Silent Sorority

Infertility Survivors Finally Heard

May 4, 2014

Fertility Industry Brings Brave New World Closer: Are We Truly Ready?

There were many troubling headlines about the fertility industry this past week:

The Subtext: When it Comes to ‘Fertility’ Medicine, Buyer Beware

The commercialization of conception has entered a new phase. There are certainly large markets for enterprising fertility industry service providers. The markets are made up of hopeful women and men in search of fertility industry offerings. The offerings range from basic fertility workups and diagnostics to increasingly expensive IUI to IVF and pre-implantation genetic screening and testing. For those seeking long-range-planning options, clinics and third-parties are now brokering the ‘banking’ of frozen eggs or frozen embryos. There are even service providers who will recruit women (usually college age) for egg ‘donation’ or the hiring of a womb (surrogacy) if needed.

Coincidentally, as I mulled these headlines and reading the stories, I received an email reminder.  I had registered to attend an evening panel at UCSF: Exploring the Future of Reproduction. The session question: As technology marches on and prospective parents have endless options for procreation, what are the medical and ethical ramifications for individuals, for families, and for society?

I persuaded my husband to join me. Off we went for a most unusual date night.

Outside of a moderator ill-equipped to handle the weightiness of the topic the panelists were not afraid to raise multifaceted and, yes, unpleasant topics about health risks and costs.

Fertility Industry Grows Despite Failings

A professor of obstetrics, gynecology and reproductive sciences opened with slides indicating that premature births associated with patients using fertility medicine raised serious questions about which need was greater: the need to fulfill the wishes of those who wanted to become parents or the children created with reproductive medicine? (More on IVF birth risks here and here).

The professor was followed by a specialist in reproductive endocrinology and fertility who acknowledged that failure rates associated with treatment were high and that those working in fertility medicine needed to tread lightly and carefully identify risks and monitor outcomes so as not to create new health problems by trying to solve infertility.

The moderator asked, “with all the new clinics being created won’t treatment costs go down?”

“No,” the RE responded. As he sees it, the push to pursue more and more embryo manipulation and testing means costs will go up.

See also  The New Normal

The audience broadened the discussion further.  A research anthropologist posed ethical concerns and health issues tied to clinics profiting at the expense of young women. She raised as evidence egg donors who had been overstimulated with hormones to create oocytes for three couples at a time, and fertility clinics pocketing money while creating long-term identity issues for future children by banking embryos for sale.

A young reproductive biologist from Portugal wanted to know more about studies indicating that children conceived with IVF had a higher incidence of diabetes, a concern introduced by the RE in his overview. (More on that topic here: IVF may raise risk of diabetes, hypertension and cancer in later life.) The oby-gyn professor and RE both acknowledged that a lack of funding for longitudinal health studies meant insufficient data and reduced amounts of in-depth knowledge about health risks created by fertility treatments.

Aghast, the reproductive biologist asked incredulously, “how can we make treatments available if we don’t know the risks associated with them?” Bingo.

Why Isn’t Trauma a Priority?

Building upon some of the questions about physical health risks, I wanted to know more about the emotional risks for those involved. The moderator, though, was intent on getting everyone out of the auditorium — despite the fact that more questions were queued. It was only because I was holding a microphone I was able to insert a last question. I asked the doctors how they addressed the trauma that accompanied failed treatments.

With deference, the RE acknowledged that he had been witness to immense suffering among his patients. His body language and voice softened as though he was reliving the experience of sitting with a distressed couple. After a pause, and clearly wanting to end on a positive note, he brightened and explained that the impetus for the creation of reproductive medicine was, in fact, to address the very intense human desire to conceive and deliver a child.

After the formal presentation I had a chance to speak briefly with the doctors. Both were warm and compassionate, and clearly very aware that reproductive medicine was accompanied by an ethical gray zone. I also had a chance to chat with the reproductive biologist from the audience. I learned he was drawn to the field by his fascination with RNA, but he made it clear he wants a rigorous ethical framework in which to conduct his scientific research.

We all agreed more needed to be done to understand the physical and emotional health implications and ethical considerations for all engaged in reproductive medicine. The 90-minute panel only scratched the surface and left me a bit frustrated. Without a doubt, there is more than enough subject matter to fill days and days of serious and important conversations. (Note: Here is a link to watch the panel and presentations.)

I came home to find two more headlines from the point of view rarely raised — that of the children conceived and born using ART:

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More Reading

These two articles reminded me of this poignant piece: What I’m really Thinking: The IVF Child

And, as if to warn that the myriad issues raised have the potential to get thornier and more numerous, into my inbox came this headline: Rates of IVF continue to grow, followed quickly thereafter by Does ‘Sperm Donor’ Mean ‘Dad’?

