The very idea of reproductive rights rests on the notion that individuals, as potential parents, have a right to freely decide whether they will have children, how many children they will have, as well as when they will have them. Eugenics has come into conflict with these rights in the past, as certain individuals were either encouraged to have children, or prevented from doing so, based on their possessing certain traits. Modern reproductive technologies have introduced new dimensions to family planning, and have therefore also changed the relationship of family planning to eugenics. Prospective parents can now choose how to have children (natural birth, caesarean section, surrogacy), and also have some say in what kind of children they will have. Given this latter choice, parents are increasingly unlikely to carry through with pregnancies when the foetus possesses some disabling, or less than desirable, trait. Not only is this a different kind of eugenics in terms of the individuals targeted—children who are not yet born, as opposed to individuals who may pass on bad genes—it is also different than past eugenic policies as it is driven by individual (parental) choice rather than state ideology—it relies heavily on the notion of reproductive rights, rather than coming into conflict with them.
According to the Canadian Public Health Association, the earliest instances of family planning can be traced back to 3000 BCE Egypt, when condoms were invented (CPHA, n.d.). Today many different forms of birth control are available to help individuals plan whether or not to have children, how many children to have, when to get pregnant, and how long to wait between pregnancies.
With the development of drugs to induce labour and the surgical technique of caesarean section, parents, or at least mothers, were offered another choice: how to have their children. Surrogacy offered yet another option, and women could “out-source” pregnancy if they were physically unable to carry the child themselves, or if they simply had no desire to be pregnant. Further advancement in reproductive technologies, and specifically the option of sperm or ova donation, gave potential parents the ability to influence what kind of children to have. Prospective parents had to choose a donor, and often did so by considering that donor’s physical characteristics, interests, intelligence, or general demeanour. The results, however, were not guaranteed, as transmission of those traits was not well understood.
As knowledge about the human genome increased, and reproductive technologies became more advanced, prospective parents gained more control over the traits that their future children would have. First, this control was gained by understanding the genetics behind traits like gender, hair colour, and disease. Second, and perhaps more important, was the development of the ability to perform genetic tests and determine (1) whether prospective parents risked passing on a hereditary disease to their children, or (2) whether an already existing embryo or foetus possessed a particular trait.
Testing for prospective parents was developed first, and is more colloquially known as carrier testing. With the knowledge that they risk passing on a genetic illness to their children, prospective parents could take steps to prevent this from happening. The most straightforward way to do so is to simply replace the “defective” genes by choosing a sperm or ova donor who does not carry the problem gene, and then proceeding with artificial insemination or in-vitro fertilization (IVF).
Prospective parents who would rather be biologically related to their children and who do not want to pass on the hereditary problem require a different solution. Given the facts of heredity, there is always a chance that the child, naturally conceived, could avoid the hereditary disease: all that is needed is a means of determining whether a particular child possesses the problem gene. Enter pre-implantation genetic testing (PGD), a process by which cells are removed from a developing embryo and are tested for genetic problems before being implanted into a uterus and allowed to develop into a child. By using PGD, prospective parents could "conceive" a number of embryos using IVF, test those embryos to see whether they will develop the hereditary disease, and implant only the healthy embryos.
However, it is possible to test for more than just severe hereditary disease, and there is a distinct lack of regulation on PGD. For example, in the province of Quebec, three rounds of IVF are covered by provincial health care, and applications for PGD are reviewed on a case-by-case basis. Quebec does take care to specify that PGD may only be used in cases of “serious genetic disease,” but does not go on to specify the features that a genetic disease must have in order to qualify as “serious.” This means that there is no set of criteria to help determine whether PGD is appropriate: the decisions of committee members who review requests for PGD are based on the testimony of prospective parents and their own medical opinions.
Reviewing PGD decisions in this way may not seem immediately problematic, but the issues associated with this method become more obvious when you consider the biases of the health professionals involved. When they consider whether or not PGD is appropriate, they are primarily concerned with whether the condition being tested for is a deviation from the healthy norm, and are perhaps not as concerned with whether a person could live a happy and fulfilling life with the condition in question. In other words, their motivation is one of procreative beneficence: they want to ensure that children are born healthy, and that they will be able to lead happy and fulfilling lives. Therefore, doctors and genetic counsellors are likely to guide prospective parents, either directly or indirectly, towards implantation of the “healthiest” embryo, that is, the embryo without any genetic abnormalities that would cause the child to grow up disabled.
However, there is a problematic assumption here: those who defend the implantation of “healthy” embryos on the basis of procreative beneficence tacitly assume that “being unhealthy,” “abnormal,” or “disabled” precludes being happy and fulfilled. This assumption has been shown to be, at least sometimes, incorrect: when asked about the quality of their own lives, individuals who are disabled report a quality of life only slightly lower than that reported by nondisabled people, and much higher than that projected by nondisabled people (Amundson, 2005). Further, in cases where disabled people report a low quality of life it would be important to ask why this is the case: is this report due to their disability, or is it due to the limitations imposed on them by the society in which they are disabled? It may be true that certain serious conditions do negatively affect life in a way that would justify PGD, but this subset of disabilities is probably much smaller than many assume.
Given these facts, doctors and genetic counsellors who are advising potential parents on PGD ought to take care and provide accurate information, and should also avoid blindly linking “disability” or “abnormality” to “suffering.” Further, guidelines on the use of PGD ought to carefully distinguish “serious” from “non-serious” genetic diseases, thus providing a way for providers to determine when PGD is appropriate. Finally, given that this eugenic practice is driven by individual choice and a desire for procreative beneficence, as opposed to state ideology, it is important to educate potential parents as to what disabled individuals are capable of, and to provide families with the support they need to ensure that their children live the best lives possible.
Amundson, Ron. (2005). Disability, ideology, and quality of life: A bias in biomedical ethics.” In David Wasserman, Jerome Bickenbach and Robert Wachbroit (Eds.),Quality of Life and Human Difference. New York: Cambridge University Press.
Bauer, Patricia E. (2008). ‘Tell then it’s not so bad': Prenatal screening for Down Syndrome and the bias toward abortion.” Intellectual and Developmental Disabilities, 46(3), 247-251.
Canadian Public Health Association. History of family planning in Canada. (Accessed May 2014). Retrieved from http://www.cpha.ca/en/programs/history/achievements/04-fp/history.aspx
Government of Quebec. (2013, November 1) Preimplantation genetic diagnosis. Quebec Assisted Reproduction Program. (Accessed May 2014). Retrieved from http://sante.gouv.qc.ca/en/programmes-et-mesures-daide/programme-quebecois-de-procreation-assistee/diagnostic-genetique-preimplantatoire/