ReproTechTruths

The Untold Stories of IVF

#Unmasking IVF Explained

June 6, 2017 How This Works 1
IVF Unmasked
Spread the love

Welcome. We’re glad you found us. If it’s your first time visiting, here’s some background…

On July 25, 2018, Louise Brown, the world’s first baby born via in vitro fertilization (IVF), will turn forty.[1]

For those fortunate to have birthed healthy babies via IVF this anniversary will be celebratory. But for many millions more who attempted IVF and failed,[2] and for women’s and infant health specialists still trying to assess and reduce medical risks, the 40th anniversary of IVF represents a different opportunity. It offers a chance to come forward with the well hidden side of IVF and spotlight concerns about safety, efficacy and the lack of consumer protections.

In anticipation of the anniversary, several former IVF consumers, ourselves included, are creating an online repository along with a social media campaign using the hash tag #UnmaskingIVF. Our long-term goal is to push for greater procedure transparency and public health information so that women are well informed about the full spectrum of outcomes and risks associated with IVF.

Our first step going into 2018 is to create a a more comprehensive body of narratives where people who experienced the lesser known IVF outcomes and those who have worked in the industry can post their testimony and share their stories with the public.[3]

We want to hear from:

  • women who were early IVF research subjects
  • scientists who had concerns that did not get fair hearing[4]
  • those who managed a clinic or agency and witnessed data manipulation or questionable practices around development or marketing of new service offerings without evidence-based science to indicate effectiveness or risks
  • those who experienced failed IVF
  • those who bore children with health challenges or stillborn infants.

We also want to hear from you if you sold or froze your eggs, served as a commercial gestational surrogate and came away with compromised health.

Those women and men who feel comfortable sharing information about the complications they experienced as patients/consumers, or witnessed as health practitioners or scientists can provide an important public service during the upcoming anniversary year and beyond.

Due to poor record keeping in many countries, it is virtually impossible to know for sure how many babies have actually been born via ReproTech services or how many have been born healthy. Over the years various industry representatives have estimated anywhere from one to five million. In a 2001 interview Robert Edwards, one of the British scientists responsible for Brown’s birth, was quoted as saying that one million IVF babies had been born since 1978.[5]  Five years later, in 2006, those approximations rose to two million,[6] and in 2012, to five million.[7]

Yet while the IVF industry focuses on and markets the success stories, the European Society for Human Reproduction and Embryology (ESHRE) asserts that of the 1.5 million IVF cycles performed annually, roughly 1.2 million fail — translating into a global IVF cycle failure rate of almost 80 percent.[8]  In the U.S., recent reports from the Centers for Disease Control (CDC) indicate a national failure rate of roughly 70 percent per cycle across all ages.[9] Public information provided by the UK Human Fertilization and Embryology Authority indicates that 73 percent of cycles fail annually.[10]

The lack of longitudinal studies about reproductive technologies is one of many troubling issues since IVF was first commercialized. Today ReproTech is a fast-growing unregulated industry with few, if any, consumer/patient protections. Scrutiny and honest dialogue is needed now more than ever with increasingly risky entrepreneur-led efforts to sell untested procedures while downplaying risks.

We welcome bioethicist exploration as well as scientific rigor – particularly as experiments with gene therapy[15] migrate to ReproTech procedures despite cautions about risks associated with DNA manipulation.[16]

#UmaskingIVF values personal testimony about ReproTech. Your stories are a powerful tool that can help individuals and civil society make decisions about ReproTech and help direct public policy in the future. If you have a story tell, we hope you join us.

Email us at info [@] reprotech [dot] org and we’ll explain how to participate.

~~~

[1] The IVF Global Experience, Australian Research Council Discovery Project, https://www.uowblogs.com/ivfglobalexperience/; The World’s First Test-Tube Baby, PBS, The American Experience – http://www.pbs.org/wgbh/americanexperience/features/general-article/babies-worlds-first/

[2] Zoll, Miriam, Questioning the Cult of Repro Tech, Dark Mountain, October 2015, http://dark-mountain.net/blog/questioning-the-cult-of-repro-tech/

[3] https://www.theguardian.com/lifeandstyle/2013/aug/31/what-really-thinking-ivf-child

[4] Wrigley, Wynsley, IVF ‘guinea pig’ nearly died: New book challenges ethics of research pioneers, Gisborneherald, May 10, 2016 – http://gisborneherald.co.nz/localnews/2300436-135/ivf-guinea-pig-nearly-died; Crashley, Sandra, Testimony of an IVF Guinea Pig, [vi] http://www.telegraph.co.uk/news/uknews/1542982/Fertility-research-drugs-put-egg-donors-at-risk.html

[5]  (1 million IVF Babies 2001, An Interview with Robert Edwards;  http://www.laskerfoundation.org/awards/2001_c_interview_edwards.htm

[6]  (2 million IVF Babies 2006), http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1936357/

[7]   5 million IVF Babies 2010, Nobel Laureate and IVF Pioneer Dies, http://www.the-scientist.com/?articles.view/articleNo/35075/title/Nobel-Laureate-and-IVF-Pioneer-Dies/

[8]  European Society for Human Reproduction and Embryology,  http://www.eshre.eu/ESHRE/English/Guidelines-Legal/ART-fact-sheet/page.aspx/1061, 3rd paragraph (350,000 lives births (success) out of 1.5 million treatments; 1,150,000 million failures – divide 1,150,000 failures by 1,500,000 attempts =  76.6

[9]  Centers for Disease Control, http://www.cdc.gov/art/ART2010/index.htm (147,260 cycles performed resulting in 47,090 live births; divide failures (100,170) by attempts (147, 090 = failure rate) = 68.1

[10] HFEA, Latest IVF Figures, 2010-2011, http://www.hfea.gov.uk/ivf-figures-2006.html

[11] Zoll, Miriam, Questioning the Cult of Repro Tech, Dark Mountain, October 2015, http://dark-mountain.net/blog/questioning-the-cult-of-repro-tech/

[12] Bakalar, Nicholas, Birth Defects Seen in Assisted Conception, New York Times, May 14, 2012, http://www.nytimes.com/2012/05/15/health/research/birth-defect-risk-higher-with-fertility-treatments-study-shows.html, Zoll, Miriam, “Stillbirths and Infant Health Risks Higher in California’s Artificially Conceived Infants”, Reporting on Health, 2014http://www.reportingonhealth.org/2014/02/27/stillbirths-and-infant-health-risks-higher-california%E2%80%99s-artificially-conceived-infants

[13] Study reveals lack of supporting evidence for claims about fertility treatments, British Medical Journal, November 28, 2016 – http://www.bmj.com/company/wp-content/uploads/2016/11/bmj-panorama-fertility.pdf

[14] Henig, Robin, Should You Freeze Your Eggs? An egg freezing party is not a great place to find answers to this or other questions, Slate, September 30, 2014

[15] http://www.npr.org/sections/health-shots/2017/01/01/507244429/unexpected-risks-found-in-editing-genes-to-prevent-inherited-disorders?utm_campaign=digest&utm_medium=email&utm_source=app

[16] http://www.nejm.org/doi/full/10.1056/NEJMcibr1608715

 

 

One Response

  1. […] encourage you to share your untold IVF story. It’s best to send via email: info [@] reprotech [dot] org and please provide your consent for […]

Leave a Reply

Your email address will not be published. Required fields are marked *

*
To prove you're a person (not a spam script), type the security word shown in the picture. Click on the picture to hear an audio file of the word.
Anti-spam image