Silent Sorority

Infertility Survivors Finally Heard

July 24, 2015

Bioethicists in U.S. and Australia Call for Fertility Industry Regulation, More Transparency

When a former member of the ethics committee for the American Society of Reproductive Medicine (ASRM) calls for fertility industry regulation we should sit up and pay attention.

Earlier this month George Annas, a Boston University School of Public Health professor and chair of health law, wrote a blistering opinion piece, It’s Time to Regulate the Fertility Industry, to combat what he sees as a fertility industry run amok. While he acknowledges that some people have been helped to have children they could not otherwise have, we can no longer leave patients at the “mercy of the market and unscrupulous practitioners.”

The industry does not, and perhaps simply cannot, police itself. — George Annas

Annas first raised concerns about the direction of the fertility industry in a PBS FRONTLINE interview a few years ago saying, medicine in this field is frequently second to the marketing,” but his recent opinion piece contains some new statistics, recommendations and tougher talk.

Buyer beware may be a good slogan at a fast food restaurant, but it should have no place in the practice of medicine, and no place in a medical industry.

— George Annas

To underscore one of many important points about the fertility industry’s lack of accountability, of ART babies he notes 36 percent are born prematurely (compared to 12 percent of non-ART babies). Annas writes, “If we really relied on the market to regulate ARTs, for example, we would require ART clinics to pay for the neonatal ICU care of multiple births. This would likely eliminate the practice of using more than a single embryo per cycle, the most common cause of multiple in vitro fertilization births.”

It’s hard to argue against this assessment: “The market is the wrong model for the fertility industry. It should be regulated like other medical procedures that have both benefits and risks, with the goal of minimizing the risks to both a woman and her planned children.

We must move beyond the market to medical and family law rules.

Could not agree with you more, George. I hope U.S. government officials, patient/consumer health advocates and industry watchdogs take your message about the need to reform and regulate the fertility industry to heart.

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Last month in Australia there were similar calls for fertility industry transparency and better clinic oversight. An article in BioEdge highlighted a piece written by lawyer and bioethicist Loretta Houlahan who criticised the suppression of clinic success rates saying “the current system perpetuates a lack of accountability.”

As couples enter pristine Australian IVF clinics with their smiling staff and photos of bright-as-a-button babies, they are usually unaware of the harsh reality of IVF success rates. The statistics are worse than most would think.

Read Houlahan’s full piece, The ART of Deception — IVF Success Rates Are Not What You Think, here in The Conversation.

Coincidentally, on the topic of questionable fertility industry practices and marketing hype TIME magazine takes a hard look at the newest fertility industry offering ‘social egg freezing.’ You can find this well-researched investigative article, The Truth About Freezing Your Eggs, in the July 27 edition.

Article Excerpts: “Egg freezing, women are told, is a fountain of youth. Like most such promises, it doesn’t quite deliver. Some women will take home babies from their frozen eggs, but many won’t. And for a procedure pitched to anxious women as an ‘insurance policy,’ there is shockingly little data on exactly what their chances are.”

“A lot of these clinics massage their data,” says Dr. Mary Jane Minkin, an ob-gyn who teaches obstetrics at Yale School of Medicine. “All of this stuff is a gamble, and I would certainly hate like heck to have anybody count on this as an absolute guarantee.”

I am honored to be among those quoted:

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“If doctors are trying to manage egg freezing expectations, some women who have tried multiple rounds of IVF are downright skeptical. ‘There is unfortunately a real growth industry here around those who see dollars and not necessarily babies,’ says Pamela Tsigdinos, an infertility blogger and the author of Silent Sorority, who attempted IVF cycles with fresh eggs. ‘You don’t see women on stage like me talking about the absolute heartbreak,’ she says. ‘The doctors keep telling you your eggs and embryos look fabulous, and then you’re left sitting in the dark room with the phone and someone has just told you you’re not pregnant.’ ”  Read the full story here >>>

Newsletter subscribers already heard about this accolade. (Thanks for the shout outs in the previous post comments). Wanted to share here on the blog as well.

Time Inc.’s Health Magazine Names Silent Sorority ‘Top 10 Health Blog’

Congratulations! Give yourself a round of applause because you, dear readers, are at the heart of what made this blog one of Health Magazine‘s Top 10. This is an honor we share collectively. Read more here.


Lots to consider on where the fertility industry is headed. Welcome your comments. Read more on health, bioethics and related material here.

