Parthenogenesis and Policy in Science Magazine

An image of a parthenote, courtesy of Alison Kim, PhD

An interdisciplinary team from the Oncofertility Consortium published a paper today in the journal Science on the intersection of politics and scientific research. The group, made up of a historian, a bioethicist, and scientists from the Oncofertility Consortium highlighted how a flawed U.S. law restricts research in fertility preservation for cancer patients. Specifically, the law prevents federal funding to pay for research that uses parthenotes in research.

Parthenotes are a group of cells derived from an egg that begins dividing without fertilization from sperm. The short policy article in Science describes the biology of parthenotes and explains their potential broad benefits for research in many aspects of cancer, fertility, and oncofertility. As we discussed in a previous blog post, parthenogenesis could be used for researchers to identify eggs that are healthy enough to begin the early stages of cell division. This activation would allow scientists to identify methods to successfully mature eggs outside of a woman’s body that are ready to be fertilized. This could help oncofertilty patients who have lost the ability to have biological children due to cancer and its treatment.

Tingen et al. also describe the history of the law-in-question, the Dickey-Wicker Amendment, which prevents the production, use, or destruction of embryos or parthenotes with federal money. In 1993, the U.S. Congress and President Bill Clinton gave the National Institutes of Health (NIH) the authority to provide financial support for human embryo research. Before funding such research, the NIH established a group of 19 experts in science, medicine, ethics, law, and social science, called the Human Embryo Research Panel to determine the moral and ethical issues raised by this research.

The panel found that the creation of parthenotes for research purposes was ethically acceptable while embryo research warranted additional review. As such President Clinton directed the NIH to prevent funding for most embryo research but allowed them to provide money for studies on parthenotes. A few years later the Dickey-Wicker Amendment was drafted to restrict all embryo research. Looking at prior legislation, these non-scientists included the term “parthenote” into the bill.

Recent legal rulings have brought embryo research and the Dickey-Wicker Amendment into the spotlight again. Rather than continue this mistake in the law, the authors in the Science article call for the removal of parthenotes from the Dickey-Wicker Amendment. They provide a more detailed explanation of their position in an upcoming article in the American Journal of Bioethics.

Learning about Breast Reconstruction

Did you know that some breast cancer patients do not receive information about breast reconstruction options at the time of diagnosis?  The Cancer Support Community (CSC) issued a survey to 840 women with breast cancer from July 14 – August 20, 2010; of these women, 762 were eligible for breast reconstruction and 43 percent reported that they did not receive information about breast reconstruction options during discussions about their treatment plans at the time of diagnosis.  To be frank, I was very surprised by this outcome, especially with the amount of breast augmentation among celebrities and high profiled people that is frequently photographed and published in the mass media.  Why are cancer patients at a disadvantage?  What is going on?

According to the Cancer Support Community, the results unveil the gap in breast cancer treatment resources and the need for a trusted, validated, and widely available single resource for patients to use in order to make educated decisions about their treatment plans.  Consequently, the CSC will be launching a new national program, Frankly Speaking about Cancer: Spotlight on Breast Reconstruction, which presents comprehensive information on breast reconstruction.  The program was developed with the mission to promote patient empowerment using both in-person and web-based resources.  Frankly Speaking about Cancer: Spotlight on Breast Reconstruction consists of three components: 1) 75 community-based patient education workshops that will be offered for free throughout the U.S. in 2011 and 2012; 2) a comprehensive patient education resource guide; and 3) multimedia education tools and online resources to provide women with breast cancer a dynamic forum to discuss breast reconstruction issues.  This effort will fill the gap and address the need for breast reconstruction information for patients to utilize at the time of their diagnosis.

Similarly, the Oncofertility Consortium provides resources to empower both health care providers and cancer patients to address fertility preservation concerns at the time of diagnosis.  Through our own experience, we have learned that even though cancer patients may decide not to pursue any fertility preservation methods, they appreciate and value being presented with the options that are available to them.  The opportunity to make informed choices at the time of cancer diagnosis is a right that the Oncofertility Consortium and Cancer Support Community work to protect and strengthen.

Cancer Survivorship 101 Conference Covers Oncofertility

This upcoming November 12, 2010, the Northwestern University Feinberg School of Medicine and the STAR Program (Survivors Taking Action & Responsibility) are hosting a regional conference in downtown Chicago, IL. The event, titled Cancer Survivorship 101: Educating Primary Care Providers in their Treatment of Cancer Survivors will teach health care professionals how to better serve cancer survivors.

