By Cathryn Smeyers

This is the final installment in a two-part blog story featuring Oncofertility Consortium member, Gregory Dolin, MD, JD, focusing on his recent Oncofertility Virtual Grand Rounds presentation. To read the 1^st blog, click here.

In his presentation, Dr. Dolin highlighted some of the problems that exist within the legislative process that make it even harder for scientific issues to be successfully conveyed to lawmakers.  According to Dr. Dolin, the hearing process, which many assume involves full congressional engagement, the presentation of relevant information and lively debate, is often more like “kabuki theater.”  Only invited participants are allowed to testify, hearings are rarely and sparsely attended, and the chairman has a nearly complete control of the agenda and the text of any proposal discussed.  Furthermore, after the hearing, much work is done by the staff in secret, the House Rules Committee can amend or rewrite the bill in any way it sees fit, floor debates may be very limited, and Conference Committees once again have the opportunity to amend or rewrite the bill outside of public view.

So what’s the solution?  How can we ensure that the people in control of federal dollars are scientifically literate and well informed?  Dr. Dolin proposes the creation of an objective body of scientific advisors charged with evaluating all proposed bills and advising Congress of the likely effect of legislation.  This body would also have to solicit scientific input from members of the public, which would allow scientists to register their opinions.  Models of this currently exist in the form of the Congressional Budget Office and the late Office of Technology Assessment. The creation of such an office, however, is just a proposal, and we are unlikely to see it realized in the near future.  In the interim, Dr. Dolin advises that scientists involve themselves in the legislative process and do what they can to ensure that Congress hears and understands complex scientific research.

The Oncofertility Consortium whole-heartedly agrees with Dr. Dolin, and we feel that Dickey-Wicker underscores the necessity for scientists to not only have a voice in the political sphere but to be adept communicators who can appropriately relay complex scientific information to a lay audience.  We hope our blog, for example, allows us to relay scientific research in a way that is both comprehensible and meaningful to our readers. Repropedia (www.repropedia.org) is another tool that we use to clearly communicate scientific information.

Repropedia is a website that is edited by scientists across the globe and serves as an authoritative source of definitions for reproductive health terms. This site directly interacts with other website by providing pop-up definition boxes, so a reader gets the information in context.  Our blog serves as the perfect example!  Of course, we couldn’t let Dr. Dolin go without contributing to this valuable resource. He kindly agreed to contribute a video definition of the term “parthenote,” and we sincerely hope that the general public (Congress included!) will benefit from his explanation.  In the end, it is exactly this kind of clear communication by the scientific community that will educate the public and inform public policy.

Click here to see Dr. Dolin’s Repropedia definition.  Click here to read the chapter he co-authored in the second Oncofertility book, Oncofertility: Ethical, Legal, Social, and Medical Perspectives, entitled, “Medical Hope, Legal Pitfalls: Potential Legal Issues in the Emerging Field of Oncofertility,” and look for his contribution to the fourth Oncofertility book due out later this year entitled, Oncofertility Communication: Sharing Information and Building Relationships across Disciplines.

Fertility preservation in young cancer patients has come a long way in the last decade, as both patients and the medical community have galvanized to improve the information and reproductive technologies available surrounding oncofertility. In response to the increased likelihood of young men and women losing their fertility due to cancer and its treatment, the American Society of Clinical Oncology (ASCO) published fertility preservation guidelines for clinicians to follow when treating young cancer patients.  In recent news, the American Society for Reproductive Medicine (ASRM) announced that egg freezing would no longer be considered an “experimental” fertility preservation technique, making it easier for cancer patients to receive insurance coverage if they choose egg freezing as their method of fertility preservation. These developments stemmed from substantive evidence that fertility preservation among cancer patients facing fertility impairing treatment is an ethically sound practice, and in a new article entitled, “Lives in the Balance: Women With Cancer and the Right to Fertility Care,” by Clarisa Gracia, MD, and Jacqueline Jeruss, MD, the authors share a reproductive specialist’s view of oncofertility counseling that is important for the practicing oncologist to consider.