The larger questions for society: Are we ready to tackle these many complex issues? Ussues that have long taken a back seat as we focused disproportionately on commercializing scientific breakthroughs? Are we willing to acknowledge the “don’t give up mantra” surrounding reproductive medicine and the industry to create (or to use Lise Ravery’s words “manufacture children”) has unleashed a new set of ethical dilemmas?

For the more academically-minded readers, you can further dig into new research by Karen Bell out of Australia’s Charles Sturt University. Her work explores the social, psychological and ethical implications of the predominantly clinical, biomedical approach to artificial reproduction. The author collected and presents evidence of “Testimonial Quietening” and “Testimonial Smothering.” Her paper is titled Exploring Epistemic Injustice Through Feminist Social Work Research.

Updated May 9, 2014 — You’ll find new links included, below, to the panel talk and the Seleni blog…

While you contemplate the many questions and ideas above, I’ll leave you with some personal perspective shared on other online outlets and blogs.  I first collaborated with Keiko Zoll in exploring our differing fertility medicine outcomes captured here. You can find my latest Keiko Q&A on The Infertility Voice.

Lastly, I’ll soon have a new piece on how to celebrate mother’s day sensitively. Will update this link when it goes live this week on the Seleni Institute’s blog. In the post, I included a link to Lori Holden’s timely and well written piece: How to Survive Mother’s Day.


Linking Around 8 Replies to “Fertility Industry Brings Brave New World Closer: Are We Truly Ready?”
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.


8 thoughts on “Fertility Industry Brings Brave New World Closer: Are We Truly Ready?

    Author’s gravatar

    Thank you so much for the work you are doing on this front! I hope my voice, although maybe small now, will join you! Justine

    Author’s gravatar

    This is a thought provoking post about a side of fertility treatments few are actually willing to talk about. You’re main message is right: the way fertility treatments are pitched makes it sound like they are completely safe, without side-effects and 100% guaranteed to work. Yet we don’t know the long-term effects of these procedures, we’re just beginning to understand that there are consequences to misuse of the drugs, we’re only starting to understand how infertility may be a symptom of a larger problem and the truth is that failure rates are high.

    The desire to parent is a natural and strong one. But we do no one any favors by sugar-coating the reality. People deserve to have access to the truth, even if it is painful. In my mind, mandating insurance is a key first step to accomplishing this, but we also need to have open conversations not only within the community, but also as a global community.

    Author’s gravatar

    Wow, lots of food for thought & further reading here, Pamela. This post reminded me of the book “Everything Conceivable” by Liza Mundy, which I read a few years back. I remembered writing about it on my blog — surprise! I read it at your recommendation. ;)

    I don’t think people realize just how new (relatively speaking) this technology is — Louise Brown isn’t even 40 yet — and how little we still know about it, about what really works and what the long-term effects are on both parents and children. I’m glad there are people (like you) out there who are asking questions and holding doctors and medical companies accountable — although I’m sure there are people who would prefer to stick their fingers in their ears & sing “lalalala….” — at least until they get that elusive baby.

    Author’s gravatar

    Congratulations on your question regarding trauma that accompanied failed treatment!

    Author’s gravatar

    What a fascinating panel, with so many deep questions posed.

    The more I interact with adult adoptees, the more curious I am about the viewpoints of the future adults who were conceived via some methods of ART. The perspective on this is bound to change the longer we’ll have been able to see what happens as a result.

    Author’s gravatar

    Nice post, lots to think about… Will give me something to mull over as I mow the lawn later! Thanks for all you do!

    Author’s gravatar

    WOW…food for thought. THANKS for sharing! With Mother’s Day looming and so many programs here offered for mothers, I sometimes wonder if I can also take advantage of it even if I’m not a mother (such as I just read a kind of raffle prizes for mothers to get a voucher for a local beauty salon – not that I think I’m going to, but just wondering inside).

    Author’s gravatar

    A good doctor will provide their patient with all known information and put the decision on how to proceed in their patients corner. They will go over risks of certain treatments, will be honest when they don’t know something and they’ll never push a patient into pursuing a path that benefits them.

    For my wife an I our first RE tried to push us into something we were not ready for. The second RE gave us a thorough analysis, admitted that things may or may not work and did not push us into making a decision one way or another.

    What these doctors don’t get is that people are more likely to recommend them to others when they have a good patient centered experience.

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