Eggsploitation’s Bad Science

In Thursday’s post, I mentioned the independent film Eggsploitation, which I criticized for its “junk science.” The filmmaker, Jennifer Lahl, asked me to clarify what I meant by that criticism. Although I’ve written about this film before, because this is a new blog with some new readers, I’m going to respond to her publicly. I hope my response also clarifies my approach to reproductive ethics.

Eggsploitation’s overall message is that the combination of infertile patients desperate for viable eggs and young women desperate for money leads to an exploitative system in which no one is looking out for egg donors’ well-being. It argues that donors, who must go through the same medical procedures as IVF patients do (daily hormone injections and surgical retrieval of eggs), are participating in a potentially risky procedure without truly informed consent.

I have no argument with this message. I have written often about how the lack of oversight of the fertility industry, combined with market pressures, seriously compromise the ability of those involved (both patients and donors) to make thoughtful, deliberate, and informed decisions about the medical, emotional, financial, and ethical dimensions of reproductive technology.

My complaint with this film is not with its message, but with its method. It relies almost solely on anecdote to illustrate the possible risks of egg donation, focusing on the admittedly compelling stories of egg donors who had serious medical complications after donation.

I love anecdote. I put a lot of stock in people’s stories of dealing with infertility, genetic disorders, troubling prenatal diagnoses, etc. So my problem with Eggsploitation is not that it puts stories front and center. (In fact, one of the things I struggle to understand is why several of this filmmaker’s colleagues and supporters have been so vocal in criticizing my “narrative,” or story-based approach to reproductive ethics, while also praising a film that is almost all story. Go figure.)

My problem with the film is that it uses several egg donors’ stories as a scare tactic to imply that fertility drugs cause serious illnesses, including potentially fatal cancers, without providing data to back up those claims.

Fertility drugs may indeed cause serious illnesses, including cancers, as I discussed in Thursday’s post. But research is ongoing, and likely not occurring at the pace it should be given the growth of fertility medicine; one of the film’s arguments is that clinicians are so focused on getting people pregnant that they are not adequately concerned with women’s health, which is a reasonable argument.

Yet this film presents several stories that are clearly intended to make the audience believe that the link between fertility drugs and cancer is absolute and certain.

For example, Alexandra is an egg donor who had terrible complications (a torsioned ovary and twisted intestine) after her egg-donation procedure, and went on later to develop breast cancer that required a mastectomy. She states that she believes that the donation procedure caused her cancer, because she has no family history of breast cancer. The filmmaker makes no effort to remind the audience that the link between fertility drugs and breast cancer is still being studied, or that the majority of breast cancers occur in people who have no family history of the disease.

The filmmaker not only doesn’t provide any sort of reality check for Alexandra’s claim, but also features a photo montage of a woman who donated eggs several times and died of colon cancer at a young age. While the film doesn’t claim outright that fertility drugs caused this young woman’s cancer, her story is clearly included to make audiences assume a link where there may not be one. Otherwise, why include it at all?

Science 101 teaches that anecdote does not equal proof. Just because people see a link between two separate phenomena does not prove that such a link exists. Correlation does not equal cause and effect. Last winter, when we in the Northeast were buried under feet of snow, people kept remarking that global warming must not be happening after all. Scientists, meanwhile, reminded everyone that daily or seasonal weather patterns are not the right data with which to measure climate change. Parents take their toddlers to the doctor for vaccinations around the same time that autistic symptoms surface, and then believe that the vaccines caused the autism, yet numerous studies have failed to prove such a causal link. It is human nature to want to figure out why stuff happens, and to make intuitive leaps that seem logical, but are unproven. (I mentioned last week that recently read Siddhartha Mukherjee’s book The Emperor of All Maladies: A Biography of Cancer, which is an accessible and fascinating look into the world of cancer research, in which many scientists have made intuitive leaps in trying to determine the causes of and best treatments for cancer. Sometimes those leaps paid off; a scientist eventually proved his or her hunch that two phenomena were related in a clear cause-and-effect relationship. And sometimes they didn’t.)

