweighed her ex-husband’s interests not to procreate because she would never become pregnant without the embryos after suffering infertility from cancer treatment.39 Three years later, an Illinois appellate court reached a similar result in Szafranski v. Dunston.40 Like the parties in Reber, the Szafranski couple did not have a written disposition agreement.41 Instead of applying the balancing test, however, the court found an enforceable oral contract granting the embryos to the female ex-partner (who was the cancer survivor) because “the very purpose of their agreement was to provide [the female ex-partner] with the ability to have her own biological child in the future with the return of her health.”42 Regardless of the approaches, the courts tended to sympathize with the survivors who suffered cancer-related infertility absent a clear written disposition agreement.
The “infertility exception,” however, may not be extended to cases with clearly written disposition agreements. In Findley v. Lee, a California trial court denied a 46-year-old cancer survivor ex-wife custody of the embryos because the couple had agreed in writing to discard the embryos upon divorce. 43 The court cited policy reasons for enforcing the agreement, such as avoiding costly litigation and giving some certainties to all parties involved in IVF.44
Findley also provides a revealing snapshot of a couple’s decision-making about embryo disposition. Findley was a finance executive, and Lee was an anesthesiologist who had worked at a fertility clinic. The couple met as undergraduate students at Harvard. After being diagnosed with breast cancer, Lee decided to undergo embryo cryopreservation with Findley. Two weeks before the egg retrieval procedure, they met with a nurse to go over consent forms. Findley testified that during that meeting he spent about 10 to 20 minutes to review, initial and sign a 10-page Consent & Agreement in which he selected the “thaw and discard” option for the embryos upon divorce. For Lee, the entire process took 10 minutes or less. They did not remember whether the forms were sent to them for review in advance, but neither opted to have the forms reviewed by an attorney, which was an option specifically given to them.45
Implications and Next Steps
Cancer patients often overlook the critical legal implications of their choices in a fertility clinic’s dispositional agreement, such as the “Consent & Agreement” in Findley. In the initial shock of a cancer diagnosis, fertility may be a marginal concern. Unlike the couple in Finley who were highly educated (one was a medical professional) and could likely afford the costs of treatments and attorney fees, the average cancer patient may face even greater informational and financial challenges throughout the fertility preservation process. Such patients may be overwhelmed by the amount of information typically front-loaded before treatments. Unfortunately, cost is also a major issue: there is no federal insurance coverage mandate, and only seven states currently have coverage laws for fertility preservation.46 Recommending cancer patients to seek legal counsel is a sound and logical step, but it is not always practical in reality.
Perhaps more could be done. In recent years, an encouraging development has been the growth of fertility preservation programs around the country. Offered at almost every major cancer center and hospital, these interdisciplinary programs help coordinate a patient’s fertility treatment as a part of his or her larger cancer treatment protocol.47 They incorporate education and counseling components that help orient patients on what to expect even before they enter a fertility clinic.48 Many online fertility decision-aid tools are being developed as part of these programs.49 Fertility preservation programs are a prime opportunity to educate patients on the legal issues regarding use and disposition of gametes or embryos, and to provide legal resources for patients prior to their reviewing or completing any agreement.
This is an emerging yet important area of the law given its potential impact on quality of life for millions of cancer survivors. Carefully drafted agreements and consent forms complying with state laws continue to serve as important tools to protect everyone involved. Yet addressing all of the nuanced legal aspects of fertility preservation amidst rapidly evolving science requires more than a checkpoint intervention: it calls for an interdisciplinary approach and a holistic evaluation of all of the patient’s needs throughout his or her treatment journey.
- Interview with Hoa D., cancer patient. Houston, TX. March 13, 2020.
- For more information on ARTs, see Gold, K.J., Esq. and Neufeld, M., Esq., The A, B, Cs (along with CDCs and FDAs) of Regulatory Implications over Assisted Reproductive Technology, The Health Lawyer, Vol. 32, No. 2, December 2019,https://www.americanbar.org/groups/health_law/publications/health_lawyer_home/2019-december/abc-cdc/.
- Woodruff, T.K., Oncofertility: A Grand Collaboration between Reproductive Medicine and Oncology, Reproduction, 2015; 150(3): S1-10, 2.
- Oktay, K., et al., Fertility Preservation for Patients with Cancer: American Society of Clinical Oncology Clinical Practice Guideline Update, J Clin Oncol. 2018; 36(19): 1994-2001.
- Alliance for Fertility Preservation, Sperm Banking, https://www.allianceforfertilitypreservation.org/options-for-men/sperm-banking.
- Alliance for Fertility Preservation, Egg Freezing, https://www.allianceforfertilitypreservation.org/options-for-women/egg-freezing.
- Southern California Reproductive Center, Egg Freezing Success Rates, Feb. 2018, https://blog.scrcivf.com/egg-freezing-success-rates.
- Nagy, Z.P., et al., Vitrification of the Human Embryo: a More Efficient and Safer In Vitro Fertilization Treatment, Fertil Steril, 2020; 113(2): 241–47, 241.
- Crockin, S.L., Legal Issues in Oncofertility Treatment (333-47, 334), in Textbook of Oncofertility Research and Practice: A Multidisciplinary Approach, Cham, Switzerland: Springer, 2019.
- For example, a California appellate court held that artificial insemination of a decedent’s sperms does not violate public policy in California because “[it is] entirely speculative as to whether any child born to Hecht using decedent's sperm will be a burden on society.” See Hecht v. Superior Court, 16 Cal. App. 4th 836, 860 (1993).
