The National Health Law Program (NHeLP) has developed a set of principles to guide its advocacy work on assisted reproduction (AR). Founded in 1969, NHeLP protects and advances the health rights of low-income and underserved individuals and families. NHeLP has a long history of working to improve access to reproductive and sexual health services. NHeLP strives to bring an intersectional lens to this work by acknowledging the often-complex ways that people’s multiple identities impact their reproductive and sexual health as well as their decisions and desires about reproduction.
These principles are meant to further our goal of continuously examining the health care system and advocating for health laws and policies that counteract structural barriers, institutional power dynamics, and instances of overt discrimination and implicit bias that create health inequities
Assisted reproduction (AR) refers to treatments, interventions, or procedures that are intended to cause or assist in causing pregnancy through means other than by sexual intercourse. One well-known technology is in vitro fertilization (IVF) in which mature oocytes are removed from the ovary and fertilized with sperm in a laboratory, and the resulting embryo is introduced into the uterus.*
In addition to IVF, AR may include intracervical insemination (ICI) and intrauterine insemination (IUI), intracytoplasmic sperm injection (ICSI), gamete intrafallopian transfer, zygote intrafallopian transfer, and tubal embryo transfer.** AR may or may not involve third parties—including sperm, oocyte, and embryo donors, as well as gestational surrogates—and may or may not involve embryo or gamete (oocyte or sperm) cryopreservation (freezing).
Click on the following link to download NHeLP Principles on Assisted Reproduction
Why we drafted these principles
NHeLP has a long history of working on issues of reproductive rights, health, and justice, focused especially on the needs of people who are low-income, have disabilities, are BIPOC, and are LGBTQ+. Many NHeLP staff also have lived experience with assisted reproduction from their own lives and families. While NHeLP has worked on assisted reproductive issues in a limited way, staff recently noticed an increase in our work in this area. We are responding to individual requests for technical assistance and support from local advocates who provide direct services to people around the country. We are also receiving technical assistance requests related to potential legislation that would mandate coverage of certain AR interventions in various states and in Congress.
Out of this experience, NHeLP staff identified a need to better understand the scope of assisted reproduction and respond to requests for technical assistance. Particularly in the context of reviewing potential legislation, NHeLP needed to determine when and on what types of legislation the organization will take a public position.
Assisted reproduction is important to NHeLP because it stands at an intersection of many different facets of our work. It relates to reproductive rights, health and justice, disability rights, LGBTQ+ issues, and health equity. Those who will most benefit from progressive, comprehensive, rights-based AR policies or laws are low-income, BIPOC, LGTBQ, and other historically oppressed communities. Many of the same oppressions and inequities that NHeLP works to address have played a role in shaping the current field of assisted reproduction. For example, the influence of white supremacy and capitalism have resulted in a “market” for certain services such as egg donation and surrogacy that have resulted in many young, low-income, women of color providing these services for older, wealthy, white women and couples. Simultaneously, and contrary to racist assumptions, Black women and other women of color have lower fertility rates than their white counterparts but often lack the resources to afford expensive infertility treatments and therefore are less likely to access AR. In addition, homophobia, transphobia, and sexism have resulted in laws that do not recognize the parental rights of same-sex couples and trans people unless they participate in certain medicalized methods of family creation. Further, homophobia and ableism have led to restrictions on assisted reproduction that make it inaccessible to people with HIV and people with disabilities. NHeLP’s work seeks to expose these inequalities and assure that assisted reproduction is available in an equitable, inclusive, and non-exploitative way.
We recognize the importance of reproductive autonomy and that decisions regarding the use of genetic testing in conjunction with AR are intensely personal, private decisions. We also recognize that such decisions do not exist separate and apart from broad social, political, and economic constructs that are all too often ableist, as well as sexist, heterocentric, transphobic, and racist. Thus, as we undertook this endeavor, we grappled with how to align values as we operate within these constructs. We recognized that our values are at times in tension with one another, though they are not fundamentally contradictory. To help us navigate these tensions, we specifically sought out partnerships with other organizations to inform our analysis.
How we drafted these principles
Four NHeLP staffers – Elizabeth McCaman Taylor, Jennifer Lav, Abbi Coursolle, and Fabiola Carrión – developed an initial draft document which they reviewed with various members of the organization, including the Legal Director and the Director of Reproductive and Sexual Health in 2019. These staff incorporated edits to the draft and provided an updated draft to NHeLP’s internal Affinity Groups, including the Disability Affinity Group, the LGBTQ+ Affinity Group, and the BIPOC Affinity Group, and ultimately all staff in late 2019, incorporating input along the way.
In early 2020, staff began soliciting input from a few external partners. This culminated in a convening of a small group of trusted partners held in October 2020, where NHeLP staff received additional valuable feedback. NHeLP is grateful to the following partners who consulted with us and shared their expertise: Elizabeth Gill, ACLU of Northern California; Sam Crane, Autistic Self-Advocacy Network; Nourbese Flint, Black Women For Wellness; Karla Torres, Center for Reproductive Rights; Trystan Reese, Trans Fertility Co. and Collaborate Consulting; Cathy Sakimura, National Center for Lesbian Rights; and Robyn Powell, Stetson University College of Law. One of the requests that came out of the convening was that NHeLP develop a public-facing version of the principles to share with other organizations. We have developed a statement of principles to serve that purpose.
What these principles do and do not include
Our principles reaffirm our belief that bodily autonomy and self-determination are at the core of disability rights and reproductive rights, health, and justice. Intended parents must have the right to make informed, personal decisions, including the decision to use genetic testing or other screening in conjunction with other reproductive technologies. We also reaffirm that we must take action to dismantle ableism and structural oppression where it exists, including in genetic counseling, so that prospective parents can make truly informed decisions.
NHeLP has developed these principles to guide our work based on our knowledge and expertise. We acknowledge that they do not address all facets of assisted reproduction. For example, these principles do not address the impact of choices about AR on parental rights, particularly for donors or surrogates, because we do not have the necessary expertise in the area of family law or ethics to weigh in on this area. We also do not address the rights of children created using AR, the appropriate role of DIY assisted reproduction or non-clinic-based interventions, donor registries and the role of anonymous donation, traditional surrogacy, and the ethics of “designer babies.” In addition, these principles may not fully anticipate future technologies. While we attempt to articulate some considerations for policy makers as technologies and practices evolve, we will review and revise them to account for the changing scientific, ethical, and policy landscape. We welcome input as our work and these principles continue to evolve.
* An oocyte is a human egg. A gamete is a human egg and sperm. An embryo is a multicellular fertilized egg. See Jessica Arons & Elizabeth Chen, Ctr. for Am. Progress, Future Choices II: An Update on the Legal, Statutory, and Policy Landscape of Assisted Reproductive Technologies (2013), https://cdn.americanprogress.org/wp-content/uploads/2013/03/ChenAssistedReproduction.pdf.
** Intracervical insemination (ICI) is a type of artificial insemination that involves inserting sperm into the cervix. Intrauterine insemination (IUI) is a procedure that involves inserting sperm past the cervix and directly into the uterus. Intracytoplasmic sperm injection involves a tiny needle, called a micropipette, that injects a single sperm into the center of the egg. Gamete intrafallopian tube transplantation removes the egg and sperm and then introduces them into the fallopian tube immediately. Zygote intrafallopian transfer is a technique where the egg is fertilized outside the body then implanted in a fallopian tube. Id. See also Healthline Parenthood, Everything You Need to Know About Artificial Insemination, https://www.healthline.com/health/artificial-insemination#side-effects (last visited Sept. 23, 2021).