I’m not saying that Alexandra’s or the young colon cancer victim’s illnesses were definitely not caused by their exposure to high levels of fertility drugs. Rather, I’m criticizing the filmmaker’s implication of a clear causal link where one is not yet proven to exist. And even if, with the new data out of the Netherlands, we can be more certain that use of fertility drugs is linked to higher rates of cancer, that still doesn’t prove that Alexandra’s or the young woman’s colon cancer were caused by their use of fertility drugs.

Stories are invaluable for examining the ethical and emotional dimensions of reproductive medicine—as snapshots of human experience that help us to see nuances, dangers, and relational dynamics, not as scientific proof. I will continue to argue that real people’s stories make unique and necessary contributions to the ethical discourse concerning reproductive technologies. But I will never use someone’s story to try to prove anything, other than that reproductive decisions are some of the most fraught, complex, and difficult ones that we can make, and that clinicians, counselors, pastors, and others in a position to support people making those decisions often fail to do so for a whole host of reasons.

The problem with Eggsploitation is that it can’t seem to decide whether it is a film sharing compelling stories to make people think about the troubling dynamics of egg donation and fertility medicine (which I would support), or a film trying to prove that egg donation exposes young women to specific and serious health risks.

Note: The use of anecdote to prove specific risk is my main complaint with this film, thought not the only one. In my original review, I discussed some of the other problems I and a small group of friends had with the film, including horror-film–like music and editing. The filmmaker provided me with a free DVD last spring for review purposes.

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • http://eatwithjoy.org Rachel Stone

    Ellen, thanks for this explanation. What you say makes good sense. I had similar frustrations with the film No Woman, No Cry–and of course I got jumped on for criticizing (in a blog post) what was OBVIOUSLY a good effort, right? But like Eggsploitation, which I haven’t seen, it relied very heavily on scare tactics to say “see? see how dangerous childbirth is?” with little reference to the facts underlying maternal-fetal death in the 3rd world. An uncomfortable reminder that sensationalism sells. Thanks for being a voice of reason!

    • Jane Goodhope

      You do come across like you haven’t seen Eggsploitation.

  • http://www.lorrainewilde.com Lorraine Wilde

    Ellen, thank you so much for taking the time to clarify. Your response was reasonable and well written, and I think reflects the opinion of many with regard to “Eggsploitation’s” premise. Women’s stories need to be heard, but for us to move forward productively as a society, our decisions need to be based in fact while considering emotion. Well done.

  • Pingback: Science Lacking in “Eggsploitation?” | Lorraine Wilde

  • http://www.eggsploitation.com Jennifer Lahl

    Ellen, Thank you for taking the time to respond. And yes, I sent you an early review copy of the film which had different music and we agree here and have made dramatic changes to the sound track after the first initial copies were made.

    I’m still baffled though and clearly don’t know what kind of evidence/science you require. We had a screen shot in the film from the National Academy of Sciences report listing the potential risks of Egg Donation and the Former Medical Director, Suzanne Parisian speaking about the real risks, ‘even death’ of this practice. As I mentioned earlier Dr. Donald Landry, Chair of the Dept. of Medicine at Columbia University School of Medicine said this about the film, ” Eggsploitation renders the medical risks of paid egg donation with CARE and TRUTH (emphasis mine) in every detail and makes a thoroughly devastating case against the commodification of women and their eggs.” Do you take issue too with Dr. Landry and Dr. Parisian’s statements? And the National Academy of Sciences report?

    As to why we included Jessica Wing’s story in the film; there are two reasons (none of which are junk science or scare tactic). One is because her mother, Dr. Jennifer Schneider, in researching about her daughter’s death found in the medical literature two cases of infertile women who went on to die of colon cancer and this lead her to publish her paper (which is shown in the film) calling out how little is known, how we don’t track, monitor and study egg donors, so making and giving informed consent is a sham. Dr. Schneider has become a strong advocate for an egg donor registry and has testified at many hearings and along side me on Capitol Hill. She’s been a great advocate calling for the safety of young women egg donors.

