Category » Fertility Preservation

Egg Donation: To Pay or Not to Pay?

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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Oncofertility Saturday Academy Pioneers Bioethics Education: Part 1

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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Maggie Daley’s Legacy in Integrative Cancer Care

Maggie Daley (center front) with Mayor Richard M. Daley, Ann Lurie, a Northwestern trustee and philanthropist, and Steve Rosen, M.D., director of the Lurie Cancer Center and of Cancer Programs at Northwestern Memorial Hospital. Photo by Nathan Mandell

The recent passing of Maggie Daley, wife of former Chicago Mayor, Richard M. Daley, was not only a devastating loss for those that knew her personally, but it was also a loss felt deeply in the cancer community. Maggie Daly was diagnosed with Stage 4 breast cancer in 2002 and lived with the incurable disease for 9 years. According to the National Cancer Institute, only 23 percent of all women who develop metastatic breast cancer will survive for more than five years. Mrs. Daley’s long battle with breast cancer is not only a testament to improved treatment options, but also to her healthcare team at Northwestern University and her own body’s ability to stave off the disease.  As a result of her battle with breast cancer, Mrs. Daley became an advocate in the cancer community and a pioneer at Northwestern for treatment programs that focus on the whole person and not just the diagnosis.

In April 2010, the Maggie Daley Center for Women’s Cancer Care was opened at Northwestern University in honor of the former First Lady’s cancer activism and fight with breast cancer.  The Cancer Center sees an average of 1,000 patients a year and offers assistance to not only the patient, but to their families and caregivers as well. The Cancer Center is only one of a few of its kind in the Midwest, taking an integrative approach to cancer treatment. You might say the Cancer Center is a “one-stop shop” for breast and ovarian cancer treatment.

In July, we blogged about the Supportive Oncology Suite at Northwestern University which is part of the Maggie Daley Center for Women’s Cancer Care.  The Supportive Oncology unit houses a multitude of resources for patients including a healing boutique, a massage and acupuncture room, a rehab facility and the supportive oncology healthcare staff including Fertility Preservation Patient Navigator, Kristin Smith.  The unit also provides space to advocacy groups such as Gilda’s Club, to hold support sessions on topics such as family planning post cancer, and family/caregiver support needs.

Maggie Daley not only lent her name to the Cancer Center, but she was also an integral member of the Northwestern community lending her support wherever she could to help raise awareness. She was an inspiration to many and her legacy will live on at Northwestern through the Cancer Center and its innovative approach to comprehensive cancer care for women.

Calling all Cancer Survivors to Evaluate Fertility Fact Sheets

The Oncofertility Consortium and the Hormone Foundation developed fact sheets for men, women, and children to learn about the impact of cancer on their fertility, hormonal management, and fertility options. These fact sheets are available at SaveMyFertility.org, a website which provides patients and providers with information about the reproductive health of cancer patients and survivors. They are offered for men, women, and children and come in both English and Spanish versions.

In an effort to evaluate the usefulness of the fertility preservation fact sheets, a new on-line survey is being conducted by Oncofertility Consortium members, Marla Clayman, PhD., and Sara Barnato, M.D., called,  “Evaluation by patients of the effectiveness of Fact Sheets developed to provide information on fertility preservation options and hormonal health after treatment.” They are evaluating the fact sheets in order to improve and expand upon them. All interested parties need to do is review a fact sheet in English or Spanish, and complete a short survey. Any cancer survivor age 18-44 may participate.

By participating in this new survey, survivors are not only helping themselves to better understand their cancer experiences but also potentially helping future patients. The more feedback oncofertility researchers receive, the better they are able to distinguish the impact these fact sheets have on cancer patients and survivors.

Interested survivors will be asked to read a Save My Fertility fact sheet, consent that they are between 18 and 44 years old, and complete a short survey. This short, on-line study makes it easy for cancer patients and survivors to help advance cancer research.  We are hopeful that we we’ll have at least 100 participants before the New Year, so please take the time to complete the survey before December 31st!

Learn more about this new survey.

 

Oncofertility in the Journal of Adolescent and Young Adult Oncology, Take 2!

I’m excited to be writing about the second issue of the Journal of Adolescent and Young Adult Oncology (JAYAO) , the first cancer journal of it’s kind. This second issue is no small feat – many journals come and go and it takes a dedicated editorial staff and readership to keep the ship afloat. JAYAO has succeeded in putting out interesting and engaging articles that keep me (and everyone else!) coming back for more.

My favorite feature of JAYAO is the last section, “Voices of AYAO,” which shares stories from real patients and survivors, in their own words.  It’s great to hear about AYA cancer from the people who have lived it or are still living through it. It’s especially poignant after sifting through and disseminating the previous journal articles because it reminds you that there is a person behind every statistic and case study.

