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Science, Policy, and the Dickey-Wicker Amendment (Part 2)

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 1st 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.

Oncofertility Academy Student Receives Top Honors

Back in February, we blogged about one of our sister programs for the Oncofertility Saturday Academy (OSA) called, the Pennsylvania Academy for Reproductive Sciences otherwise known as the PARS program. Similar to OSA, the PARS program was started to teach high school girls about the research, clinical care and bioethics of fertility and cancer.  The PARS program was so successful that one of their former students, Emtithal Mahmoud, won the Pennsylvania state-wide science fair for her oncofertility research.  We contacted Emtithal (Emi) to learn more about her experience with the PARS program and below is what she had to say:

Q: Why did you initially apply to participate in PARS?

A: I have been interested in biology and all things related since seventh grade. I just love learning about life and its many mechanisms. Also, since I want to become an MD/PhD, I thought this would be a perfect opportunity to broaden my knowledge. After all, you can only learn so much in school.

Q: What did you learn from PARS? Do you think it’s a good opportunity for young women? Why?

A: I learned the fundamentals of the female reproductive system. Additionally, I was introduced to some pressing modern issues and learned how the material PARS covered could be applied to solve them. Lastly, I got a glimpse of the teamwork it takes to move the field forward. I think this is a wonderful opportunity for young women because the experience it provides is useful both academically and in every day life.

Q: Why did you decide to do a research project with us?

A: The experience I had with PARS was so wonderful that I found myself completely fascinated by the topic of reproduction. I decided to continue working with PARS in the hopes of prolonging the experience by using what I learned along with new information to go more in depth.

Q:  How did you decide on your research topic? How did you conduct the research? What did you find?

A: After learning about oncofertility at PARS and the negative effect of chemo on fertility, I really wanted to know more so I spoke with several PARS professors and some more research. I decided to research the effects of environmentally relevant doses of arsenic on the early stages of the reproductive system (follicular development, oocyte maturation, and early embryo development to the blastocyst stage). I conducted my research by doing an invitro study using a mouse model. I found that exposure at the levels I tested severely compromise follicular development and the nuclear competency of the oocyte. I also found that these doses arrest embryonic development to the blastocyst stage in a dose response fashion.

Q:  What happened with the science fair? What were your results?

A: I won second place in the local fair and first place in the regional fair.

Q: Did you feel adequately prepared to compete in the science fair based on your research efforts with our team?

A: Definitely!

Q:  What advice would you give to young women looking to become involved in science either in college or as a career?

A: Begin by seeking opportunities like these to broaden your knowledge and explore the different career options. If you are interested, learn more by asking professionals to clarify anything you don’t understand. Also, doing a research project is a fantastic way to enhance your learning experience.

It’s important to note that the success of the Oncofertility Academy is due in large part to the amazing teachers who work with these young women. One teacher in particular, Ericka Senegar-Mitchell, PhD runs an Oncofertility Academy called Be Wise in San Diego in affliation with UCSD. Among her many accomplishments, Dr. Senegar-Mitchell was recently named as a finalist for the California Teacher of the Year. We’re so proud to have such a prolific group of people committed to the field of oncofertility!

National Growth of Oncofertility Informal Science Education

The 2011 senior class of the Oncofertility Saturday Academy

This past Saturday, 32 students from the near south side of Chicago were not hanging out at home or at the mall. Instead these juniors and seniors in high school were attending the fifth annual Oncofertility Saturday Academy at Northwestern University.  For the next four weeks, these young women will be exposed to different aspects of oncofertility in order to increase their science literacy and instill in them a passion for science.

On Saturday, the junior students, who will spend the month focusing on oncofertility research, performed experiments using fertility preservation techniques in Teresa Woodruff’s laboratory. The senior students began their clinical oncofertility experience learning how to give a pelvic exam and practicing on the same plastic models that medical students use. The Oncofertility Saturday Academy, part of the Women’s Health Science Program, also exposes these students, from Young Women’s Leadership Charter School on the near south side of Chicago, to careers in science and medicine. This Saturday, the juniors were paired with Physician Assistant trainees while the seniors learned from medical students. The high school students also listened as Tiffany, a cancer survivor, and her husband discussed their experiences fighting cancer and preserving their ability to have biological children.

The Oncofertility Consortium also provides similar informal education programs in San Diego, Oregon, and, most recently, Philadelphia. This past summer, investigators and clinicians from the University of Pennsylvania started the Pennsylvania Academy for Reproductive Sciences (PARS) to teach 10 high school girls about the research, clinical care, and the bioethics of fertility and cancer.

The Philadelphia group held another session this fall and are preparing for a spring academy, which begins on March 5th. The young women in this program range from freshman to seniors and attend schools throughout the greater Philadelphia region. The girls beginning the PARS program in March will have the opportunity to perform in vitro fertilization of mice eggs, see a working operating room, and even perform a transabdominal obstetrical exam on one of the pregnant facilitators of the program! Over the next few weeks we will continue to update our readers on the national activities of the Oncofertility Saturday Academy.

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