    Which leads me comment on your criticism of our use of stories as anecdotes. We have to tell this solely from stories now because one of the dirty little secrets we expose in the film is how egg donors aren’t tracked. In fact the medical literature even refers to a “scarcity of data” which means, until laws and/or practices are changed all we have is stories. In my database alone, I have interviewed some 50 women who have had negative health outcomes as a result of making the decision to sell their eggs. My colleague in Canada has perhaps three times my database. Until we do the heavy lifting, all we have are the few studies done on infertile women (and entirely different patient population) and anecdotal stories. Which quite frankly, the industry wants and people like you seem fine with.

    I often feel like I am taking on the tobacco industry, which for years got away with lies, deception and not studying the effects of smoking. Today, we abhor smoking, would never encourage our children to smoke and yet, we ignore the risks of these powerful drugs and risky procedures. Not on my watch.

  • http://Www.bravelass.blogspot.com Kamilla

    Jennifer,

    Thank you for responding here. What Ellen seems to miss is how the stories help you build a cumulative case argument.

    Kamilla

  • Marjorie Campbell

    How were the health risks of smoking proved? How did we eventually learn of the dangers of from asbestos? When an industry is financially invested in a product (here, conception) and that product is much appreciated by a spending group of consumers, the first indications of a health concern are going to be anecdotal and, more, unwelcomed. In fact, anecdotes – like a Marlboro Man dying of cancer – motivate the public to demand full accounting. I am amazed at the number of women – women whose bodies and health are at issue here and whose children’s well-being over their entire life times are at issue here – jump to criticize Mrs. Lahl’s work as “anecdotal” or “scare tactics” …. I suspect these very same women would be among the first to howl if a documentary or ad featured smokers who loved tobacco and suffered no ill consequence from smoking …. of which, BTW, there are plenty. I believe Mrs. Lahl is correct – that she is taking on an industry battle like tobacco – and that all of us need to recognize that a product – commerical conception – which might produce some results we sincerely yearn for, may also produce physical and emotional health problems that warrant strict regulation, if not prohibition. As a woman concerned about women, their health, their children and opposed to the commodization of conception, I applaud any activist who is willing to give people like those in Mrs. Lahl’s documentary a voice – because it most certainly takes a strong determined activisim to speak above the clamor of criticism and censorship from the feritility industry and its consumers.

  • http://Www.Eggsploitation.com Jennifer Lahl

    Thanks Marjorie,

    And for us women, maybe especially closer to home and more recent to women my age (I’m 53) are the two drugs DES and Thalidomide. Drugs marketed to help women, but only to have disastrous results. First it was women who took DES, then we studied “daughters of DES” and now we continue to study grandchildren of DES. I often wonder when we will reach the tipping point with fertility drugs. I am a member of an international group calling for more natural approaches to treating infertility. While I don’t share their entire POV, it is because of the risks to women’s health, they are moving toward a “less is better” approach. And many of the bigger and recent studies have come from outside the U.S. which is often called the wild wild west of reproductive technology. Again, no studies done on the egg donor who is often aggressively stimulated to produce eggs. If you are paying $5,000 and up, who wants a few eggs when you can have dozens?

  • http://www.womenfaithculture.org Sarah Flashing

    “In fact, one of the things I struggle to understand is why several of this filmmaker’s colleagues and supporters have been so vocal in criticizing my “narrative,” or story-based approach to reproductive ethics, while also praising a film that is almost all story. Go figure.”

    My criticism of narrative ethics has to do with the accommodation to the story-teller where there is little or no concern for the promotion of foundational ethical principles. However, Eggsploitation isn’t just “story” as you suggest. These are stories that point to the larger moral principle that can best be described as neighbor love. Elevating the industry’s or individual self-interest over those whose health may be at risk is hardly a demonstration of that neighbor love, a principle so adequately delivered to us through the stories of scripture.