In this particular issue, a survivor named Jenee shares her story with cancer as both an adolescent and an adult. At 15, she was diagnosed with osteosarcoma and had to have her leg amputated; at 18 she had a relapse of osteosarcoma; and at the age of 38 she was diagnosed with Stage 2B ovarian cancer. She had to have a total hysterectomy followed by six weeks of chemotherapy, sending her body into immediate menopause. “It was easier to overcome the loss of my leg than the loss of my ability to bear children,”  she states.

Jenee goes on to discuss what the loss of her fertility meant to her and how she struggled with the lack of information she received regarding her fertility preservation options. It had immediate consequences and continues to be something she must overcome.  She states, “On a daily basis, I am reminded of my dreams of being a mother in others.” Reading this was heart wrenching, but at the same time her story serves as motivation for young cancer patients, their caregivers, and providers to be more informed about fertility options for cancer patients.

To read the latest issue of JAYAO and see Jenee’s story along with a variety of multidisciplinary content, please click here.

Examining Cancer, Fertility, Sexuality, and Gender – A Study

By Maya M. Harper, M.A.

Every year, 70,000 adolescents and young adults (AYAs) between the ages of 15-40 are diagnosed with cancer. They may experience this diagnosis as a devastating twist of fate that has the potential for derailing their life from its current track. However, with the changes in the oncology field, cancer has become something that is survivable. People can and do have full lives after cancer.

The cancer treatments that can save a person’s life are not without risks. One of these risks is loss or impairment of fertility. There are proactive measures, such as sperm banking and embryo freezing, that a person can take if they have time before treatment. However, they may not find out about these services until it is too late. Even if they are presented with options, they must make decisions when they are already overwhelmed with making decisions about cancer treatment.

It is not uncommon nowadays for people to put off having children or even thinking about children until 30 or later. A cancer diagnosis means that a young adult may have this decision thrust upon them without warning. They may not have a partner. Kids may be the furthest thing from their minds. They have to make the decision not only of whether they want children, but also whether they are willing to have a child with the intervention of medical technology. Heterosexual people, in particular, may have always assumed that they could have children “naturally” someday. They may have much to consider. Fertility issues can also impact the romantic relationships of young adults who have been diagnosed with cancer.

Our new study – An Examination of Cancer Related Fertility Concerns– seeks to find out how people learn about and feel about fertility implications of cancer and cancer treatment. We would also like to find out whether there are differences in the ways that people of various sexual orientations and genders experience these implications. Heterosexual people and LGBT (lesbian, gay, bisexual, and transgender) people may tend to have different views of biological reproduction even prior to a cancer diagnosis.

Therefore, we are recruiting people who were diagnosed with cancer as young adults. We’d like to talk with them about their experiences for 45 minutes to an hour. I am excited to begin this study, because it is something that is truly novel. We are looking at oncofertility through a different lens than has been done before.  We may find interesting and useful results about the roles of sexual orientation and gender with respect to oncofertility. If you are interested in the study, please contact Maya Harper at maya-harper@northwestern.edu

Bright Pink and the Oncofertility Consortium Partner Up for Fertility Preservation

Earlier this year, I blogged about a young woman and volunteer with Bright Pink, Kristin Nelson, who had preventative ovarian removal after she tested positive for BRCA1. BRCA1 and BRCA2 genes are a class of genes otherwise known as tumor suppressors, and a mutation of these genes has been linked to a significantly increased risk for the development of breast and ovarian cancer at an early age. Kristin had enough of a family history of breast and ovarian cancer to want to take measures to protect herself, should she develop cancer as well. Knowing this would impact her fertility, she decided to bank eggs and embryos prior to her oophorectomy.

Luckily, Kristin knew enough about her fertility risks with BRCA1 to pursue fertility preservation prior to her surgery, but not everyone has the same experience. In an attempt to raise awareness and education about fertility preservation in high-risk young women, Bright Pink has partnered up with the Oncofertility Consortium to present, Fertility Preservation for High-Risk Young Women National Teleconference on November 15th at 8:00EST. The teleconference seeks to help high-risk young women understand the basics of fertility concerns, their options for fertility perseveration and parenthood, and provide valuable resources that are available. Leading the information session will be Oncofertility Consortium Director, Teresa K Woodruff, along with Kristin Nelson and Melissa Synder from Bright Pink. To learn more about how you can participate in this teleconference or to register, please visit www.bebrightpink.org.

 

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 History of Reproduction and Fertility Preservation

I recently sat in on a new fall course offering at Northwestern University, the History of Reproduction, taught by Sarah Rodriguez, PhD. Over the last few years, Sarah has contributed her historical expertise to the Oncofertility Consortium, ensuring that the Consortium receives a healthy dose of the humanities. This past summer, Sarah and I shared an office space and discovered shortly thereafter, a similar background in women’s history, and randomly, a love of Iowa.  How could I not pass up an opportunity to get my history fix in and catch up with Sarah?  So off I went…

The seminar was just the right size to foster dynamic yet intimate discussion and the students hailed from a variety of academic disciplines, including Woodruff Lab member, Robin Skory, who is pursing an MD with a PhD in Reproductive Sciences. This would definitely be my first experience sharing a history course with a student of her background, but then again I work in an organization that fosters interdisciplinary collaboration. I like that this is becoming the new norm in my life!

