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Tuesday, September 03, 2013

Kids, Cancer, and Fertility: What's the Doctor's Duty?

       There is a story in today’s Wall Street Journal about the advances in fertility preservation for pediatric cancer survivors. The article provides an introduction to the problems facing children who must undergo cancer or other therapies that can render them infertile in the future.  It discusses a Pennsylvania teenager who was diagnosed with leukemia two years ago.   Her doctor advised her that the treatment she needed to help cure her disease could make her infertile, and he advised her that she could undergo a procedure to remove and freeze her ovarian tissue, as a part of an experimental research study that could help preserve her fertility.  The article does not mention whether her physician was part of that research protocol, but it is not uncommon for oncologists to recruit patients for similar studies.  As long as her physician disclosed any potential conflicts of interest and went through a proper informed consent (which I discuss more in the article I refer to below), I do not necessarily see a problem with this.  However, I wonder whether oncologists- who are not part of any similar experimental protocol - would be as likely to disclose the potential fertility preservation options available to patients.  Would they only discuss these options with patients who they know can afford such preservation techniques-either through insurance or their own (or their parents') bank accounts?   The field of fertility preservation is changing rapidly, with new advances each week.   When dealing with cancer patients who are children, physicians must realize that those who survive their diagnoses (which thankfully is a much higher percentage than in years past) will live long enough so that fertility preservation techniques will go from experimental to routine.   Just in the last couple of weeks, there have been reports of a pregnancy occuring after ovarian tissue grafting outside the body,  and articles about the importance of post cancer fertility to patients, here and here.    In a recent article I wrote,  Oncofertility and Reproductive Justice,which will be published in the Harvard Journal on Racial and Ethnic Justice later in 2014 (an early draft of which can be found on SSRN), I begin to explore the issue of oncofertility and what duty a physician has to disclose fertility options to all patients--regardless of race, insurance status, or ability to pay.  

    Oncofertility refers to the process of preserving the fertility of women (and men) who need to undergo cancer treatments that may cause reduced fertility or sterility.  This process typically involves counseling a patient (or in the case of a young child, the patient's parents) about the potential fertility consequences of their treatment, and then if a patient (or parent) so chooses (and can afford it) freezing the eggs, sperm, ovaries, or gonadal tissue to potentially use later using in vitro fertilization or using a gestational surrogate. As cancer survival rates improve, the ability to bear children after therapy is increasingly a concern for many patients.  Some patients may choose their cancer therapy based on the risk of fertility loss rather than on its effectiveness to cure the cancer.   Unfortunately, a patient’s race and insurance status often determines if and when they are told about the fertility consequences of their treatment.  Those without insurance are often in dire straits after a cancer diagnosis, so physicians may not inform them about fertility preservation due to the high costs. Only 2 to 4% of women eligible for fertility preservation actually undergo the process. As the Wall Street Journal article mentions, many options within the field of oncofertility are still experimental –especially the options for children not yet of reproductive age.  If a girl is past the stage of puberty, her eggs can be banked and frozen for her future use via in vitro fertilization. The American Society of Reproductive Medicine recently determined that such egg freezing was no longer an experimental procedure. Egg freezing and sperm freezing, rather than embryo freezing, are good options for postpubertal cancer patients or other patients unable or not wishing to cryopreserve embryos. Other types of fertility preservation, such as ovarian tissue freezing, have resulted in very few live births.  There are no long- or even short-term studies on the viability of the technology as of now, so experimental studies are important in developing this field.  The predicted prognosis of the patient will often determine whether fertility preservation is a viable option.  Because African Americans often have their illness detected at a later stage than other populations, their prognosis is often worse.  Other limitations to the use of this technology include age, cost, and how available it is in the patient’s area. One recent study showed that females, Blacks, and the uninsured were all much less likely to be told about fertility preservation during the course of their cancer therapy.  In the study, Black males, uninsured males, and females with government insurance were at the highest risk for not having discussions about fertility preservation.  Not surprisingly, uninsured status was a predictor for not making preservation arrangements prior to starting cancer treatment within all of the groups.  An additional survey-based investigation suggests “that a lack of money is the biggest barrier preventing women with cancer who have received counseling on fertility preservation from following through with it.”   Ninety percent of women surveyed who had received counseled reported at the time for decision-making that cost and lack of insurance coverage were their reasons for not utilizing fertility preservation technologies.  Men are generally counseled in fertility preservation less frequently than women, with only 30% of clinics surveyed even offering counseling to male patients.

       Obviously, an oncologist's primary role is to treat the cancer, but should oncologists also discuss fertility preservation as a routine part of cancer therapy?  Many oncologists are not following fertility preservation guidelines and are unaware of current guidelines regarding fertility preservation for cancer patients, according to the results of a survey presented at the American Society of Clinical Oncology (“ASCO”) Annual Meeting.   In 2006, ASCO issued guidelines regarding fertility preservation, which recommended that oncologists "address the possibility of infertility with patients treated during their reproductive years and be prepared to discuss possible fertility preservation options or refer appropriate and interested patients to reproductive specialists." However, only 38% of the surveyed physicians stated that they were aware of ASCO's guidelines regarding infertility.   No states currently have laws requiring insurance coverage for oncofertility.  Therefore, even if a patient has insurance, fertility preservation may not be covered.  Should a physician have to disclose these options if he or she knows there is no way a family can afford to take advantage of fertility preservation techniques?   It's a difficult question that deserves some more attention in the legal and bioethical literature.

Posted by Seema Mohapatra on September 3, 2013 at 12:00 AM | Permalink

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I can't imagine a doc worrying about kid's reproductive rights as long as little atheist babies are subjected to baptism and having their sex organs mutilated by the very same docs.

Posted by: Jimbino | Sep 6, 2013 12:43:12 PM

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