    I, however, don’t need the “stories” to be guided by principles on the issues of egg donation and IVF. If, by the unlikely chance, egg donation and IVF were proven to be perfectly safe for donor and recipient, there is still the risk to the embryo. Our love for neighbor should extend to every person no matter how small or seemingly insignificant they are.

  • http://Www.Eggsploitation.com Jennifer Lahl

    Sarah,

    That is so beautiful. I had not thought of it in the context as neighbor love before. Makes the tobacco example more powerful even. Why else are we so restrictive on where you can smoke? Because of second hand smoke risks and concern for our neighbor.

  • C. Sand

    Count me among the women with negative anecdotes, although it is difficult to consider my own experience an “anecdote” and therefore somehow less valid. Before I was a practicing Catholic, I underwent two IVF procedures in my mid-30s both of which involved egg retrieval. Subsequent to that procedure, I had to have one of my ovaries removed because of an ovarian cyst and an endometrioma.

    I do not remember anyone at the time mentioning the increased risk of breast cancer that was associated with the hormones used to stimulate the ovaries. I have volunteered with a breast cancer organization for the last several years and I know this to be a fact. There’s a reason that the WHO and the FDA has declared estrogen a carcinogen.

    So nice to be walking around the planet with two “ticking time bombs”, that may or may not go off. :(

  • Michael Miller

    If what you say is true, then I say that women should be scared. The procedure might *kill* women? Cause various kinds of cancers? What is the probability of death? What is the risk of cancer? We don’t know?

    Sorry, but that sounds very bad to me and I would be scared to undergo the procedure (I’m a man, so it isn’t an option), and I would be afraid for any friend who was considering it. The film uses “scare tactics,” but is that a bad thing given that a reasonable person should be afraid of this procedure?

    The bigger problem is that a procedure that hasn’t been studied well enough that we are confident of its safety should not be so widely used. It should be considered risky and experimental. If the fertility industry doesn’t like “scare tactics” then they should have data on the many thousands of women from whom they have harvested eggs. We ought to know the risks. Where are the data? What are the risks? We don’t know.

    Meanwhile, be afraid. Be very afraid.

  • http://www.eggsploitation.com Jennifer Lahl

    Michael,

    So glad to hear from a male voice. Often men feel they need to remain silent/neutral on “women’s issues”, but I welcome your comments. I think, in my mind, what makes the whole industry of egg “donation” (I have met true egg donors, but the majority are selling) even more scandalous, is that the egg donor is not even a patient, who with true informed consent, assumes risks of medical treatment for an underlying disease. You could argue that a cancer patient will take a potentially risky experimental drug in order to fight the disease, but the women in the film were otherwise healthy women . . . I keep wondering when the insurance companies will wise up and stop paying for “treatments” when there is no disease. The three women in Eggsploitation each have hundreds of thousands of dollars of medical care that they should never had needed.

  • Allison

    I’m sure that the women whose lives have been negatively affected by egg donation would be offended by the way in which you reduce their horrific experiences to anecdotal evidence. To you, their stories may be just that–stories. But to them, these stories are their reality, and it is irresponsible and unthinkable that we let this happen to even one woman because of our refusal to thoroughly explore the very real dangers of egg donation and other reproductive technology. As others have pointed out, until we start adequately researching the possible consequences of the reproductive technology we are using right now, all we have are these women’s stories. And they have a right to be heard and to try to compel us to use this technology responsibly.

  • http://www.ellenpainterdollar.com Ellen Painter Dollar

    Thanks for all your comments. I’ll just reiterate that my issue with the film is not with the message—that reproductive technology carries risks that are not adequately communicated, and is an unregulated industry that often operates without adequate attention to its health, emotional, financial, and ethical ramifications. I agree with and support that message. My issue is with the methods used to communicate that message. I take issue not with the stories themselves, nor with the women who told their stories, but with how the filmmaker chose to use and frame those stories.