This event at the new Prentice Women’s Hospital (250 E. Superior Street, Chicago, IL) will highlight how physicians, internists, nurses, social workers and other caregivers can maintain the health of both adult and childhood survivors of cancer. Experts from around the country are presenting current knowledge on post-cancer health risks, racial disparities in cancer survival, and the psychosocial care of cancer survivors.

A member of the Oncofertility Consortium will also present her work with cancer survivors. Dr. Clarisa Gracia, an Assistant Professor of Obstetrics and Gynecology at the University of Pennsylvania, is an expert in reproduction and infertility in cancer survivors. Given the results of cancer treatment on fertility, do survivors have to worry about contraception? What other post-cancer effects do cancer survivors face that may impact their reproductive health? Dr. Gracia will present answers to questions such as these in an afternoon seminar.

The event will also allow like-minded health care professional discuss their experiences with cancer survivors and examine the different models of cancer survivorship follow-up care. Physicians who attend can earn continuing medical education credits for attending the daylong conference. To register for this event, click here.

Run for Prentice’s 1st Chicago Marathon

On 10-10-10, a record number of runners started the annual Bank of America Chicago marathon across the neighborhoods of the city.  For the Oncofertility Consortium’s own Clinical Research Coordinator, Shauna Gardino, it was a warm start to her 10th marathon.  Despite the less than ideal weather conditions, Shauna completed the race with an impressive finish time to complete her milestone marathon.  For Shauna, the race was meaningful not only because of the coincidental play on numbers, but also because she ran as a member of the Run for Prentice 2010 fundraising team.

According to the team’s website, the money raised will be directed at “clinical, research, and education initiatives that support women’s health at all stages of life,” which also includes support for programs such as Gynecologic Oncology at Northwestern Memorial Hospital.  Because of Shauna’s work with the Oncofertility Consortium, whose mission aligns with that of Friends of Prentice, she felt especially inclined to support the Run for Prentice team in their inaugural year.  Their goal was to raise $150,000; Shauna exceeded her personal fundraising goal through the generous support of family and friends and the team itself raised a total of $144,571.  The team’s fundraising efforts will continue until November 15, 2010, so there is still time to contribute if you have not yet had the chance.  For any questions, please contact Kristin Clark at 312-926-4530, krclark@nmh.org.

How do you show your support and raise awareness for women’s health?  Do you know anyone who ran the marathon with the Run for Prentice 2010 team or another women’s health-related team?

Journal of Clinical Oncology Covers Adolescent and Young Adult (AYA) Cancer

On October 12, 2010 a special issue of the Journal of Clinical Oncology will highlight the importance of adolescent and young adult (AYA) cancer awareness. In an overview on AYA oncology, David M. Thomas, et al., emphasizes the “clear clinical need” for a new subfield of oncology. Issues that are important to AYA cancer patients are relevant to many clinicians, from oncologists (pediatric, medical, and radiation specialists) to nurses, psychologists, and reproductive endocrinologists.

In addition to the fertility issues that we often discuss on this blog, AYA patients need tailored approaches to care depending on their age. Unfortunately, there is a lack of data on the side effects of specific chemotherapy and radiation treatments on AYA patients. The quality of survivorship is also important to the AYA population and requires clinicians to have a broad understanding of the many life changes that patients may go through during or after treatment including attending college, entering the workforce, or starting a family.

A position statement in the same issue calls for increased training for health professionals that work with AYA populations. Specifically the authors recommend that professionals have AYA-specific clinical knowledge and can deliver appropriate care to their patients. In the case of oncofertility, this would require the clinical community to know all of the currently available fertility preservation options and deliver care by referring them to appropriate reproductive specialists. The Oncofertility Consortium tries to facilitate this process through the FERTLINE that helps providers and patients understand the fertility preservation options available in their area.

The Young Adult Alliance was started to mobilize the many organizations that care about AYA issues and holds an annual conference every year. This November, members of the Oncofertility Consortium will attend the conference and present their knowledge on navigating oncofertility patients and the different perspectives in oncofertility. We look forward to meeting with the AYA community and hearing their insights on the issues!

Watching Football and Thinking about Oncofertility

I’m a huge football fan, so most Sundays in the fall and winter are spent watching games.  Starting this past Sunday and running until the end of the month, all of the NFL teams will accent their uniforms and gear with pink, in support of the American Cancer Society’s breast cancer awareness campaign.  During one of the games, my friend commented, “I’m all about pink and bringing attention to a cause, but is this really what my donation to cancer research is paying for?”  Her question really got me thinking about how awareness campaigns are run and whether or not they fulfill their mission improve health outcomes.

