{"id":4587,"date":"2023-06-27T16:08:01","date_gmt":"2023-06-27T16:08:01","guid":{"rendered":"https:\/\/blog.geneticsupportfoundation.org\/?p=4587"},"modified":"2023-06-27T16:11:19","modified_gmt":"2023-06-27T16:11:19","slug":"discrimination-and-eugenics-in-the-american-society-for-reproductive-medicine-asrm-guidelines-for-gamete-and-embryo-donation-a-series","status":"publish","type":"post","link":"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/06\/27\/discrimination-and-eugenics-in-the-american-society-for-reproductive-medicine-asrm-guidelines-for-gamete-and-embryo-donation-a-series\/","title":{"rendered":"<strong>Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series<\/strong>"},"content":{"rendered":"\n<p><em>By Devin Shuman, MS, CGC and Jenny Rietzler, MS, CGC<\/em><\/p>\n\n\n\n<p>Okay, so we now are all well aware that there is endless perpetuation of <a href=\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/02\/20\/lgbtqia-discrimination-and-eugenics-in-the-american-society-for-reproductive-medicine-asrm-guidelines-for-gamete-and-embryo-donation-a-series\/\">LGBTQIA+ Discrimination<\/a> in the <a href=\"https:\/\/www.asrm.org\/globalassets\/asrm\/asrm-content\/news-and-publications\/practice-guidelines\/for-non-members\/recs_for_gamete_and_embryo_donation.pdf\">ASRM recommendations<\/a>. Time for another hard truth &#8211; 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 \u201cmisguided genetics&#8221;) &#8211; 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 <a href=\"https:\/\/www.merriam-webster.com\/dictionary\/eugenics\">defined<\/a> as \u201cthe practice or advocacy of controlled selective breeding of human populations (as by sterilization) to improve the population&#8217;s genetic composition\u201d. <em>Positive eugenics<\/em> refers to practices that encourage \u201cthe fittest,\u201d those with the \u201cbest\u201d genetics to breed (remember learning about the <a href=\"https:\/\/www.smithsonianmag.com\/history\/better-babies-contests-pushed-infant-health-also-played-eugenics-movement-180971288\/\">Better Babies<\/a> and <a href=\"https:\/\/www.npr.org\/sections\/pictureshow\/2011\/06\/01\/136849387\/found-in-the-archives-americas-unsettling-early-eugenics-movement\">Fitter Family<\/a> contests). N<em>egative eugenics<\/em> is the practice of preventing the \u201cundesirables&#8221; from procreating (e.g<a href=\"https:\/\/www.npr.org\/sections\/health-shots\/2016\/03\/07\/469478098\/the-supreme-court-ruling-that-led-to-70-000-forced-sterilizations\">. forcible sterilization<\/a>).&nbsp;<\/p>\n\n\n\n<p>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.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Do we have the right to tell any individual what traits or achievements they should look for in a reproductive partner? We\u2019d argue no. When companies and professional societies decide that certain traits and conditions disqualify individuals from donating &#8211; we are taking away an individual\u2019s 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 \u201cmedical recommendations,\u201d we are furthering biased social, medical, and societal pressures on family planning decisions. \u201c<a href=\"https:\/\/dsq-sds.org\/article\/view\/1369\/1501\">These are not free\u2026choices. They are choices based on anxieties and a misapprehension of what it means to be disabled.\u201d<\/a> Everything is done within the context of societal biases and norms.<\/p>\n\n\n\n<p>The list of conditions, diagnoses and attributes that ASRM lists as exclusionary for consideration of donors is long. Here are just a few examples:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>Autism&nbsp;<\/li><li>Cerebral palsy<\/li><li>\u201cMajor\u201d birth defects (spina bifida, cleft lip or palate, clubfoot, etc).&nbsp;&nbsp;<\/li><li>ADHD that could be considered \u201csevere\u201d or \u201cimpacts\u201d daily functioning<\/li><li>\u201cSerious mental illness\u201d &#8211; major depression, bipolar, schizophrenia<\/li><li>Medical conditions that \u201crequire lifelong medication or frequent medical follow-up\u201d (<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC1733928\/pdf\/v030p00510.pdf\">hearing loss<\/a>, epilepsy, vision loss, cardiac conditions, diabetes, etc.)<\/li><li>Multiple relatives with severe symptoms or young ages of onset (hypertension, asthma, thyroid conditions, arthritis, etc.)<\/li><\/ul>\n\n\n\n<p>Who has the right to determine what <a href=\"https:\/\/www.nature.com\/articles\/s41431-021-00962-2\">medical conditions we classify as \u201csevere?<\/a>\u201d To decide that your daily life is \u201cimpacted enough\u201d 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 &#8211; wouldn\u2019t 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?