Читать книгу Bioethics - Группа авторов - Страница 147

Genome editing, at first sight, seems to score high on the reproductive autonomy and welfare of the child fronts: unlike PGD, it allows for more conditions to be corrected and the reduction of the occurrence of certain genetic conditions in future generations; it also increases the reproductive autonomy of the parents by offering not only one more possibility in the geneticists tool‐box, but also by allowing those couples for whom PGD is not always successful to have biologically related, healthy offspring. So far so good. Or maybe not? The idea that more choice leads to greater freedom has been challenged (Dworkin 1982; Rose 1999; Rothman 1985). More options can also translate into more uncertainties, and greater perceived and actual responsibilities for the prospective parents (Dworkin 1982). In this sense, introducing genome editing into the clinic as an alternative to PGD may be detrimental for the very same prospective parents that it is designed for. While genome editing may be more routinely employed in the future, some issues will likely remain. These issues include, for instance, reflections upon which conditions should be eligible for the use of genome editing and whether parents who fail to employ the most efficient technology available could be considered morally responsible (Rothman 1985).

What about the welfare of the future child? The empirical question of whether safety concerns will be put to rest and genome editing will ever be safe enough to represent a concrete alternative to PGD divides scholars (Harris 2016). The reasons for this are twofold: first, no one knows the answer to such questions yet. Secondly, this empirical question is strongly influenced by the value judgements of scientists, ethicists, policy‐makers and the public on the degree of certainty required to move forward. Hence, even without denying that such empirical questions will be eventually be put to rest, it is still important to note that a consensus on the question of safety will be hard to reach due to the competing values at stake in stakeholders’ assessments. Those taking a precautionary stance concerning technological development will favour existing technologies over the newly discovered, while those who are generally in favour of technological development will be ready to accept a higher degree of risk in the name of such progress and of the potential benefits that it may yield. With respect to the safety and the welfare of the future child, whether genome editing really represents a better option than PGD will thus divide scholars, scientists and the public (and, as exemplified by the debate on embryo‐applications of CRISPR, already does). A decision on whether to allow genome editing will thus have to rest not only on a thorough assessment of the safety of the techniques, but also on a democratic process that takes into account such differing views and values (Cavaliere 2017; Jasanoff et al. 2015; Kitcher 2001). The ethical assessment of new techniques ought to not only rest on a cost/benefit analysis, but also on an evaluation of existing alternatives, including those that do not rely on biomedical means. In other words, whether genome editing really represents a worthy alternative to existing options (such as PGD) depends on the extent to which the welfare of the future child can be put at risk to allow couples to have a genetically related child. Regulators and ethicists that argue in favour of eventually replacing PGD with genome editing, and couples for whom PGD does not represent an option, will have to consider whether reproductive autonomy should trump questions on the welfare of the child in light of uncertainty.

Lastly, what role should societal interests and views play in the decision over whether genome editing should replace PGD? There are different ways in which assisted reproductive technologies and procreative decisions more generally impinge on society. Procreative decisions influence the type and the number of people that will be created. They allow new consumers, producers, workers, mothers, fathers, etc. to come into existence. We live in an increasingly interlinked world and the aggregate effects of individual decisions affect a wider range of people than ever before (Singer 2004). There are historical reasons why third parties’ interventions in procreation are looked at with suspicion, and the shadow of eugenics seems to extend over any discussion regarding reproductive technologies and their governance (Paul 1992). Despite these worries, the regulation of new reproductive technologies will be influenced by governments’ policies, which in turn will reflect the interests of society and societal views on emerging reproductive technologies. Regarding the governance of genome editing technologies and their potential use in the context of assisted reproduction, the interests of society might play a role in two main ways: the first is whether genome editing is ethically acceptable for a large segment of society (Kitcher 2001), and second, related, is whether existing alternatives warrant the introduction of a new practice and the clinical research necessary to safely implement it. Almost every new technology introduced or discussed for potential introduction in reproduction seems to stir controversies. The recent debates on genome editing (Camporesi and Cavaliere 2016), mitochondrial replacement techniques (Appleby 2015) and ‘older’ debates on PGD (Scott 2006) are just a few instances of these controversies. However, once certain uses are constrained and lines drawn (for instance between therapeutic and enhancing uses), these technologies have been approved and, at least in certain countries, accepted by large swaths of the population. Thus, even if genome editing will be met with controversies and will encounter resistance, it does not prima facie translate into the need for banning any research involving it. On the contrary, this should translate into support for a democratic and deliberative approach to the governance of technological innovation (Jasanoff et al. 2015) and into the respecting of competing moral views on these issues (Cavaliere 2017).