Coincidentally, the Los Angeles Times published an article questioning the benefits of awareness campaigns.  The author highlighted a few reasons why awareness campaigns, specifically breast cancer awareness campaigns, may not have the impact they promise: little improvement in breast cancer mortality rates; lack of alignment of the goals of the campaign with developments in breast cancer research, which may lead to women being over-diagnosed and undergoing unnecessary treatments; and conflict of interest between purpose of the campaign (i.e. increase and improve early detection of breast cancer) and sponsorship by pharmaceutical companies that provide breast cancer drugs.  Her compelling arguments made me think about whether the Oncofertility Consortium’s own awareness efforts have similar characteristics and what could be done to strengthen its campaign.

The Oncofertility Consortium raises awareness on all different fronts by approaching solutions to fertility impairment from cancer treatment in partnership with basic scientists, clinicians, and social scientists and humanists.  Basic scientists involved in fertility preservation research use the newest, groundbreaking materials and techniques to increase cancer patients’ likelihood of having children after fertility-threatening cancer treatment.  Clinically speaking, the impact of the Oncofertility Consortium occurs at the time of a young patient’s cancer diagnosis when information is exchanged about what fertility preservation options are available.  Whether or not the patient decides to pursue fertility preservation, the critical element is that the patient, regardless of prognosis, socioeconomic status, and race, is made aware that her cancer treatment may affect her fertility and that now is the opportunity to act.  Consortium social scientists and humanists examine case studies and conduct “thought experiments” to reflect on the historical, ethical, and social implications of fertility preservation.  In all, the Oncofertility Consortium’s education and dissemination efforts avoid the potential pitfalls of awareness campaigns by staying on top of the science, respecting the patient’s wishes regarding her fertility, and examining the societal and ethical conflicts that surround fertility preservation.

Of course, the Consortium’s awareness campaign is a dynamic work in constant progress and growth.  The Oncofertility Consortium strives to engage trainees and fellows in the basic, clinical, and social sciences and humanities to become the next generation of fertility preservation experts.  Outreach to cancer support and advocacy communities continues to develop in order to spread the message of the Oncofertility Consortium through existing local and nationwide networks.  Resources such as publications, patient and provider testimonies, training videos, and conference presentations are regularly updated and added on the Oncofertility Consortium and MyOncofertility.org websites.  Through consistent vigilance and self-evaluation, the Oncofertility Consortium ensures that its awareness campaign remains effective and valuable to cancer patients and their families.

Cancer Rights Conference in Los Angeles This Friday

This Friday, October 8, the Cancer Legal Resource Center will host a conference in Los Angeles on the many complex legal issues surrounding cancer. This all-day, free conference will cover a variety of quickly evolving issues, such as health care reform and local cancer community resources. The conference hopes to attract professionals throughout the cancer community including nurses, clinical social workers, marriage and family therapists, and attorneys, who can all gain continuing education units for attending the conference.

We first covered the Cancer Rights Conference this past June when it was held in Chicago, IL. The upcoming conference is bringing back some popular sessions, including Estate Planning and Life Insurance, and adding new talks. One new session will cover the rights of young people with cancer. Hosted by education attorney Andrea Oxman from the Disability Rights Legal Center, the CLRC’s umbrella organization, the seminar will discuss cancer issues for children and young adults, such as education and insurance coverage.

Monica Fawzy, a staff attorney at the Cancer Legal Resource center recently spoke with us about the conference. According to Fawzy, a Genetics and the Law session will cover, “The role that genetics plays into the law and coping with cancer.” The session will discuss the Genetic Information and Nondiscrimination Act and some of the decisions that young adults have to make if they are going to get tested for cancer susceptibility genes. “As we’ve seen, the law is very slow to catch up with this new technology,” said Fawzy, and the conference will discuss issues that young people should think about going forward.

A session on Employment will also clarify the protections for cancer patients in work environments. According to Fawzy, the panel will be comprised of  “a physician, an attorney, and an expert from the advocacy group Cancer and Careers,” who will discuss the federal and local laws that allow people to retain benefits, take medical leave, and avoid discrimination in the workplace.

The conference will also explain some recent changes in health care reform. As the health care laws are currently in a state of flux, we are pleased that the Cancer Legal Resource Center has plans to put on another set of conferences during 2011 in Chicago, IL; Washington, DC; and Ann Arbor, MI. For those based on the West Coast, Friday’s conference at the Ronald Regan UCLA Medical Center in LA is an opportunity to learn about cancer rights from the experts.

