By Devin Shuman, MS, CGC and Jenny Rietzler, MS, CGC
Okay, so we now are all well aware that there is endless perpetuation of LGBTQIA+ Discrimination in the ASRM recommendations. Time for another hard truth – the guidelines also discriminate against people who have disabilities, genetic conditions, and/or are neurodiverse. When we hear the term eugenics (also sometimes referred to as “misguided genetics”) – the holocaust and mass genocides may come to mind. However, we should also consider eugenic practices as they relate to prenatal and preconception genetic testing. Eugenics is defined as “the practice or advocacy of controlled selective breeding of human populations (as by sterilization) to improve the population’s genetic composition”. Positive eugenics refers to practices that encourage “the fittest,” those with the “best” genetics to breed (remember learning about the Better Babies and Fitter Family contests). Negative eugenics is the practice of preventing the “undesirables” from procreating (e.g. forcible sterilization).
By requiring a certain set of attributes to be considered as a gamete (egg or sperm) donor and by prohibiting those with other attributes from being donors, the ASRM guidelines are advocating for both positive and negative eugenic practices.
Do we have the right to tell any individual what traits or achievements they should look for in a reproductive partner? We’d argue no. When companies and professional societies decide that certain traits and conditions disqualify individuals from donating – we are taking away an individual’s freedom of choice and imposing an ableist eugenic agenda onto individuals who require, or desire, assisted reproductive technology (ART) to reproduce. With holding these guidelines up as “medical recommendations,” we are furthering biased social, medical, and societal pressures on family planning decisions. “These are not free…choices. They are choices based on anxieties and a misapprehension of what it means to be disabled.” Everything is done within the context of societal biases and norms.
The list of conditions, diagnoses and attributes that ASRM lists as exclusionary for consideration of donors is long. Here are just a few examples:
- Cerebral palsy
- “Major” birth defects (spina bifida, cleft lip or palate, clubfoot, etc).
- ADHD that could be considered “severe” or “impacts” daily functioning
- “Serious mental illness” – major depression, bipolar, schizophrenia
- Medical conditions that “require lifelong medication or frequent medical follow-up” (hearing loss, epilepsy, vision loss, cardiac conditions, diabetes, etc.)
- Multiple relatives with severe symptoms or young ages of onset (hypertension, asthma, thyroid conditions, arthritis, etc.)
Who has the right to determine what medical conditions we classify as “severe?” To decide that your daily life is “impacted enough” that your quality of life would be a burden to the next generation? If ASRM was concerned simply with making sure everyone were informed consumers of the reproductive, endocrinology, and infertility (REI) industry – wouldn’t it be sufficient to require that these conditions are disclosed, instead of saying that people with a personal or family history of them should be disqualified from donating?
What if someone who is neurodivergent wants to find an autistic donor? Too bad, they’ve all been disqualified. Considering that every condition listed above affects a significant portion of the general population (such as diabetes affecting 10-30%), we’re insinuating that the offspring of most potential parents would not be “optimized outcomes”. You don’t have to be forcibly sterilizing “undesirables” to be promoting white ableist supremacy – you just have to prevent parents from having access to donors who reflect diversity.
If we just wanted to make sure potential parents were informed of the “risks,” then ASRM would require donor banks to confirm what donors report for their history, via medical or education records, and would have guidelines for when banks need to reach out to families with medical/family history updates. If this was about “optimizing safety and outcomes,” why do we accept a single snapshot of a donor’s life without any fact-checking? And why have we not historically included the opinions of people who were conceived with this technology? Such as giving them the right to know updates about the medical/family history of their donor and their donor’s family. If this was about the “well-being” of future families then why in the world are we not centering the opinions from the actual lives that are being created?
So often in reproductive genetics we talk about reproductive options, including natural conception, IVF, egg or sperm donors, embryo donation, and adoption, without disclosing the barriers (financial, ableism, racism, etc.) individuals will likely face in accessing these options. Many (if not most) people cannot afford IVF treatments (which can total over $15-30k). If you’re disabled, there’s an increased chance that adoption agencies may not approve you as a “fit” parent and that donors will not reflect your traits. Where does this leave individuals?
When a system is broken and perpetuates harm, many end up going outside of the system – which brings up its own potential risks. Instead of writing off individuals who chose to do this as being “irresponsible,” we argue that genetic counselors are uniquely trained to step up and provide preconception counseling to individuals planning to use, or be, a self-found donor. We should provide genetic counseling that supports each person’s interests, goals, and values (instead of ASRM’s). Here at Genetic Support Foundation, we welcome these referrals as an honored chance to be a part of this future family’s path to reproduction.