First, by discussing fertility preservation with their patients, oncology providers are allowing them to make informed decisions about their reproductive futures. To date, there is no evidence indicating that by discussing oncofertility with patients, it compels them to participate; rather, it demonstrates that they are receiving comprehensive cancer care, which includes survivorship care. In fact, according to the authors, “evidence indicates that patients with cancer who receive counseling about fertility preservation experience less long-term regret than those patients who do not receive counseling, even if the patients choose not to pursue fertility preservation.” Sharing this information with patients may also increase patient confidence in the medical community if they see that they are being treated as a whole person and not just a cancer diagnosis.

Next, an ethical concern raised surrounding oncofertility centers on the disposition of embryos and tissue, specifically as an increasing amount of biologic material is cryopreserved as a result of fertility preservation. Nonetheless, the authors argue that the burden on society will be minimal, since most cryopreserved material comes from healthy, infertile patients actively trying to conceive. They also claim that by striving for advances in fertility preservation options, fewer patients will choose to freeze embryos because they will have other options, reducing the potential ethical issues surrounding embryo ownership.

Finally, the authors address the argument that the allocation of funding and research dedicated to fertility preservation could be better utilized in other medical fields, since it affects such a small percentage of people. Gracia and Jeruss state, “although this may have been a legitimate concern in the past, the research accomplished under the auspices of fertility preservation thus far has furthered the understanding of reproductive physiology, leading to significant breakthroughs in the field of reproductive medicine.” It’s also important to note that these breakthroughs have a ripple affect and can lead to improved fertility options for healthy infertile patients, improved contraception methods, and the conservation efforts of endangered species. Read “Lives in the Balance: Women With Cancer and the Right to Fertility Care,” by Clarisa Gracia, MD, and Jacqueline Jeruss, MD, to learn more about reproductive medicine and the ethical concerns surrounding oncofertility.

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.

By Nadia Johnson, Co-Director of the Oncofertility Saturday Academy

On Saturday, February 18^th, 31 high school girls hailing from six different local Chicago high schools celebrated the culmination of the sixth annual Oncofertility Saturday Academy (OSA) with a family day and graduation event. OSA is the flagship academy of the Women’s Health Science Program, the award-winning science education program that aims to inspire high school girls from traditionally underrepresented backgrounds to pursue careers in science and medicine. OSA consists of a junior academy (JOSA) geared toward laboratory sciences, and a senior academy (SOSA) geared toward clinical sciences. Each academy includes weekly homework assignments, and three on-campus days filled with hands-on laboratory or clinical activities, workshops on such topics as sexual health and applying to medical school, and panel discussions with students or professionals in the field.

During family day, students demonstrate how much they have learned during the five-week program by presenting a capstone project, and rotating through stations that cover some of the academy topics with their families. For example, the SOSA students take their parents’ blood pressure (a skill they learned during the “Doctor for a Day” session) and the JOSA students show their parents how female fertility can be preserved through the use of follicle isolation and preservation in alginate beads (a technique pioneered by the Woodruff and Shea labs, that they learn about during the “Regulation of Ovarian Function” session).

Graduation follows family day, and is a chance for everyone – parents, siblings, and friends of the OSA students, and the over 100 OSA volunteers – to celebrate the accomplishments of the girls who were motivated and dedicated enough to complete homework assignments every week, and get up extra early on Saturdays to attend the on-campus all-day sessions. Each student gives a short speech before accepting her certificate and OSA patch. One student, a senior at Roberto Clemente High School, started her speech with: “I am very honored to be part of this program, this is the first year that it was opened to Chicago Public Schools [so] I am fortunate to be here.” Up until this year, the OSA program was only available to students from the Young Women’s Leadership Charter School. With the help of many teachers and advisors throughout the Chicago Public School system, the program leaders were able to offer the program to other qualified students this year; in addition to Clemente and Young Women’s, OSA student hailed from four other schools: Kenwood Academy, King College Prep, Lindblom Math and Science Academy, and Instituto Health and Science Career Academy.

