Bioethics and the Nature of Self: Dominant Western Concepts of Self Justify Gene-Editing

Gallaudet University
PHI 494.01: Undergraduate Senior Thesis

Preface: This thesis has been reformated for publication on this blog. The original thesis is formatted to Chicago Manual of Style on Microsoft Word and can be downloaded here: THESIS CRICK Bioethics and The Nature of Self Dominant Western Concepts of Self Justify Gene-Editing Dec 21

Dedication

This thesis is lovingly dedicated to my Guru Amma Sri Mata Amritanandamayi Devi who has inspired me beyond words.

“Only when human beings are able to perceive and acknowledge the Self in each other can there be real peace.” -Amma

Acknowledgments

Many thanks to my advisor, Dr. Teresa Blankmeyer Burke for working with me on this project for two semesters. Thank you to my committee members Dr. Barbara Stock and Dr. Kirk VanGilder for additional participation and feedback. Thank you to Dr. Carolyn McCaskill for introducing me to the issues of the potential impact of gene-editing on the Deaf Community in her Deaf Studies class. Thank you to Dr. Gene Mirus providing guidance and support for exploring different ways to frame the ethical issues of the impact of gene-editing to the Deaf Community in his Cultural Studies class. Thank you to Zen Buddhist monk, Ōshin R. Liam Jennings for reading suggestions and holding space at the No Barriers Zen Temple at Gallaudet for students to meditate and learn more about Buddhism. Thank you to the Deaf Community in general, my many friends and classmates who have discussed this project with me and who have provided feedback and additional insights into my project.

Thanks to my close friends, especially Brenda Gaynelle Johnson, Elicia Varnado, and Daya Diana McCullough for offering support and encouragement through the process. Thanks to my daughter, Charnele Marie Crick, who wants me to succeed more than anyone on the planet. Thanks to everyone and everything who has been a part of this process, including Lola the cat, who sat with me as I drafted this thesis during the last days of her life.

Chapter 1 Introduction

An Introduction to the Problem

Suppose you have a baby girl and you dress her in adorable pink and purple outfits with patterns of polka dots. Perhaps you add matching party shoes and put ribbons in her hair. Everyone compliments your beautiful baby girl, and you are beaming with love for her. Suppose she gets older and announces that she is not a girl! Aside from your shock and possible discomfort with the announcement, it becomes clear that the clothes and shoes and even the toys have all been inappropriate for your daughter who is not a daughter after all.

This thesis explores assumptions of concepts of self within the field of bioethics with a focus on gene-editing in humans. What if self is something other than we take it to be? If debates about gene-editing are like clothes for self, then would the debates need to be changed if the assumptions were wrong to begin with? I will not make claims about which concept of self may be true or correct. However, I will show Western concepts of self that are prevalent in the debates about gene-editing and argue that these concepts are such that gene-editing is justified. The analogy of the baby girl is meant to show that there could be a problem with our assumptions, especially if we believe that the clothing is not appropriate.

Background to the Problem

The primary concern of most potential parents is whether their children will be born healthy. Regardless of potential parents’ definitions of “healthy,” they can now use non-invasive genetic screening to screen for potential “abnormalities” in the DNA of an embryo, such as a simple blood test.[1] With gene-editing technologies, embryos with diseases or disabilities need not be aborted, but can potentially be modified.

Experimentation on gene-editing human embryos is well underway in many laboratories across the globe, and clinical trials have begun on therapies that are argued by some to be of little consequence genetically, such as Mitochondrial Replacement Therapy (MRT). Bioethicists like Marcy Darnovsky argues that this should not be permitted as it constitutes germline gene-editing which “…cross a legal and ethical line on this issue that has been observed by the entire international community.”[2] More recently, a Chinese scientist announced that twin girls have been born who were genetically edited to make them immune to the HIV virus. Although his claim has not yet been verified, gene-editing on embryos that will be implanted also blatantly disregards the agreements discussed by the “international community.”[3]

The idea that gene-editing technologies could reduce human suffering and disease is intriguing. Children would not need to experience genetic disease, parents would not suffer the heartache of watching their children suffer and die, and society would not have to expend resources for continued research on genetic problems that no longer exist. Beyond the vision of a world without disease, we can imagine a world in which, with the intervention of gene-editing, we become smart enough to solve the worldwide problems of global warming, starvation, and poverty. Perhaps we could even figure out how to manipulate the human genome in such a way that humans would be instinctively peaceful and loving, and we could live in a world with no violence.

Although some bioethicists argue that we should embrace the technology of gene-editing without many restrictive regulations, most have taken moderate positions, agreeing that gene-editing technology is powerful and potentially dangerous. However, whether and how to use the technologies is a contentious debate of global concern as many people fear that the potential risks do not justify the benefits.

One problem that I have noticed in the bioethics debate is that of finding the intrinsic value of each potential person. It is a strange predicament to be compelled to argue for the value of lives, for the sake of them! The stakes are high in this debate; if potential persons are not valued for their own sake, they could be genetically modified so that they are valued for other reasons. Another problem I have found, however, is that if the intrinsic value of a person is contingent upon dominant social conventions and definitions, then there will be no end to marginalization and the eradication of “unwanted” types of people will be inevitable. The question guiding my research began as, “How do we justify the value of each person?” However, after much research, my question became, “Why do we have to justify the value of each person?”

The answer, I will argue, is that assumptions of dualistic concepts of self justify gene-editing. I make no claims of which concept of self may be true or correct; my point is only to problematize concepts of self in the bioethical debates.

Roadmap to the Thesis

In Chapter 2 I present important contributions to the discussion of the morality of gene-editing and suggest that they all be categorized on the bioconservative-bioliberal spectrum based on the acceptance of eugenic aims. In Chapter 3 I present Indian concepts of self to show how a non-dualistic framework might be important to the discussion of gene-editing. In Chapter 4 I explore Western concepts of dualistic selves beginning with the Cartesian “mind/body problem.” In Chapter 5 I argue for what had been made evident by my research, that dualistic Western concepts of self justify gene-editing, at least in some cases. Furthermore, I suggested that the possibility to argue for intrinsic value may only be possible within the framework of a non-dual non-personal Vedantic Self.

Definitions

“Gene-editing” in this thesis is meant to refer specifically to human gene-editing and to include all instances of biomedical practices of intentionally causing changes to human genes in pre-embryos, embryos, and fetuses for any reason. Some argue that only certain motivations for gene-editing are justifiable. However, for the sake of this thesis, if any justifications can be made for gene-editing, the motivations are not as relevant as the concept of self that allows for such arguments.

Determining which acts cause “harm” and addressing the question of how to analyze whether an individual was harmed adds another level of complexity to the ethical question of whether gene-editing is morally permissible. For this thesis, the focus is on whether the act of gene-editing causes damage to a self. Damage could mean any change, all changes, or only specific changes to the genetic material of an embryo and/or to self or a potential self.

I have intentionally omitted the use of an article in most instances where the term “self” is used. To use the phrase “a self” indicates the assumption of more than one self, which may not be the case. To use the phrase “the self” indicates that there is one self, which also may not be the case. When considering a specific concept of self, I will add the article of “a” or “the” if inclusion of the article matches the concept. Additionally, when considering the Advaita Vedanta concept of self, I may use a capital “S” as in “Self.”

It is necessary to make clear distinctions between terms that may be used to denote self in the arguments considered in the literature review. Terms such as “selfhood,” “personality,” “identity,” “human nature,” “consciousness,” “self-consciousness,” “soul,” “essence,” “person,” and “personhood” have been used interchangeably in much of the literature. Although these terms have different meanings, they often expose an assumption of a particular concept of self. For example, although one writer might use the term “identity” to denote the self that has been created or perceived, another might use the same term to denote a self that has been created or perceived. The difference here is subtle but important and will be highlighted more explicitly in the following chapters.

Chapter 2: Bioethics Literature Review

This chapter has four sections. The first section, Principlism, reviews principles that are often referred to by bioethicists as we will see in the remaining part of this chapter. Although each principle can be used within any moral framework, they may not be neutral on the question of the nature of self. The second, third, and fourth sections consider the spectrum of arguments for and against gene-editing within the framework of Eugenics.

Section 1: Principlism

Principlism is an approach to bioethics that has been used for guidance in the field of biomedicine to assess whether specific research, policies, and treatments are ethical. In the book “Principles of Biomedical Ethics,”[4] the authors put forth four principles that can be understood as nonnormative codes that encompass what they refer to as the “common morality.”

Nonnormative ethics, they argue, are claims about what is factually the case in society regarding universal morality.[5] It is important to note that their definition of ‘universal’ does not imply consensus. They concede that there is no consensus on the matter of common morality. However, this is not a problem for their task to define a set of principles that are generally recognized as an accurate reflection of morality as a social institution. In other words, they argue that it is to be understood that since human societies create morality, it is possible to assess what is common among different cultures and consistent throughout time.

The four principles set forth by Beauchamp and Childress are:

1.Respect for autonomy (a norm of respecting the decision-making capacities of autonomous persons)., 2. Nonmaleficence (a norm of avoiding the causation of harm) 3. Beneficence (a group of norms for providing benefits and balancing benefits against risks and costs). 4. Justice (a group of norms for distributing benefits, risks, and costs fairly).[6]

These principles have been applied to policies and debate in the field of bioethics. As indicators of “common morality,” they serve as useful general guidelines for professionals in the biomedical field.

Although Beauchamp and Childress did not include the principle of respect for persons in their work, it could be argued that this idea, previously presented in the Belmont Report,[7] is contained within their principle of respect for autonomy. As it is currently used, the principle of respect for autonomy/persons is invoked to ensure that individual rights and preferences are considered. The principle is also used to ensure that “potential persons’” future rights and decision-making capacities are considered.

More recently, The Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations of The National Academies of Sciences, Engineering, and Medicine published a report that provides an overview of human genome editing and addresses the regulatory framework for biomedical practices in the US. They state:

Regardless of whether reasoning begins with theories grounded in utilitarian consequentialism or deontology or virtue ethics, there has emerged over time what some deem “reflective equilibrium.” This concept encompasses the use of both inductive and deductive reasoning, incorporating both theory and case-based casuistry, and accepting the need for reasoning that is understandable to the public, regardless of individual spiritual or religious orientation […]. It has helped shape influential statements and guidance documents across the globe.[8]

In other words, rather than attempting to ground bioethics in either theory or case-based assessments, medical science needs to reflect on and balance all the variables. Theories may apply to a particular case, but not universally, based on all relevant information including the unique cultural context of each case. The committee, which is composed of doctors, scientists, and lawyers, constructed principles in response to expressed concerns about the practice of gene-editing. Guidance for ethical practice, they claim, should be encapsulated by the following principles:

The following principles should undergird the oversight systems, the research on, and the clinical uses of human genome editing: 1. Promoting well-being, 2. Transparency, 3. Due care, 4. Responsible science, 5. Respect for persons, 6. Fairness, 7. Transnational cooperation.[9]

In the following sections, the principles mentioned above are often invoked or assumed in arguments, although interpretations of Beauchamp & Childress’ “Respect for Autonomy” seems to be most prevalent.

Upon consideration of the commonly accepted guiding principles in biomedical research and practice advanced by Beauchamp and Childress, Ashwani Kumar Peetush and Arjuna Maharaj bring attention to ontological and epistemological assumptions of the self that are considered to be universal and global.[10] In particular, Peetush and Maharaj analyze the principle of respect for autonomy and note important cultural distinctions of how this principle is understood in the context of European Western individualistic societies. By contrast, the authors recognize strikingly different notions of the self that underlie understandings of what it means to be autonomous in Eastern[11] societies.

Peetush and Maharaj claim that the socially situated self in many Eastern cultures is one that recognizes shared goals and the common interests of one’s family or community. As an example, the authors mention a tradition in India in which one’s parents and family expect to have input and consent in the matter of whom their children will marry. In other words, seen through an individualistic lens – as is often presupposed in Western culture, if the woman cannot make the decision on her own about whom she will marry, she may be perceived of by Westerners as lacking freedom, or autonomy. However, as seen through a collectivist lens of shared interests, the woman may consider advice and family consent to be an inseparable part of her autonomy. Peetush and Maharaj note that the difference between these two perspectives lies in whether one’s definition of self is that it is separate and distinct from all other selves or whether it is socially situated.

Although the principle of “respect for autonomy” was not included in the list of principles set forth in 2017 by the Committee on Human Genome Editing as part of the Human Gene-Editing Initiative,[12] extracting and understanding concepts of self that underlie ethical principles is an important undertaking that should be continued because, as Peetush and Maharaj point out:

It is becoming evident that a wide range of ethical theories, from environmental ethics to human rights and bioethics, uncritically privilege a particular constellation of views regarding self and self agency that are parochial to Euro-Western Cultures.[13]

Put another way; there is an individualistic perspective[14] of the self in Euro-Western Culture that is ubiquitous and perhaps intractable from the ethical theories that dominate the field of bioethics. The authors claim that the concept of self that has dominated the development and practice of biomedical science has been the Euro-Western notion of independent and self-interested individuals.

Liberal Eugenics

Sara Goering defines “eugenics” as meaning “good birth,” which she claims is both a good goal for parents as well as a word that is associated with the mass exterminations and unethical experimentation during the Nazi regime.[15] Goering argues that there is a moral obligation to ensure “good births” and that we must consider both the environmental and biological factors that contribute to this goal, although with care to separate the new eugenics practices from the horrific practices of the past.

