Sarah B. Rodriguez

Infertility, cancer, and changing gender norms

IntroductionRecent improvements in cancer detection, treatment, and technology have increased survivorship rates. These same life-saving treatments, however, can lead to infertility or sterility. Oncofertility, an emerging field at the intersection of cancer and oncology, centers on providing cancer patients with the potential to preserve their biological fertility.MethodsWe examine the history of how men and women have been treated for infertility and analyze contemporary studies of how women without cancer respond to infertility.ResultsBoth female and male cancer patients and survivors value their fertility, although there is conflicting evidence on the degree to which women and men value fertility. Some studies have found that women and men value their fertility equally while others found that women value their fertility more than men. Gendered norms around fertility and parenthood seem to be changing, which may minimize these discrepancies.Discussions/conclusionsAlthough oncofertility is a nascent field, infertility is a historically relevant medical condition that is characterized by gendered narratives and norms. An analysis of the historical evolution of the understanding and treatment of infertility leads insight into modern conceptualizations of infertility both generally and in the case of cancer. Understanding these historical and current gendered influences helps to define the current context in which cancer patients are confronting potential infertility.Implications for cancer survivorsThe insight gained from this analysis can be used to inform clinical practice, offering guidance to healthcare providers approaching cancer patients about potential infertility, regardless of gender.

An obscure rider obstructing science: the conflation of parthenotes with embryos in the Dickey-Wicker amendment.

In 1996 Congress passed the Dickey–Wicker Amendment (DWA) as part of an appropriations bill; it has been renewed every year since. The DWA bans federal funding for research using embryos and parthenotes. In this paper, we call for a public discussion on parthenote research and a questioning of its inclusion in the DWA. We begin by explaining what parthenotes are and why they are useful for research on reproduction, cancer, and stem cells. We then argue that the scientific difference between embryos and parthenotes translates into ethical differences, and claim that research on parthenotes is much less ethically problematic. Finally, we contextualize the original passage of the DWA to provide an explanation for why the two were possibly conflated in this law. We conclude by calling for a public discussion on reconsidering the DWA in its entirety, starting with the removal of parthenogenesis from this prohibition of National Institutes of Health (NIH) funding.

The Organ‐That‐Must‐Not‐Be‐Named: Female Genitals and Generalized References

The reference to the vagina as “it” or “down there” is symptomatic of two larger cultural problems: not naming the vagina when speaking about the vagina, and conflating the vagina with the external female genitalia. The euphemisms and obfuscating language have implications both for lay understandings of female bodies and for the practice of health care. Granting and using a name gives both the named and the namer power and legitimacy.

Politics and parthenotes

Broad restrictions on funding for human embryo research can stymie work that was unnecessarily precluded by a flawed U.S. law. On 23 August 2010, federal judge Royce Lamberth ruled that President Obamas 2009 executive order expanding federal funding of human embryonic stem cell (hESC) research violated a federal law, the Dickey-Wicker Amendment (DWA), which prevents the funding of research that destroys embryos (1). This congressional prohibition defines a human embryo as “any organism not protected as a human subject” that was “derived by fertilization, parthenogenesis, or any other means from one or more human gametes” (2). The situation is changing rapidly, with court decisions pending and the possibility of legislation that may, for example, exempt hESCs from DWA provisions (3). In danger of being overlooked is the wording about parthenogenesis, which threatens a separate, but potentially fruitful, area of research.

