TABLE OF CONTENTS: 1. Introduction - 2. Gene editing using the CRISPR/Cas9 technique - 3. Civil Liability for Damages Arising from the Failure to Use Gene-Editing Technology; 3.1 Protection of the Individual and Its Relationship to the Concept of Existential Harm; 3.2 Assessing Harm to One’s Life Plan in the Context of Gene Editing; 3.2.1 Scenario in which the technique is scientifically recognized but is unavailable due to a lack of legal framework; 3.2.2 Scenario in which the technique is available but with limited access; 3.2.3 Scenario in which the technique is available but was not used due to a diagnostic error; 3.2.4 Scenario in which the technique is available but was not chosen—4. The Applicability of Wrongful Actions in the Context of Gene Editing - 5. Concluding Remarks - 6. References.
1. Introduction
With the implementation of the revolutionary gene-editing technology—CRISPR/Cas9 —a tool capable of making significant interventions in segments of human DNA—the potential for future development of therapeutic and preventive alternatives has expanded for severe, hereditary diseases that are, in most cases, incurable and difficult to treat.
Although the technique has democratized gene editing due to its low cost, ease of use, and high degree of precision, its application in germline cells and embryos has sparked intense debate and faces barriers to acceptance worldwide.
It is essential to address not only ethical dilemmas but also issues related to the impact of future and unknown risks posed by this new technology. The uncertainty regarding harmful effects arising in the context of civil liability cannot be overlooked. In this regard, it is justified to address relevant topics, including the expansion of the precautionary function of civil liability, liability for development risks, the applicability of liability exclusions, the importance of public regulation of negative externalities, and the general protection of personality rights.
On the other hand, it is also necessary to address issues—though still hypothetical—in the event that this technique becomes a viable therapeutic option, given that its non-use could also entail potentially harmful effects. Thus, once a genetic alteration or deficiency has been diagnosed—provided it is correctable through gene editing—refusing to perform the procedure would entail harm that is known to have significant, decisive, prolonged, and often lifelong repercussions on that individual’s life.
Even considering that a recurring concern regarding innovative technologies is the possibility of harm resulting from their use, one cannot deny the potential for harm in the opposite scenario, as well as the possible implications in the context of civil liability.
2. Gene editing using the CRISPR/Cas9 technique
The synergistic convergence of four major fields of knowledge—nanotechnology, biotechnology, information and communication technologies, and neuroscience (Converging Technologies for Improving Human Performance—2001) (1) has led to a significant increase in these technologies’ capacity to bring about changes in society and the environment. This rapid and concerted development—characterized primarily by the blurring of the boundary between the physical and biological sciences—has driven the unprecedented advances in medicine over the past few decades. Against this backdrop, the new and revolutionary CRISPR/Cas9 gene-editing technique has emerged, unveiling an unpredictable range of possibilities for mapping serious genetic diseases, which are mostly incurable, generating positive expectations regarding preventive measures and the creation of new therapeutic alternatives in humans (2).
The CRISPR/Cas9 system (clustered regularly interspaced short palindromic repeats) (3) functions as a kind of “genetic text editor” that enables the correction, inactivation, or deletion of genes carrying mutations (4). Groundbreaking studies have shown that the Cas9 endonuclease, together with a guide RNA molecule, can be programmed to specifically cleave any animal or plant DNA sequence (5). Since then, the technique’s applicability has become widespread, and it has been possible to use it with significant efficiency, ease, and at low cost in basic research, biotechnology, and the development of new strategies for prevention, diagnosis, and treatment. In addition to democratizing human genome editing, the CRISPR/Cas9 technique represents a major advance in biological research, standing out as one of the most important discoveries of the 21st century (6).
Although CRISPR/Cas9 technology has generated enthusiasm regarding the potential for effective treatments for complex and incurable diseases, not all of its impacts are positive. Thus, as is the case with most innovative technologies, one of the major challenges of studies involving the CRISPR/Cas9 technique relates to the unknown risks inherent in its use. Of particular concern are the likelihood of mosaicism (7) and/or off-target mutations (unintended or non-target mutations) (8).
Even considering its preventive therapeutic benefits, due to its novelty, potential for harm, and the possibility of causing permanent changes in DNA—with a potential impact on future generations—this technology has sparked intense debates, particularly in the realm of civil liability. Certainly, in the field of biotechnology, it is not uncommon to discuss potential—or even uncertain—risks when dealing with novel technologies, as is the case with the CRISPR/Cas9 gene-editing technique. Consideration is given not only to its legitimacy but also to its potential legal repercussions. A broader discussion of the topic is essential, which also involves devising other strategies to address the challenges of civil liability in the face of “unknown risks” in the context of gene editing (9) (10). In these studies, the authors emphasize the importance of analyzing the topic both in Brazil and in comparative law (“liability for unknown risks”). In this context, they highlighted the importance of strict liability, particularly with regard to the risk inherent in the activity, the peculiarities surrounding the analysis of causation, as well as the controversial discussion regarding the acceptance of unknown risk as a ground for exclusion of liability (the Brazilian perspective, and in accordance with European Directive 85/374) (11).
Certainly, in the field of biotechnology, discussions regarding potential or even uncertain risks are not uncommon when dealing with unprecedented technologies, such as the gene-editing technique CRISPR/Cas9. Consideration is given not only to its legitimacy but also to its potential legal repercussions. A broader discussion of the topic is essential, which implies devising other strategies to address the challenges of civil liability in the face of “new risks.”
In this context, there is a need to adapt the monofunctional model of civil liability beyond its compensatory function (liability). The pluralistic perspective on its applicability is reflected in the need to broaden its conception beyond the compensatory function, recognizing its multifunctional nature through an appeal to individual responsibility, coupled with an emphasis on preventive and promotional functions (responsibility, accountability, answerability) (12).
In contrast, technological advancements aimed at reducing such risks have been exceeding expectations. Researchers are successfully dedicated to developing bioinformatics tools and advancing the technology of RNA guides and Cas9 endonucleases, which are becoming increasingly precise and specific (13) (14). Therefore, it is estimated that, in the near future, once the technical limitations are overcome, CRISPR/Cas9 will no longer be a distant reality but will become part of the daily routine in cell biology, genetics, and embryology laboratories. In this regard, a new analytical perspective is needed, given that there is no denying that technical challenges have been overcome and precise limits—both ethical and legal—have been established so that gene editing can, in fact, represent a viable therapeutic option.
3. Civil Liability for Damages Arising from the Failure to Use Gene-Editing Technology
In a new scenario—still hypothetical, yet irrefutable—in which gene editing for therapeutic purposes (medical indication) becomes a viable and safe option, denying, prohibiting, or failing to offer this opportunity would explicitly constitute a denial of a fundamental right—namely, the right to life. However, this is not a matter of the right to organic life, nor—in a complete reversal—the right to a fulfilling life—an aspiration that cannot be “guaranteed” at the state level under any legal system.