Goering explains that new eugenics practices and goals have been termed “liberal eugenics” as opposed to “authoritarian eugenics.” “Liberal eugenics,” she writes, are:

…based upon individual free choice, pluralist values, and up-to-date scientific understanding of genetics and epigenetics. Furthermore, advocates of liberal eugenics aim to be sensitive to the effects of problematic but deeply entrenched social problems (e.g., racism, sexism, heterosexism) on individual choice. Authoritative eugenics programs, in contrast, were coercive state programs designed to promote social goods, and were based on problematic assumptions about hereditability.[16]

Goering identifies major arguments in contemporary bioethics debates and notes that arguments for “liberal eugenics” include attempts to show that gene-editing can be done in ethical ways. These arguments range from strict regulation to enthusiastic promotion of eugenics, such as arguments advanced by Dena Davis[17] to arguments that parents are morally obligated towards eugenics aims as defended by bioethicists like Julian Savulescu.[18]

If liberal eugenics includes a variety of arguments such as arguments for parental rights to use biomedical technologies like gene-editing for the goal of ensuring “good births,” then many who argue against some instances of gene-editing can be grouped as arguments for eugenics. Although there are significant disagreements among many of the bioethicists included in this thesis, and some argue for strict regulation and warn of the potential for irreversible harm to humans, none make the argument to ban gene-editing practices outright. Gene-editing, for example, could be permissible at least in cases in which a potential child would experience extreme suffering if not for medical intervention.

Liberal Eugenics: From Embryo Selection to Genetic Modification

On the question of how to choose one embryo from several in a petri dish, Julian Savulescu argues that parents ought to use Preimplantation Genetic Diagnosis (PGD) to select for the chance of having the “best life,” by which he means ‘species normative’ functioning. He argues for the Principle of Procreative Beneficence (PPB) by which to choose an embryo.[19] Savulescu further argues that PGD should include as much genetic information as possible so that parents can better evaluate the embryos’ chances for success. The PPB has shaped the ethical conversation regarding defining the concepts of ‘best child’ and ‘best life.’ What is at stake is which embryos will not be selected. Savulescu suggests that parents have a moral obligation to use genetic screening to help them with that determination.

Walter Veit expands Savulescu’s PPB to gene-editing. He argues that if one accepts Savulescu’s Principle of Procreative Beneficence and the Consequentialist Principle that two acts are morally the same if the consequences of each act are the same, then parents are morally obligated to enhance their (possible) children genetically.[20]

Joseph Stramondo argues that parents are not morally required to use PGD to for embryo selection but should be permitted to use PGD to select for a child, with or without a disability, according to a “broadly pluralistic conception of the good life.”[21] Stramondo argues that parents have the authority to make decisions for their future children, but that limits to their authority should be grounded in the concept of ‘life opportunity’ rather than the concept of ‘harm’ and simplistic and unreflective decisions based on social stigma should not be permitted. Deliberately choosing an embryo that will not have an “acceptable range of life opportunities” would be immoral. However, choosing an embryo with a disability would not necessarily be immoral.

The National Academy of Sciences (NAS) and the National Academy of Medicine’s Human Gene Editing Initiative co-hosted a global summit in December 2015 with the Chinese Academy of Sciences and the U.K.’s Royal Society to discuss the scientific, ethical and governance issues associated with human gene-editing research. Participants included multicultural perspectives from a variety of stakeholders including bioethicists and professionals in the fields of medicine, social sciences, and public policy.

One presenter at the Summit, Ruha Benjamin, Sociologist and Associate Professor in the Department of African American Studies at Princeton University, discussed her research on the social impact and meaning of gene-editing by examining the relationship between technological innovation and equity as it relates to socio-economic issues, including disability.[22] She states:

Gene-editing techniques are seeded with values and interests – economic as well as social – and without careful examination, they will easily reproduce existing hierarchies, including ableist assumptions about which lives are worth living and which are worth editing out of existence.[23]

She suggested that we need to “interrogate equity” to ensure that certain lives are not edited out of existence. For Benjamin, “interrogating equity” means asking the questions about who has power and about the guiding ideologies and assumptions of the development and implementation of biomedical science.

Although questions of power are beyond the scope of this thesis and Benjamin’s primary focus for her presentation was the prevalence of ableist assumptions in the development of gene-editing technologies, her point that certain lives may be edited out of existence as a result of the values and interests of scientists bears further emphasis.

Dennis Cooley considers the widely publicized example of the Deaf lesbian couple, Sharon Duchesneau and Candace McCullough, who sought a deaf donor for their children to attempt to ensure that their children would be born deaf. Although this was not a novel concept in the Deaf Community,[24] their story caught worldwide attention, and many people argued that it is unethical to create deaf or disabled children.[25] Although the McCullough story is not about gene-editing, it challenges dominant perceptions of eugenics, or, the definitions of “good birth.” Many authors speculated about what this might mean for gene-editing.

Cooley assumes that gene-editing to design deaf or disabled children would be a harm to those persons. However, the more significant harm according to this argument is the social harm of economic burdens supposedly incurred by businesses as a result. It is reasonable to suppose that Cooley would argue that gene-editing should be permitted if the child would be deaf without that intervention, given the same reasons he provided for the reverse argument.

Dena Davis, J.D. also considers the McCullough story and argues that it is unethical to limit the choices of a future child by ensuring that it is disabled in any way.[26] As noted by Teresa Blankmeyer Burke,[27] the “right to an open future” argument is that parental autonomy should be restricted only to consider the child’s future autonomy.

Davis claims that there are narrow choices and obstacles for deaf people regarding education, career, marriage, and cultural options and determines that ensuring a child would have these same limited options would be immoral. Whether the child is created to be deaf or Deaf the problem is that the child’s future was ill-considered.

Vardit Ravitsky argued that parental authority to make genetic decisions for their children should be limited, but only insofar as their choices did not challenge the ‘normative’ discourse. She acknowledged and quickly dismissed the validity of the Deaf community and argued, opposite of Burke, that it would be unethical to intentionally cause deaf lives to exist. She wrote, “Just as parents should not be allowed to intentionally raise illiterate children who will not be able to become effectively integrated in other cultures, so they should not have the liberty to make genetic choices which will result in children with limited physical or cognitive abilities.” [28]

Ravitsky believes that deaf and disabled are the same and that ‘disabled’ is a genetic problem rather than a social construction. For Ravitsky, deaf is not more than a “limited physical ability” equal to “limited cognitive abilities.” She argues that deafness is a harm to children especially because they may be unable to leave the Deaf community. Ravitsky does not argue for the future child’s “right to an open future” as Davis does, noticing, perhaps, that the child’s open future would be limited by any culture, necessarily. They are “embedded” in a culture that gives their lives meaning and context, that is not the same as an open future. So, in consideration of the child’s best interests, Ravitsky proposes that children should have “cultural mobility” or “conditions of exit.” Ravitsky uses the concept of “rights of exit” as a point of departure from Davis and argues that a child must have “certain basic capacities” to exercise that right in the future. What Ravitsky means by the term “capacities” is that one should be hearing, sighted, and not disabled.

Matti Häyry considers the argument that there is no moral difference between selecting a deaf embryo and deafening a hearing child.[29] Häyry states that the argument assumes that the consequences of the action are what is morally relevant. In other words, in both cases, the result is that there is a deaf child. Therefore, the argument he objects to is: if it is wrong to deafen an infant, then it is wrong to choose a deaf embryo.

Häyry agrees with the assertion that it is wrong to deafen an infant but contends that it is not therefore also wrong to select a deaf embryo. He argues that we could consider consequences of the decisions not to choose a deaf embryo and not to deafen an infant. In the case of the former, the deaf embryo does not get the opportunity to live. In the case of the latter, the qualities of the infant are changed.

Häyry claims that it is morally unacceptable to change a person when it is at least arguable that such a change, such as deafening them, would be for the worse. However, if the choice is to be deaf or not to exist, then it is better to be deaf.  It is logically possible to accept one choice without accepting the other.

Teresa Blankmeyer Burke also evaluates the question of whether it is morally permissible for Deaf parents to use biotechnology to bear deaf children.[30] With regard to embryo selection and Invitro Fertilization (IVF), she considers harm vs. benefit to children who are born deaf and concludes that it is morally permissible in some cases to select for deaf.[31] Burke notes that it is better to be born deaf than not to be born at all and that it is not necessarily better to be born not deaf.

On the question of gene-editing Burke makes two arguments. She states that whether it is ethical to edit genes would depend, in part, on the outcome for the child whose genes were modified. She argues that, beyond simply better than not living, a deaf child can have a good quality of life, especially if their parents are Deaf and part of the Deaf Community.

Burke also evaluates a folk argument that focuses on the concept of bodily integrity and expands that concept to include genomic integrity and concludes that the question of ethics is unresolved considering either utilitarian or deontological frameworks. Burke states:

Some of the questions that are raised by the unique nature of the genes’ function include the following: are genes our essence? Are some genes identity-determining? What constitutes an identity-determining trait – culture alone or a mixture of culture and biology? What are identity-determining traits?[32]

Burke indicates that the answers to these questions must be understood before one can argue that gene-editing harms the potential person. Although she does not present an argument in her dissertation that gene-editing is a harm to d/Deaf persons, the possibility for such an argument is set up by presenting the possibility of a concept of self that is “…a mixture of culture and biology…”[33]

Liberal Eugenics: Bioconservativists vs. Bioliberals

Nick Bostrom categorizes ethical positions regarding gene-editing technologies as a range between views such as “transhumanism,’ or, arguments that these technologies can make humans better and “bioconservativist” arguments that, “…often argue for broad bans on otherwise promising human enhancements.”[34] Bostrom challenges bioconservativist positions that using human enhancement technologies will undermine human dignity. He defines human dignity and argues for the possibility of “post-human dignity.”

Bostrom points out that nature’s gifts are sometimes “poisoned” and that neither human nature or nature, in general, is necessarily desirable or normatively right. Although he does acknowledge the possibility for the misuse of enhancement technologies, he believes that the way to prevent this is to defend individual morphological and reproductive freedoms.

On the point of human dignity, Bostrom discusses definitions of dignity and claims that who we are is more than just our DNA. He concludes:

What we are is not a function solely of our DNA but also of our technological and social context. Human nature in this broader sense is dynamic, partially human-made, and improvable.[35]

Michael Sandel recognizes the benefits of gene-editing for medical use but raises a red flag against enhancement, or, the aspiration to become “better than well.”[36] He notes the possibilities for enhancement for both personal and reproductive goals, and although he appreciates the arguments against gene-editing grounded in principles such as autonomy, he recognizes that they have limited impact.[37] He maintains that we need to ask “…questions about the moral status of nature, and about the proper stance of human beings toward the given world.”[38]

In response to the question of what is wrong about gene-editing, Sandel further argues that although gene-editing may undermine our humanity in ways that have been argued by others, such as diminishing our free-will, the bigger problem is our ambition. He states:

I do not think the main problem with enhancement and genetic engineering is that they undermine effort and erode human agency. The deeper danger is that they represent a kind of hyperagency—a Promethean aspiration to remake nature, including human nature, to serve our purposes and satisfy our desires.[39]

Here Sandel, similar to LaFleur, suggests that we consider not just the goals of gene-editing, but the motivation. The problem he sees is that our motivation to be “better” or to be “perfect” are problematic.

David B. Resnik and Daniel B. Vorhaus claim that gene-editing policy “…should be driven by arguments that address the actual consequences of genetic modification […] not by ones propped up by false or misleading biological assumptions.”[40] They reply to four objections to gene-editing and argue that these are grounded in genetic determinism, which they claim to be false. They object to Sandel’s argument by claiming that it is based on “strong genetic determinism,” or the belief that there is a strong causal connection between the genotype and the phenotype. On the contrary, they argue similarly to Bostrom; genes do not necessarily cause traits so we “…must inevitably fall far short of anything resembling actual mastery.”[41]

Roduit, Baumann, and Heilinger argue that both bioconservativists and bioliberals must clarify the concept of the “drive to perfection.”[42] They agree with Sandel that it is important to examine the goals of biotechnology but argue that Sandel’s “Case Against Perfection” is, paradoxically, an assertion and preference for a particular concept of perfection. Bioliberals, by contrast, have a different concept of perfection implicit within their arguments for gene-editing, one that relies on the idea of humans as autonomous beings. Therefore, they argue, both sides should examine their assumptions of perfection to consider the moral questions that gene-editing presents.

Kahane, Pugh, and Savulescu note that the bioconservative claim is that human nature should be cherished and valued and it is, therefore, wrong to try to transcend it, and/or doing so will lead to adverse consequences.[43] They call this the Human Nature Objection (HNO). They suggest that we consider their proposed enhancement of the HNO objection, that of partiality to humanity. In effect, the authors show us that bioconservatives are partial to human nature as it is currently and that this position can only support resisting radical changes in favor of gradual changes. Furthermore, they note that the HNO is grounded in biological and cultural history. A challenge for this position, for bioconservativists, is that enhancements that improve individuals within the limits of normal species variation could not be argued against as these would not transcend normality.

Chapter 3: Eastern Concepts of Self

This chapter is divided into two parts. The first part, Buddhist Concepts of Self and No-Self focuses on a few interpretations of Buddhist beliefs about self and how those beliefs impact ethical theories. Buddhism, like Hinduism, has different schools of thought based on differences of interpretation of texts that are central to their beliefs and practices. I will touch on core concepts of self and no-self in Buddhism and begin to explore the impact of these concepts on Bioethics.