Many other students commented on their favorite experiences during the academy in their graduation speeches. Several SOSA students remarked that using the da Vinci surgical robot, a $1.5 million system used for minimally invasive gynecologic procedures, during the “Oncofertility & Surgery” session, was their favorite part of OSA. Most of the students thanked their mentors – JOSA girls were partnered with scientist mentors and SOSA girls we paired with first year medical students. The girls were proud of what they had accomplished, and recounted their experiences during the program with a mixture of gratitude and amazement. One student, a senior at Young Women’s Leadership Charter School, concluded her graduation speech with a quote from author Sarah Caldwell: “Learn everything you can, anytime you can, from anyone you can – There will always come a time in your life, when you will be grateful that you did.”

It may appear that the OSA program is designed to teach high school girls about cancer, reproductive biology, and oncofertility, but the program strives to teach so much more than that. It is a program designed to empower young women with knowledge about their own bodies; a program with over 100 university staff, student, and faculty volunteers, who serve as role models and mentors during the program; a program looking to change the face of science and medicine. OSA is a program that takes young women who are willing to learn, and hopes to turn them into the scientists, physicians and leaders of tomorrow.

In the next few weeks, the University of Illinois at Chicago (UIC) will be hosting an exciting new Grand Rounds session with Oncofertility Consortium  member, Dr. Jennifer Hirshfeld-Cytron, as the guest speaker.  “Legal and Ethical Implications of Fertility Preservation: A Case Based Approach,” will take a closer look at the ethics behind oncofertility on February 8th from 12-1pm at UIC.

Dr. Hirshfeld-Cytron will begin by discussing the various fertility preservation options patients have based on their diagnosis and cancer treatment plan. She will also discuss how patient care is handled collaboratively in this burgeoning new field. Much of the success in a multidisciplinary field is based on communication and how effectively teams work together. The Oncofertility Consortium can be seen as a model for team science through its ability to bridge the gap between clinicians, researchers, and the social sciences.

Finally, Dr. Hirshfeld-Cytron will discuss current literature related to the clinical, legal, and ethical implications of fertility preservation strategies in breast cancer, ovarian germ cell cancer and pediatric patient populations.  Read Dr. Hirshfeld-Cytron’s recently published a paper with Drs. Gracia and Woodruff entitled, Nonmalignant Diseases and Treatments Associated with Primary Ovarian Failure: An Expanded Role for Fertility Preservation.  A panel discussion will follow with  clinicians and scholars  from obstetrics, gynecology, pediatrics, law, and hematology-oncology.  For more information or attend this Grand Rounds, contact L. Anderson-Shaw at 312.413.3805.  We hope to see you there!

A recent blog post in the academic journal, Nature, explores a new report by the Nuffield Council on Bioethics (an organization in England that examines and reports on ethical issues in biology and medicine), suggesting that women who donate their unfertilized eggs to research deserve to be compensated. Currently in the United Kingdom, direct compensation for egg donation to research or for infertility treatments is prohibited by law. In the US, while direct compensation for egg donation to infertile couples/individuals varies by state, the only state that is allowed to use public funding to purchase unfertilized eggs for research purposes is New York.

The report argues that since egg donors are not compensated, researchers must rely on altruistic egg donors, which are few and far between. In a letter written to the academic journal Cell Stem Cell, scientists Kevin Eggan and Douglas Melton from Massachusetts discuss the issues they ran into when trying to recruit egg donors for a study they did in 2006-2007. They spent $100,000 on advertising over a 2-year period and although they initially received over 200 respondents, once they found out they would not be compensated, all but one dropped out of the study. Eggan and Melton’s findings suggest that if direct compensation for unfertilized eggs were legalized, more women would participate in egg donation for research purposes.