What is sought is the protection of the right to life in potential—that is, access to life not in a merely formal sense, but to a life made materially possible by health, economic, and educational resources and, why not, equally strengthened by state-of-the-art technological tools. This is a dynamic conception of primary goods within Rawls’s concept of the social minimum (15).
Here we borrow the concept from Nietzschean ethics of life as the “Will to Power” (16), present in everything from the simplest chemical reactions to the complexity of the human psyche. Human beings cannot and do not wish merely to preserve themselves or adapt in order to survive; they want to expand, create values, and give meaning to their own lives. This means being active in the world, creating their own conditions of power. It is a process of self-realization in the encounter with other forces. Everything in the world is the Will to Power because all forces seek their own expansion. Force as overcoming, as a constant pushing beyond one’s own limits.
This is not an argument in favor of transhumanism (17) in the sense of accepting humanity as an evolving project through the use of techniques to overcome our physical, psychological, and intellectual limits (enhancement). The aim is to make it possible to remedy human impairments through the democratization of access to technologies that safeguard or promote personality rights.
This gives rise to another discussion: in the face of a refusal to use available technology to correct impairments, would we be dealing with a new form of harm? What would be its nature and extent? Given its irreversibility and magnitude, would we be dealing with existential harm?
Any attempt at an answer requires an understanding of the connection between the potential right to life and any violation of substantive freedom that infringes upon interests concretely deserving of protection, at the very moment when the objective conditions for the material exercise of a non-prohibited action or for choosing the course of one’s own life are arbitrarily taken away from the victim.
In some situations, objecting to the use of gene-editing technology would effectively amount to making a choice regarding another person’s life, thereby preventing that person from being the protagonist of their own existence and compromising their freedom and future prospects. From this perspective, the harm caused would undermine the ideals that enable a person’s fulfillment as a human being (their self-realization) (18), even preventing the realization of their “life plan” (19).
Nevertheless, we are not considering only the self-realization of a being who is yet to come. Denying, prohibiting, or failing to offer gene editing is behavior that violates this fundamental component of our sense that life is worth living. But it is not just about this. The term “transcendence” suggests the existence of a desire to help others reach their potential. It is a loyalty to a cause beyond ourselves, driving us to identify purposes external to the “self” and enabling others to maintain the value of their existence (20).
From a constitutional perspective, the fundamental right to freedom (self-realization) grants every human being a modus vivendi and a unique lifestyle; however, the fundamental right to solidarity opens the door to transcendence—a concept that becomes even more tangible when the “other” is not limited to the “collective” or “future generations,” but to one’s own descendants.
3.1. Protection of the Person and the Relationship to the Concept of Existential Harm
Given the growing recognition of the need to protect against situations that cause harm extending beyond an individual’s psychophysical injury and going beyond non-pecuniary personality rights, it has become essential to discuss the expansion of the concept of harm, particularly from a functional perspective. For the legal doctrines that justify this need, the main argument is the lack of a legal category capable of addressing the right to compensation for harm caused to a person with regard to other fundamental values of human life.
In this regard, it is essential to identify the criteria that define the existential interest deserving of legal protection, thereby avoiding the indiscriminate use of the concept of existential harm, which could compromise its effective recognition and valuation. This does not mean encompassing, within the context of existential harm, any detrimental change in a person’s daily life, nor a change that is not legally relevant. Such harm must be quantitatively and qualitatively relevant from a legal perspective, since it would affect the person’s dignity and significantly compromise their integrity. It is therefore justified to demonstrate how the concept of existential harm could be applied in a specific case, specifically based on the epistemological framework proposed in this study.
Preliminary discussions recognizing the greater need to protect individuals in their life-affirming activities (21) were influenced both by Italian legal doctrine (22) and by precedents from the Inter-American Court of Human Rights (23). Thus, in an unprecedented move, it was proposed to treat harm to the person as a refined category of civil liability—that is, a specific type of non-pecuniary harm. In this context, the autonomous category of “existential harm” was established, encompassing any harmful and legally relevant alteration to the existence of the injured person. From that point onward, efforts to expand the protection afforded to a person’s existential values have intensified.
In this scenario, the protection of the person is not restricted solely to those rights expressly or explicitly provided for in the Constitution and the Civil Code (24). From this perspective, the idea that any harm to a person must be protected becomes more robust (25). Furthermore, damage to one’s life plan (26) (27) and damage to one’s social relationships (28) have been defined as constituent elements of existential harm.
Consequently, harm caused to a person’s existence has been defined as that which is capable of generating a negative and legally relevant impact on the person’s daily life, causing a harmful, total or partial, permanent or temporary alteration in their fulfilling activities, including an involuntary renunciation of a normal state of life. It should be noted that these fulfilling activities would even include those related to meeting basic needs such as food, personal hygiene, and basic education. These situations—involving the loss of the ability to perform simple acts and the objective deprivation of the ability to carry out normal, everyday activities—are even more readily evident when a person’s physical integrity is compromised (29).
Thus, the frustration arising from the individual’s unmet expectations regarding their own development as a person would represent harm of a severity and scope incomparable to the injuries caused by other types of harm. More destructively, this harm has the potential to create an existential void, affecting the freedom—albeit abstract—that each person possesses to choose their own destiny and shape their life, which would result in the erosion of any prospect of a minimally fulfilling present and future. Furthermore, it would not affect only the sphere of the person’s inner suffering, but would also manifest externally through the pain caused by the inability to engage in hedonistic activities. The consequences of existential harm would therefore extend beyond the changes brought about in the way a person projects themselves into the world, also affecting their relationships with others (30).
It should also be noted that, depending on the specific case, by hindering the performance of acts of paramount importance for personal self-realization, existential harm can transform the ordinary aspects of daily life into genuine challenges, moments of anguish, tension, and profound difficulty. Following this line of reasoning, harm to one’s life plan would constitute an aspect of existential harm related to the practical impediment to performing acts essential to the fulfillment of personal goals and aspirations capable of giving meaning to one’s existence (31).
Beyond this analysis, one must also consider that existential harm involves an aspect of “potentiality” regarding the activities a person would have been capable of performing had they not suffered the harm. It is, therefore, in this sense that civil liability for existential harm would be justified as harm resulting from a thwarted life plan, in which the extent of the harm would be measured in relation to what can no longer be attained (32).
Another distinctive feature of existential harm is that, although it occurs at a specific point in the individual’s life, its harmful potential extends throughout the victim’s entire life, preventing them from achieving self-actualization. For this reason, those who advocate this theory are unanimous in linking existential harm to the disruption of a projected future (failure in the pursuit of one’s life plan), in which subsequent, timeless losses—which carry an essentially existential value—are taken into account. It is further understood that the disruption of this quest—which has the potential to give meaning to each person’s life—when caused by factors beyond the individual’s control (injustice, discrimination, violence) must be considered particularly grave (33). Although this new category of harm is not yet consistently supported by Brazilian legal doctrine, there is evidence of its application in national case law (34), where it has sometimes been referred to as “existential harm,” at other times as “harm to one’s life plan,” or, more controversially, as a synonym for “moral damage.”