The second part, Advaita Vedanta Self as Non-Dual Non-Personal Consciousness compares Buddhist and Advaita Vedanta concepts of self to bring the problem of Western and dualistic concepts of self in the bioethics field into focus more clearly. As with Western concepts of self, Eastern concepts of self are also historically complex. My focus is on only concepts that are notably different than what appears in contemporary bioethics debates. To this end, it is important to do a comparative analysis of the nature of self within Buddhism and Advaita Vedanta, as there are fundamental differences.

Buddhist Concepts of Self and No-Self

It is often assumed that Buddhists do not subscribe to a notion of a self. Emer O’Hagan writes, “The doctrine of no-self is the view that there is no self that is permanent, unchanging, or that identifies the essence of a person.”[44] She goes on to show that this doctrine can be understood either as a “bald denial of self” or as merely a contemplative teaching strategy. As a contemplative strategy, the idea of no-self would be used to ensure that one does not identify with anything as a self. On this account, there could be something of a phenomenal representation of a self that is important to ethical theories, even if there is no personal self. Therefore, the ‘self’ by this view is not necessarily ‘nothing.’

Joseph D. Markowski has offered another interpretation of the doctrine of no-self, presenting what O’Hagan might perceive as a “bald-denial of self.” Markowski considers the impact of the doctrine of no-self on Buddhist ethics in light of a common objection that the denial of self would lend itself to nihilism. If there is no self, some argue, there would be no ethical obligation to anyone. This argument would be a problem for Buddhist Ethics in general if it made sense. In his essay, Markowski accepts the interpretation of no-self as nothing and, as for the ethical implication of that position he states:

In response to Buddhism’s rejection of Vedic epistemology, metaphysics, and ethics, along with their philosophy of no-self and emptiness, Buddhism has often been characterized by scholars as a nihilistic philosophy. The argument for this characterization is as follows:

(1) Either morals are objective, or they do not exist at all.

(2) Buddhism argues that nothing is objective.

(3) Therefore, Buddhism is nihilistic.[45]

Markowski objected to the first premise of the objection, citing that there are distinct cultural differences that show that moral belief need not be objective or universal. Markowski concludes that Buddhist Ethics do not include any assumptions of moral knowledge and that, although there is no essential self, there is a concept of personal identity with which ethical theories must contend. Markowski further explicates the idea of no-self and writes:

Buddhism contends that what we call the self is nothing other than a bundle of parts or aggregates: (1) form, (2) consciousness, (3) volition, (4) thought, (5) and feelings. None of these aggregates are sufficient for personhood; rather, they constitute the conditions by which the experience of personhood arises. Ultimately, the status of such personhood is devoid of any inherent nature or essence.[46]

Concepts of self in Buddhism, then, are such that either there is no personal self or that there is no personal self and no eternal self.

Although Buddhists generally advance the teaching of the concept of no-self, what is being denied as self is important to consider. Many Buddhists argue that the no-self theory is a “bald denial of self.” If one understands self to be a separate, personal consciousness, similar to Descartes’ mind/soul perhaps, then Buddhism rejects this version of self. In other words, there is no personal self for many Buddhists who ascribe to a “no-self” theory. Additionally, if the self is interpreted as a biological or psychological aggregate of perceptions, or skandha, then this constructed self may also be denied by Buddhists.

Buddhist Monk Thich Nhat Hanh would disagree with Markowski’s interpretation of the no-self doctrine as a “bald denial of self.” In his commentary of the Heart Sutra, he discusses the concept of emptiness which is integral to the understanding of the concept of no self. In the Sutra, Avalokita stated that the five skandhas (form, consciousness, perception, mental formations, and feelings) [47] are empty. Hahn states: “And if we ask, “Empty of what?” he has to answer. And this is what he said: ‘They are empty of a separate self.’”[48] This interpretation of emptiness leaves us with a concept of no personal self that is similar to the concept of self in Advaita Vedanta.

On the topic of bioethics, William LaFleur indicates that there are Buddhists who claim that Buddhism does not impose limitations on gene-editing in humans.[49] One example he mentions is the Buddhist researcher, Dr. Hwang Woo-suk, who was discredited in the biomedical field for fabricating his research. However, LaFleur maintains that Buddhist beliefs mandate that gene-editing should be exercised with extreme caution, if at all. From his account of Buddhism, a problem with gene-editing is that it will cause more humans to suffer more, rather than less.

A non-Buddhist may not understand the assertion that gene-editing may cause more suffering if the claim by proponents of gene-editing is that gene-editing will reduce suffering. However, the term “suffering” must be understood in the context of Buddhist beliefs of self. What is generally accepted by all the Buddhist schools as Buddhist ethics, regardless of how one interprets the doctrine of no-self, are what is referred to as the Four Noble Truths and the Noble Eightfold Path that are attributed to the founder of Buddhism, Siddhārtha Gautama Buddha who lived sometime between 563 – 400 BCE. The first Noble Truth taught by the Buddha is the truth of suffering. In this translation of the Dhammacakkappavattana Sutta, it is written that the Buddha explained what is now popularly referred to as the first Noble Truth:

This, bhikkhus, is the noble truth of ill: birth is ill, decay is ill, disease is ill, death is ill, association with the unloved is ill, separation from the loved is ill, not to get what one wants is ill, in short the five aggregates of grasping are ill. [50]

The word ‘ill’ in this translation is generally accepted to mean ‘suffering.’ Many argue that suffering is ultimately a state of delusion that is caused by the misperception of self. In other words, if one identifies with her aggregate parts (skandhas), then she will necessarily suffer. By this account, one way to remedy suffering, as O’Hagan pointed out, would be to use the Buddhist philosophy of no-self as a contemplative strategy to recognize that one is not the mind, is not the body, is not the feelings, and so forth. In this way, individuals can transcend their suffering by perceiving of themselves differently. However, the “contemplative strategy” does not address the possibility that ‘emptiness’ may be something and furthermore, it may be that Buddhist ethics is concerned with something much greater than personal mental states.

In the ‘Lotus Sutra,’ another well-known text in the Buddhist tradition, the definition of suffering is elaborated further. It is written that beings are:

…tormented by every kind of suffering. They are continually being born as tiny embryos in one world after another. These people of few qualities and little merit are afflicted by various sufferings. They enter into the jungle of sixty-two false views such as “This exists” or “This does not exist.[51]

From these texts we can see that the problem for Buddhists is not the perceived qualities of the forms, the problem is form. In other words, whether the embryo is perceived as “healthy,” or “perfect” makes no difference. Birth necessarily entails suffering. Furthermore, there is a complex causal relationship between desire and rebirth.

The ‘second Noble Truth’ taught by the Buddha was about the cause of suffering:

This, bhikkhus, is the noble truth of the source of ill: the craving which causes rebirth is accompanied by passionate pleasure, and takes delight in this and that object, namely sensuous craving, craving for existence and craving for annihilation.[52]

Although the details of the causal relationship between craving (desire) and rebirth are left to our imagination, the import of the text is that desire is, as LaFleur contends, the root of suffering. However, the Buddha taught the third Noble Truth about the solution to the problem of suffering:

This, bhikkhus, is the noble truth of the cessation of ill: the complete cessation, giving up, abandonment of that craving, complete release from that craving and complete detachment from it.[53]

The idea here is that if one can detach oneself from craving/desire, then one will not be subject to rebirth. Attachment and all the ways in which we relate to desire by thought and action are what gives perpetuates the problem of suffering, or the problem of living, which seem to be the same by this interpretation.

LaFleur writes, “The exacerbation of desire is the core human problem – so much so that recognizing it as such and dealing with it is central to spiritual development.”[54] The promises of gene-editing technologies only add fuel to the fire as we desire more and more, and he maintains, are potentially never satisfied.

Ron Epstein argues against gene-editing from another angle, “The Buddhist view is that the condition of our bodies and nervous systems affects our minds and vice versa.”[55] In other words, another concern that comes up for Buddhists is that gene-editing may affect the body in subtle ways that will effect meditation. Buddhists recognize meditation as an important method of transcending “samsara,” or “the cycle of rebirth.”

Although it could be argued that Buddhism is dualistic in as far as it maintains that an escape from rebirth is possible, the interconnectedness between the layers of consciousness is still relevant to the question of gene-editing.

Advaita Vedanta Self as Non-Dual Non-Personal Consciousness

Advaita Vedanta is one school of Hindu philosophy that is attributed to Adi Shankaracharya. The Sanskrit term Advaita means ‘not two.’ Surendra Pathak explains the concept further:

The word Advaita refers to the identity of the Self (Atman) and the Whole (Brahman). He [Adi Shankaracharya] wrote, “Ekameva Adviteeyam Brahma” (The absolute is one alone, not two). There is no second, but there is the appearance of an enormous multiplicity. There may be many stalks of sugarcane, but the juice from all of them has the same sweetness. […] In this manner, Shankara proclaimed to the world that it is unity that underlines the apparent diversity.[56]

Chakravarthi Ram-Prasad considers the question of the nature of self by comparing the self of Advaita Vedanta, with the Buddhist concept of “no-self.” He writes, “…the boundaries between self and no-self theories depend on what the self is taken to be.”[57] In other words, there are many concepts of self even within Eastern philosophies, and so it is essential to clarify the term and to know of which school of thought we are referring.

Ram-Prasad and others have noted that some traditions may understand no-self theories as no phenomenal or constructed self. They still may believe in other concepts of self, such as that of a “witness consciousness.” The witness-consciousness may be similar to some versions of self found in Hindu schools – both versions suggest an essence within beings that is eternal, although less personal than popular Western notions of consciousness as an eternal soul.

According to Ram-Prasad, the concept of self in Advaita Vedanta is different from any of these views. For Advaita Vedanta, he explains, unity of consciousness that is the substratum for reality is one level of consciousness, called Brahman in Sanskrit (ब्रह्मन्). Another level of consciousness is at the level of embodiment, or, ātman (आत्मन्). A third level of consciousness is the “empirical consciousness” called the jīva (जीव), or what is understood as a personal self.

It may seem that all of these levels of consciousness are separate parts of what Advaitins might call self. However, the categorization of consciousness as distinct and limited by physical form would be a misinterpretation of this particular concept. There are Hindu schools of thought that may claim a more personal and distinct self, but the Advaitin Vedantic position here seems to be one that is of an all-pervading consciousness that may be transparent to the jīva, or the phenomenal self while also never distinct from it.

The self for Advaitins, according to Ram-Prasad, is a unified reflexive subjectivity, or, a non-personal eternal consciousness. Although this may seem similar to some no-self theories advanced by Buddhists, the fundamental difference may be the assertion of both the knowledge of and the existence of something (consciousness) that is external to both body and mind yet present within both. This distinction may be reminiscent of Cartesian duality, except that the “I” or “self” is a non-transmigratory presence rather than a personal migratory identity or soul.

To further explore the Advaitin Vedanta concept of self may be necessary to explain how non-personal consciousness is not simply another dualistic distinction, placing body-mind opposite consciousness, as may be the case for some Buddhist and Hindu schools.

Adi Shankaracharya is said to have explained his thesis of the unity of consciousness in over three hundred works. In one text he writes:

  गुरुरुवाच – त्वं परमात्मानं सन्तं असंसारिणं संसार्यहमस्मीति

विपरीतं प्रतिपद्यसे, अकर्तारं सन्तं कर्तेति, अभोक्तारं सन्तं भोक्तेति

विद्यमानं च अविद्यमानमिति, इयमविद्या ॥ ५०॥[58]

gururuvāca — tvaṃ paramātmānaṃ santaṃ asaṃsāriṇaṃ saṃsāryahamasmīti viparītaṃ pratipadyasē, akartāraṃ santaṃ kartēti, abhōktāraṃ santaṃ bhōktēti vidyamānaṃ ca avidyamānamiti, iyamavidyā 50

50. The teacher said, “You are the non-transmigratory Supreme Self [paramātman], but you wrongly think that you are one liable to transmigration. (Similarly), not being an agent or an experiencer you wrongly consider yourself to be so. Again, you are eternal but mistake yourself to be non-eternal. This is Ignorance.”

Buddhists claim that the cause of suffering is desire while the Advaita Vedanta position is that suffering is caused by ignorance of one’s true nature. While Buddhists maintain that self is such that one can escape samsara or the cycle of worldly existence,[59] the Advaita Vedanta position maintains that the self and is eternal and non-dual. These are fundamentally different concepts of the nature of self.

Bharath Sriraman and Walter Benesh discuss the scientific discoveries of a “non-linear totality in which subject, object, and situation have become inseparable.”[60] They note the tendency of Western science to objectify reality to try to understand it while Indian science has tried to subjectify our consciousness.

Sriramen notes the importance of Cartesian dualism in the development of concepts of self, also noting the gradual development of the separation of body and soul/mind as distinct categories to have begun with Aristotle’s empiricist tradition. Benesch writes:

One can think of subject and object as two unique and separate natures, neither of which is reducible to the other. The question of course in such a dualistic assumption is ‘how do these two natures relate to each other?’[61]

Sriramen explains that science has begun to recognize that the act of observation changes what we are perceiving. We are not separate selves as observers or perceivers; we are participators. Rather than a mechanistic or dualistic universe, it is a “participatory universe” in which reflexive consciousness superimposes upon beings as processes and vice versa. In other words, perhaps body-mind and consciousness cannot be separated.