Ethical concerns and objections have been raised regarding egg donation, one in particular – the exploitation of the poor and disenfranchised. Some scholars and ethicists argue that if egg donation were monetized, it would lead to the comodification of the vulnerable, particularly poor and college-aged women. If a price tag were put on eggs, might a woman discount the burdens of submitting to egg stimulation and retrieval in exchange for the chance to earn $5,000 to $10,000, the going rate for eggs used in infertility treatments?

The flip side to this argument is that labeling this practice exploitative is overprotective and paternalistic. Why should egg donors for research be required to be more altruistic than those giving their eggs for reproductive purposes? Why compensate one for their time, burden, expenses and risks, but not the other?  Also, it is argued that there is a greater social value in donating eggs for research than there is in donating eggs for infertility treatments. Although at the Oncofertility Consortium, our scientists do not do research on donated eggs, they do study donated human ovarian tissue which is essential for advancing clinical practice in fertility preservation.

There are a number of arguments that can be made (and have been) for or against compensatory egg donation, but the fact remains that researchers residing in areas that compensate egg donors have higher participatory rates for their studies. This suggests that with the proper protocols in the place (i.e., a national registry which tracks egg donors limiting the amount of times they can donate, proportional and modest payments to egg donors, etc…), compensating egg donors for research studies may yield higher participation rates.

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Recently there has been a lot of attention brought to the concept of collaboration in academia, specifically in the sciences. Gone are the days (at least in our niche) where disciplines drew a dividing line in the sand – scientists keep to one side of the room, humanities, you go play in the other corner, etc… We understand that there cannot be one without the other and the more we can begin to build a “common language,” the better off we will be as researchers, academics, students and all around everyday people.

One of the many areas that the Oncofertility Consortium has implemented a collaborative paradigm is in the Oncofertility Saturday Academies (OSA) held throughout the country. Young women in high school from diverse backgrounds are engaged in the basic sciences, the social sciences and the humanities. We open up our lab and say, “please come in, we’d like to show you what we’re doing and teach you how to be a better scientist too.”

Some areas we focus on in our Saturday Academy along with lab work are the ethical, social, legal and religious implications of oncofertility research. Dr. Laurie Zoloth, Oncofertility Consortium member and Professor of Medical Humanities and Bioethics at Northwestern University, has been a key component of the Ethics curriculum in OSA over the last 5 years.  According to Dr. Zoloth, “one of the most important things about doing research in reproductive health is thinking about the implications for human societies, human communities and the ethical implications that each individual faces.”

Dr. Zoloth and her students put together a 2-hour course for the young women, introducing them to basic definitions, theory and a case-based method of ethical decision-making in order to demonstrate the complicated and important questions that oncofertility raises. Dr. Zoloth says, “the attempt of our section is to broaden their understanding of the competing and sharply different moral arguments that attend to this research so that they know what the basic definitions, initial conversations, and arguments that have been made to objections raised from religion and moral philosophy are to this kind of research.”

At the Oncofertility Consortium, we believe that it is imperative that the future of science be a collaborative initiative and this is the basis through which we developed our national OSA program 5 years ago. According to Dr. Zoloth, “the complex decisions that are invoked by their [research] have to be apart of their science as well. So we teach [the girls] right along with the science, so they’ll understand how intertwined the work of a scientist is with the concerns of their society.”

Stay tuned for Part 2…

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Cancer and Careers is an organization dedicated to empowering and educating people with cancer to thrive in their workplace by providing expert advice, interactive tools and educational events. Through their comprehensive website, free publications, career coaching, and a series of support groups and educational seminars for employees with cancer and their healthcare providers and coworkers, Cancer and Careers strives to eliminate fear and uncertainty for working people with cancer.  Basically, they’re a fantastic resource for cancer patients who also have a J-O-B.

