Generations Ahead brings diverse communities together to expand the public debate and promote policies on genetic technologies.
Reproductive Rights & Justice
Assisted reproductive technologies have enabled millions of people around the world to have biologically-related children who would otherwise be unable to do so. Technologies such as prenatal genetic testing and pre-implantation genetic diagnosis are seen as providing prospective parents the opportunity to have children without disabilities. At the same time, there are profound worries about the technologies and their uses. These include: health risks for women and children; disparities in access, precluding some groups from the benefits the technologies offer; the potential the technologies have to become instruments of exploitation and commodification; and, most important of all, their capacity to devalue some human beings, especially those with disabilities or already marginalized groups. Generations Ahead seeks to bring diverse voices and perspectives to the discussion of these technologies so that all of us can play a role in guiding policy on these critical and fast-emerging issues.
New developments
Over the last 30 years, more than three million babies have been born worldwide using assisted reproductive technologies. These technologies have enabled millions of people to have genetically-related children who would otherwise not have been able to do so, including: infertile women and men; single people; and LGBTQ individuals and couples. The technologies expand options for family formation and offer hopeful possibilities for those seeking to have biologically-related children.
There is no question that there has been a great deal of demand for these technologies. As a result, the fertility industry is now a thriving business, estimated to be worth $3-5 billion a year in the US. There are nevertheless pressing questions about the ethics of several practices and about the lack of regulation of the industry as a whole.
Advances in reproductive technologies have occurred in concert with advances in genetic technologies. Prenatal testing and preimplantation genetic diagnosis, a process that detects inheritable genetic conditions in embryos, can now test for hundreds of conditions, potentially allowing some parents the ability to have children without disabilities. Though much of society embraces the option to avoid having a child with a disability, these practices may reinforce negative attitudes toward people with disabilities. They also raise troubling questions about the future possibility of selecting for other traits such as sex, hair color, or “genetic intelligence.”
Concerns
Reproductive and genetic technologies pose health risks for women and children. Women undergoing egg retrieval face short-term risks associated with the hormones they take to stimulate egg production, while the longer-term risks are still unknown. Women using assisted reproductive technologies also have a higher rate of multiple births and face the many associated risks. Studies of children’s health risks have focused on in vitro fertilization, which can impact infant health in the form of low birth weight, premature birth, infant death, and congenital disabilities, primarily due to the high incidence of multiple gestations common with this procedure. In vitro fertilization has also been associated with an increased risk of developmental delays and cerebral palsy in children, though results are not conclusive.
Another concern relates to the disparity in access to the benefits of new reproductive technologies. Since the technologies are generally expensive, and since no state benefits – and few insurers – cover them, they are only accessible to people who can afford them. Another critical barrier to access is discrimination by state laws or fertility clinics, which often limit coverage or services to married heterosexual couples, thus excluding single people, domestic partners and LGBTQ individuals and couples.
An additional consideration is the potential for exploitation implicit in some of these the technologies, in particular egg donation and surrogacy. High payments to donors or surrogates, especially those who are young, low-income or from a poor country, may be exploitative by taking advantage of women’s economic vulnerability. By recruiting women solely for their reproductive material or capacity, these practices may also contribute to the commodification of women’s bodies.
Perhaps the most pressing concern about these technologies has to do with their potential to devalue people. Although prenatal genetic testing and preimplantation genetic diagnosis have been seen as offering parents the opportunity to have “healthy” children, what constitutes “health” is a contested notion. One can have a disability and still be healthy. Yet many prospective parents select against disability based on a lack of information and negative societal assumptions about it. When technologies are used to select against disability, social norms that devalue people with disabilities are reinforced; when used to select against girls, as sometimes happens in South and Southeast Asian communities, social norms that devalue women are reinforced.
Though originally designed to screen for genetic disease, some fertility clinics are already promoting procedures to select for traits such as eye and hair color and “complexion,” and could in the future be used for intelligence, height, and other traits, thus raising the specter of “designer babies” and launching a new phase of human eugenics.
Key questions
What role should the government or the market play in the regulation and oversight of reproductive and genetic technologies?
Do payments for egg donation or surrogacy exploit economically vulnerable women? Do new reproductive technologies treat women’s reproductive capacity and materials as commodities?
Does supporting a woman’s right to choose whether or not to have a child also include supporting the right to choose what type of child she has?
Join the dialogue
Invite us to brief your organization on these issues and to discuss these critical questions. We can be reached at 510-832-0852 or .(JavaScript must be enabled to view this email address).