Chapter 4: Western Concepts of Self

This chapter begins to explore the background to contemporary notions of dualistic personal selves in contrast to non-dualistic non-personal selves. Beginning with a summary of the Cartesian mind/body problem and Kant’s reformulation of dualism, I will explore contemporary arguments that grapple with the concept of self, all of which presuppose some type of mind/body dualism.

Mind/Body Dualities

Anthropologist D.W. Murray takes issue with philosophical claims that there is one Western concept of self and argues that Western concepts of self are historically diverse but traditionally categorized as monolithic.[62] He notes that contemporary Western concepts of self that have been recently advanced such as relational, anti-essential, and pluralist, are mistakenly taken to be new ideas. Murray notes the tendency to posit the Western concept of self as a transcendental or essential self that can be linked back to Descartes and Kant. He claims that this is a mischaracterization of the tradition of the “…multiplicity of selves and philosophical perspectives that are contained within, and constitute, “the West.”[63]

It is beyond the scope of this thesis to consider all of the concepts of self that have emerged in the history of Western Philosophy. For the sake of this thesis, I will consider the possibility that Western concepts of self  have evolved from Cartesian mind/body dualism and that, although there are significant disagreements in philosophical debates about the nature of self, the claim that the dominant Western concept of self is dualistic, in spite of other fundamental differences, is textually supported.

René Descartes is well known for his impact on the development of Western concepts of self.[64] Descartes considered the possibility that there was nothing that he could know about self or the world. By first meditating on the possibility that he was dreaming about all of reality to then considering the possibility that an evil genius was deceiving him about everything that he perceived, he concluded that he could not be certain of any other knowledge other than the fact that he was a thinking thing. He wrote:

But what then am I? A thing which thinks. What is a thing which thinks? It is a thing which doubts, understands, [conceives], affirms, denies, wills, refuses, which also imagines and feels.[65]

Descartes argued that this thinking thing was a mind/soul that was separate from the body and brain. The dilemma this posed for subsequent philosophers was, as indicated by Benesch above, what is known as the “mind/body problem,” or, how to explain the causal relationship between the personal eternal thinking thing and the mortal body.

It could be argued that David Hume dodged the problem of explaining a causal relationship between eternal minds and mortal bodies by denying the existence of any substance that could be a “uniting principle” of the otherwise ever-changing “bundle of perceptions.” He argued that there is no self that exists apart from perception. He writes:

For my part, when I enter most intimately into what I call myself, I always stumble on some particular perception or other, of heat or cold, light or shade, love or hatred, pain or pleasure. I never can catch myself at any time without a perception, and never can observe any thing but the perception. When my perceptions are removed for any time, as by sound sleep; so long as I insensible of myself and may truly be said not to exist.[66]

It is tempting to draw a corollary between Hume’s “bundle of perceptions” and the Buddhist skandhas, or, aggregates. However, while both deny a personal eternal self, an immediate difference between the two theories is that Hume here asserts that he exists when, and only when, he perceives his existence. Buddhists might maintain that his perception, which is one of the aggregates, do not constitute a self, or knowledge.

In the Critique of Pure Reason, Immanuel Kant states, “The simple but empirically determined consciousness of my own existence proves the existence of objects in space.”[67] Kant is claiming, opposite of Descartes, that consciousness of existence is verifiable by sense experience. Kant concludes that 1.) the self exists, 2.) we can know empirically that the self exists and most importantly for this thesis, 3.) consciousness is an act of perception that is a least in part within the brain/body not completely separate from it (as it was in Descartes’ formulation). Although Kant agreed with Descartes that there was a personal soul, he relegated it to the noumenal realm of being (as opposed to a phenomenal realm of experiencing) that cannot be experienced and therefore cannot be known for certain. However, the self as “thinking thing” was redefined as something which was known by experience. Perhaps he would reformulate Descartes’ famous quote “Cogito Ergo Sum.” (“I think therefore I am.”) as, “I am; therefore, I think.”

It is difficult to grasp a clear definition of self from Kant’s writings; however, it has been argued that the mind (or the “thinking thing”) was of pivotal importance. In their critique of the individualistic self of Western philosophy, Willet, Anderson, and Myers state:

Modern philosophy in the West championed the individual. Extending into contemporary moral and political thought is this idea that the self is a free, rational chooser and actor—an autonomous agent. Two views of the self dominate this individualistic milieu—a Kantian ethical subject and a utilitarian ‘homo economicus.’ […] The Kantian ethical subject uses reason to transcend cultural norms and to discover absolute moral truth, whereas homo economicus uses reason to rank desires in a coherent order and to figure out how to maximize desire satisfaction within the instrumental rationality of the marketplace. Both of these conceptions of the self isolate the individual from personal and social relationships and from biological and social forces.[68]

In other words, the agent in each concept of self is that it is defined by the use of reason for personal goals. The concept of self from Kant onward continued to be “thinking things,” or, “autonomous agents.” Although academic literature seems to favor non-essentialist conceptions of individual conscious selves, it may be the case that theistic concepts of personal eternal souls are still prevalent in popular culture.

On the matter of the importance of thought and consciousness to Western concepts of self, Carson Strong defends an argument that we should confer moral standing to pre-embryos, embryos, fetuses, and infants because of their similarities to personhood.[69] Strong defines “personhood” as an aggregate of characteristics that account for both “descriptive” and “normative persons.” Descriptive personhood “…refers to the possession of self-consciousness, which typically is accompanied by other attributes…”[70] Normative personhood is a designation that can be applied in increasing degrees to the developmental stages of pre-embryos, embryos, and fetuses and infants. Descriptive personhood becomes the paradigm by which moral standing is determined. Strong argues that attempts to claim that personhood (and therefore moral standing) is intrinsic to the individual during gestation have been unsuccessful. However, the commonly held view that moral standing increases during gestation has intuitive plausibility.

Strong claims that, although the human embryo has value just because it is a human rather than a non-human animal embryo and therefore should not be used without good reason, a self as personhood is equated with a self-consciousness that is developed in the brain. This is an important distinction to note. For bioethics, the concept that self-consciousness is the determining factor of a self is implicated in many of the current regulations that do not allow scientists to continue to experiment on embryos after 14 days.[71]

Eric Olson might argue that Strong’s concept of self represents the “Standard View” that insists on “psychological continuity” as the answer to the question of identity. If a self is developed in the brain (as distinct from the Cartesian mind) at a certain point in physical development, then, as argued by Olson,[72] that self may be said to not exist either as a pre-embryo or as someone with compromised mental capacities, such as seniors with Alzheimer’s. He argues that this conclusion does not make sense. Certainly, seniors with Alzheimer’s still have a self.

Olson does not prioritize the processes of cognition as does Strong; instead, it is the body itself that is of most importance to a concept of self. He argues that the “Biological View” of self recognizes that the embryo becomes a person:

Each human animal starts out as an unthinking embryo, and could survive the destruction of its cerebrum in a vegetative state. The lack of psychological continuity in these cases does not prevent the animal from persisting.[73]

The “Standard View” and the “Biological View” of the nature of self can be seen in bioethics discourse. The “Respect for Persons Principle” will be interpreted differently by ethicists who hold that what must be respected is the psychology of the person than by ethicists who believe that what must be respected is the physical material of the person.

Perhaps both the “Standard View” and the “Biological View” of the concept of self would be criticized by Peetush and Maharaj as prioritizing the individual without consideration of cultural and relational factors that affect the concept of self. However, these are not the only Western concepts of self. Feminists have done extensive work to analyze and reconceptualize concepts of self to account for cultural, relational, and intersectional factors of identity development. Willet, Anderson, and Meyers write:

…the paradigm of the self that has gained ascendancy in U.S. popular culture and in Western philosophy is derived from the experience of the predominantly white and heterosexual, mostly economically advantaged men who have wielded social, economic, and political power and who have dominated the arts, literature, the media, and scholarship. As a result, feminists have not merely perceived the self as a metaphysical issue but have also drawn attention to its ethical, epistemological, social, and political imbrication. Responding to this state of affairs, feminist philosophical work on the self has taken three main tacks: (1) critiques of dominant modern, Western views of the self, (2) reclamations of female identities, and (3) reconceptualizations of the self as both (a) a dynamic, relational individual[74] beholden to unconscious desires and social bonds and (b) an intersectional, multilayered phenomenon.[75]

The implication of feminist critiques and reconceptualizations of the nature of self is that selves are created and that the dominant and oppressive selves that have been constructed in Western history represent the values and judgments of a few straight, wealthy, white men.

Barbara Stock considers the question of the impact of expanded definitions of autonomy as presented by feminist philosophers on people who are often not considered to be autonomous.[76] Stock first describes the evolution of feminist critiques of definitions of the term “autonomy.”

Stock notes that the concept of relational autonomy, a view that discounts the false notion of “highly rational and individualistic” selves,  has been increasingly applied in clinical practice in ways that have expanded possibilities for agency in cases where individualism and rationality may have been compromised due to illness.

Dr. Rita Charon may exemplify a contemporary feminist perspective in medical practice. She defines “Narrative Medicine” as medicine practiced with narrative skills such as the ability to recognize, absorb, and interpret the stories that patients tell. For Charon, patient stories give the doctor the biographical and psychological information needed to see the patient as a person rather than just a set of symptoms or problems to be fixed. Her answer to the problems of a lack of ethical guidance in the medical field is that medical professionals must learn to recognize not only the symptoms but also the person whose life and sense of self is affected by conditions of the body that they live in. Charon writes, “Care of the body, that is to say, may carry an obligatory duty to recognize the self – of the patient who suffers and the doctor or nurse who accompanies that patient through illness.”[77] Charon considers self to be phenomenal and physical, pluralistic and socially situated. However, self may still be defined as a personal consciousness, one that is separate from others despite the possibility of social relativity.

It is significant and important for both bioethics and the medical field that Dr. Charon has recognized the need to acknowledge and understand the nature of self. She writes that alternative ethical approaches in health care such as feminist ethics and virtue ethics among others:

…with their foundations not in law and Anglo/Continental moral philosophy but in the particularities of individuals, the singularity of beliefs, the perspectival nature of truth, and the duties of intersubjectivity, these complexly differing approaches share a commitment to narrative truth and to the power of telling and listening.[78]

In other words, Charon is indicating that these different approaches have illuminated that the self is something socially and personally constructed, subject to time, context, and change. By this definition of self, personal and cultural identities and how the health of the body affects these identities is of equal value to the medical field as are diagnoses of disease. In other words, recognition of self for Dr. Charon means the acknowledgment of personal identities.[79]

Although there are disagreements among feminists about the details of the nature of self, what is important to this thesis is that they seek to expand and redefine the “Standard View” rather than reject the premise of mind/body duality. Stock suggested that feminists could “attack autonomy at the metaphysical level by denying that people are metaphysically separate entities.”[80]

Chapter 5: Argument and Objections/Replies

Dominant Dualistic Western Concepts of Self Justify Gene-Editing

To understand the dominant Western concepts of self, I briefly considered three philosophers; Descartes, Hume, and Kant. (Descartes 1996; Hume 2009, Kant 2015) Descartes believed that the self was a “thinking thing” or “mind” that was separate from the body, as a soul. Hume believed that, since everything is changing, there is no continuing thing that could be called a self. However, perhaps by his logic, we could say that selves are momentary individual perceivers. Kant reclaimed the personal soul but made it almost irrelevant to science and philosophy by claiming that it cannot be perceived or known for certain and by relocating thinking from the soul/mind to the brain. Kant, perhaps, redefines the concept of self to mean the personal experience of the “thinking thing.”

At least since the time of Descartes, then, the dominant Western concept of self has been that it is a “thinking thing” and a body. Explaining the relationship between these separate entities has been an ongoing challenge. Contemporary examples of this challenge, and of the assumption of dualistic concepts of self who were discussed in Chapter 4 include Strong and Olson. Strong argues that pre-embryos, embryos, and fetuses should have conferred moral standing based on “normative personhood.” (Strong 1997) By this, she means that there are mental and physical attributes which are the standard for personhood and those who do not meet this standard ought to have relative moral standing. One problem with this account of self as mind and body is that the value of each person is relative to and perhaps less than others. Although her argument may be an attempt to show how abortion is permissible in early stages and immoral in late stages, relative moral worth is problematic.

Olson (1999) took issue with the concept of self as a thinking thing, especially in the case where either infants or seniors may have underdeveloped or declining mental functioning. Instead, he argued for the “Biological View” of self, claiming that the body is of greater importance to the concept of self than the brain.

Strong and Olsen are just two examples of dominant contemporary dualistic concepts of self as “thinking things” and bodies. If the nature of self is such that the value of each person is based on their bodies and their brains, then the problem in the case of gene-editing is that some bodies and brains will have value and others will not. Bodies and brains may have value only when they measure up to a certain standard.

Feminists have critiqued the notion of the value of persons being reduced independent separate bodies and minds, noticing that what is lacking in these accounts is that the self is “an intersectional multilayered phenomenon.” (Willet et al. 1999) Stock considers the impact of the feminist concept of “relational autonomy” as opposed to the word autonomy as it has been used historically to account for independent thinking things. (Stock 2014) Stock finds evidence that the relational accounts of self are being employed in medical settings, and that individual agency has been expanded as a result. Dr. Charon exemplifies the contemporary feminist relational self in her medical practice and has developed “Narrative Medicine,” which potentially acknowledges the value of each separate notion of self. (Charon 2002) The value of each person is in the story about themselves that they create.