Another Perspective 10 Replies to “Bioethicists in U.S. and Australia Call for Fertility Industry Regulation, More Transparency”
Pamela Tsigdinos
Pamela Tsigdinos
Writer, blogger and, oh, yeah, infertility survivor. My memoir, Silent Sorority, tells the whole story. There's a movie in there somewhere. Given the quirkiness needed to relate it all I'm thinking Jennifer Lawrence would be a good fit.


10 thoughts on “Bioethicists in U.S. and Australia Call for Fertility Industry Regulation, More Transparency

    Author’s gravatar

    Yay! Finally, the word is getting out there. And I’m so glad you have been acknowledged for your part in making sure this is part of the conversation. Everything you have been saying is validated by this comment from Annas – “It’s almost like the medicine is secondary. I mean, commerce has overwhelmed this whole industry.” All those people who were mad at you for talking about the “industry” – well, that’s exactly the terminology Annas uses. The article is long, but fascinating. I highly recommend it.

    I also spent ages poring over the details of the AusNZ reports. IVF is closely regulated here, perhaps less so in Australia (but I say that based on perception only), but the funding they have there is also much more generous. I found it interesting that the annual reports didn’t mention the impact of government funding. A strong drive in NZ for the replacement of only one embryo at a time was a change in government funding.

    I was though interested in the whole issue of “success rates” because we all know they can be manipulated. The balance of good success rates with valuable repeat customers must be a quandary for some of these businesses!

    Still, it was horrifying to see that there is a clinic/doctor in Australia or New Zealand with a success rate of only 4%. Is that because they only take the hardest cases? Or is it because they are truly awful at what they do? Or is it because they convince people to come back over and over again , when it is obvious they won’t get a baby? I shudder to think.

    Author’s gravatar

    How cool is it to be quoted in Time?! Well done on doing your part to bring these things to the forefront! A lot of people don’t want to hear what you have to say, but they need to. Having all of the information from both sides of an issues is necessary for making the best decision.

    I have to say that Dr. Annas’ comments about success statistics and clinic marketing validate both our decision not to pursue IVF as well as our feelings about the clinic we used for testing.

    Author’s gravatar

    Bravo Pamela!!! I’m so glad you were a part of this article and helping spread the word about the need for regulation.

    Though I am beyond grateful for my twins, I am not grateful for the time spent in NICU nor the care I received as we were undergoing fertility treatments. There was too much of a push to jump to IVF and very little time spent actually trying to determine WHY we were dealing with infertility. And it’s long overdue that the industry start pushing for research and stop marketing programs like egg freezing as a form of fertility preservation.

    With regulation comes rights. Hopefully soon, the focus will be on treating patients living with this disease, not on milking them of their savings.

    Author’s gravatar

    I echo Cristy’s sentiments to a large degree.

    Thank you especially for highlighting the uneven nature of care within the fertility industry. My first RE couldn’t trouble himself to tell me during our phone consult when I asked about IVF that his standard post-egg retrieval instructions included a 25 lb lifting restriction and restricted bending/twisting. This is pertinent because I had just started a brand-new job and it was fairly physically demanding – which I told him during the consult and I asked him if there were *any* parts of IVF other than the egg retrieval/transfer time off that would affect my job. I found out about the restrictions a couple of weeks later when I called the clinic for something unrelated, but by that time, had already scraped together the finances and had emotionally invested in the cycle (and I think even started BCP to prepare). If there was anything I could do over in the journey, it would have been to demand an in-person meeting with him and have it out, as this hadn’t been the first dust-up we’d had with him. To my chagrin, I did not. I went through with the cycle and miscarried. This is the same doctor who called me to congratulate me on my positive beta but never bothered to say a word when I miscarried (diagnosed by one of his partners, who was – thankfully – very kind and sensitive…but I know he was told, and it still infuriates me to this day that he couldn’t take 3 minutes to somehow acknowledge my loss).

    My 2nd RE was much, much better about being very upfront about treatment limitations, honest, and acknowledging the emotional impact of treatment. It amazes me how much things can vary simply from doctor to doctor, even within the same practice. And that shouldn’t be the case. There needs to be more emphasis on research and on ethically caring for a very vulnerable, often desperate patient population.

    Congratulations on being quoted in TIME and in the top 10! You do a lot of great work advocating for infertility patients, and it’s wonderful to see it acknowledged.

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