&nbsp;<\/p>\n\n\n\n<p>What if someone who is <a href=\"https:\/\/www.theguardian.com\/commentisfree\/2015\/dec\/30\/screening-sperm-donors-autism-autistic-eugenics\">neurodivergent wants to find an autistic donor<\/a>? Too bad, they\u2019ve all been disqualified. Considering that every condition listed above affects a significant portion of the general population (<a href=\"https:\/\/diabetesresearch.org\/diabetes-statistics\/\">such as diabetes affecting 10-30%<\/a>), we\u2019re insinuating that the offspring of most potential parents would not be \u201coptimized outcomes\u201d. You don\u2019t have to be <a href=\"https:\/\/www.geneticsandsociety.org\/biopolitical-times\/forced-sterilization-policies-us-targeted-minorities-and-those-disabilities-and\">forcibly sterilizing<\/a> \u201cundesirables\u201d to be promoting white ableist supremacy&nbsp; &#8211; you just have to prevent parents from having access to donors who reflect diversity.&nbsp;<\/p>\n\n\n\n<p>If we just wanted to make sure potential parents were informed of the \u201crisks,\u201d 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 \u201coptimizing safety and outcomes,\u201d why do we accept a single snapshot of a donor\u2019s 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 <a href=\"https:\/\/donorsiblingregistry.com\/industry-issues#new_in_the_industry\">right to know updates about the medical\/family history<\/a> of their donor and their donor\u2019s family. If this was about the \u201cwell-being\u201d of future families then why in the world are we not centering the opinions from the <a href=\"https:\/\/www.wearedonorconceived.com\/\">actual lives that are being created<\/a>?<\/p>\n\n\n\n<p>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 (<a href=\"https:\/\/www.forbes.com\/health\/family\/how-much-does-ivf-cost\/\">which can total over $15-30k<\/a>). If you\u2019re disabled, there\u2019s an increased chance that <a href=\"https:\/\/ncd.gov\/publications\/2012\/Sep272012\/Ch10\">adoption agencies may not approve you<\/a> as a <a href=\"https:\/\/www.asecondchance-kinship.com\/disability-does-not-equal-incompetence-removing-biases-against-parents-and-caregivers-with-disabilities-in-child-welfare\/\">\u201cfit\u201d parent<\/a> and that donors will not reflect your traits. Where does this leave individuals?&nbsp;<br>When a system is broken and perpetuates harm, many end up going <a href=\"https:\/\/www.theatlantic.com\/family\/archive\/2021\/05\/free-sperm-donation-groups-facebook\/618941\/\">outside of the system<\/a> &#8211; which brings up its <a href=\"https:\/\/www.refinery29.com\/en-gb\/2022\/05\/10962609\/facebook-sperm-donor-groups\">own potential risks.<\/a> Instead of writing off individuals who chose to do this as being \u201cirresponsible,\u201d 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\u2019s interests, goals, and values (instead of ASRM\u2019s). Here at Genetic Support Foundation, we welcome these referrals as an honored chance to be a part of this future family\u2019s path to reproduction.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>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 &ndash; the guidelines also discriminate against people who have disabilities, genetic conditions, and\/or are neurodiverse. When we hear the term &hellip;<\/p>\n<p class=\"read-more\"> <a class=\"\" href=\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/06\/27\/discrimination-and-eugenics-in-the-american-society-for-reproductive-medicine-asrm-guidelines-for-gamete-and-embryo-donation-a-series\/\"> <span class=\"screen-reader-text\"><strong>Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series<\/strong><\/span> Read More \u00bb<\/a><\/p>\n","protected":false},"author":1,"featured_media":4588,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"site-sidebar-layout":"default","site-content-layout":"default","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","footnotes":""},"categories":[63,15],"tags":[16],"class_list":["post-4587","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-genetic-counseling","tag-genetic-counseling"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v19.13 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series - Gene Cuisine: satisfying your appetite for genetic news and information<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/06\/27\/discrimination-and-eugenics-in-the-american-society-for-reproductive-medicine-asrm-guidelines-for-gamete-and-embryo-donation-a-series\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series - Gene Cuisine: satisfying your appetite for genetic news and information\" \/>\n<meta property=\"og:description\" content=\"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 &ndash; the guidelines also discriminate against people who have disabilities, genetic conditions, and\/or are neurodiverse. 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Time for another hard truth &ndash; the guidelines also discriminate against people who have disabilities, genetic conditions, and\/or are neurodiverse. 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