Although the idea of relational and pluralistic selves is useful, and perhaps more reflective of pluralistic societies, selves are still not more than bodies and brains and relationships between them. The problem for gene-editing, from this position, continues to be that some bodies and some brains have value, while others do not. The reasons to argue for or against gene-editing will be based on the relative and temporary value of a constructed self.

The eugenics aim of gene-editing is justified by dualistic concepts of self. If there is a personal self and if that self is separate from other selves, then some will experience a “good birth” in comparison to others who perhaps, by some definitions, do not or could not experience a “good birth.”

It may seem correct to seek to define “good” at least in the examples of the potential child that would suffer an unbearable existence if not for the intervention of gene-editing. It is not good for a child to suffer. However, the concept of “good” is loaded with biases and assumptions and whether the brain and body are “good,” or at least good enough, depends on the values of parents, doctors, researchers, scientists, and societies as a whole. Based on this, bioconservatives are not able to argue that gene-editing is always wrong. Gene-editing, then, is justified in some cases and the slippery slope is in favor of bioliberals who maintain that there is nothing inherently wrong with gene-editing.

As discussed in Chapter 2, arguments have been made both for and against gene-editing embryos on account of harms to future children and/or to society; the rights of future children, parents, families, and businesses; social justice and inequities either for access to technologies or for preventing the loss of diversity. Many of these arguments, both for and against, have invoked the principle of autonomy as agency, or, self-determination. However, because of the overarching concept of the nature of self as not more than bodies and brains, the value of self is also not more than that.

To see the problems of dualistic concepts of self more clearly, it is helpful to contemplate Eastern philosophies. Buddhists describe self as “skandha” that include: body, feelings, perceptions, thoughts, and consciousness. (Hanh 2012; Markowski 2014) This self is illusory, a construct that necessarily endures suffering. Western concepts of self seem to accept the “skandha” as real and of primary importance, regardless of whether some part of it may exist for either many lifetimes or for eternity. For practical and ethical considerations Buddhists would not argue that these personal, ephemeral selves have no value, but in the bioethics dialogues, we have seen that it is the constructed nature of personal selves that gives one value.

It could be argued that some Buddhist concepts of self are also dualistic. If the problem of gene-editing is that it may affect the ability to meditate, as indicated by Epstein, then the value of the mind and body are important for the non-personal transmigratory self which must use the mind and body to escape from this illusory existence, or, samsara. (Epstein 2001) A problem with this position is that scientists could argue that gene-editing will improve our minds and bodies in ways that will enhance meditation. The value of self cannot be contingent on bodies and minds, or there will be justification for gene-editing.

It could be argued that even if personal identities are illusory that they are the only concepts of self that are morally relevant. While even most Buddhists and Vedantins may concede to this point, Vedantins argue that moral relevance cannot discount unified consciousness. In other words, what may be “good” is not a matter of only personal or temporary concern. This is not the same as the argument that a state-sponsored eugenics program could be argued to be “good” for everyone. Rather, a “participatory universe” may be one in which perfecting definitions of individual identities is unnecessary and misses the point. (Sri Raman et al. 2013) Non-dualistic non-personal concepts of Self, therefore, do not support the eugenics aim of gene-editing. It is unclear whether Vedantins would argue for or against gene-editing. However, eugenics aims would be inconsistent with a position of non-dual non-personal eternal consciousness.

Although Vedantins may accept that there are constructed personal selves, these selves only appear to be distinct from others. Unlike Buddhists, they insist that there is a non-personal self as consciousness that is one with all form and thought. This essence is Self that is indivisible and eternal. For example, an analogy often used by Sri Mata Amritanandamayi is that there are many light bulbs of different shapes, sizes, and wattages; however, the bulb (or the constructed identity) is not the Self. Electricity is the indivisible, essential presence within the bulb. The value of each person within this framework would be the same. In essence, there is no difference between Self and other. There is no separation between minds and bodies. And, there is no escape from samsara or from our creations.

Chapter 6: Conclusion

To return to the analogy of the child who chooses to identify as a boy, it is important to consider our concepts of self. Some argue that self is biological, and the child is a girl in spite of her choice to define herself otherwise. Some argue that self is psychological and that biology is irrelevant to his definition of himself. Those who believe there is an eternal personal self may say that the truth is that the boy is in the wrong body or others with similar concepts of a personal self may claim that the girl has been confused by society. Finally, there are those who claim that Self is non-dual, non-personal[81], and eternal and that the value of a child is not determined simply by biology or psychology.

The impact of the Vedantic concept of self seems to be that the manifestation of Brahman in the form of any child would have intrinsic value regardless of the quality of the form or the perceptions of the mind. From my understanding of the explanation of the levels of consciousness described by Chakravarthi Ram-Prasad,[82] personal identity is relevant and important at the level of the jiva, but the unchanging intrinsic value of each person is beyond perceptions of individual separate selves. It may be from within that framework of understanding that gene-editing would be inconsistent with eugenics. If an embryo is already a manifestation of Brahman, already perfect, then the burden of proof to show otherwise would be on the geneticist.

The non-dual non-personal concept of Self within Advaita Vedanta is not a dominant concept in the East. Hindus and Buddhists have many schools of thought that have not been considered in this thesis, and many of them are dualistic. To my knowledge, there is not an example of a society based on the beliefs of Advaita Vedanta. Therefore, it is difficult to conceive of how approaches to bioethics and genetics may be different within such a society.

At one point in my research, I almost gave up, noticing that dominant concepts of self are such that some bodies and minds will never be “good enough.” The idea that the intrinsic value of each person is based on this Vedantic concept of the non-dualistic non-personal Self that is the indivisible essence of everything seems to solve the problem of the need to justify the value and moral worth of each person as an individual identity. However, given the relative obscurity of the Vedantic concept, what this thesis implies is that there is a need for a global paradigm shift. The enormity of such a task and the improbability of it renders this thesis as either ungrounded in practical reality or naïve grasping at a Utopian fantasy.

Upon further reflection of the Advaita Vedanta philosophy, I realized that if I take the claims seriously that I am not separate from anything or anyone and that I am more than simply a mind and a body of relative and temporary value and use, then this thesis will have some impact on the world.

It is my hope that gene-editing will not continue within the current paradigm of dualistic selves and eugenics. However, the recent announcement about the genetic modification of twins in China leads me to believe that there is not a way to stop this ball from rolling. Given that, it seems that arguments against gene-editing for certain kinds of minds and bodies are necessary and may always be necessary.

Notes

[1] “What is noninvasive prenatal testing (NIPT) and what disorders can it screen for?” Genetics Home Reference, NIH U.S. National Library of Medicine, (as of November 27, 2018), https://ghr.nlm.nih.gov/primer/testing/nipt.

[2] Marcy Darnovsky, “A Slippery Slope to Human Germline Modification,” Nature 499, no. 7457 (2013): http://doi.org/10.1038/499127a.

[3] Dennis NormileNov, “CRISPR Bombshell: Chinese Researcher Claims to Have Created Gene-edited Twins,” Science AAAS, (November 27, 2018), https://www.sciencemag.org/news/2018/11/crispr-bombshell-chinese-researcher-claims-have-created-gene-edited-twins.

[4] Tom L. Beauchamp et al., Principles of Biomedical Ethics, 5th ed. (New York: Oxford University Press, 2001).

[5] Beauchamp et al., 2.

[6] Beauchamp et al., 12.

[7] The Belmont Report. Washington, D.C.: U.S. Gov. Print. Off., 1978.

[8] National Academies of Sciences, Engineering, and Medicine. 2017. Human Genome Editing: Science, Ethics, and Governance. Washington, DC: The National Academies Press. https://doi.org/10.17226/24623, Section 2, 30.

[9] Ibid, Section 2, 34 – 33.

[10] Ashwani Kumar Peetush et al., “Individual Autonomy: Self, Culture, and Bioethics,” Bioethics Update 4, no. 1 (2018): 25, doi:10.1016/j.bioet. 2017.10.001.

[11] The convention has been to refer to Buddhist and Hindu philosophies as “non-Western.” I prefer to consider these important contributions in terms of what they are rather than what they are not.

[12] National Academies of Sciences, Engineering, and Medicine. 2017. Human Genome Editing: Science, Ethics, and Governance. Washington, DC: The National Academies Press. https://doi.org/10.17226/24623. Section 2

[13] Ashwani Kumar Peetush et al., Individual Autonomy, 25.

[14] An assumption of this thesis and my argument in Chapter 5 is that individualism is derived from mind/body dualism. It is beyond the scope of this paper to make this argument.

[15] Sara Goering, “Eugenics,” Stanford Encyclopedia of Philosophy (July 02, 2014): https://plato.stanford.edu/entries/eugenics/.

[16] Goering

[17] Dena S. Davis, “Genetic Dilemmas and the Childs Right to an Open Future,” The Hastings Center Report 27, no. 2 (1997): https://doi.org/10.2307/3527620.

[18] Julian Savulescu, “Procreative Beneficence: Why We Should Select the Best Children,” Bioethics 15, no. 5-6 (2001): https://doi.org/10.1111/1467-8519.00251.

[19] Savulescu

[20] Walter Veit, “Procreative Beneficence and Genetic Enhancement.” Kriterion – Journal of Philosophy, (2018).

[21] Joseph Stramondo, “Disabled by Design: Justifying and Limiting Parental Authority to Choose Future Children with Pre-Implantation Genetic Diagnosis,” Kennedy Institute of Ethics Journal 27, no. 4 (2017): https://doi.org/10.1353/ken.2017.0039.

[22] Ruha Benjamin, “Interrogating Equity: A Disability Justice Approach to Genetic Engineering,”   International Summit on Human Gene Editing. The National Academies of Sciences, Engineering, and Medicine. (September 18, 2017): 48-51, http://www.nationalacademies.org/cs/groups/pgasite/documents/webpage/pga_170455.pdf.

[23] Benjamin, 51.

[24] “Deaf” designated by a capital “D” denotes a deaf person who is also part of the Deaf Community which is recognized as a minority linguistic community. A person can be deaf and Deaf but arguably not Deaf if not biologically also deaf or hard of hearing.

[25] Dennis R. Cooley, “Deaf by Design: A Business Argument Against Engineering Disabled Offspring,” Journal of Business Ethics 71, no. 2 (2006): https://doi.org/10.1007/s10551-006-9135-0.

[26] Dena S. Davis, “Genetic Dilemmas and the Childs Right to an Open Future,” The Hastings Center Report 27, no. 2 (1997): https://doi.org/10.2307/3527620.

[27] Teresa Blankmeyer Burke, “Quest for a Deaf Child: Ethics and Genetics.” Order No. 3460974, PhD diss., The University of New Mexico, (2011). ProQuest, http://proxyga.wrlc.org/login?url=https://search-proquest-com.proxyga.wrlc.org/docview/879050593?accountid=27346.

[28] Vardit Ravitsky “Genetics and Education: The Ethics of Shaping Human Identity.” Scholarly Commons. (October 2002): https://repository.upenn.edu/bioethics_papers/15/, 315.

[29] Matti Häyry, “There Is a Difference between Selecting a Deaf Embryo and Deafening a Hearing Child,” Journal of Medical Ethics, (October 01, 2004): https://jme.bmj.com/content/30/5/510.

[30]Teresa Blankmeyer Burke, “Quest for a Deaf Child: Ethics and Genetics.” Order No. 3460974, PhD diss., The University of New Mexico, (2011). ProQuest, http://proxyga.wrlc.org/login?url=https://search-proquest-com.proxyga.wrlc.org/docview/879050593?accountid=27346.

[31] This thesis does not address the question of selection of embryos, however the question of the nature of self is also relevant to that topic.

[32] Burke, Quest for a Deaf Child, 133.

[33] Burke, 133.

[34] Nick Bostrom, “In Defense of Posthuman Dignity.” Bioethics 19, no. 3 (2005): 202-214. https://doi.org/10.1111/j.1467-8519.2005.00437.x.

[35] Bostrom, In Defense of Posthuman Dignity, 10.

[36] Michael J. Sandel, “The Case Against Perfection,” The Atlantic, (April 01, 2004), https://www.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/.

[37] Although Sandel claims there is a clear line between enhancement and medical application, the distinction seems arbitrary, therefore it seems his arguments can be applied to gene-editing in general.

[38] Sandel, The Case Against Perfection.

[39] Sandel.

[40] David B. Resnik, et al. “Genetic Modification and Genetic Determinism.” Philosophy, Ethics, and Humanities in Medicine, (2006): https://doi.org/10.1186/1747-5341-1-9.

[41] Resnik, 8.

[42] Johann A R Roduit, et al. “Human Enhancement and Perfection.” Journal of Medical Ethics 39, (2013): 647-650, https://doi.org/10.1136/medethics-2012-100920.

[43] Guy Kahane, et al., “Bioconservatism, Partiality, and the Human-Nature Objection to Enhancement,” The Monist 99, no. 4 (2016): https://doi.org/10.1093/monist/onw013.

[44] Emer O’Hagan, “Non-Self and Ethics: Kantian and Buddhist Themes” In Ethics without Self, Dharma without Atman. Western and Buddhist Philosophical Traditions in Dialogue Gordon, Davis, Springer, (2018): 3, https://philpapers.org/rec/OHANAE-2.