Publication of New Oncofertility Book

The Oncofertility Consortium finds new ways to prevent life-saving cancer treatments from destroying fertility through multiple avenues of scientific research. But this emerging field does not live in isolation and the consortium addresses larger issues in oncofertility through discussions with communicators, economists, historians, and religious and legal scholars. A compilation of these conversations results in a new book that is now available for sale. The book, entitled “Oncofertility: Ethical, Legal, Social, and Medical Perspectives,” can be found at Amazon.com. Over the next few weeks, we will give you a taste of some of the interesting ramifications in this cutting-edge field through our blog…so stay tuned!

Inventor of In Vitro Fertilization Wins Nobel Prize

The Nobel Prize committee announced today that the 2010 Nobel Prize in Physiology or Medicine is awarded to Dr. Robert Edwards for his role in developing human in vitro fertilization (IVF).

In the 1950s, a young Robert Edwards earned his Ph.D. by performing research on the reproductive physiology of mice. After graduation, he became increasingly interested in helping patients with infertility. According to a 2001 commentary in Nature Medicine, he lamented, “What could I do for patients? Literally nothing until human eggs were fertilized in vitro.”

Over the next thirty years, Dr. Edwards studied the maturation of immature eggs, called ooytes, and determined that different hormones could help women mature multiple eggs at one time. With the help of gynecologist, Patrick Steptoe, the world expert laparoscopy, a procedure that can be used to remove oocytes, the team combined their expertise to help infertile patients. In late 1977, the collaborators removed an egg from Lesley Brown, fertilized it in a petri dish, and successfully transferred the resulting eight-cell embryo back to Brown in a procedure now commonly called IVF.  On July 25, 1978 Louise Brown was born to much fanfare and labeled the first “test-tube” baby.

Since that time more than 4 million children have been born from IVF and it is used in about 3 percent of all live births in developed countries. IVF is also frequently used as a method for fertility preservation for cancer patients. In such cases, women who can, delay cancer treatment to mature multiple eggs and then have them removed and fertilized.

In contrast to Lesley Brown, fertility preservation patients can now cryopreserve, or freeze, their embryos for transfer after cancer remission. As many cancer patients cannot delay treatment, the Oncofertility Consortium developed ovarian tissue cryopreservation (OTC) to help women preserve their fertility without a delay in chemotherapy or radiation. We continue to develop additional fertility preservation techniques so all cancer patients are able to have children after cancer. We hope that these efforts will someday have the impact for cancer survivors that Dr. Edwards’ research had for infertile women.

Breast Cancer & Oncofertility

October is Breast Cancer Awareness Month!

This week, The Washington Post shed light on a section of the health care reform law that directly impacts breast cancer research in young women in terms of desired outcomes and available funding.  Between 2010 and 2014, the law allocates 9 million dollars annually to the National Institutes of Health for disbursement to breast cancer research and advocacy groups to develop new mechanisms that will allow breast cancer to be detected earlier and one day prevented.

In 2010, the American Cancer Society reports that there have been 207,090 new cases of invasive breast cancer in women in the U.S; of the women who get breast cancer every year, approximately 10 percent are women who are younger than 45.  As early detection tools are currently being developed and tested, especially with the new funds from the health care reform law, this number is sure to increase.  For these young women, making it through their cancer therapy and surviving the disease is a top priority.  But what are the ramifications of an aggressive cancer and an equally aggressive treatment plan on a young women’s fertility?

Depending on her course of treatment, a breast cancer patient who is of reproductive age may be at risk for losing her fertility.  The Oncofertility Consortium works to anticipate potential fertility issues at the time of cancer diagnosis, so patients have as much time as possible to learn about and discuss options to preserve fertility.  In 2010, approximately 23% of the encounters between the Oncofertility Consortium’s patient navigators and patients seeking information and options have been women diagnosed with breast cancer.  Mature technologies, such as embryo freezing, and experimental techniques, such as egg freezing and ovarian tissue cryopreservation, are methods through which breast cancer patients can preserve their fertility.  While in some cases, patients decide not to pursue fertility preservation options, the Oncofertility Consortium, patient navigators who answer the national hotline (866-708-FERT), and MyOncofertility.org are there to offer options and to connect patients with a local fertility preservation program.

The need for fertility preservation to be incorporated as a standard in cancer care will increase as detection methods improve.  Perhaps another approach in using the new research funds would be to support projects that investigate cancer prevention, detection, and fertility preservation.

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