Well, they’re at it again providing another great resource, this time for healthcare providers, to learn how to address the questions and concerns patients have with regard to working through cancer treatment. On October 20th and again on November 17th, Cancer and Careers will be hosting a free webinar as part of their Educational Series for Healthcare Professionals. The webinars aim to educate providers on the many ways to counsel patients concerned about the complications of working while undergoing cancer treatment.

Re-entering the workforce after illness-related absences is the topic of the October 20^th webinar. The speakers for this program will be Laura Mosiello LCSW-R, Oncology Social Worker and Consultant, and Julie Jansen, Executive and Career Coach and Author, discussing how to make the transition from treatment to trade. On November 17th, Cancer and Careers will tackle legal and insurance issues to consider after diagnosis. Joanna L. Morales, Esq., Director, Cancer Legal Resource Center, will be the speaker for this program making sure you understand the protections provided to cancer patients.

Cancer treatment is expensive and unfortunately for many patients, they don’t have the option to take a paid sabbatical from their jobs.  Someone’s got to pay the bills, and it’s usually the patient so sign-up and learn the right things to say to a patient facing a cancer diagnosis AND a mortgage payment (or student loans, rent, car payment, or any financial responsibility that can’t be sidelined by cancer). Ultimately, giving a patient sound advice and a platform to work from is part of creating a successful treatment plan.  They’ll have concerns; you’ll have some solid advice to offer and a direction to point them in.

To take part in one or both of these informative and free webinars, visit www.cancerandcareers.org. All the information you need is there, including the details on each webinar and how to register.  We hope you can join!

Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!

The goal of oncofertility is to preserve the future fertility of cancer patients and ensure they have reproductive choice after they’ve finished treatment. Not all methods of fertility preservation are considered “established” techniques meaning they are viewed as experimental and must be offered under Institutional Review Board (IRB) protocols (an IRB is a committee that has been designated to approve, monitor, and review biomedical research involving humans in order to protect the rights and welfare of the research subjects).

Oocyte and ovarian tissue cryopreservation are two separate techniques that still need basic and clinical research before they can become established methods of fertility preservation. As a result, research participants are needed for the use of oocytes and ovarian tissue. This creates the question, “who is the most appropriate population to participate in investigational fertility preservation research?”

Populations who have participated in research or who have been suggested as good potential participants are: cancer patients, fertility patients, women who are already donating oocytes for reproduction and healthy research volunteers donating oocytes or ovarian tissue for the sole purpose of research.  Each group comes with their own ethical and theoretical challenges, but for the sake of time, we’ll focus specifically on cancer patients.

In the case of ovarian tissue cryopreservation, researchers rely primarily on cancer patients for ovarian tissue, allowing patients to donate up to 20% of their ovarian tissue for research purposes. According to Michelle McGowan, PhD, in “Participation in Investigational Fertility Preservation Research: A Feminist Research Ethics Approach,” there is a concern that cancer patients who participate in investigational fertility preservations studies “may raise the potential for false hope both for fertility preservation and for cancer treatment.” McGowan argues that even though cancer patients are in a position to benefit from the outcomes of the research, they are also the most vulnerable because they may not understand that a technique is still considered investigational.  This means that there is a possibility they may remain infertile after the procedure.

Nonetheless, while there are certain drawbacks associated with each potential research participant population, cancer patients are the most ideal candidates for research since they are the ones who will benefit from their outcomes the most.  Healthy research participants risk damaging their reproductive health by participating in investigational fertility preservation research whereas a cancer patient’s fertility is already at risk so participation may be the best option for preserving their future fertility.  To learn more about the ethical implications of participation in fertility preservation research, please read, “Participation in Investigational Fertility Preservation Research: A Feminist Research Ethics Approach,” by Michelle McGowan, PhD., in Oncofertility: Ethical, Legal, Social and Medical Perspectives. To learn about joining a research study involving ovarian tissue cryopreservation, contact the national FERTLINE at 866-708-FERT (3378).