[45] Joseph D. Markowski, “Buddhist Non-Cognitivism.” Asian Philosophy 24, no. 3 (August 2014): 234, https://doi.org/10.1080/09552367.2014.952577.

[46] Markowski, 5.

[47]Note that Markowski’s account of the five “aggregates” is slightly different. For this thesis it is enough to show that both Markowski and Hanh recognize the parts that make up a human body as something that is non-essential. The point where they disagree is that there is an essential self.

[48] Thich Nhat Hanh, “Awakening of the Heart: Essential Buddhist Sutras and Commentaries.” (Berkeley: Parallax Press, 2012): 272-273.

[49] William R. LaFleur, “Enhancement and Desire: Japanese Qualms about Where Biotechnology Is Taking Us,” The Journal of Law, Medicine & Ethics 36, no. 1 (2008): https://doi.org/10.1111/j.1748-720X.2008.00238.x.

[50] Siddhārtha Gautama Buddha. “Dhammacakkappavattana Sutta London Buddhist Vihara.” (London Buddhist Vihara. 2010), 4.

[51] “BDK Translation of the Lotus Sutra” Bukkyo Dendo Kyokai (BDK). (2007): 36, http://www.bdk.or.jp/document/dgtl-dl/dBET_T0262_LotusSutra_2007.pdf.

[52] Siddhārtha Gautama Buddha, “Dhammacakkappavattana Sutta London Buddhist Vihara.” (London Buddhist Vihara. 2010), 4.

[53] Buddha, 4.

[54] LaFleur, Enhancement and Desire, 70.

[55] Ronald Epstein, “Genetic Engineering: A Buddhist Assessment.” Religion East and West, 1, (2001): 40, SFSU, http://online.sfsu.edu/rone/GEessays/GEBuddhism.html.

[56] Surendra Pathak, “Adi Shankaracharya: Contributions and Influences on Sanatana Dharma and Indian Culture.” (2016): Research Gate, https://www.researchgate.net/publication/303408886_Adi_Shankaracharya_Contributions_and_Influences_on_Sanatana_Dharma_and_Indian_Culture, 4.

[57] Chakravarthi Ram-Prasad, “Situating the Elusive Self of Advaita Vedānta,” In Self, No Self?: Perspectives from Analytical, Phenomenological, and Indian Traditions, (2010): https://doi.org/10.1093/acprof:oso/9780199593804.003.0009.

[58] Sri Śaṅkarācārya, “Upadeśasāhasrī: Gadyapadyabhāgadvayam  A Thousand Teachings: In Two Parts Prose and Poetry of Srī Sankarāchārya,” trans. Swami Jagānanda Madras: Sri Ramakrishna Math, 1949, https://archive.org/details/UpadeshaSahasriOfShankaracharyaRamaKrishnaMath/page/n45, 35.

[59] Refer to the online Sanskrit dictionary, spokensanskrit.org.

[60] Bharath Sriraman et al., “Consciousness and Science: A Non-Dual Perspective on the Theology-Science Dialogue,” Interchange 43, no. 2 (2013): 123, https://doi.org/10.1007/s10780-013-9188-9.

[61] Sriramen et al., Consciousness and Science, 118.

[62] DW Murray, “What Is the Western Concept of the Self? on Forgetting David Hume,” Ethos 21, no. 1 (1993): https://doi.org/10.1525/eth.1993.21.1.02a00010.

[63] Murray, 16.

[64]Andreas Vrahimis, “Rene Descartes’s Meditations on First Philosophy.” Milton: Macat International Limited, (2017). ProQuest Ebook Central.

[65] René Descartes, “Meditations on First Philosophy 1641.” Internet Encyclopedia of Philosophy, (1996). Some Resources for Self-Paced Logic, http://selfpace.uconn.edu/class/percep/DescartesMeditations.pdf., 10.

[66] David Hume, “A Treatise of Human Nature: Being an Attempt to Introduce the Experimental Method of Reasoning into Moral Subjects.” Auckland: Floating Press, The, (2009). ProQuest Ebook Central, 395.

[67] Immanuel Kant, “The Critique of Pure Reason” Newburyport: Philosophical Library/Open Road, (2015). ProQuest Ebook Central, 347.

[68] Cynthia Willett, et al., “Feminist Perspectives on the Self,” Stanford Encyclopedia of Philosophy, (1999): https://doi.org/10.1016/j.pestbp.2013.06.004

[69] Carson Strong, “The Moral Status of Preembryos, Embryos, Fetuses, and Infants,” Journal of Medicine and Philosophy 22, no. 5 (1997): https://doi.org/10.1093/jmp/22.5.457.

[70] Strong, 3.

[71] John B Appleby, et al., “Should the 14‐Day Rule for Embryo Research Become the 28‐Day Rule?” EMBO Molecular Medicine, (2018): https://doi.org/10.15252/emmm.201809437.

[72] Eric T. Olson, “Was I Ever a Fetus?” The Human Animal, (1999): 73-93, https://doi.org/10.1093/0195134230.003.0005.

[73] Olson, Was I Ever a Fetus, 11.

[74] Positing the self as relational does not change the dualistic framework of the individual as a self that is a mind/body phenomenon. This seems to be a definitional difference of autonomy rather than a conceptually different concept of self as something other than a thinking thing and a body.

[75] Willett, et al., Feminist Perspectives on the Self.

[76] Barbara Stock, “Relational Autonomy: From Critique to Action.” APA Newsletter on Philosophy and Medicine 14, 1: (2014): 18-21, https://cdn.ymaws.com/www.apaonline.org/resource/collection/250A3149-F981-47C2-9379-618149806E75/MedicineV14n1.pdf.

[77] Rita Charon, “The body and the self: the seamless experience of being,” Medical Humanities Review 16, (2002): 40, (italics mine). Research Gate, https://www.researchgate.net/publication/10574831_The_body_and_the_self_the_seamless_experience_of_being.

[78] Rita Charon, “Narrative Medicine: Honoring the Stories of Illness,” JAMA: The Journal of the American Medical Association, (2006): 208, https://doi.org/10.1001/jama.296.21.2622.

[79] It is peculiar that the idea that doctors ought to listen to patient stories is a novel concept in the medical field, perhaps that is indicative of the power issues that are important to address in bioethics, but this is beyond the scope of this thesis.

[80] Stock, Relational Autonomy, 19.

[81] “Non-personal” here does not mean the same as “relational.”

[82] As discussed on page 34 of this thesis.

Bibliography

Appleby, John B, and Annelien L Bredenoord. “Should the 14‐day Rule for Embryo Research Become the 28‐day Rule?” EMBO Molecular Medicine, 2018. https://doi.org/10.15252/emmm.201809437.

“BDK Translation of the Lotus Sutra” Bukkyo Dendo Kyokai (BDK). 2007.  http://www.bdk.or.jp/document/dgtl-dl/dBET_T0262_LotusSutra_2007.pdf.

Beauchamp, Tom, and J. Childress. Principles of Biomedical Ethics. Fifth ed. Oxford University Press, 2001.

Benjamin, Ruha. “Interrogating Equity: A Disability Justice Approach to Genetic Engineering,” International Summit on Human Gene Editing. The National Academies of Sciences, Engineering, and Medicine. September 18, 2017: 48-51.             http://www.nationalacademies.org/cs/groups/pgasite/documents/webpage/pga_170455.pdf.

Bostrom, Nick. “In Defense of Posthuman Dignity.” Bioethics, 19, 3, 2005: 202-14. https://doi.org/10.1111/j.1467-8519.2005.00437.x.

Buddha, Siddhārtha Gautama. “Dhammacakkappavattana Sutta London Buddhist Vihara.” London Buddhist Vihara. 2010.

Burke, Teresa Blankmeyer. “Quest for a Deaf Child: Ethics and Genetics.” Order No. 3460974, Ph.D. diss., The University of New Mexico, 2011. ProQuest, http://proxyga.wrlc.org/login?url=https://search-proquest-            com.proxyga.wrlc.org/docview/879050593?accountid=27346.

Charon, Rita. “Narrative Medicine: Honoring the Stories of Illness.” JAMA: The Journal of the American Medical Association, 2006. https://doi.org/10.1001/jama.296.21.2622.

Charon, Rita. “The Body and the Self: The Seamless Experience of Being.” Medical Humanities Review 16, 2002: 40-46. Research Gate,             https://www.researchgate.net/publication/10574831_The_body_and_the_self_the_seamless_experience_of_being.

Cooley, Dennis R. “Deaf by Design: A Business Argument against Engineering Disabled  Offspring.” Journal of Business Ethics 71, no. 2, 2006. https://doi.org/10.1007/s10551-006-9135-0.

Darnovsky, Marcy. “A Slippery Slope to Human Germline Modification.” Nature 499, no. 1, 2013: 127. https://doi.org/10.1038/499127a.

Davis, Dena S. “Genetic Dilemmas and the Child’s Right to an Open Future.” The Hastings Center Report, 1997. https://doi.org/10.2307/3527620.

Descartes, René. “Meditations on First Philosophy 1641.” Internet Encyclopedia of Philosophy, 1996. Some Resources for Self-Paced Logic,        http://selfpace.uconn.edu/class/percep/DescartesMeditations.pdf.

This file is of the 1911 edition of “The Philosophical Works of Descartes” (Cambridge     University Press), translated by Elizabeth S. Haldane.

Epstein, Ron. “Genetic Engineering: A Buddhist Assessment.” Religion East and West, 2001: 39-47. SFSU, http://online.sfsu.edu/rone/GEessays/GEBuddhism.html.

Goering, Sara. “Eugenics.” Stanford Encyclopedia of Philosophy. July 02, 2014. https://plato.stanford.edu/entries/eugenics/.

Hanh, Thich Nhat. “Awakening of the Heart: Essential Buddhist Sutras and Commentaries.” Berkeley: Parallax Press, 2012.

Häyry, M. “There Is a Difference between Selecting a Deaf Embryo and Deafening a Hearing  Child.” Journal of Medical Ethics, 2004. https://doi.org/10.1136/jme.2002.001891.

Hume, David. “A Treatise of Human Nature: Being an Attempt to Introduce the Experimental Method of Reasoning into Moral Subjects.” Auckland: Floating Press, 2009.   ProQuest Ebook Central.

Kahane, Guy, Jonathan Pugh, and Julian Savulescu. “Bioconservatism, Partiality, and the Human-Nature Objection to Enhancement.” Monist 99, no.4, 2016. https://doi.org/10.1093/monist/onw013.

Kant, Immanuel, “The Critique of Pure Reason” Newburyport: Philosophical Library/Open Road, 2015. ProQuest Ebook Central.

LaFleur, William R. “Enhancement and Desire: Japanese Qualms about Where Biotechnology Is  Taking Us.” Journal of Law, Medicine and Ethics 36, 1, 2008. https://doi.org/10.1111/j.1748-720X.2008.00238.x.

Markowski, Joseph D. “Buddhist Non-Cognitivism.” Asian Philosophy, 2014. https://doi.org/10.1080/09552367.2014.952577.

Murray, DW. “What Is the Western Concept of Self? On Forgetting David Hume.” Ethos, 1993. https://doi.org/10.1525/eth.1993.21.1.02a00010.

National Academies of Sciences, Engineering, and Medicine. “Human Genome Editing: Science, Ethics, and Governance.” The National Academies Press, 2017. https://doi.org/10.17226/24623.

National Institutes of Health. “The Belmont Report.” The Belmont Report Ethical Principles and Guidelines for the Protection of Human Subjects of Research, 1978. https://doi.org/10.1002/9780471462422.eoct093.

NIH U.S. National Library of Medicine. “What is Noninvasive Prenatal Testing (NIPT) and What Disorders Can it Screen For?” Genetics Home Reference. Last modified November 27, 2018. https://ghr.nlm.nih.gov/primer/testing/nipt.

NormileNov Dennis, “CRISPR Bombshell: Chinese Researcher Claims to Have Created Gene-edited Twins,” Science AAAS, November 27, 2018.             https://www.sciencemag.org/news/2018/11/crispr-bombshell-chinese-researcher-claims-have-created-gene-edited-twins.

O’Hagan, Emer, “Non-Self and Ethics: Kantian and Buddhist Themes” Ethics without Self, Dharma without Atman. Western and Buddhist Philosophical Traditions in Dialogue Gordon, Davis, Springer, 2018. https://philpapers.org/rec/OHANAE-2.

Olson, Eric T. “Was I Ever a Fetus?” The Human Animal, 1999, 73-93.             https://doi.org/10.1093/0195134230.003.0005.

Pathak Surendra. “Adi Shankaracharya: Contributions and Influences on Sanatana Dharma and Indian Culture.” 2016: Research Gate,             https://www.researchgate.net/publication/303408886_Adi_Shankaracharya_Contributions_and_Influences_on_Sanatana_Dharma_and_Indian_Culture.

Peetush, Ashwani Kumar, and Arjuna Maharaj. “Individual Autonomy: Self, Culture, and Bioethics.” Bioethics Update 4, no. 1, 2018: 24-34. https://doi.org/10.1016/j.bioet.2017.10.001.

Ram-Prasad, Chakravarthi. “Situating the Elusive Self of Advaita Vedānta.” In Self, No Self?: Perspectives from Analytical, Phenomenological, and Indian Traditions, 2010.             https://doi.org/10.1093/acprof:oso/9780199593804.003.0009.

