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.

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.