Fertile Future? Potential Social Implications of Oncofertility

Recently, ethicists, legal scholars, and social scientists have turned their attention to a developing form of assisted reproductive technology (ART): oncofertility. This new field has emerged to preserve the fertility of young men and women who need to undergo cancer treatments that may cause reduced fertility or sterility. Roughly 10% of those diagnosed with cancer are younger than age 45 and thus within their reproductive years. Many of the emerging options within oncofertility are in the investigational stage, particularly those for girls younger than reproductive age. These include whole-ovary and oocyte cryopreservation and the freezing of ovarian tissue. For boys younger than reproductive age, and thus unable to cryopreserve semen, investigational options include freezing testicular tissue. For many within this demographic, fertility preservation is a significant quality-of-life issue. Indeed, the American Society of Clinical Oncology recommends that all oncologists refer patients for counseling regarding oncofertility options. In a recent article, physician Patrizio and ethicist Caplan noted some potential problems with oncofertility, including concerns regarding the long-term safety of the experimental options in fertility preservation for patients with cancer, the possibility of reintroducing cancer with the transplantation of cryopreserved tissue, and the welfare of the offspring of parents who have a shortened life expectation. Overall, however, they argued that on an individual-patient level, as long as the standard of informed consent/assent with particular attention to pediatric patients is followed, there should be no ethical issues in offering fertility preservation to patients with cancer. Although there are perhaps few ethical issues concerning oncofertility on an individual level, this does not mean there are not larger social implications worth considering. Deliberation of the potential larger social implications of fertility preservation for people without cancer is an important discussion; however, in this article, we focus on the possible larger social implications of oncofertility in an attempt to foster a full consideration of this emerging ART. Future use and disposal of stored gametes, embryos, and gonads and gonadal tissue are major concerns for all types of ART. However, it is especially pertinent in regard to oncofertility, because the goal is to store these materials, the materials may belong to minors, and because the patients have cancer (regardless of age), they are more likely to die in the near future than traditional infertility patients. According to US law, gametes and embryos are classified as property, and disputes over frozen material sometimes have to be resolved in court—often with different results for similar cases. Future use and disposal of gonads and gonadal tissue are somewhat trickier than use and disposal of embryos and gametes, because it is unclear whether gonads and gonadal tissue should be classified as organs or as gametes. Classification of the materials must be addressed not only to prevent and resolve disputes between individuals, but also to engender healthy debate regarding the moral status of these materials and to ensure fair allocation of organs and tissue under the United Network of Organ Sharing. There is also the question of who should pay for the preservation of these materials. Some have argued that insurance companies should cover oncofertility (even if they do not cover other forms of ART), because it does not differ from other treatments for iatrogenic conditions currently covered for patients with cancer. However, there is concern over whether this is a just use of finite health care resources, because as noted, only approximately 10% of cancers affect those younger than age 45 years. According to the American Society of Clinical Oncology, the infertility-inducing risks associated with certain forms of cancer treatments are unknown, in part because of a paucity of information from human data and in part because of the importance individual patient factors have in influencing fertility. It may not be a wise allocation of resources (either personal or social) to preserve ovarian tissue, gametes, or embryos for someone whose chances of iatrogenic infertility from cancer treatment are unknown. Moreover, given the modest success rates of established forms of ART, some may question whether an allocation of resources toward options that are not currently highly reliable in bringing forth the expected baby is worth the financial investment. The success rate for ovarian freezing is unknown, and we do not know whether the frozen tissue will be viable in the future. Furthermore, we know from research on short-term health outcomes that those conceived using ART have greater health risks compared with naturally conceived children, particularly risks associated with multiple pregnancies, higher rates of prematurity, and low birth weights, which can lead to serious health complications. Hundreds of studies have evaluated these risks, but most have been limited to newborns and children. As for research beyond the early years of life, studies in mice have found some long-term health effects, for example, in imprinting and in behavior. Information from both mice and short-term human studies underlines the need for long-term health outcomes research. JOURNAL OF CLINICAL ONCOLOGY COMMENTS AND CONTROVERSIES VOLUME 31 NUMBER 6 FEBRUARY 2