Ravitsky, Vardit. “Genetics and Education: The Ethics of Shaping Human Identity.” The Mount Sinai Journal of Medicine, New York, 2002.          https://repository.upenn.edu/bioethics_papers/15/.

Resnik, David B, and Daniel B Vorhaus. “Genetic Modification and Genetic Determinism.” Philosophy, Ethics, and Humanities in Medicine, 2006. https://doi.org/10.1186/1747-5341-1-9.

Roduit, Johann AR, Holger Baumann, and Jan Christoph Heilinger. “Human Enhancement and    Perfection.” Journal of Medical Ethics 39, 2013: 647-650. https://doi.org/10.1136/medethics-2012-100920.

Sandel, Michael J. “The Case Against Perfection.” The Atlantic. April 01, 2004. https://www.theatlantic.com/magazine/archive/2004/04/the-case-against-    perfection/302927/.

Sankaracharya, Sri. “Upadeśasāhasrī: Gadyapadyabhāgadvayam – A Thousand Teachings: I Two Parts – Prose and Poetry of Srī Sankarāchārya.” Translated by Swami Jagānanda. Madras: Sri Ramakrishna Math, 1949.     https://archive.org/details/UpadeshaSahasriOfShankaracharyaRamaKrishnaMath/page/n45.

Savulescu, Julian. “Procreative Beneficence: Why We Should Select the Best Children.” Bioethics 15, no. 5-6, 2001. https://doi.org/10.1111/1467-8519.00251.

Sriraman, Bharath, and Walter Benesch. “Consciousness and Science: A Non-Dual Perspective   on the Theology-Science Dialogue.” Interchange 43, no. 2, 2013. https://doi.org/10.1007/s10780-013-9188-9.

Stock, Barbara. “Relational Autonomy: From Critique to Action.” APA Newsletter on Philosophy and Medicine, 2014.          https://cdn.ymaws.com/www.apaonline.org/resource/collection/250A3149-F981-47C2-9379-618149806E75/MedicineV14n1.pdf.

Stramondo, Joseph. “Disabled by Design: Justifying and Limiting Parental Authority to Choose   Future Children with Pre-Implantation Genetic Diagnosis.” Kennedy Institute of Ethics Journal, 2017: 475-500. https://doi.org/10.1353/ken.2017.0039.

Strong, Carson. “The Moral Status of Pre-embryos, Embryos, Fetuses, and Infants.” Journal of Medicine & Philosophy 22, no. 5, 1997. https://doi.org/10.1093/jmp/22.5.457.

Veit, Walter. “Procreative Beneficence and Genetic Enhancement.” Kriterion – Journal of Philosophy, 2018. http://www.kriterion-journal-of-          philosophy.org/kriterion/issues/Permanent/Kriterion-veit-01.pdf.

Vrahimis, Andreas. “Rene Descartes’s Meditations on First Philosophy.” Milton: Macat International Limited, 2017. ProQuest Ebook Central.

Willett, Cynthia, Ellie Anderson, and Diana Meyers. “Feminist Perspectives on the Self.” Stanford Encyclopedia of Philosophy, 1999. https://doi.org/10.1016/j.pestbp.2013.06.004.

THESIS CRICK Bioethics and The Nature of Self Dominant Western Concepts of Self Justify Gene-Editing Dec 21

Gene-Editing Technologies: Deaf Power and Resistance

1. Introduction: On Valuing Deaf Lives

The Deaf community has contributed to the value of my life immeasurably. I’ve made friends with deaf people who have shared perspectives with me that I had never considered as a hearing person[1]. After being admitted to Gallaudet University, I learned more about the obstacles and challenges that deaf people face every day. Issues such as language acquisition, quality of education, equal access to communication, and employment opportunities are among the primary challenges confronted by the d/Deaf people and the Deaf community. I’ve learned that deaf is not a disability and, perhaps most importantly, I’ve learned that the Deaf community has the power to confront these issues in ways that have been empowering and successful.

While immersed in the enjoyment of learning about and appreciating Deaf culture and ASL, the issue of biotechnology in the form of gene editing came to my attention. Developments in the field of genetic engineering have caused much concern within the Deaf community. It is now possible to identify at least 67 deaf genes through genetic diagnoses[2], and it is possible to alter the genetic composition of embryos and fetuses[3]. Although the technologies could be harnessed by Deaf parents to ensure that their children will be deaf, this would be the least likely use of the technology[4]. The problem, as it was explained to me, is that more than 90% of deaf people are born to hearing parents. Hearing parents are often uneducated about how to raise deaf children. They are not aware of the Deaf community nor of any favorable valuations of deaf lives. They are, more often than not, immediately confronted by the dominant medical perspective of deafness, which is pathological and audistic[5], and are convinced that their deaf children need to be fixed. The perception of deafness as a deficit rather than a positive quality is an almost universally held audistic paradigm that has oppressed deaf people throughout history.

When the dominant ideology that deaf is a negative meets biotechnology, the result is the attempt to resolve the “problem” of deafness. What this means, in the case of potential parents who want to have children, is that they would likely not blink at either the suggestion or the requirement that their unborn baby’s genes be manipulated to ensure that the baby would not be born deaf.

Since a majority of the members of the Deaf community are deaf people born to hearing parents[6], it logically follows that if hearing parents prevent deaf babies from being born, that the Deaf community will be substantially and negatively impacted. The world could lose cultures and languages that have enriched the lives of both deaf and hearing people, whether they are aware of it or not. Deaf lives benefit the world and to appreciate the value of deaf lives, we need a paradigm shift.

My question is about the dynamics of power between dominant groups and subcultures within the same society. How much power, if any, do subcultures have within the dominant culture? Are attempts to resist oppression or significantly change the paradigm limited and futile? If power is negotiated by discourse and consumerism, what are the boundaries? The focus in this paper is the relationship between the Deaf community and both popular culture and the medical/scientific communities. What is at stake in the discussion is the possibility that deaf lives, their cultures, and their languages could be permanently edited out of existence. It is not only deaf lives that are on the chopping block, but also the potential lives of any genetic variation (often referred to as “mutation”) that is not considered “normal.” What makes this analysis of the power between cultures particularly complicated is that this issue of biogenetic research is one of global socio-economic concern.

2. Foucault & Jankowski: A Framework of Understanding

In the article, “The Birth of Social Medicine,” Michel Foucault, Philosopher and social theorist, discusses the development of the medical practice from the 1700’s to explain the medicalization of the body as it progressed in Germany, France, and finally in England. During the 1800s, the bodies of the working poor became subject to medicalization for means of control and power. Foucault explained that wealthy classes were concerned with contamination and contagion from the poor who could not afford medical care. Thus, welfare was created to subject poor people to mandatory reporting of illness, medical intervention, and mandatory vaccination. Of interest to Foucault, aside from relations of power in general, was how to explain anti-medical insurgencies. The domination, control, and subjugation of the working poor by medicalization can be understood by unpacking the historical socio-political relations of power.

Foucault’s explanation of the development of biopolitics is useful in understanding the current structures of power in the medical system in the US. Vaccinations, for example, are commonly accepted as necessary for both one’s own health but also the health of the society. If one does not have the proper vaccinations, they will not be admitted into school. I have noticed that many people consider parental resistance to vaccination to be child abuse and neglect and that it is considered abnormal to reject even the flu shot. Although in the U.S. one can still argue for an exemption from some of the rules by citing religious objections, doing so is met with heavy criticism from popular culture. It does seem to make good sense that one should be vaccinated against diseases such as measles. However, individuals subject to such dominant ideologies no longer have much power to choose otherwise.

Foucault objects to the argument that one can view medicalization as merely a market relation between doctor and patient. Modern medicine, he contends, has evolved as a social medicine. He states, “The body is a biopolitical reality; medicine is a biopolitical strategy.”[7](p.137) If power is what is at stake with the subjugation of body to modern medicine, then anti-medicalization resistance would be a political act. Resisting vaccination, either for ourselves or our children, has political consequences.

Foucault’s analysis of the history of medicine shows that individual concerns for health and wellbeing were never the primary concern in the development of social medicine. If the socio-economic and political interests of the state and the wealthy are most important, then concerns of individuals that are at odds with social constructs are a potential threat to the establishment.

Take the case of deaf children. Parents often allow the intervention of medicine to “help” their children by subjecting their bodies to the latest “technologies” which often involve invasive and irreversible surgeries and a possible lifetime dependence on medical establishments. We can see that this type of conformity is expected by considering the results when parents resist the subjugation of their children’s bodies to science and medicine. Parents who resist attempts to “fix” deaf children are met with hostility and often accused of neglect or abuse. There have been a few cases in which doctors have charged parents with neglect or contacted Child Protective Services when parents have decided against the use of biotechnology in the form of cochlear implants.[8] If parents are currently expected to ensure that their children use technology to conform to hearing ideologies, then it is not difficult to imagine that societies would expect parents to use technology to prevent deaf babies from existing in the first place.

3. Who has Power?

Foucault’s account of the biohistory of medicine helps us to see that resistance could be vital to subverting the oppressive power of medicalization. Although the Deaf community has had some success in resistance to medicalization, the question of resistance looks a bit different in the case of gene editing technologies. Since these technologies have been (or are expected to be) commodified for use in reproduction, parents have some power in the discourse as potential consumers. It seems possible that educating mainstream culture about the value of Deaf lives may prevent hearing parents from aborting deaf babies or from allowing doctors to force their children’s bodies to be medicalized. However, if given a choice between having a deaf baby or manipulating the genes of the baby so that it would be hearing, it seems more likely that they will choose the latter. So, if the power to decide what is best for deaf babies and, by extension, the Deaf community, is left in the hands of hearing parents, it seems that the potential to be born deaf in the future would be highly improbable.

Research in the fields of Neuroscience and Linguistics has shown that deaf babies need immediate access to natural signed language just as hearing children need immediate access to spoken languages[9]. Much work has been done to educate hearing parents of deaf babies so that they will be aware of the child’s need for some argue, the right for full language access and the importance of early language acquisition to prevent developmental delays socially, emotionally, and academically[10]. Historically, it was commonly held that signed languages were inferior to spoken languages and that deaf children must be made to be hearing to succeed in life. The research and evidence to the contrary have emboldened and inspired the Deaf community to confront the audistic views of popular culture and launch strategies to educate parents and try to encourage them to be a part of the Deaf community, for the sake of the deaf child.

Jankowski’s Foucauldian study of the power dynamics between the Deaf community and mainstream ideologies focuses on the “rhetoric of normality” and the counter-rhetoric from the Deaf community.[11] Jankowski considered the strategies employed by Deaf in the US from the late 1700’s to challenge and overcome the negative perception of deaf people in society. She explained that deaf were segregated from the community early on and had fewer rights than hearing people. Deaf were thought to be incompetent in general and possibly burdensome to society. It was not until the American School for the Deaf (ASD) was established in 1817 that education for deaf people was considered useful. The school, Jankowski concludes, made the emergence of Deaf community possible.

A strong Deaf community is problematic for mainstream society because of opposing ideologies. For Deaf, the Deaf community with ASL at its core is key to success while to those who think that deafness is a problem to be fixed, integration into mainstream, or, becoming like hearing, is key to success. The two sides of the equation of the “rhetoric of normality” can be summarized as “Deaf Can” on one side and “deaf can’t” on the other. Jankowski recognized that since the inception of Deaf community, Deaf social movements, such as the creation of the National Association of the Deaf in 1880 and the Deaf President Now movement in 1988, have created significant changes of perception of Deaf people in dominant society. Deaf continue to challenge the oppressive audistic paradigm with the counter-narrative “Deaf Can.”

The Deaf community has established itself as a powerful force that successfully confronts social injustice at all levels of society. However, the threat of the science of gene editing to the existence of both deaf lives and Deaf community causes one to wonder whether ‘Deaf Can’ social movements will be enough to prevent the loss of both. What Deaf are up against with the development of gene editing technologies is the power of a global scientific/medical revolution that is worth billions[12] and many scientists from the international community who may not be interested in the issues of social justice, equity, cultural diversity, ethics, or the intrinsic value of diversity.

4. A Glimpse of the Dominant Paradigm in the Field of Biogenetic Research

The National Academy of Sciences (NAS) and the National Academy of Medicine’s Human Gene Editing Initiative organized a global summit in Dec. 2015 to discuss the scientific, ethical and governance issues associated with human gene-editing research.[13] Participants included multicultural perspectives from a variety of “stakeholders” including bioethicists, and other specialists in the fields of medicine, social sciences, and public policy. Ruha Benjamin addressed the summit, offering a “disability approach to genetic ethics.” Benjamin has researched the social impact and meaning of gene editing by examining the relationship between technological innovation and equity as it relates to socio-economic issues, including disabilities. He suggests that we need to “interrogate equity” to ensure that certain lives are not “edited out of existence.” Interrogating equity means asking the questions about who has power. Benjamin states that “…the work of interrogating equity serves as a vital framework for democratizing science more broadly because of the way it causes us to wrestle with some of the foundational assumptions of biotechnology…”[14] (p. 48) Benjamin asserts that gene editing techniques are “seeded” with economic and social values and interests and so we must ask questions such as, “Who designs the research?” “What are the guiding ideologies and assumptions?” and that to “democratize science,” the discourse about the direction and design of technological “breakthroughs” needs to include diverse voices “…at the table and not just on the table….”[15] (p. 50)

To those who are not acquainted with the severity of the issue at hand, it may seem as though what Benjamin has stated is not such a big deal. It may seem obvious that d/Deaf, in addition to disabled people, should be included at the table for discussion. However, during my research of the current academic debates about the ethics of biogenetic technologies, I’ve seen numerous examples of the pervasive “normative” ideologies. Bold and unapologetic arguments are made against the belief that deaf lives have any value or worth. To them, it seems, the loss of Deaf culture and languages would not be the loss of anything worth saving. They argue that deafness is a harm to either the child or society or both. To them, any argument of the value of biodiversity in the form of deafness will not have much merit. In other words, decisions about the lives of Deaf people continue to be made at the expense of the lives of deaf people because of dominant audistic ideologies.

