If you’ve found this website, chances are good that you are 1) considering a ReproTech procedure 2) you’re looking to end IVF treatment or 3) you are a recovering member of Generation IVF.
People as a rule don’t make good decisions when they’re overwhelmed or in an anxious state of mind. That’s why it’s good to have information about reproductive medicine well before reaching a crisis state. Objective knowledge and access to information is key.
Information, however, about the risks and trade offs of reproductive medicine is not easy to locate. The full patient/consumer health impacts and the long-term effects of fertility-related treatment drugs and interventions are not well tracked. The handful of studies that do exist (see reporting links below) are not included on ‘fertility’ clinic websites. They also rarely get covered by popular media outlets or those reporting for a lay audience.
Infertility Treatment Toll
Those who experienced complications, IVF trauma and failed treatment are beginning to step forward to openly and honestly acknowledge and address the physical, social and psychological tolls associated with reproductive medicine and IVF treatments.
Until now we’ve primarily relied on those who profit from selling infertility drugs and treatment to control the conversation. It’s been 60 years since the birth control pill became widely available (thanks in part to research involving infertile women), and 43 years have passed since the birth of the first IVF baby. Since then, without the benefit of longitudinal health studies, women engaging in advanced assisted reproductive technologies (ART) and the children resulting from IVF have largely been involved in a huge experiment.
Knowledge is power. With the benefit of reflection and healing — and having fully come to grips with what we’ve experienced — we are now able to share from one generation to another some valuable lessons. Below you’ll find links to a set of independent resources, articles and perspectives. Welcome your addition to this list so we can grow the body of knowledge.
Infertility Industry Tracking
Public health monitoring of ReproTech
IVF Success Rates ‘Misleading’ (University of Manchester)
The high, mysterious and added costs of IVF (Irish Times)
UK’s National Health Service: Expensive IVF Add-ons ‘Not Evidenced Based‘
‘No Solid Evidence’ for IVF Add-on Success (BBC)
The Misleading Promise of I.V.F. For Women Over 40 (The New York Times)
Fertility clinic success rates are misleading, possibly dishonest (Slate)
Editor attacks the over-use of ICSI as ‘ineffective and costly care‘ (Science Daily)
Are the risks of extending IVF outweighing the benefits? (University of Aberdeen)
IVF Clinics must not be allowed to exploit childless families for profit (UK Independent)
Concern over IVF couples being sold unnecessary ‘add ons’ by clinics (Scotland Evening Express)
IVF Industry criticized for ‘misleading claims, aggressive marketing’ (Australia)
CDC – Assisted Reproductive Technology (U.S.)
Infertility Treatment & Physical Health
IVF Babies Have Higher Cancer Risks, Irsraeli Study Says (Times of Israel)
Maternal Deaths in Vitro Fertilization Effect (Science Times)
For IVF Embryos, Lab Culture Can Have Lasting Effect (Stat News)
Reproductive technology tied to higher risk of birth defects (Journal of American Medical Association Pediatrics)
Male fertility treatment seems to pass infertility on to sons (New Scientist)
Adverse outcomes from IVF BMJ (British Medical Journal)
Fertility treatment, breast density and breast cancer (Breast Cancer Research)
Reproductive technology linked to birth defects, childhood leukemia (Reuters Health)
Could IVF Raise Children’s Chances of Blood Cancer (MedicalXpress)
Too Many Couples Receiving Unnecessary IVF, Study Says (Irish Times)
IVF Women Third More Likely To Develop Ovarian Cancer (UK – Telegraph)
Picture Emerging on Genetic Risks of IVF (The New York Times)
IVF: Risks May Outweigh Benefits (Medical News Today)
Treating Unexplained Infertility: Answers Still Needed (Harvard Medical School)
IVF Linked to Rare Genetic Disorders (Canada – National Post)
IVF Clinics to Inform Patients on Birth Defect Risks (UK – Sunday Times)
The Truth About Freezing Your Eggs (TIME)
The Sobering Facts About Egg Freezing That Nobody’s Talking About (WIRED)
Fertility Research Drugs Put Egg Donors At Risk (UK – The Telegraph)
‘We Simply Don’t Know’: Egg Donors Face Uncertain Long-Term Risks (StatNews)
Emotional Health
Same medicine, different reasons: Comparing women’s bodily experiences of producing eggs for pregnancy or for profit (Journal of Social Science & Medicine)
Psychological Aspects of Infertility (British Journal of Medical Practitioners)
The Dark Side of Fertility Treatments (Psychology Today)
Selling the Fantasy of Fertility (New York Times)
Psychology of Infertility (Chapman University)
Fertility Chief Calls For Clarity on IVF Pros and Cons (BBC News)
IVF and The Marketing of Hope (BBC News)
Fertility treatments may put women at risk for PTSD symptoms, study suggests (NBC News)
Failed IVF Attempt Tied to Depression, Anxiety (Reuters)
Childless Women and Infertility (Psych Central)
Infertility Procedures & Bioethics
IVF Success Rates ‘Misleading’ (Medical Xpress)
POV- It’s Time to Regulate the Fertility Industry – (Boston University)
Assisted Reproduction – (Frontline)
Hiding deadly long term consequences of prolonged hormonal inductions is unethical (British Medical Journal)
Ethical and Psychosocial Impact of Female Infertility (University of Texas)
The U.S. Won’t Fund Human Genetic Germline Engineering, but the UK Might
Are Clinics Telling the Truth About IVF Success Rates? (Australia)
Infertility Related Academic Research
IVF Success Rates ‘Misleading’ (University of Manchester)
Fertility Awareness Among American University Students (Chapman University)
Study: Recovery From Traumatic Loss: A Study Of Women Living Without Children After Infertility (UPenn)
Study: Variation in Distress Among Women With Infertility (Oxford Journal)
Changing Fertility: Social, Demographic and Ethical Consequences of Assisted Conception Technologies (BioNews)
Study: “Trying” Times: The Medicalization, Intent, and Ambiguity in the Definition of Infertility (Alfred University)
Exploring Epistemic Injustice Through Feminist Social Work Research (Karen Bell explores women’s experiences of assisted reproduction and injustice)
Constructions of “Infertility” and Some Lived Experiences of Involuntary Childlessness (Karen Bell argues that the dominant construction of “infertility” is partial, biased, and inaccurate and that it serves to maintain infertility as a “woman’s problem” to be addressed ideally via biomedicine)
Study: Examining PTSD as a Complication of Infertility
Grassroots Groups & Initiatives
Our Bodies Ourselves (Trusted information on sexuality and reproductive health)
We Are Egg Donors (Grassroots group whose mission is to advocate for any health initiatives that make donor health a top priority)
Facts about ART (compiled by health and human rights advocate and Cracked Open author Miriam Zoll)
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Success stories have had a disproportionate amount of visibility while the flip side, the more common outcome — fertility treatment failures — remain under-reported, as this reader recently made clear in an email:
Thanks so much for these resources. Does anyone know of some good resources for men adjusting to involuntary childlessness?
You totally rock for putting this list together, Pamela. Love you!