- See Hecht, 16 Cal. App. 4th at 847-50; Hall v. Fertility Inst. of New Orleans, 94-1135 La. App. 4 Cir. Dec. 15, 1994, 647 So. 2d 1348, 1351-52; Estate of Kievernagel, 166 Cal. App. 4th 1024, 1031-33 (2008).
- Woodward v. Comm'r of Soc. Sec., 760 N.E.2d 257, 269 (Mass. 2002).
- Whether a posthumously-conceived child could receive federal benefits depends on the legal relationship of the child to the decedent under intestacy law of the decedent’s domiciliary state. See Astrue v. Capato, 566 U.S. 541 (2012).
- Woodward, 760 N.E.2d at 266-67.
- Id. at 269. Woodward represents an emerging and fragmented line of cases on social security benefits entitlement of posthumously conceived children. Because of state intestacy variations other states have not applied the Woodward test. Compare Woodward, 760 N.E.2d to Khabbaz v. Comm'r, Soc. Sec. Admin., 930 A.2d 1180 (N.H. 2007).
- Crockin, supra n. 12 at 334.
- Pacheco, F. & Oktay, K., Current Success and Efficiency of Autologous Ovarian Transplantation: A Meta-analysis, Reprod Sci. 2017 Aug; 24(8):1111-1120.
- Campo-Engelstein, L., Common Ethical Issues in Oncofertility (365-61, 359), in Textbook of Oncofertility Research and Practice: A Multidisciplinary Approach, Cham, Switzerland: Springer, 2019.
- For a more in-depth discussion on classification of gonad tissues, see Lee, K., Ethical Considerations of Ovarian and Testicular Tissue Cryopreservation in Pre-Pubertal Children Who Cannot Assent, 36 Law & Ineq. 95 (2018).
- Dolin G., et al., Chapter 9: Medical Hope, Legal Pitfalls: Potential Legal Issues in the Emerging Field of Oncofertility (111-34, 123), in Oncofertility, Cancer Treatment and Research, 2010, DOI 10.1007/978-1-4419-6518-9_9.
- Id. at 124.
- American Academy of Pediatrics Committee on Bioethics, Informed Consent, Parental Permission, and Assent in Pediatric Practice, Pediatrics, 1995; 95(2): 314-17, https://pediatrics.aappublications.org/content/pediatrics/95/2/314.full.pdf.
- Crockin, supra n. 12 at 345; Dolin supra n. 24 at 125-29.
- Lester, C., Embryo “Adoption” is Growing, but it’s Getting Tangled in the Abortion Debate, Feb. 2019, https://www.nytimes.com/2019/02/17/health/embryo-adoption-donated-snowflake.html.
- In 2019, the American Bar Association approved the Model Act Governing Assisted Reproduction, providing states with an updated legislation template, https://www.americanbar.org/content/dam/aba/administrative/family_law/committees/art/resolution-111.pdf.
- See Fla. Stat. § 742.17.
- Cal. Health & Safety Code § 125315.
- See La. Stat. Ann. § 9:121-133; N.M. Stat. Ann. § 24-9A-1.
- N.M. Stat. Ann. § 24-9A-1.
- Crockin supra n. 12 at 337.
- A third approach, the contemporaneous mutual consent approach, has been adopted by the Supreme Court of Iowa. This relatively unpopular approach favors the status quo: the parties should keep the stored embryos indefinitely until they reach a disposition agreement. See In re Marriage of Witten, 672 N.W.2d 768 (Iowa 2003).
- See, e.g., Kass v. Kass, 663 N.Y.S.2d 581, 590 (App. Div. 1997) (“[W]here the parties have indicated their mutual intent regarding the disposition of the pre-zygotes in the event of the occurrence of a contingency that decision must be scrupulously honored”), aff'd, 696 N.E.2d 174 (N.Y.1998).
- See, e.g., Davis v. Davis, 842 S.W.2d 588 (Tenn. 1992).
- Reber v. Reiss, 42 A.3d 1131, 1132-33 (Pa. Super. Ct. 2012).
- Id. at 1140-41.
- See Szafranski v. Dunston, 34 N.E.3d 1132 (Ill. App. Ct. 2015).
- Id. at 1142.
- Id. at 1150.
- Findley v. Lee, 2016 WL 270083 (Cal.Super.).
- Id. at 29-30.
- Id. at 3-9.
- The seven states are Connecticut, Delaware, Illinois, Maryland, New Hampshire, New York, and Rhode Island. See RESOLVE. Infertility Coverage by State, https://resolve.org/what-are-my-options/insurance-coverage/infertility-coverage-state/.
- Woodruff, supra n. 4 at 6-7.
- Woodard, T.L., et al. The Pathways Fertility Preservation Decision Aid Website for Women with Cancer: Development and Field Testing, J Cancer Surviv. 2018 Feb; 12(1): 101-114. As an additional resource, the public now has access to a fertility information hotline with a patient navigator (866-708-FERT). See The Oncofertility Consortium, About the FERTLINE. http://oncofertility.northwestern.edu/resources/about-fertline.
About the Author
To Nhu Huynh (@TonhuTo) is a part-time first-year student at the University of Houston Law Center (@UHLaw). She has worked full-time in cancer prevention education and outreach for five years in Houston, Texas. She graduated with high honors from the University of Pennsylvania with a major in Health & Societies in 2012 and holds a Master of Public Health degree from the University of Texas School of Public Health. She will participate as a 1L Diversity Fellow in the 2020 Summer Program at the Houston office of Gibson, Dunn & Crutcher LLP. She is passionate about combining her public health and education experiences with her love for the law to advocate for cancer patients and survivors. She may be reached at [email protected].