Existential harm was not expressly identified in the Brazilian legal system until Law No. 13.467/2017 included, in the Consolidated Labor Laws (CLT), provision 223-B in Title II-A (“Non-Pecuniary Damages”), correctly distinguishing between moral damage and existential damage as subcategories of the broader category of “non-pecuniary damages” (35). Once evidence of their applicability has been established through an analysis of case law, and given the presence of evidence of harm caused to the individual, there is no denying the right to due compensation, even if this requires the creation of a new category of protection for personal harm through an amendment to the Civil Code, as recommended in the CLT. After all, despite the commendable trend toward recognizing the multifunctionality of civil liability, there is a solid social consensus that the primary function of non-contractual liability remains the redress of damages, supported by the principle of full compensation (36).
3.2. Assessing Damage to One’s Life Plan in the Context of Gene Editing
In the event that gene editing becomes a viable therapeutic option—a situation that is still hypothetical, yet undeniable— one must question the harmful effects of not using it, especially in cases of genetically determined, incurable diseases that limit an individual’s autonomy and may even compromise their dignity. Could one conceive of intergenerational harm? The deliberate omission of gene editing appears to be an offense that unfolds over time, for what makes us human spans generations and ultimately serves as a bridge between them.
In this context, it is not difficult to see that, only through gene editing, it would be possible to prevent harm of significant magnitude—harm with permanent consequences that limit an individual’s ability to live out their own choices, compromising their destiny, subjecting them to daily sacrifices, and trapping them in an existential void.
In this situation, questions arise regarding the likelihood of harm to one’s life plan in the context of gene editing. In other words, once a genetic alteration has been diagnosed—and if it is correctable through gene editing—failing to perform the correction will result in harm that is known to have significant, decisive, prolonged, and often permanent repercussions on that individual’s life.
However, in order to visualize such situations, it is necessary to outline some scenarios in which this might apply (37).
3.2.1. Scenario in which the technique is scientifically recognized but is unavailable due to a lack of legal framework
Even assuming that, from a scientific standpoint, gene editing has advanced sufficiently to be recognized as a therapeutic option, it must be acknowledged that its acceptance and legal framework will depend on the specific contexts of each country. Sociocultural factors, as well as economic development, can influence this process. In the absence of legal support, the possibility of performing gene editing becomes unfeasible, leaving individuals to cope with the harm resulting from this constraint.
In this situation, another important issue should be highlighted. Since the option to undergo the procedure in their country of origin does not exist, and driven by the desire to avoid the harm resulting from the genetic conditions diagnosed in the embryo, parents resort to medical tourism.
3.2.2. Scenario in which the technique is available but with limited access
It is undeniable that, when implemented clinically, these techniques will entail high costs, which may even hinder their coverage by health insurance plans. Even if gene editing, in and of itself, is not a costly technique, its clinical implementation requires combining it with assisted reproductive technologies, in vitro fertilization, and preimplantation genetic diagnosis—all of which are known to be expensive.
Inevitably, this could limit access to the technology for certain social groups, thereby creating unequal opportunities. Under these circumstances, the decision not to use the technique would not be a choice made by the parents. Rather, this choice would result from a lack of financial resources, making it impossible to prevent the harm resulting from the genetic alteration diagnosed in the embryo. The key is to establish public policies that direct CRISPR/Cas9 technology to serve humanity—as a tool for mapping serious hereditary diseases and not as a utilitarian eugenic technique— especially in the context of an extremely unequal society, where the issue of access is structurally delicate even for essential goods (education, basic health care, social assistance, housing).
3.2.3. Scenario in which the technique is available but was not used due to a diagnostic error
In such cases, the failure to diagnose genetic alterations lies with the physician or laboratory responsible, respectively, for the diagnosis and the performance of the tests. This failure—which may result from negligence or even omission—is what justifies the non-use of the gene-editing technique.
In addition to the potential harm to the embryo—due to the loss of the opportunity to correct genetic alterations—there is also harm caused to the parents, whose right to make a free and informed decision regarding whether or not to continue the pregnancy has been curtailed (termination as provided for by law) (38).
In both situations, the opportunity to have the genetic alterations or anomalies corrected through gene editing is lost, which results in inevitable harm that is potentially irreversible, of significant severity, and likely to limit expectations for personal development.
3.2.4. Scenario in which the technique is available but was not chosen
Considering the reproductive reality of prospective parents at high risk of having children affected by serious genetic diseases, it can be said that gene editing constitutes yet another reproductive alternative, expanding options and thereby ensuring greater reproductive autonomy in the parenting plan.
However, since it is an alternative, gene editing will not always be the chosen option. From this perspective, one must consider the significant influence that cultural, intellectual, and religious factors have on parents’ decision-making capacity, as they directly affect their understanding and acceptance of the clinical indication for the technique.
If parents, acting in accordance with their reproductive autonomy, decide to proceed with the birth without undergoing gene editing, they would be choosing not to make use of the available therapy, despite a diagnosis confirming the clinical indication for gene editing. A different situation would be that of a natural pregnancy in which such investigations occur only in the face of well-founded suspicions, which considerably reduces the likelihood of a diagnosis and, therefore, the option to correct any detected abnormalities.
Despite the unquestionable significance of the harm to the embryo in both situations, there is a notable difference in liability for the harm when the decision is made not to proceed with gene editing despite a prior diagnosis. In such cases, the occurrence of harm is intrinsically linked to the parents’ decision; by disregarding the possible consequences of the harm, they limit the yet-to-be-conceived child’s ability to exercise its freedom of choice regarding life.
In this context, it becomes even more relevant to analyze the choice that parents impose by not opting for gene editing, the consequences of which have the potential to result in a life of curtailed autonomy, restricting the existence of the other, insofar as it fails to prevent harm capable of impeding or altering an entire life plan (39).
4. The Applicability of “Wrongful Actions” in the Context of Gene Editing
In this context, it is possible to outline—beyond the cases where the irreversibility of the harm resulting from the non-use of the technique applies—the legal consequences of this decision within the scope of civil liability.
Of particular note are situations in which the technique was available but was not used on a specific occasion, either due to a failure in genetic counseling or due to the parents’ conscious decision not to undergo it.
In the first case, as already mentioned, the issue is a failure in the genetic counseling process (40)—both due to a lack of clarification regarding the availability of diagnostic tests (including, here, the ineffectiveness of informed consent) and due to the possibility of diagnostic error (false-negative diagnosis).
Through the genetic counseling process, it would be possible not only to identify potential hereditary diseases but also to warn parents of their consequences. Such guidance for couples wishing to have children is essential. Consequently, defective or inadequate genetic counseling gives rise to various practical and legal consequences (41).
Failure to perform existing and available tests or examinations—particularly in cases of high-risk pregnancies—would constitute a violation of the patient’s right to information, self-determination, and personal autonomy. Similarly, such violations may occur when a physician issues a false-negative diagnosis (diagnostic error). This error, considered a false perception of reality, represents an incorrect or deficient interpretation of the evidence, leading to a diagnosis that is also incorrect or deficient—and, therefore, a false negative (42).
