I just returned from the annual Oncofertility Consortium Conference and one of the ethical topics that came up was the possibility of disputes over frozen reproductive materials. Before undergoing life-saving cancer treatment, people may opt to freeze gametes, gonadal tissue, or embryos in order to preserve their fertility. If these people die or separate from their partners, a battle over what to do with the frozen reproductive materials can ensue. The best and easiest way to deal with disputes over reproductive material is to try to prevent them before they happen. In this blog, I discuss two ways to prevent such disputes.

One way is to have the individual with cancer write an advance directive that clearly outlines what should be done with the reproductive material should the patient die. If the reproductive materials are gametes or gonadal tissue, then ultimately the decision of what to do with the reproductive material should be made by individual with cancer, as it is her/his genetic material. If the reproductive materials are embryos, then the individuals who contributed the gametes to create the embryos should come to an agreement about how the embryos should be handled under unfortunate circumstances (e.g. death of the genetic parents or separation of the couple). Many infertility clinics require all patients—both individuals and couples—to complete a document outlining how to handle reproductive materials in unfortunate circumstances and I think this should be standard practice for oncofertility patients as well. Read the rest of this article on the blog of the Alden March Bioethics Institute at Albany Medical Center.

A recent New York Times article shares the story of Debra Demidon, who developed severe ovarian hyperstimulation syndrome (OHSS) after undergoing IVF. This potentially life-threatening condition caused her to gain more than 30 pounds of fluid and have trouble breathing, and ultimately landed her in the hospital for 5 days. OHSS is much more common in the US and UK than in Europe and Japan because the former countries rely on high-dose hormones for IVF where the latter countries use lose-dose hormones. Although rare, OHSS following high-dose hormone IVF is now one of the leading causes of maternal mortality in parts of the UK. OHSS is not the only adverse side effect of high-dose IVF for women; there are myriad other possible side effects including increased cancer risk, memory loss, and liver disorders.  Furthermore, there can also be increased risk for children born from high-dose IVF, such as low birth rate.

Knowing these serious potential health-related outcomes, why is high-dose IVF the dominant and default method used in the US? The main reason is that high-dose IVF produces many more eggs (often 20-30 eggs and sometimes even more) than low-dose IVF produce (8-10 eggs). Given that most insurance companies do not cover infertility treatments (only 15 states have laws mandating insurance companies to cover infertility treatments and there are many exemptions and caveats), many people pay out of pocket for IVF. In order to save money – IVF costs $15,000 – $30,000 a cycle – people are often willing to increase their risks to themselves (choosing high-dose IVF or low-dose IVF) if it means they’re likely to generate more eggs. Individuals in time pressure situations who may only have one shot at gathering eggs, such as cancer patients wanting to preserve their fertility before undergoing treatments that will hopefully save their lives but may render them infertile, may also opt for high-dose IVF…Read the rest of this article on the blog of the Alden March Bioethics Institute at Albany Medical Center.

Around 10% of all people diagnosed with cancer are in their reproductive or pre-reproductive years (under age 45). This means that, each year, approximately 133,000 women, men, and children who are diagnosed with cancer are at risk for infertility due to the very treatments (e.g. chemotherapy, radiation, and surgery) that can save their lives. Given improved survivorship rates, fertility concerns have emerged as an important quality of life issue to cancer survivors and their families. Oncofertility, a new and interdisciplinary field at the intersection of cancer and fertility, is working to address potential infertility as a result of cancer treatment.

Although more cancer patients are being offered and are using fertility preservation technology (FPT), its cost and the lack of insurance coverage for it are often the major reasons given by oncologists for why they do not provide information on fertility preservation options to their patients. One method of ensuring people in their reproductive years or children who are diagnosed with cancer have access to and insurance coverage for FPT is to create a legal mandate requiring insurance companies to cover FPT for cancer patients.

So this is precisely what we did!…Read the rest of this article on the blog of the Alden March Bioethics Institute at Albany Medical Center.

As discussed in our blog last month, a Cancer Support Community (CSC) survey found that almost half of women with breast cancer did not receive information about breast reconstruction when reviewing treatment options. The outcome of this survey is shocking, especially given that due to the Women’s Health and Cancer Rights Act (WHCRA) of 1998, insurance companies must cover the costs of breast reconstruction surgery if they cover the costs of mastectomy. While many patients are not clear on the specifics of what their health insurance covers, it seems odd that providers would not be familiar with WHCRA, as it is a federal act and therefore applies to all health insurance organizations—public and private—in all states. Additionally, WHCRA deals with common and well established procedures (mastectomy and breast reconstruction), is available for patients with the most well-known and publicized type of cancer (breast cancer), and received significant media coverage during its passage.

Determining why providers are not discussing breast reconstruction with their patients is an important next step to ensuring that these conversations happen. If lack of knowledge is the main reason for the dearth of conversations, then perhaps the CSC, or some other organization, can create a new resource to inform providers. This provider resource could serve as a parallel of and/or work in conjunction with the CSC’s new national program, “Frankly Speaking about Cancer: Spotlight on Breast Reconstruction,” which offers comprehensive information about breast reconstruction as a way to empower patients.

Some providers may know about WHCRA but generally not mention breast reconstruction to their patients because they do not see it as part of their role (e.g. they are oncologists, not plastic surgeons; they are nurses, not physicians). These providers could benefit from the Oncofertility Consortium model of bringing together experts from a variety of disciplines in order to ensure patients receive the best and most complete cancer care.

My article, “Including Fertility Preservation Treatment: Consistency and Fairness in Insurance Coverage for Iatrogenic Conditions Resulting from Cancer Treatment,” was recently accepted for publication in the Journal of Clinical Oncology.

In the article, I discuss how insurance companies currently cover treatment for iatrogenic conditions resulting from cancer treatment that could be perceived as elective when “naturally” occurring, such as breast reconstruction following mastectomy and wigs for alopecia. Looking at female cancer patients, I explore similarities between these iatrogenic conditions and iatrogenic infertility. I argue that, because treatment for iatrogenic infertility does not differ in morally significant ways from treatment for these other iatrogenic conditions that are covered, then it should also be covered if insurance companies want to maintain consistency and promote fairness.

The article can be downloaded for free here.

The Second Annual Oncofertility Summit will take place at Northwestern University, Evanston Campus, from July 22-24, 2009. The theme of this year’s conference is reflections on Oncofertility from the humanities and social sciences. The goal of the conference is to bring together an interdisciplinary pool of experts to examine the complex ethical issues raised by recent developments in the field of Oncofertility. The conference will consist of eight panels: Clinical Science and Research; International and Legal Perspectives; Bioethics; Clinical Ethics and Practice; Religion; Economics, Feminist Theory; and Reproduction, Parenthood, and Sexuality.

My name is Lisa Campo-Engelstein and I am a new postdoctoral fellow in bioethics. I received a B.A. from Middlebury College, with a double major in philosophy and pre-med, as well as a minor in sociology. I did my graduate work at Michigan State University in philosophy with a focus on bioethics, feminist theory, and social/political philosophy. The title of my Masters thesis was “A Feminist Critique of Rational Democratic Deliberation for Health Care Rationing” and the title of my dissertation was “Contraceptive Responsibility: Trust, Gender, and Ideology.” I am now examining ethical issues surrounding Oncofertility, especially as they relate to gender and sexuality, justice and allocation, and philosophical understandings of disease.