In the article, “Genetics and Education: The Ethics of Shaping Human Identity,” Vardit Ravitsky argued that parental authority to make genetic decisions for their children should be limited, but only insofar as their choices did not challenge the ‘normative’ discourse. She acknowledged and quickly dismissed the validity of the Deaf community and argued that it would be unethical to cause deaf lives to exist. She wrote, “Just as parents should not be allowed to intentionally raise illiterate children who will not be able to become effectively integrated into other cultures, so they should not have the liberty to make genetic choices which will result in children with limited physical or cognitive abilities.”[16] (p. 315) Ravitsky believes that deaf and disabled are the same and that ‘disabled’ is a genetic problem rather than a social construction. For Ravitsky, deaf is not more than a “limited physical ability” equal to “limited cognitive abilities.” She argues that deafness is a harm to children because they may be unable to leave the Deaf community.

Although Ravitsky seeks to undermine to the power of the Deaf community and discredit the lives of Deaf and disabled people, her article is neither unique nor profound. This article, published by The Mount Sinai Journal of Medicine in 2002, is only one example of many that show that the dominant ‘normative’ ideology is that deafness is a disability and that disability is a pathology.

5. Showing up at the Table: Deaf Strategies

The Deaf community has been actively engaged with this problem at many levels. At the academic level of social discourse, the phrase, ‘Deaf Gain’ has become a popular buzzword. In the article, “Reframing: From Hearing Loss to Deaf Gain,” Dr. H-Dirksen Bauman and Dr. Joseph M. Murray discuss ‘Deaf Gain’ as a way to reframe the concept of ‘normal.’ They discuss the history of the concept of normal and its impact on deaf people. They write, “Deaf Gain is defined as a reframing of “deaf” as a form of sensory and cognitive diversity that has the potential to contribute to the greater good of humanity.”[17] They consider the extrinsic cultural, linguistic, and cognitive value of deaf lives and conclude that deaf lives benefit humanity in a variety of ways. In other words, Deaf should be seen as a gain rather than a loss. Not only is it true that ‘Deaf Can,’ but ‘Deaf Can’ in unique ways that are beneficial to the world.

In the policy arena, there are advisory committees that include bioethicists who attempt to have a direct influence on the policies and practices of scientists and the medical community. It is in this arena of public discourse where scientists, policymakers, doctors, and philosophers negotiate meaning and power, perhaps.

Dr. Teresa Blankmeyer Burke, who is both a Deaf Philosopher and a Bioethicist, does a considerable amount of work to educate, inform, and transform dominant ideologies to include Deaf perspectives in consideration of biotechnologies, including the issue of gene editing. In her chapter of the book, “Deaf Gain: Raising the Stakes for Human Diversity,” Dr. Burke considers the issue of Deaf Gain regarding the intrinsic value of deaf lives for the sake of human diversity. Burke writes, “…the move to eradicate deafness, and by extension, deaf people, relies at least in part on the claim that to be deaf confers much more disadvantage than gain.”[18](p.16) She concludes that it is not evident that it is better to be hearing or worse to be deaf, thus transferring the burden of proof to those who seek to fix the “problem” of deafness.

Additionally, mainstream American culture has been increasingly exposed to positive role models from the Deaf community who often use their platform of success to increase awareness of the Deaf community and ASL. Nyle Dimarco, a popular Deaf model and dancer, has possibly shattered ‘deaf can’t’ notions held by thousands of people just by his successes in popular culture.

Conclusion: Is Social Discourse Enough?

By these and other social movement strategies, audistic ideologies are being challenged and redefined, and power is being redistributed. Deaf are, in Jankowski’s words, “encouraging society to accept diversity.”[19](p. 164). To the extent that the medical/scientific community is made up of people from mainstream culture, these strategies make sense. However, to return to the issue of power, we cannot overlook the economic interests that control the direction and application of scientific research. Genetic editing is a “cutting edge” global multi-million-dollar technology that is funded primarily by biopharmaceutical companies.

Further analysis of the relationships between researchers and stockholders may reveal alternative ways to gain enough power to influence the direction of the development of the technologies. However, it is more than unsettling that the future of our genetic biodiversity is in the hands of a market-driven medical perspective. Although discourse and resistance are strategies that are, in Foucault’s words, transmitting and producing power, the paradigm shift that we need in the face of the threat to the genetic structure of our bodies, is one that values human life, any variation of human life, more than it values economic gain.

Notes

[1] ‘Hearing’ as opposed to ‘Deaf’ as cultural categories. See Bauman, Dirksen. “On Becoming Hearing: Lessons in Limitations, Loss, and Respect | Dirksen Bauman | TEDxGallaudet.” YouTube. March 06, 2015

[2] Shearer, A. Eliot, and Richard J.H. Smith. Current Opinion in Pediatrics. December 2012.

[3] The National Academies of Science, Engineering, and Medicine. (2017, September 18). International Summit on Human Gene Editing

[4] Burke, T. B. (2011). “Quest for a deaf child: Ethics and genetics”

[5] The belief that to be hearing is superior to being deaf. See Audism Unveiled. Directed by Ben Bahan, H-Dirksen Bauman, and Facundo Montenegro. Dawn Sign Press, 2008. DVD. September 28, 2017.

[6] “Quick Statistics About Hearing.” National Institute of Deafness and Other Communication Disorders. December 20, 2017.

[7] Foucault, M., Rabinow, P., & Faubion, J. D. (2002). Power. London: Penguin Press.

[8] For one example, see Howelett, E. (2017, November 13). Deaf News: German doctor takes parents to court to allegedly ‘force’ them to give child cochlear implants. Retrieved March 26, 2018, from http://limpingchicken.com/2017/11/13/deaf-news-german-doctor-takes-parents-to-court-to-force-them-to-give-child-cochlear-implants/

[9] Petitto, L. A. (1994). Are signed languages “real” languages? Evidence from American Sign Language and Langue des Signes Quebecoise. McGill University.

[10] Grosjean, Francois. “DSDJ:: Deaf Studies Digital Journal.” Deaf Studies Digital Journal:: ASL: The Right of the Deaf Child to Grow up Bilingual.

[11] Jankowski, Katherine. Deaf Empowerment: Emergence, Struggle, and Rhetoric. Washington, D.C.: Gallaudet Univ Press, 1997.

[12] Sherkow, Jacob S. “How Much Is a CRISPR Patent License Worth?” Forbes. February 24, 2017. Accessed April 15, 2018. https://www.forbes.com/sites/jacobsherkow/2017/02/21/how-much-is-a-crispr-patent-license-worth/#5f76f0dd6b77.

[13] The National Academies of Science, Engineering and Medicine. (2017, September 18). International Summit on Human Gene Editing

[14] International Summit on Human Gene Editing. The National Academies of Sciences, Engineering and Medicine. September 18, 2017. Benjamin, Ruha. “Interrogating Equity:  A Disability Justice Approach to Genetic Engineering.” 48-51

[15] Ibid.

[16] Ravitsky, Vardit. “Genetics and Education: The Ethics of Shaping Human Identity.” ScholarlyCommons. October 2002.

[17] Bauman, H-Dirksen L., Ph.D, and Joseph M. Murray, Ph.D. “Reframing: From Hearing Loss to Deaf Gain – DSDJGallaudet.” Deaf Studies Digital Journal.

[18] Burke, T. B. “Armchairs and Stares: On the Privation of Deafness” Deaf Gain: Raising the Stakes for Human Diversity. Bauman, H-Dirksen L., and Murray, Joseph J., eds. Minneapolis: University of Minnesota Press, 2014.

[19] Jankowski, Katherine. Deaf Empowerment: Emergence, Struggle, and Rhetoric. Washington, D.C.: Gallaudet Univ Press, 1997.

Bibliography

Audism Unveiled. Directed by Ben Bahan, H-Dirksen Bauman, and Facundo Montenegro. Dawn Sign Press, 2008. DVD. September 28, 2017. Accessed April 14, 2018.             https://vimeo.com/ondemand/audismunveiled .

Bauman, Dirksen. “On Becoming Hearing: Lessons in Limitations, Loss, and Respect | Dirksen   Bauman | TEDxGallaudet.” YouTube. March 06, 2015. Accessed April 09, 2018.    https://www.youtube.com/watch?v=yCuNYGk3oj8 .

Bauman, H-D. L. “Designing Deaf Babies and the Question of Disability.” Journal of Deaf    Studies and Deaf Education10, no. 3 (2005): 311-15. Accessed March 14, 2018.           doi:10.1093/deafed/eni031.

Bauman, H-Dirksen L., Ph.D., and Joseph M. Murray, Ph.D. “Reframing: From Hearing Loss to

Deaf Gain – DSDJGallaudet.” Deaf Studies Digital Journal. Accessed March 5, 2018. http://dsdj.gallaudet.edu/assets/section/section2/entry19/DSDJ_entry19.pdf

Benjamin, Ruha. “Interrogating Equity: A Disability Justice Approach to Genetic Engineering.” International Summit on Human Gene Editing. The National Academies of Sciences, Engineering, and Medicine. (pg September 18, 2017. Accessed Feb. 22, 2018.             http://www.nationalacademies.org/cs/groups/pgasite/documents/webpage/pga_170455.pdf.

Burke, T. B. “Armchairs and Stares: On the Privation of Deafness” Deaf Gain: Raising the    Stakes for Human Diversity. Bauman, H-Dirksen L., and Murray, Joseph J., eds.        Minneapolis: University of Minnesota Press, 2014. Accessed March 19, 2018. ProQuest      Ebook Central.

Burke, T. B. (2011). “Quest for a deaf child: Ethics and genetics” (Order No. 3460974).   Available from Natural Science Collection; ProQuest Dissertations & Theses Global.         (879050593). Retrieved from http://proxyga.wrlc.org/loginurl=https://search.proquest.com/docview/879050593?accou ntid=27346

Byrd, Serena, Andrew G. Shuman, Sharon Kileny, and Paul R. Kileny. “The Right Not to Hear:   The Ethics of Parental Refusal of Hearing Rehabilitation.” The Laryngoscope121, no. 8 (2011): 1800-804. Accessed April 14, 2018. doi:10.1002/lary.21886.

Foucault, M., Rabinow, P., & Faubion, J. D. (2002). Power. London: Penguin Press.

Grosjean, Francois. “DSDJ:: Deaf Studies Digital Journal.” Deaf Studies Digital Journal:: ASL:   The Right of the Deaf Child to Grow up Bilingual. Accessed April 15, 2018.       http://dsdj.gallaudet.edu/index.php?view=entry&issue=1&entry_id=34.

Howelett, E. (2017, November 13). Deaf News: German doctor takes parents to court to   allegedly ‘force’ them to give child cochlear implants. Retrieved March 26, 2018, from        http://limpingchicken.com/2017/11/13/deaf-news-german-doctor-takes-parents-to-court-   to-force-them-to-give-child-cochlear-implants/

International Summit on Human Gene Editing. The National Academies of Sciences,         Engineering, and Medicine. September 18, 2017. Benjamin, Ruha. “Interrogating Equity:     A Disability Justice Approach to Genetic Engineering.” 48-51 Accessed Feb. 22, 2018.             http://www.nationalacademies.org/cs/groups/pgasite/documents/webpage/pga_170455.pdf.

Jankowski, Katherine. Deaf Empowerment: Emergence, Struggle, and Rhetoric. Washington, D.C.: Gallaudet Univ Press, 1997.

Petitto, L. A. (1994). Are signed languages “real” languages? Evidence from American Sign Language and Langue des Signes Quebecoise. McGill University. Accessed April 14, 2018. http://petitto.net/wp-      content/uploads/2014/04/1994_Petitto_AreSignLanguagesReal.pdf

“Quick Statistics About Hearing.” National Institute of Deafness and Other Communication Disorders. December 20, 2017. Accessed April 09, 2018.          https://www.nidcd.nih.gov/health/statistics/quick-statistics-hearing.

Ravitsky, Vardit. “Genetics and Education: The Ethics of Shaping Human Identity.”         ScholarlyCommons. October 2002. Accessed April 11, 2018.        https://repository.upenn.edu/bioethics_papers/15/.

Shearer, A. Eliot, and Richard J.H. Smith. Current Opinion in Pediatrics. December 2012. Accessed April 15, 2018. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3694178/.

Sherkow, Jacob S. “How Much Is a CRISPR Patent License Worth?” Forbes. February 24, 2017. Accessed April 15, 2018. https://www.forbes.com/sites/jacobsherkow/2017/02/21/how-much-is-a-crispr-patent-license-worth/#5f76f0dd6b77.

Storey, J. (2015). Cultural theory and popular culture: an introduction (7th ed.). London: Routledge.