In both cases, when the disease or anomaly goes undetected through the counseling process, the opportunity to perform therapeutic embryo selection (the option not to implant) is lost—that is, the chance to perform gene editing is lost. It follows from the foregoing that gene editing, despite being a practice still under development, already presents itself as a practical consequence of genetic counseling. As a result, legal consequences are emerging in the pursuit of civil damages for what is known as “wrongful birth” (43).
In this situation, in addition to the potential harm to the embryo resulting from the loss of the opportunity to have genetic alterations corrected (gene editing), there is also harm caused to the parents, whose right to make a free and informed decision is curtailed—whether regarding the continuation of the pregnancy (as provided for by law) (46), or regarding the performance of gene editing (45) (46) (47).
Even more controversial, but no less important, is the debate surrounding the possibility that, even if the editing technique is available, it may not be used due to a conscious and deliberate choice by the parents. In such a case, where preimplantation diagnosis combined with gene editing would constitute viable therapeutic alternatives for the yet-to-be-conceived children affected by genetic alterations, could a poor decision on the part of the parents give rise to liability? Given the parents’ decision to continue the pregnancy without attempting to correct the genetic defect, would it be justifiable for the child to later seek compensation from the parents? Could these alternatives, made possible by technological advances, be considered legally valid? (48) (49) (50).
Given this scenario, it is essential to discuss the appropriateness of compensation on the grounds of “wrongful life.” A claim for damages based on the “wrongful life” of a child born with a severe disability or illness is filed by the child (duly represented, when applicable) against the physician and/or the parents themselves. When the claim is brought against the physician, it is based on the failure to detect the disability or genetic disease, resulting, consequently, in a failure to provide genetic counseling (51). In this case, the parents are deprived of the right to choose to terminate the pregnancy (depending on legal permission) or to undergo gene editing. When filing a lawsuit against the parents, the basis would be their decision to proceed with the birth of a child with a disability or illness, even while aware of the disability or illness, and even while rejecting the option to resort to measures capable of mitigating such harm (52) (53) (54).
It should be noted that, in the case of a claim involving the issue of “wrongful life,” the analysis is quite complex, requiring consideration not only of the framework of civil liability but also of personality rights, in line with ethical and pragmatic arguments.
In fact, the reproductive reality of parents at high risk of having children affected by serious genetic diseases changes in a scenario where gene editing emerges as a possible alternative. In this new context, options are expanding, safeguarding both the reproductive autonomy and the prospective autonomy of parents, since children with disabilities are the parents’ lifelong responsibility, which can have adverse effects on their physical and mental health (55).
We refrain from weighing in on the debate regarding the feasibility of someone seeking compensation simply for having been born. Nor do we advocate the nihilistic view of preferring death to a life marked by severe disability (56). In fact, the controversy surrounding gene editing differs from what occurred in France—whether in the famous Perruche affair or in other situations in which doctors were sued for failing to detect physical or mental disabilities in fetuses, thereby precluding the option of abortion, which had been consented to by mothers who were duly informed of the risks. In France, the debate centered on the loss of a chance for the “future” of lives marked by great suffering (a dubious causal link, capable of driving eugenic practices if such claims were successful). However, in the context of gene editing, the vexata quaestio is the potential civil liability for a tort in which the victim would not be an unborn child, or even a pre-embryo, but rather a yet-to-be-conceived child—an “expectation of what is to come,” existing in the realm of uncertainty. The yet-to-be-conceived child has not yet entered into existence, and the only legislative reference to it pertains to testamentary succession (Art. 1799, I, CC), in the capacity of a child not yet conceived by a person designated by the testator. This is the classic “potential offspring,” which may come into existence in the future (57).
Certainly, the yet-to-be-conceived child does not qualify as a person, nor does it fall within the intermediate category of a potential for life to which special protection is granted (the cryopreserved surplus embryo). In testamentary succession, the yet-to-be-conceived child emerges through legislative design, justifying legal protection of a purely patrimonial nature. However, what would be the normative framework to overcome this legislative constraint, thereby supporting a claim for civil liability for harm directed at the yet-to-be-conceived child? In our view, the basis lies in the comprehensive protection of the potential right to life. To the extent that live birth is understood as an effective condition precedent for receiving an inheritance and acquiring economic rights, intrauterine conception is, in turn, the defining event marking the emergence of the person and the consequent protection of their personality, even if the unlawful conduct occurred prior to the embryo’s implantation in the mother’s uterus and the damages are only perceived and assessed after birth (58).
A rhetorical exercise with strong persuasive power is warranted here. The decedent no longer holds personality rights, yet his or her existential attributes never cease to exist as belonging to no one, transcending his or her passing. The “memory of the deceased” is worthy of two-fold protection—inhibitory and reparatory—through the family, with each member acting in their own name, in response to torts committed against the deceased’s honor, image, and name. Symmetrically, this reasoning extends to the dawn of life. The yet-to-be-conceived child is a mere hypothesis of being; it is not yet a subject of rights. However, a tort directed against it supersedes the pre-fertilization stage, encompassing its life and existence (59).
Consequently, in theory, it is feasible for children to hold parents liable for risky conduct associated with infections such as HIV, or excessive alcohol consumption—e.g., Fetal Alcohol Syndrome—or drugs, whose potentially harmful effects will be detected later, in certain cases even during pregnancy. The same reasoning permits claims for damages arising from the transmission of genetic disorders previously known to the parents. Crucial: this does not advocate holding parents liable for the birth of children with disabilities, but rather for the commission of unlawful acts, on the understanding that a preventive function of civil liability requires that the fundamental duty of care be extended to justify the protection of the yet-to-be-conceived child (60).
Alongside the endless debate regarding the starting point for the acquisition of personality rights, the fundamental right to life must be realized in a way that embodies a dignified and fulfilling life in accordance with the historical context of each community, with the lex artis being an integral part of this. It should also be argued that, even in the face of harm caused by a breach of a professional duty toward the parents (medical malpractice), the child will be protected under that treatment contract (61) (62).
It should also be noted that the direct victim (in the case of a child born with a disability) is the child itself, due to its increased needs—not only during childhood but continuously throughout life. Although the parents, while caring for the child, are considered indirect victims, it is the person born with the disability who will have to endure that condition throughout their entire life.
Therefore, the pragmatic logical argument that, in wrongful life claims, the child would have no right to compensation—since without the negligent conduct (of the doctor or parents) the child would not even have been born (would not have been created)—would not hold up. Furthermore, regardless of whether or not the child’s birth was linked to the negligent conduct, the counterfactual standard of comparison should be that of a person without disabilities—that is, a fully functional person (63). In fact, a wrongful life lawsuit seeks to compensate not for a loss, but for a gain: the very fact of a person’s existence (64).
