Bioethics. Группа авторов

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Название Bioethics
Автор произведения Группа авторов
Жанр Медицина
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Издательство Медицина
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isbn 9781119635154



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case it would amount to a non‐identity‐affecting technology.7 Following the first interpretation, CRISPR cannot be considered a therapy as, by virtue of its use on an embryo, it determines the kind of person that is brought into being rather than pre‐emptively curing the same pre‐person. On the contrary, if we are inclined to follow the second interpretation, then CRISPR is therapeutic as it pre‐emptively cures an embryo that will develop into a numerically identical child that does not have the genetic condition that is consciously avoided.8 It is only in this second sense that it is possible to say that if the genome of an embryo affected by a certain genetic condition is modified and this condition eradicated, then this embryo will develop into a numerically identical child who, had CRISPR not been used, would have been affected by a genetic disease. As a consequence, even if one does not subscribe to the embryo‐as‐persons view, there is a sense whereby genome editing can be considered at least more similar to therapy than to selection: genome editing would be a pre‐emptive treatment for the genetic disease that is caused by the genetic mutation at the embryonic stage.

      If the second interpretation about genome editing being non‐identity‐affecting is embraced, then both the teleological objection (i.e. PGD is morally problematic because it does not fall within the traditional ends of medicine) and the selective attitudes objection (i.e. PGD is morally problematic because it promotes selective and discriminatory attitudes) seem to be less applicable to the use of genome editing on embryos to prevent the occurrence of certain conditions in future children. As explained above, editing the genome of embryos can be considered pre‐emptively therapeutic and thus falls within (or at least closer to) the traditional ends of medicine. From this, it also follows that it would be problematic to consider such practice as selective or discriminatory: disability scholars would have to condemn all the interventions aimed at treating genetic diseases (Barnes 2014).

      These clarifications have normative implications, namely that, once the safety of editing the genome of human embryos is carefully assessed, the latter technology should be considered preferable to PGD. In the next section, I will outline some additional questions that need to be addressed and explain why preferring CRISPR over PGD is not completely cost‐free.

      In the previous sections, two main questions have remained unaddressed. One question is on the value and meaning of genetic parenthood. Another, albeit related, question concerns the ethics of existing alternatives. I explore these two questions in this last section and conclude that they provide at least some prima facie moral reasons for carefully considering the introduction of a new reproductive option when similar options are already available.

      A peculiar feature of assisted reproductive technologies such as PGD, and possibly genome editing, is that they are often offered to prospective parents who are affected by a genetic condition in order to conceive (or increase their chances of conceiving) healthy offspring. It is in this sense that these technologies represent a solution for those prospective parents whose problem is the impossibility of having a genetically related and healthy child; or at least healthier than the child that would otherwise be brought into the world had these technologies not be employed. As explained in the first section of this paper, there are other options than PGD to increase the chances of having healthy children, but they entail refraining from having genetically related children (for one individual in the couple or, in the case of adoption, both parties). Reproductive technologies such as PGD and genome editing convey the interests of different groups: the prospective parents, the future offspring and the society where these offspring will grow and thrive. Despite the importance of all three stakeholders, their interests are not granted equal importance: the welfare of future children and the reproductive autonomy of the prospective parents are usually considered of greater moral importance than the aggregate interests of society in having healthy members, respecting competing values on assisted reproduction, and limiting the use of certain technologies against a backdrop of scarce resources. This is what I define as the received view on the ethics of assisted reproductive technologies. An ethical assessment of whether introducing new technologies in the context of reproduction should thus consider these three aspects (with the aforementioned prioritisation in mind) in turn.

      Reproductive autonomy, child welfare and the interests of society

      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.