The study of reproduction is a relatively new specialty, and developed in large part from a focus on body politics during second wave feminism in the 1970s.  It was also in the 70s, that the first IVF baby was born, making “infertility,” more of a chronic condition as opposed to barrenness or sterility. As new technological advances made it possible for increasing numbers of infertile couples to conceive biological children, more people came forward to seek assistance with reproduction.

As more advances are made in the Reproductive Sciences, we’re seeing the paradigm shift from individuals who are infertile being treated to people being treated that may become infertile due to cancer or it’s treatment.  Infertility has also become a place where people with seemingly competing interests, converge and engage with one another. In the 70s, feminism denounced reproductive techniques claiming it reinforced certain stereotypes of women as only mothers and made them victims of patriarchal medical “advances.” Today, however, we see another side of feminist thought arguing that ART has the ability to empower women because it has the potential to enable them to take control of their reproductive future. It’s based in the same ideals, but the discourse has changed.

How did your parents view reproduction and fertility? What do you think about it today and where do you think we will we be in 25 years? How has your experience shaped how you view fertility and reproduction? These are the kinds of questions that are important to discuss and explore because how we understand our history, shapes how we see our present and ultimately guides how we map out our future.

 

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!

 

 

Non-Surgical Interventions for Female Fertility Preservation

Baby rhesus monkey born during Dr. Zelinski's study

Over the past decade, women who are about to undergo sterilizing medical treatments have seen a dramatic increase in the number and success rates of methods to preserve their fertility. Women can now cryopreserve their ovarian tissue, eggs, or embryos prior to chemotherapy or radiation. However, all non-experimental forms of fertility preservation currently require surgery. What if women could retain the ability to have biological children without going under the knife? That is what oncofertility researcher Mary Zelinski, PhD, from the Oregon National Primate Research Center , and Jonathan Tilly, Vincent Center for Reproductive Biology, Vincent Department of Obstetrics and Gynecology, Massachusetts General Hospital, examined in a recent paper.

The article is based on the knowledge that cancer therapies cause programmed cell death in a woman’s immature eggs, called oocytes. Dr. Tilly discovered that one factor, sphingosine-1-phosphate (but we’ll call it S1P) prevents this cell death from occurring in mice. However, just because a fertility preservation treatment works in mice doesn’t mean it will work in humans, so Dr. Zelinski took the next step and examined whether S1P and a similarly acting compound, FTY720, also prevents fertility loss in rhesus monkeys.  These non-human primates are genetically very close to humans, have similar reproductive organs, and may indicate whether the treatment may also work in humans.

Dr. Zelinski implanted small pumps to continuously deliver S1P or FTY720 directly to the ovaries of the monkeys for one week prior to exposing the ovaries to X-irradiation. She then examined the resumption of menstrual cycles and ovarian health of monkeys treated with or without S1P. Monkeys that did not receive the S1P either never had another menstrual cycle during the study or only had one after the radiation, indicating damage to the ovaries. However, of the monkeys treated with S1P, almost all resumed their cycles within 6 months. FTY720 had an even greater protective effect: all monkeys resumed menstrual cycles within 3 months. In addition, the follicles within the treated monkeys were healthier than those who did not receive SP1 or FTY720.

As FTY720 had the most protective effects on monkey ovaries, Dr. Zelinski next examined whether these females could produce biological offspring after radiation treatment. Excitingly, all females successfully got pregnant and carried their health offspring to term. In addition, adult human ovarian cortical tissues xenografted (or transplanted between two species) into mice also exhibited a reduction in radiation-induced primordial oocyte depletion when preexposed to S1P. This work indicates that scientists are getting closer to preserving fertility and hormonal health for young women with cancer or other diseases requiring radiation treatments. Read the article or watch a news clip on this research.

 

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!

Fertility Preservation Goes Italian!

At the Oncofertility Consortium, we are always trying to make sure that we have the most up-to-date and accessible information regarding fertility preservation, particularly for patients. Whether we are partnering with advocacy groups to let patients know about support services available to them or we are sharing the latest research being done in fertility preservation, we want to make sure that we reach as many people as we can. One way that we work to do this is by making sure fertility preservation information shared on our partner websites is accessible to non-English speakers.

Currently, both of our sister sites, www.SaveMyFertility.org and www.MyOncofertility.org, have Spanish translations. Spanish seemed like the logical next step to creating a larger readership and expanding our reach within the oncofertility and patient community. Now we’re on to phase 2: Italian via Dormant Buds Association and website!!

Dormant Buds is an association founded based on the ideas of a gynecologist who works at a public hospital and specializes in fertility.  After contact with dozens of patients who, because of aggressive therapies, lost their ability to have children, the doctor, along with the help of a group of volunteers, designed a reference website, www.gemmedormienti.it. In the Section “Domande,” are Italian translations of the MyOncofertility.org animations. Take a look at this new website to see the latest translation!

 

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!

 

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