Journal Articles

Mandating Coverage for Fertility Preservation – A Step in the Right Direction

Connecticut and Rhode Island recently became the first U.S. states to pass legislation requiring insurance coverage of fertility preservation services for patients about to undergo a medical treatment — surgery, radiation, or chemotherapy — that may have deleterious effects on the gonads. Although the World Health Organization considers infertility a disease, and both the American Society of Clinical Oncology and the American Society of Reproductive Medicine recommend that patients facing fertility-compromising (gonadotoxic) therapy be counseled about fertility preservation and rapidly referred to reproductive specialists, insurance coverage for fertility preservation is rare.

Critics have argued that fertility-preservation techniques are experimental or at least elective procedures, that cancer treatment does not always result in infertility, and that infertility is not life-threatening. But the cryopreservation of embryos, oocytes, and spermatozoa are established techniques. Rates of cancer-treatment–related fertility impairment range from 20 to 70%, and no patient chooses to get cancer and be rendered infertile by its treatment. And although infertility may not be life-threatening, fertility preservation is life-affirming, and consultation with a reproductive specialist results in reduced long-term regret and improved physical and psychological quality of life among patients with cancer. Read More

 

Oncofertility: A Grand Collaboration between Reproductive Medicine and Oncology

By: Woodruff, Teresa K

Reproduction. Sep 2015, Vol. 150, No. 3: S1-S10

Abstract: Woodruff describes the work of the Oncofertility Consortium to provide fertility preservation options in the cancer setting and accelerate the acceptance of this critical topic on a global scale. Treatment-related infertility is an important issue for cancer survivors of reproductive age. Fertility in cancer survivors depends on type of cancer treatment applied, chemotherapy regimen, and age at treatment.   The Oncofertility Consortium sought to understand the management of fertility issues in cancer survivors by health care providers.

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Consistency in Insurance Coverage for Iatrogenic Conditions Resulting from Cancer Treatment includng Fertility Preservation

By: L Campo-Englestein

Journal of Clinical Oncology 28 (8), 1284-1286

Abstract: Insurance companies generally cover treatment for iatrogenic conditions that result from cancer treatment, including treatment for conditions that may be considered elective when “naturally” occurring.  However, one notable exception is fertility preservation for iatrogenic infertility.  The author argues that for insurance companies to maintain consistency, they should cover fertility preservation treatment for female patients with cancer because it does not differ significantly from other treatments for iatrogenic treatments they currently cover for women, such as breast cancer reconstruction after mastectomy and wigs for alopecia.

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Insuring against Infertility: Expanding State Infertility Mandates to Include Fertility Preservation Technology for Cancer Patients

By: D Basco, L Campo-Engelstein, S Rodriguez

The Journal of Law, Medicine & Ethics 38 (4), 832-839

Abstract: Basco, Campo-Engelstein, and Rodriguez make the proposal to expand infertility insurance mandates to guarantee that people can receive fertility preservation treatment prior to medical treatments that may induce infertility. They make their case by using Massachusetts as an example.  Massachusetts passed its infertility mandate in October 1987. While not the first state in the nation to do so, the Bay State went further than Maryland had two years prior.

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Livestrong Report: Iatrogenic Infertility Due to Cancer Treatments: A Case for Fertility Preservation Coverage

By: Livestrong

The Journal of Law, Medicine & Ethics 38 (4), 832-839

Abstract: In 2011, Livestrong & Fertile Hope put together a case study, position paper and policy suggestions for covering fertility preservation as part of cancer benefits. Here is the link to their detailed report which was used to exemplify how cancer impacts adolescents and young adults diagnosed with cancer aged 15 to 39 and current cancer care and services do not meet thier unique needs.

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Infertility, Cancer and Changing Gender Norms

By: S. Gardino, S Rodriguez, L Campo-Engelstein

Journal of Cancer Survivorship 5 (2), 152-157

Abstract: Recent improvements in cancer detection, treatment and techology 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. Studies consistently show that fertility is very important to female cancer patients and, while the results for male cancer patients are mixed, many men do strongly value their fertility. Unfortunately, these studies are often not translated into clinical practice by health care providers.

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Preserving the Right to Future Children: an Ethical Case Analysis

By: GP Quinn, DK Stearsman, L Campo-Engelstein, D Murphy

The American Journal of Bioethics 12 (6), 38-43

Abstract: The authors report on the case of a 2-year-old female, the youngest person ever to undergo ovarian tissue cryopreservation (OTC). This patient was diagnosed with a rare form of sickle cell disease, which required a bone-marrow transplant, and late effects included high risk of future infertility or complete sterility. Ethical concerns are raised, as the patient’s mother made the decision for OTC on the patient’s behalf with the intention that this would secure the option of biological childbearing in the future. Based on Beauchamp and Childress’s principlism approach of respect for autonomy, nonmaleficence, beneficence, and justice, pursing OTC was ethically justified.

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Oncofertility: Ethical, Legal, Social and Medical Perspectives

By: T Woodruff, L Zoloth, L Campo-Engelstein, S Rodriguez

Spring Science and Business Media

Abstract: Oncofertility has emerged as a way to address potential lost or impaired fertility in cancer patients and survivors, with active biomedical research that is developing new ways to help these individuals preserve their ability to have biological children. In order to move beyond oncofertility as a science and medical technology and begin to address the ethical, legal, and social ramifications of this emerging field, we must give voice to scholars from the humanities and social sciences to engage in a multidisciplinary discussion. 

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An Obscure Rider Obstructing Science: The Conflation of Parthenotes with Embryos in the Dickey-Wicker Amendment

By: S Rodriguez, L Campo-Engelstein, C Tingen, T Woodruff

The American Journal of Bioethics 11 (3), 20-28

Abstract: 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.

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Scientists Perspectives on Consent in the Context of Biobanking Research

By: Z Master, L Campo-Engelstein, T Caulfield

European Journal of Human Genetics 23 (5), 569-574

Abstract: Most bioethics studies have focused on capturing the views of patients and the general public on research ethics issues related to informed consent for biobanking and only a handful of studies have examined the perceptions of scientists. Capturing the opinions of scientists is important because they are intimately involved with biobanks as collectors and users of samples and health information. In this study, we performed interviews with scientists followed by qualitative analysis to capture the diversity of perspectives on informed consent. We found that the majority of scientists in our study reported their preference for a general consent approach although they do not believe there to be a consensus on consent type.  This study is one of the first to capture the views of scientists on informed consent in biobanking. 

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For the Sake of Consistency and Fairness: Why Insurance Companies Should Cover Fertility Preservation Treatment for Iatrogenic Infertility

L Campo-Engelstein

Oncofertility, 381-388

Abstract: There is much debate not only about the morality of assisted reproductive technologies (ART) but also about how they should be classified. Should ART be understood as medical treatment for a disease (infertility) or should they be relegated to boutique medicine where they are seen as elective? How we answer this question affects our thoughts about whether ART should be covered by insurance companies. Those who claim infertility is a medical disease usually advocate that ART be covered by insurance. Conversely, those who believe ART are elective procedures generally oppose insurance coverage, insisting that insurance coverage should be limited to medically necessary treatments. While the debate cannot simply be reduced to whether “real” diseases should be covered by insurance and all other conditions should not, in the minds of many, a strong connection exists between what is considered a disease and what insurance should cover.

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Politics and Parthenotes

By: C Tingen, S Rodriguez, L Campo-Engelstein, TK Woodruff

Science 330 (6003), 453-453

Abstract: On 23 August 2010, federal judge Royce Lamberth ruled that President Obama’s 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.

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