We understand that in such a claim, what is at issue is not the assessment of life as a value or lack thereof; the child’s right to existence is not denied, nor is it asserted that non-existence would have been preferable to existence as such. On the contrary, what is sought is compensation for the increased costs imposed by a particular life situation (living with a disability) (65). Thus, the compensation represents exclusively the monetary equivalent of the basis for liability, which lies in the failure to recognize the disability (66). It is precisely respect for the human person that justifies the claim for compensation, in order to sustain life with a minimum of material conditions and dignity (67).
6. Concluding Remarks
Addressing the issue of the violation of a fundamental right in the context of genetic editing presents an excellent opportunity to broaden the scope of civil liability by establishing the autonomy of the purpose of asserting constitutionally protected rights, as opposed to the traditional redress for pecuniary and non-pecuniary damages. Rather than correcting the consequences of the wrongful act, the wrongful act itself is rectified through compensation, regardless of what would have happened had the wrongful act not occurred. With regard to harm to one’s life plan—regardless of any moral or economic repercussions affecting third parties—the tort of violating a human being’s substantive freedom—even in the future of a yet-to-be-conceived child—by those who fail to fulfill the general duty of care to employ available and safe technology—is a sufficient cause for a life of deprivation. Compensation conveys the important message of reinforcing the moral duty to value human life in potential.
We are discussing events that have not yet materialized but that will inevitably occur, since the availability of this technology is unavoidable due to its undeniable benefits. Likewise, considering the forward-looking role of legal doctrine, we anticipate potential legal conflicts arising from the failure to adopt genetic editing.
And this makes perfect sense. In his 1979 classic, The Principle of Responsibility (68), Hans Jonas addresses the scope of techno-scientific development, reflecting on innovations that carry vast and powerful consequences capable of affecting the quality of life and life itself on the planet. According to Jonas, the ethical response to these challenges does not lie in the “heuristics of fear” but rather in accepting new technologies and confronting people with a previously unprecedented responsibility, which can be translated into risk management—currently characterized by an interaction between legislation and regulation, embodied in preventive parameters, and involving the planning for risks with the greatest negative impact.
Indeed, we do not underestimate the potential harmful effects arising from the adoption of gene-editing technology within the realm of civil liability. However, by invoking the precautionary function of civil liability and liability for development risks—especially with regard to existential situations—we offer as a necessary counterpoint the imminence of the technique becoming a viable therapeutic option and the fact that its non-use would entail a violation of fundamental rights. To reiterate what was stated in the introduction, refusing to perform this procedure would entail harm that is known to have a significant, decisive, prolonged, and often permanent impact on that individual’s life.
(1) BAINBRIDGE, W. S.; MONTEMAGNO, C.; ROCO, M. C. (ed.) Converging technologies for improving human performance: nanotechnology, biotechnology, information technology and cognitive sciences. NSF/DOC-sponsored report. Arlington, Virgínia, 2002. Disponível em: https://obamawhitehouse.archives.gov/sites/default/files/microsites/ostp/bioecon-%28%23%20023SUPP%29%20NSF-NBIC.pdf. Acesso em 20 Jun 2022.
(2) GODINHO, A.M. et al. Viver, Envelhecer e Morrer no contexto das novas tecnologias no séc. XXI e as reflexões jurídico-filosóficas da revolução trashumanista. In: COLOMBO, C.; FALEIROS JÚNIOR, J.L.M; ENGELMANN, W.(Org.). Tutela jurídica do corpo eletrônico – Desafios ao Direito Digital. Indaiatuba, SP: Editora Foco, 2022, p. 147-171.
(3) JINEK, M. et al. Programmable Dual-RNA-Guided DNA Endonuclease in Adaptive Bacterial Immunity. Science, 337(6096), 816–821. doi:10.1126/science.1225829, 2012.
(4) CRISPR/Cas9 - This is a complex consisting of an endonuclease-type enzyme (Cas9) guided to the specific region of the DNA molecule (the target gene) intended for editing by means of a gRNA molecule programmed to recognize the specific DNA sequence. Thus, the DNA fragment containing the mutation is replaced with a normal sequence, enabling the correction of the disorder. The gRNA molecule can be customized to recognize specific DNA sequences by altering just 20 nucleotides. In this way, specific genes can be targeted by the gRNA and, consequently, by Cas9, which allows for precise modifications of those genes (REYES, A.; LANNER, F., Towards a CRISPR view of early human development: applications, limitations and ethical concerns of genome editing human embryos. The Company of Biologists, n. 144, p. 3-7, 2017).
(5) KNOTT, Gavin J.; DOUDNA, Jennifer A. CRISPR-Cas guides the future of genetic engineering. Science, v. 361, n. 6405, p. 866-869, ago 2018.
(6) The Royal Swedish Academy of Sciences. Scientific Background on the Nobel Prize in Chemistry 2020. A tool for genome editing. Disponível em: https://www.nobelprize.org/uploads/2020/10/advanced- chemistryprize2020.pdf. Acesso em: 09 jun 2022.
(7) “Mosaicism is the presence in an individual or in a tissue of at least two genetically distinct cell lineages, both of which are derived from a single zygote. Mutations that occur in a single cell after conception, as well as during postnatal life, can give rise to cell clones that are genetically different from the original zygote because, due to the nature of DNA replication, the mutation will persist in all clonal descendants of that cell.” (NUSSBAUM, Robert L. et al. Genética Médica - Padrões de herança monogênica. Trad. Thompson & Thompson. Rio de Janeiro: Elsevier, 2016, p.107-132.)
(8) Under physiological conditions, errors or defects can be introduced during DNA replication or repair. These alterations can also occur as a result of the action of physical or chemical agents—known as mutagenic agents. (NUSSBAUM, Robert L. et al. Genética Médica - Padrões de herança monogênica. Trad. Thompson & Thompson. Rio de Janeiro: Elsevier, 2016, p.107-132.)
(9) CLEMENTE, G. T. Responsabilidade Civil, Edição Gênica e o CRISPR. In: ROSENVALD, N.; DRESCH, R. F. V.; WESENDONCK, T. (Org.). Responsabilidade Civil - Novos Riscos. Indaiatuba, SP: Foco, 2019, p. 301-317.
(10) CLEMENTE, G.T.; ROSENVALD, N. Edição Gênica e os limites da responsabilidade civil. In: MARTINS, G. M.; ROSENVALD, N. (Org.). Responsabilidade Civil e Novas Tecnologias. Indaiatuba, SP: Editora Foco, 2020, p. 235-261.
(11) “In Directive 85/374, the development risk is summarized in the following points: (a) it is based on strict civil liability; (b) it establishes the development risk as a ground for exclusion from civil liability; (c) for this exclusion to be accepted, the producer bears the burden of proving that, at the time the product was placed on the market, it was not possible to detect the existence of the defect; (d) the domestic legislation of each Member State may or may not incorporate the Development Risks Defense (DRD). This defense is adopted by countries such as France, Italy, and Spain; (e) the temporal criterion for assessing the state of science and technology, or the state of the art, is the time the product was placed on the market, not the time the damage was verified.” ROSENVALD, N. – O Direito Civil em movimento – 4ª Ed., Salvador: Juspodivm, 2022, p. 230-232.