  • http://Www.Eggsploitation.com Jennifer Lahl

    Ellen,

    Thank you for confirming my hunch. This isn’t about “junk” or “bad” science at all but the method of communication.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Um, no. Because your method of communication was to use anecdotal evidence to imply scientific proof. So it is about bad science. When science is used in a way to lead people to conclusions that are not scientifically proven, that’s bad science.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        Or, I should say, when anecdote is used in a way to lead people to conclusions that are not scientifically proven, that’s bad science. You presented a young woman’s death from colon cancer with a clear intent to make the audience believe that her colon cancer resulted directly from fertility drugs. No one has proven that claim. So as much as I value that young woman’s story, and her mother’s work to reveal the troubling dynamics of the fertility industry (work that both you and I are involved in), I can only label the way that her story was presented as bad science.

        • http://www.bravelass.blogspot.com Kamilla

          Ellen,

          The trouble, as your previous posts reacting to “Eggsploitation” show, is that you are arguing anecdote versus anecdote. You and your friend in the viewing party had a different experience than the subjects in Jennifer’s film.

          That stacks up as anecdote versus anecdote. The difference is, the documentary doesn’t leave it at personal experience. As Jennifer has indicated above, the film has been judged as presenting the case with care and truth by no less by the Chair of the Department of Medicine at Columbia. Now that’s just one opinion, but I don’t think you do yourself any favors by repeating the “junk science” mantra once folks know about that sort of endorsement of what is an award-winning documentary.

          I’m afraid Jennifer’s assessment loooks accurate since across several posts now, the one consistent criticism you have is about style.

          The sort of “scientifically proven” case you seem to be asking for does not exist – nor does it exist for a great number of conditions, causes and treatments that are accepted as given. Often, we can only speak in terms of risks and potential outcomes. The best we can hope for, since the sort of direct and controlled human experiments which offer “proof” are frowned upon, is to build a cummulative case argument.

          And that is what Jennifer has begun to do – garnering support from both sides of the political aisle in the process.

  • http://www.eggsploitation.com Jennifer Lahl

    “My problem with the film is that it uses several egg donors’ stories as a scare tactic to imply that fertility drugs cause serious illnesses, including potentially fatal cancers, without providing data to back up those claims.”

    We backed this up with what is known by listing the potential risks in the National Academy of Sciences report (which include reproductive cancers) and with the interview in the film with the former Medical Director of the FDA, Dr. Suzanne Parisian, who listed at length, the health risks (including cancers). While making a solid case for the lack of study and lack of monitoring and tracking of egg donors, Jennifer Schneider’s contribution and mentioning her peer-reviewed article published in the Journal Fertility and Sterility titled, “Fatal colon cancer in a young egg donor: A physician mother’s call for follow-up and research on the
    long-term risks of ovarian stimulation”.

    Your initial blog post, which started my asking why you discredit Eggsploitation as junk science, for heaven’s sake was titled, “Fertility treatment might cause ovarian cancer”. This study which you refer to (I have the actual study if you want to read it) is important because it is a large cohort of women, compared with women in the general population and over a significant period of time.

    One word comes to mind: incredulous

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Obviously we have to agree to disagree. To me, the fact that my criticism of your film was in my post sharing data about cancer risk gives my criticism more weight, not less. Because I’m really not trying to cover up risk or give the fertility industry a pass. I am simply criticizing a film that I thought did a poor job of making the case it was trying to make because it mixed up anecdote with science in a way that I found unconvincing. I don’t question the FDA officer’s judgments; actually, I thought her contributions were some of the strongest parts of your film. If you had either left out the colon cancer case and Alexandra’s unsupported claim that her cancer was caused by her fertility treatment, OR provided a reality check to those stories (“While we cannot know for sure that these young women’s cancers were caused by their fertility treatment, there is some evidence of increased cancer rates among women who take high levels of fertility drugs…”) I would have thought better of your film, though I likely still would not have loved what I felt was its overly dramatic tone (which is simply a personal preference). But those two things in particular, along with some lesser problems, did a lot to discredit the film’s message, in my opinion. And part of why that distresses me is that I think the message is an important one, and hate to see it presented in a way that some people might not take seriously. I’ll tell you that my viewing party didn’t take it seriously, and while they were all friends and acquaintances, I made a point of simply taking notes and not responding at all during the film. One friend, who had a baby via a donated egg (and is a physician), basically said that she expected to be upset by the film because it was questioning how she had her child, but she really wasn’t because of the problems I outlined in my original review.