Practical Parthenote Policy and the Practice of Science

We wrote our article, “An Obscure Rider Obstructing Science: The Conflation of Parthenotes with Embryos in the Dickey-Wicker Amendment,” out of concern for the practical effects of the Dickey-Wicker Amendment (DWA) on the practice of science and to initiate a discussion towards removing parthenotes from the definition of an embryo in it (Rodriguez et al. 2011). We appreciate the beginnings of this discussion through the comments of the four reviewers. We will briefly address what we saw as some of their most important comments in turn. We agree with Strong (2011) that there are good reasons for requiring epistemic rationality when determining public policy and, in fact, one of our main goals in the essay was to highlight the importance of basing policies on empirically supported claims. As it currently stands, the DWA draws upon unsupported factual claims, resulting in 1) a diminished ability to promote the common good and 2) a restriction of the liberty of citizens. First, banning publicly funded research on parthenotes minimizes promotion of the common good by inhibiting the scientific discoveries and knowledge that could greatly benefit society. Second, the DWA restricts the liberty of publicly funded scientists, as well as others involved in this research and/or the liberty of those who could benefit from it. According to Kaebasche (2011), what makes embryos metaphysically different from parthenotes, and thus deserving of moral status, is not genetic uniqueness but rather a complete development program. This point raises interesting ethical questions about the moral status of parthenotes from other species that, unlike human parthenotes, do have a complete development program. In particular, it may lead some to classify human parthenotes as developmentally disabled forms of human life. We agree with Kaebasche that “the best characterization of the human parthenote is not as a deformed human individual, but rather as a biological entity with an ambiguous moral status” (29). In his commentary, DiSilvestro (2011) raises the important distinction between phase sortal—“a type of word

Saving More than Lives: A Gendered Analysis of the Importance of Fertility Preservation for Cancer Patients

Cancer affects millions of Americans annually. Men’s lifetime risk of developing cancer for all sites is 50%; women’s lifetime risk is just over 33% (American Cancer Society, 2009). While cancer is generally perceived as a condition affecting people past their child-bearing years, nearly 10% of those diagnosed are under age 45 (Horner et al., 2009). Indeed, some of those diagnosed with cancer are still children. In 2006, an estimated 9,500 new cases of pediatric cancer were diagnosed in the United States (American Cancer Society, 2006). Because of recent breakthroughs and more aggressive treatments, the survival rate of those diagnosed with childhood cancer has risen to almost 80% (Clayman, Galvin, and Arnston, 2007). One estimate is that by 2010 one of every 250 adults will be a survivor of childhood cancer (Kinahan, 2007).

Conceiving Wholeness: Women, Motherhood, and Ovarian Transplantation, 1902 and 2004

Scholars have shown that organ transplantation may transform ideas about one’s body, with recipients feeling that they are receiving not just a body part but also a part of the donor’s identity. This article focuses on a different way in which organ transplantation shapes recipient identity: the idea of becoming whole. We present the case studies of two women separated by a century (one in 1902 and the other in 2004) who sought ovarian transplantation, and examine how ovarian transplantation can engender a sense of wholeness on the individual, the familial, and the cultural levels, due to its ability to enable a recipient to naturally conceive and experience pregnancy.

Placing the History of Oncofertility

On Fertile Hope’s website, Cathy, who at 35 was diagnosed with cervical cancer, shared her feelings and thoughts about her double diagnosis of cancer and infertility. At the time of her cancer diagnosis, Cathy had been married for 3 years and she and her husband had been trying to conceive for 2 years. Following their first attempt using Clomid and insemination, Cathy got pregnant with twins. Their joy abruptly ended, however, when 4 months into her pregnancy Cathy learned she had cervical cancer; her oncologist recommended an immediate hysterectomy.

Female sexuality and consent in public discourse: James Burt's "love surgery".

Beginning in the mid-1960s, gynecologist and obstetrician James Burt developed what he called “love surgery” on unknowing women after they gave birth. It was, he later told them, a modification of episiotomy repair. In the mid-1970s, Burt began promoting love surgery as an elective sexual enhancement surgery and women came to his clinic in hopes of a surgically-enabled better sex life. But though Burt now offered love surgery, he continued to perform it on patients who did not come to him for it through the late 1980s. Over the course of more than two decades, discourse on love surgery occurred twice nationally. In the late 1970s, feminists and sex therapists attacked love surgery as altering a woman’s body for male sexual pleasure. Though Burt never hid his continued use of love surgery on women who had not elected for it, the public discourse at this time focused on love surgery as a reflection of larger cultural ideas about female sexuality. In the late 1980s, when Burt’s love surgery again appeared in the national media, the issue of informed consent, largely absent from the discourse about love surgery in the late 1970s, moved to the center. Though significant activity happened within the local medical and legal communities beginning in the mid-1970s regarding Burt and his practice of love surgery, my interest here is on these two periods when the discourse regarding love surgery, female sexuality, and informed consent occurred within a national frame.