(12) CLEMENTE, G.T.; ROSENVALD,N. A multifuncionalidade da responsabilidade civil no contexto das novas tecnologias genéticas - 2022- Disponível em: https://www.migalhas.com.br/coluna/migalhas-de- direito-medico-e-bioetica/360773/a-multifuncionalidade-da-responsabilidade- civilhttps://www.migalhas.com.br/coluna/migalhas-de-direito-medico-e-bioetica/360773/a- multifuncionalidade-da-responsabilidade-civil. Acesso em: 03 Jun de 2022
(13) KLEINSTIVER, Benjamin P. et al. High fidelity CRISPR-Cas9 nucleases with no detectable genome- wide off-target effects. Nature, n. 529, p. 490-495, jan. 2016.
(14) MA, Hong. et al. Correction of a pathogenic gene mutation in human embryos. Nature, v. 548, p. 413- 419, ago 2017.
(15) For John Rawls, primary goods are “necessary conditions required by people viewed in light of the political conception of the person—as citizens who are fully cooperative members of society and not simply as human beings, regardless of any normative conception.” RAWLS, J. Uma teoria de justiça, p. 58.
(16) NIETZSCHE, F. Fragmentos póstumos, p. 42.
(17) The topic of transhumanism falls outside the scope of this text; however, it should be emphasized that it will occur when it can provide solutions in which the benefits outweigh the risks inherent in the technology, which is not neutral and depends on who uses it. Biotechnology, nanotechnology, and other fields must be utilized with due consideration for their ethical aspects and algorithmic, social, economic, and cultural implications, which enable us to develop as a society. Therefore, transhumanism does not exist merely to accelerate an evolutionary process, but is recognized as a product of our evolution. Let us remember that a human being is defined as such because they are born of other human beings.
(18) “Self-realization is a slow and complex process of psychological awakening, development, and maturation of all the dormant inner potentials that lie latent within the human being—such as their ethical-moral, aesthetic, religious, artistic, and cultural experiences and achievements. It amounts to clarifying that it is a well-directed effort toward the realization of the inner Self and not the superficiality of the ego’s passions.” FRANCO, D.P. O despertar do espírito: obra ditada pelo espírito de Joanna de Ângelis. 5ª ed. Salvador: LEAL, 2003.
(19) “What characterizes individual existence is the being who authentically chooses himself, thereby shaping his destiny in a dynamic process of becoming. The individual is a conscious being, capable of making free and intentional choices—that is, choices from which the meaning of their existence arises. He creates himself by choosing himself and is a combination of realities/capacities and possibilities/potentialities; he is open-ended—or rather, he is a work in progress. This is how he chooses to be-in-the-world—what he allows himself to be through his freedom.” TEIXEIRA, J. A. C. Introdução à psicoterapia existencial. Análise Psicológica, Lisboa, v. 24, n. 3, p. 294, jul. 2006. Disponível em <http://www.scielo.oces.mctes.pt/pdf/aps/v24n3/v24n3a03.pdf>. Acesso em: 08 jun, 2022.
(20) GAWANDE, A. Mortais, Rio de Janeiro: Objetiva, 2015.
(21) Existential harm entails a sacrifice in the person’s fulfilling activities, causing a change in the person’s relationship with their surroundings. It is a “forced renunciation of happy occasions,” as Cendon and Ziviz put it, or, at the very least, of the state of normality that existed prior to the harm. This understanding is found in ZIVIZ, Patrizia; CENDON, Paolo. Il danno esistenziale. Una nuova categoria della responsabilità civile. Milano: Giuffrè, 2000. p. XXII.
(22) Decision No. 7713 of the Italian Supreme Court, dated June 7, 2000, as a landmark case recognizing existential harm.
(23) A leading figure in Latin American legal research on damage to one’s life plan, the Peruvian legal philosopher Carlos Fernández Sessarego, a professor at the centuries-old Universidad Nacional Mayor de San Marcos – UNMSN158, associates damage to one’s life plan with a psychosomatic breakdown (with consequences that persist over time) of such magnitude that it gives rise to an existential void, in the wake of the loss of meaning experienced by human existence, to the point of nullifying the individual’s decision-making capacity or seriously impairing the possibility of making free decisions and carrying out a life plan. FERNÁNDEZ SESSAREGO, Carlos. El daño al proyecto de vida. Disponível em:<http://www.pucp.edu.pe/dike/bibliotecadeautor_carlos_fernandez_cesareo/articulos/ba_fs_7.P DF>. Acesso em: 09 jun 2022 .
(24) SAPONE, Natalino. BIANCHI, Angelo. Le ragioni del danno esistenziale. Roma: Aracne Editrice, 2010.
(25) PERLINGIERI, P. La dottrina del diritto civile nella legalità costituzionale. Revista Trimestral de Direito Civil. Rio de Janeiro: Padma, 31, jul/set, 2007.
(26) “We all live in time, which ultimately consumes us. Precisely because we live in time, each of us seeks to define our life plan. The term ‘plan’ embodies an entire temporal dimension. The concept of a life plan thus has an essentially existential value, tied to the idea of integral personal fulfillment. That is to say, within the context of life’s transience, it is up to each person to make the choices that seem right to them, in the exercise of full personal freedom, to achieve the realization of their ideals. The pursuit of a life plan, therefore, reveals a profound existential value, capable of giving meaning to each person’s life. [...] That is why the abrupt disruption of this pursuit—due to external factors caused by human action (such as violence, injustice, and discrimination)—which unjustly and arbitrarily alter and destroy a person’s life plan—is of particular gravity, and the law cannot remain indifferent to this. Life—at least as we know it—is unique and has a finite duration, and the destruction of a life plan almost always results in truly irreparable harm, or harm that is, at times, difficult to remedy. Cf. ORGANIZAÇÃO DOS ESTADOS AMERICANOS. Corte Interamericana de Derechos Humanos. Caso Gutiérrez Soler Vs. Colombia. Fondo, Reparaciones y Costas. Sentencia de 12 de septiembre de 2005. Serie C n. 132. Voto razonado del Juez A.A. Cançado Trindade. Disponível em <http://www.corteidh.or.cr/docs/casos/votos/vsc_cancado_132_esp.doc>. Acesso em: 26 dez. 2019, our free translation.
(27) Damage to one’s life plan refers to non-pecuniary changes in the conditions of existence, in the normal course of the victim’s and their family’s lives. It represents the recognition that human rights violations often prevent the victim from pursuing their aspirations and vocations, causing a series of frustrations that are difficult to overcome over time. Damage to one’s life plan affects the victim’s expectations for personal, professional, and family development, impinging on their freedom to choose their own destiny. It therefore constitutes a threat to the meaning the person attributes to existence—to the spiritual meaning of life. NUNES, R.P. Reparações no sistema interamericano de proteção dos direitos humanos. In: OLIVEIRA, M.L.O. (Org.). O sistema interamericano de proteção dos direitos humanos: interface com o Direito Constitucional Contemporâneo. Belo Horizonte: Del Rey, Cap. 9, 2007, p. 166.