  • Jane Goodhope

    I took the drug Lupron ONCE in a one month dose to prepare for a very minor fibroid surgery. Just five weeks later, my entire abdominal wall was destroyed. I have permanent severe abdominal distention which requires abdominal wall reconstruction, which is not covered by insurance. I have never weighed over 100 pounds and never been pregnant, and wasn’t trying to get pregnant.

    Fertility drugs like Lupron are unequivocally dangerous. This is not anecdotal. There are well over 12,000 adverse events (many of them similar) reported to the FDA, and the manufacturer acknowledges right on the label that Lupron causes bone loss and vision loss. The Physician’s Desk Reference states that Lupron causes hernia (deterioration of the abdominal wall). The Physician’s Desk Reference says that Lupron should not be administered to women with known or suspected carcinoma of the breast (on page 496). Lupron spikes estrogen levels before it lowers them as a rebound affect. Anything that raises your estrogen level can cause breast and other cancers. Period.

    Eggsploitation must rely on anecdotes only because doctors and the FDA have refused to track egg donors. But Lupron is undeniably one of the most dangerous drugs on the market today. There is absolutely no question that egg donation and IVF carry significant risks.

  • MillieFlorence

    Donating eggs does not cause colon cancer; if this were true, there would be an epidemic of colon cancer in all women who have undergone IVF. As stated previously, the procedure an egg donor goes through is the EXACT same procedure that any woman goes through for IVF using her own eggs – taking daily injections, and then having eggs extracted at a clinic. Same thing every woman who has ever had an IVF has done. IVF has been around for almost 30 years now. How come we haven’t seen this epidemic of colon cancer in these women? The mom who blames egg donation for her daughter’s death from colon cancer is an idiot who never bothered to do any real research.

  • Scott John

    I definitely have to agree with the author on this one and the horrible science and way it is portrayed in the film.
    I have issues with the U.S. fertility industry which is more of a “wild west” than most other countries. More embryos tend to be implanted, and the clinics less regulated. There is significant profit in the industry and that opens it up to abuse (this last point can be made about any facet of the U.S. medical apparatus, and is not at all specific to the fertility industry). As a science-based medicine believer, I would never argue that we shouldn’t have more research and statistics kept.

    Those things agreed upon… making a substantive case for extreme risk from egg donation is incredibly far-fetched and the way it is presented blatantly infers things that have no basis in reality.

    The producer above parses her words above stating that medical experts have proclaimed that there are risks… yet she carefully fails to quantify them. There are risks to everything in life including the risk of an airplane falling on me while I type this note. The bulk of the “possible” risks of the procedure are less than the risks a donor faces by driving to their appointments or crossing the street to the clinic. The prevailing actual science from the U.K. indicates that the risk of death from IVF treatment is approximately 1 in 100,000 (about one-tenth of the rate of death from natural childbirth)… and that number includes deaths related to parts of the treatment that IVF recipients face but are not applicable to egg donors.
    She also fails to note that Dr. Landry was torn apart by his medical peers at the national level for putting his religious beliefs ahead of proper science. Science should be the basis for research and treatment… not whatever your personal faith believes should be the case.
    The failings of her arguments in the film are replicated in this thread… she presents two “medical experts” as the prevailing medical opinion on the topic. Unfortunately they are outnumbered hundreds if not thousands to one by peers who vehemently disagree with them. That is simply cherry-picking facts and individuals to suit your already pre-ordained argument. It is fine to do this when trying to make a persuasive case… but it is also extremely dishonest, especially when it is portrayed as science.


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