In this new era, the individual woman or couple has gained more options to make an informed choice of whether or not to have reproductive screening. In principle, the availability of high-quality testing and the ability to make an informed choice might be welcomed as a positive aspect of present-day health care in modern democracies.
At the same time, it is relevant to note that individual choices add up to a collective effect: reproductive screening may become an increasingly ‘normal’ thing to do. Even if societal pressure is not explicit, implicit norms, comments and expectations from friends and family may frame the choices individuals can make. The sum of the individual choices may result in a ‘collective eugenics’ as visible in the number of screening tests being performed and in the reduction of the live births of foetuses with serious disorders that can be detected prenatally.
This mechanism, which is a cause for unease, can be demonstrated in other reproductive testing, such as Preimplantation Genetic Diagnosis (PGD) and will certainly surface again when new free foetal DNA testing is considered.
In the Netherlands, in 2008, PGD became the focal point of a public debate and almost caused the downfall of the Cabinet (Huijer 2009
). PGD had been applied rather unproblematically on a very small scale, for a handful of couples with a high risk of serious disorders in their offspring. When the government prepared new regulation of this practice, a public debate ensued in newspapers and on the television, among other things, over the question of whether disorders that are not fully penetrant, such as hereditary breast cancer, would also be eligible for PGD. Although patient groups, ethicists, and newspaper commentators, for instance, in the liberal newspaper NRC (NRC 2008
), pleaded for this application pointing to the severity and high penetrance of the disorder, most notably representatives of Christian political parties and Christian patient groups called for a ban on this type of testing, arguing for the right to life and against eugenic tendencies (e.g. Kuiper 2008
). Issues of (expected) scale figured anew as did the notion of the democratic right to make an informed choice (depicted as opposed to a ‘religiously ordained’ morale).
Whenever new technological options in prenatal testing become available, debate is called for to discuss the social and ethical ramifications. Especially, the tension between individual choice and the collective effects of creating a society without room for handicaps or illness, as a new form of collective eugenics, reappears. In the light of this tension, we would like to draw upon our Dutch historical case study to discuss the role of the government and public debate. Evidently, the role and responsibilities of the government have changed during the years. Instead of banning screening that was found to be unsound and was perceived to have negative societal consequences, the government increasingly has taken up the responsibility to implement new forms of reliable reproductive testing and screening in an ethically sound manner, for instance, by providing adequate information and enabling informed choice, thereby changing the notion of protection. In addition, continuing efforts are necessary to boost the quality of testing and personnel performing the test. It is vital that policy should be in place to ensure standards of care for the handicapped, in order for people to have a real choice of whether to have testing or not, an issue that had already been raised in an earlier Health Council of the Netherlands (1989
In modern democracies, public debate is essential for discussing values and practices implicated by governmental policy. It should be possible to voice a range of arguments for or against screening, and shed light on the mixed blessings and complexities involved (see also Huijer (2009
)). Until recently, both human geneticists and bioethicists have (rightfully) stressed the importance of taking the individual as a focal point when considering genetic testing. Given the recurrent argument of collective eugenics, public debate might be used to reflect on the ramifications of individual choice. Debate has just started on the host of ethical issues involved in whole genome sequencing, including sequencing of foetal DNA. Aside from the difficulty of analyzing and interpreting the data, issues include determining what information to report to parents and the right of the future child not to know its genetic makeup (Health Council of the Netherlands 2010
; de Jong et al. 2010
). Though this debate still seems confined to small groups of experts, the expected advent of free foetal DNA testing will soon open this debate to a wider audience. If or when such testing becomes a reality, the experiences with the standard anomaly scan might hold important lessons as to the difficulties in counselling and guiding parental reaction to information that may not always be conclusive about the nature of the suspected anomaly. In popular literature, accounts of how to deal with prenatal screening and foetal anomaly scan information, and how to live with the difficult decisions based on that information are appearing (Slagboom 2011
). For societal actors, enriching public debate may entail discussing concepts and accounts of living with or without impairments and assimilating genetic information about oneself or one’s offspring. These concepts change over time and instead of a ‘collective eugenics’, we might be able to discuss and produce new collective, yet varying images of ‘the good life’.