(28) “The individual, as a human being, can—once embedded in various interpersonal relationships, in the most diverse environments and contexts, come to shape their life experience and development through the constant pursuit of success in their life plan, the enjoyment of the rights inherent to their personality, their affinities, and their activities. The person aims for personal growth through ongoing contact, via processes of dialogue and dialectic with other members who share in social life with him or her.” BUARQUE, E. C. M. Dano existencial: para além do dano moral. 2017. Tese. (Doutorado em Direito) – Universidade Federal de Pernambuco, Recife.
(29) SOARES, F. R. Responsabilidade civil por dano existencial. Porto Alegre: Livraria do Advogado, 2009.
(30) BUARQUE, E. C. M. Dano existencial: para além do dano moral. 2017. Tese. (Doutorado em Direito) – Universidade Federal de Pernambuco, Recife.
(31) FROTA, H. A. Noções fundamentais sobre o dano existencial. Revista Jus Navigandi, ISSN 1518-4862, Teresina, ano 16, n. 3046, 3 nov. 2011. Disponível em: https://jus.com.br/artigos/20349. Acesso em: 08 jun 2022.
(32) SESSAREGO, C. F. ¿Existe un daño al proyecto de vida? Disponível em: <http://www. revistapersona.com.ar/Persona11/11Sessarego.htm>. Acesso em: 28 mai. 2022. Sessarego gives the following example: “We have previously mentioned, by way of illustration, the profound existential frustration experienced by a famous pianist who loses some of the fingers on his hand, which consequently prevents him from fulfilling himself as a pianist. This damage to the ‘life project’ has no economic significance; nevertheless, it has very serious consequences that can lead—resulting in an existential void—even to suicide. This, of course, is separate from the actual damages and lost profits simultaneously caused by the perpetrator of the tort.” SESSAREGO, C.F. Derecho a la identidad personal. Buenos Aires: Astrea, 1992. p. 261-262.
(33) BUARQUE, E. C. M. Dano existencial: para além do dano moral. 2017. Tese. (Doutorado em Direito) – Universidade Federal de Pernambuco, Recife.
(34) SANTANA, A.G. O dano existencial como categoria jurídica autônoma: um aporte a partir de um diálogo com os direitos humanos. 2017. Tese (Doutorado em Direito) – Universidade Federal do Pará, Belém.
(35) Art. 223-B—CLT. [2017 Labor Reform] An act or omission that infringes upon the moral or existential sphere of a natural or legal person causes non-pecuniary damages; such persons are the exclusive holders of the right to compensation. (Added by Law No. 13.467, dated July 13, 2017).
(36) ROSENVALD, N. As funções da Responsabilidade Civil – A Reparação e a Pena Civil. 3ª ed., São Paulo: Saraiva, 2017.
(37) CLEMENTE, G. T., ROSENVALD, N. Dano ao projeto de vida no contexto da edição gênica: uma possibilidade. In: MENEZES, J. B; DADALTO,L.; ROSENVALD, N. (Org.). Responsabilidade Civil e Medicina. Indaiatuba, SP: Editora Foco, 2020. p. 227-245.
(38) “In cases referred to as ‘wrongful conception’ or ‘wrongful pregnancy,’ whether or not a birth occurs, there is an unwanted pregnancy resulting from medical error (in the broad sense), or a fetus with a genetic disability is conceived after the parents were not informed—or were incorrectly informed—about its genetic risks.” MOTA PINTO, P. Direitos de Personalidade e Direitos Fundamentais – Estudos. Coimbra: GESTLEGAL, 2018, p. 735-772.
(39) As Ruzyk rightly observes when discussing positive freedom as “lived freedom”: “A relevant example of this positive freedom in the context of civil liability is harm to one’s life plan. This is not harm that takes the form of undue coercion, but rather the concrete prevention of the exercise of the power to define the course of one’s own life, radically curtailing the victim’s existential choices. When civil liability recognizes harm to one’s life plan as compensable and also takes a preventive stance against its violation, it is safeguarding this significant dimension of human freedom.” RUZYK, C.P. Responsabilidade Civil, Liberdade e Direito Privado, extraído em 23.9.22, de https://www.migalhas.com.br/coluna/migalhas-de-responsabilidade-civil/332206/responsabilidade-civil-- liberdade-e-direito-privado.
(40) Genetic counseling is understood as the process comprising medical procedures—through preconception, preimplantation, and prenatal testing (predictive and preventive medicine)—by which it is possible to assess risks arising from hereditary diseases, genetic conditions, or those related to chromosomal abnormalities, thereby providing information about their consequences, the probability that the embryo or fetus will exhibit them or that they will be transmitted, as well as the means to prevent, improve, or mitigate them. EMALDI-CIRIÓN, A. A responsabilidade dos profissionais sanitários no marco do assessoramento genético. In: CASABONA, C. M. R.; QUEIROZ, J. F. (Coord.). Biotecnologia e suas implicações ético-jurídicas. Belo Horizonte: Del Rey, 2004. P. 63-127.
(41) CLEMENTE, G.T.; ROSENVALD, N. Edição Gênica e os limites da responsabilidade civil. In: MARTINS, G. M.; ROSENVALD, N. (Org.). Responsabilidade Civil e Novas Tecnologias. Indaiatuba, SP: Editora Foco, 2020, p. 235-261.
(42) CLEMENTE, G. T., ROSENVALD, N. Dano ao projeto de vida no contexto da edição gênica: uma possibilidade. In: MENEZES, J. B; DADALTO, L.; ROSENVALD, N. (Org.). Responsabilidade Civil e Medicina. Indaiatuba, SP: Editora Foco, 2020. p. 227-245.
(43) SOUZA, I. A. Aconselhamento genético e responsabilidade civil: as ações de concepção indevida (wrongful conception), nascimento indevido (wrongful birth), e vida indevida (wrongful life). Belo Horizonte: Arraes, 2014, p. 45-51.
(44) In these situations, once the genetic abnormality has been diagnosed, the options of gene therapy or therapeutic termination of pregnancy (therapeutic abortion, permitted in some legal systems) become available; however, in Brazil, there is no express provision allowing abortion due to a severe genetic disorder. SÁ, M. F.F.; NAVES, B. T. O. Bioética e Biodireito. 5ª ed. Indaiatuba, SP: Editora Foco, 2021. 355 p.
(45) MOTA PINTO, P. Direitos de Personalidade e Direitos Fundamentais – Estudos. Coimbra: GESTLEGAL, 2018. Ibid., p. 735-772.
(46) RAPOSO, V.L. Bons pais, bons genes? Deveres reprodutivos no domínio da saúde e procreative beneficence. Cadernos da Lex Medicinae - Saúde, novas tecnologias e responsabilidades. v. II, nº 4, p. 471- 487, 2019.
(47) RAPOSO, V.L. CRISPR-Cas9 and the promise of a better future. European Journal of Health Law 26, p 308-329, 2019.
(48) RAPOSO, V.L. Bons pais, bons genes? Deveres reprodutivos no domínio da saúde e procreative beneficence. Cadernos da Lex Medicinae - Saúde, novas tecnologias e responsabilidades. v. II, nº 4, p. 471- 487, 2019.
(49) CLEMENTE, G. T., ROSENVALD, N. Dano ao projeto de vida no contexto da edição gênica: uma possibilidade. In: MENEZES, J. B; DADALTO,L.; ROSENVALD, N. (Org.). Responsabilidade Civil e Medicina. Indaiatuba, SP: Editora Foco, 2020. p. 227-245.
(50) CLEMENTE, G. T.; GOZZO, D. Tecnologias de edição genética (CRISPR/Cas9) e sua aplicabilidade na reprodução humana assistida: desafios de uma nova realidade. In: Maria de Fátima Freire de Sá et al. (Org.). Direito e Medicina: Interseções Científicas. Belo Horizonte: Conhecimento Editora, 2021, p.109- 122.
(51) “The evolution of legal thought, the debate over the arguments, and the reflection that has been taking place—both at the national level and in the context of European comparative law—point toward accepting that a child born with a severe disability and suffering from severe physical and psychological distress may seek compensation from a medical professional who acted unlawfully, because they acted in violation of the rules of conduct and with negligence—that is, with a standard of care lower than that of a normally competent, diligent, and careful physician.” PEREIRA, A. G. D. Direitos dos pacientes e responsabilidade médica. 1ª edição, Coimbra: Coimbra Editora, p.278-279, 2015.
(52) SOUZA, I. A. Aconselhamento genético e responsabilidade civil: as ações de concepção indevida (wrongful conception), nascimento indevido (wrongful birth), e vida indevida (wrongful life). Belo Horizonte: Arraes, 2014, p. 45-51.
(53) GOZZO, D. Diagnóstico Pré-Implantatório e Responsabilidade Civil à luz dos Direitos Fundamentais, In: MARTINS-COSTA, J.; MÖLLER, L.L. Bioética e Responsabilidade. Rio de Janeiro: Gen/Forense, 2009, p. 400- 422.
(54) GOZZO, D. A mercantilização da pessoa humana na maternidade de substituição, In: SCALQUETTE, A. C. S.; NICOLETTI C.C.E. (Coord.). Direito e Medicina: Novas Fronteiras da Ciência Jurídica. São Paulo: Atlas, 2015, p. 49-61.
(55) CLEMENTE, G.T.; ROSENVALD, N. Edição Gênica e os limites da responsabilidade civil. In: MARTINS, G. M.; ROSENVALD, N. (Org.). Responsabilidade Civil e Novas Tecnologias. Indaiatuba, SP: Editora Foco, 2020, p. 235-261.
(56) “Whether it is better not to be born than to be born with severe disabilities is a mystery best left to philosophers and theologians. Certainly, the law cannot claim jurisdiction to resolve this issue, particularly given the high and nearly uniform value that both the law and humanity attribute to human life—not to its absence. The implications of such a proposition are staggering.” SOLOMON, A. Longe da árvore. São Paulo, Companhia das Letras, 2014.
(57) ROSENVALD, N. – O Direito Civil em movimento: desafios contemporâneos – 4ª Ed., Salvador: Juspodivm, 2022, p. 208-209.
(58) ROSENVALD, N., loc. cit.
(59) ROSENVALD, N., loc. cit.
(60) “In fact, in 2016, a man born in England with severe disabilities—resulting from his mother having been raped by his own father—was awarded moral damages from his grandfather. In a landmark ruling, the Upper Tribunal held that the victim—now a 28-year-old man—is entitled to compensation. The young man suffers from epilepsy, has severe learning disabilities, and significant visual and hearing impairments. According to the defense, the plaintiff did not meet the legal definition of a “person,” since if the crime had not been committed against his mother, he would not exist. Furthermore, a wrongful act committed before conception, the consequences of which become apparent after birth, cannot be treated as an injury to a living person. However, the judges found that there is no legal provision requiring the victim to be a person at the time of the crime. The decisive factor is that the genetic disorders are consequences directly attributable to the incestuous act.” ROSENVALD, N. – O Direito Civil em movimento: desafios contemporâneos – 4ª Ed., Salvador: Juspodivm, 2022, p. 208-209.
(61) But the unlawfulness of medical conduct may also result from a violation of a professional duty, which is part of the leges artis (…), a duty owed to the parents but which also aims to protect the unborn child from the burdens (at least the financial ones) of living with a severe disability—requiring lifelong support—by enabling the parents to make a decision in this regard.” MOTA PINTO, P. Direitos de Personalidade e Direitos Fundamentais – Estudos. Coimbra: GESTLEGAL, 2018. p. 755.
(62) “Moreover, although the unborn child is not a party to the contract with the physician (or other responsible professional), it is clear that the mother includes the child (as well as the father) within the scope of protection of the treatment contract, and it cannot be ruled out that one might even invoke here the concept of a ‘contract with protective effect for third parties.’MOTA PINTO, P. Ibid., p.756.
(63) “It seems to us that the denial of compensation on the grounds that a ‘counterfactual’ or hypothetical standard—to which the child bringing the claim might resort—is inadmissible, almost amounts, in the conclusions it reaches (which are evidently the decisive test), a renewed affirmation of the wrong done to the child: not only was the child born with a severe disability, but, insofar as the child could not have existed otherwise, the child is barred from even comparing themselves to a ‘normal’ person for the purpose of obtaining redress” MOTA PINTO, P. Direitos de Personalidade e Direitos Fundamentais – Estudos. Coimbra: GESTLEGAL, 2018. p. 758.
(64) “Although wrongful life lawsuits address the ontological question of what kind of life is worth living, that is not what motivates them. Having a disabled child entails colossal expenses, and most parents who file wrongful life lawsuits do so in an attempt to secure care for their children. In a horrific distortion, fathers and mothers must absolve themselves of the obligations of responsible parenthood by stating in legal documents that they wish their children had never been born” SOLOMON, A. Longe da árvore. São Paulo, Companhia das Letras, 2014, p. 56.
(65) CLEMENTE, G.T.; ROSENVALD, N. Edição Gênica e os limites da responsabilidade civil. In: MARTINS, G. M.; ROSENVALD, N. (Org.). Responsabilidade Civil e Novas Tecnologias. Indaiatuba, SP: Editora Foco, 2020, p. 235-261.
(66) MOTA PINTO, P. Direitos de Personalidade e Direitos Fundamentais – Estudos. Coimbra: GESTLEGAL, 2018. p. 761.
(67) “Human dignity is a general clause for the protection and promotion of the human person that operates on two levels (...) b) it has positive effect, generating a “facere” within the legal system, guiding the promotion of the patrimonial and existential autonomy of every human being, and providing us with the material and legal conditions to claim agency over our life paths.” ROSENVALD, N. – O Direito Civil em movimento: desafios contemporâneos – 4ª Ed., Salvador: Juspodivm, 2022, p. 209.
(68) JONAS, H. O princípio responsabilidade. Contraponto: Rio de Janeiro, 2012.