Human Genetic Selection and Enhancement
Parental Perspectives and Law
Summary
Excerpt
Table Of Contents
- Cover
- Title Page
- Copyright Page
- About the authors
- About the book
- Citability of the eBook
- Contents
- Acknowledgements
- Introduction
- Part I: Genetic Selection
- 1 Ethical standards of genetic counselling and reproductive autonomy
- 2 The criteria of rationality in genetic selection
- 3 Sex as a criterion for progeny selection
- 4 Reproductive harm
- 5 Selective procreation and disability
- 6 Parent-God analogy in procreative decisions
- 7 Spare embryos and parental obligations
- Part II: Genetic Enhancement
- 8 The question of justice in the debate over human enhancement
- 9 Human self-understanding in the debate over moral human enhancement: autonomy and authenticity
- 10 Genetic enhancement and moral perfection
- 11 Bioconservatism and the preference for status quo
- 12 Procreative autonomy in the context of person-affecting and impersonal reasons for human enhancement
- 13 Intrinsic and instrumental values in the assessment of human enhancement
- Concluding remarks
- Index
We owe special thanks to the reviewers of this book – Dr. Roberto Franzini Tibaldeo (UCL, Belgium) and Dr. Habil. Ewa Baum (University of Medical Sciences in Poznan, Poland) for their insightful remarks and critical comments which helped us to improve the final version of this book. Some parts of the book were previously published in Polish which we acknowledge in the end of the chapters. We are grateful to Philip Palmer for translating from Polish into English Chapters 3, 4, 8 and 9, as well as to Dr. Aeddan Shaw for translating chapters 2, 6, 7, 10, 11 and 12. Many thanks to Aeddan Shaw for his help in linguistic edition of the volume. We are also grateful to Zofia Szafrańska-Czajka for her help in technical pre-edition of the manuscript. We are indebted to Marcin S. Gołębiewski for his help in getting the rights to reproduce the picture by Norman Leto which graces the cover of the book. Last but not least, our word of thanks is to Beata Misiewicz for her excellent work on the cover design.
The preparation of this volume was financed by the Polish National Science Centre (Dec-2013/10/E/HS5/00157).
Marta Soniewicka
The tremendous recent advances in biotechnology and knowledge derived from the Human Genome Project are expected to bring revolutionary changes to the practice of medicine and improve many aspects of our life, particularly with regard to our health. Many enthusiasts, on the one hand, expect that 21st century genomic medicine will open up new opportunities for us to live longer and healthier lives. Sceptics, on the other hand, point out that the analytical and clinical validity and utility of the genetic information obtained from the individual personal genome are still too weak. Nevertheless, there are certain aspects of human life in which genetic knowledge has gained special concern and has become crucial in making decisions of existential importance. Procreation is certainly one of them.
Reproductive genetic testing is the prominent branch of applied genetics in medicine which was primarily developed for the purpose of assessing reproductive risks by detecting foetal anomalies (Hodge 2003). One can distinguish three sorts of reproductive genetic testing: (1) preconception testing (carrier testing), aimed at identifying whether a patient is a carrier of a recessive disease gene that can be passed on to successive generations; (2) prenatal diagnosis of foetal cells (PND), aimed at identification of traits or conditions of a future child; and (3) preimplantation genetic diagnosis (PGD), aimed at the identification of traits or conditions of an embryo formed by in vitro fertilization. PGD can be also used to analyse ova before fertilization to produce an embryo with or without certain genetic traits or conditions. One may also use sperm sorting before fertilization to form an embryo with certain traits or conditions (Knoppers, Bordet & Isasi 2006; Quaid 2008).
Genetic knowledge, combined with assisted reproduction techniques, is supposed to enhance reproductive choices. By the enhancement of reproductive choices one usually means the increase of reproductive opportunities, in particular the opportunity to decide whether to become a parent of a child with a certain genetic makeup. Reproductive genetics enable selective reproduction which consists of deciding which children will be born (PGD) or which children will not be born (PND) on the basis of their genetic traits and conditions (Press &Ariail 2003). This book addresses the ethical controversies concerning this reproductive opportunity, in particular the problem of genetic selection ←9 | 10→(Part I, Genetic Selection) and the idea of genetic enhancement (Part II, Genetic Enhancement).
Two general types of genetic selection can be distinguished: the negative and the positive. By negative genetic selection, one means weeding out a developing foetus, embryo or gamete with a diagnosed genetic disease or other unwanted trait (e.g. maleness or femaleness). By positive genetic selection one means choosing an embryo or gamete with a preferred diagnosed genetic trait. PGD may be used for positive selection for medical purposes when parents are screening for an embryo that would be a matching tissue donor for an ill child – the so-called saviour siblings. PGD may be also used to select for a genetic disorder or disability which the parents have and which they want to share with their progeny (e.g. hereditary deafness; Achondroplasia – dwarfism). Reproductive decisions based on positive genetic selection for disability are called dysgenic decisions or negative enhancement (Murray 2003).
By genetic selection based on medical traits and conditions, one usually means any kind of selection against or for a trait or a condition which is associated with a particular disease or a particular function/dysfunction of an organism and relevant to a medical purpose. One may name here sex selection for medical indicators, i.e. the identification of sex for the purpose of avoiding transfer of embryos with X-linked genetic diseases, such as haemophilia, Lesch-Nyhan syndrome etc. Sex selection to prevent X-linked diseases was the initial purpose of inventing and applying PGD to assisted reproduction. Now PGD can be used to detect monogenic diseases (such as Tay-Sachs, cystic fibrosis etc.) and to detect an abnormal number of chromosomes which are linked with genetic disorders (such as Turner syndrome, Down syndrome etc.). New uses of PGD include screening embryos for susceptibility to polygenic diseases (such as breast cancer), for late-onset diseases (such as Huntignton’s disease), for HLA-matching for existing children. The number of conditions and the predisposition for diseases identifiable by PGD continues to increase and scientists speculate that, within a few years, it will be possible to identify genetic markers correlated with diabetes, mental illnesses, stroke, asthma, and all types of cancer. The distinction between medical and non-medical genetic traits seems for many authors crucial for the moral evaluation of genetic selection and intervention, yet it remains vague. There is a wide grey zone where the line between medical and non-medical traits is blurred since there is no clear distinction between a trait and a disorder, which blurs another distinction – between therapy and enhancement.
Current biotechnological developments are opening up new opportunities for genetic interventions that are aimed not only at preventing genetic disease, ←10 | 11→but also at improving the human mental and physical condition. By enhancement, one means: (1) correcting effects of disability or disease, e.g. an artificial leg or arm (treatment and enhancement – a vague distinction based on normal functioning); (2) increasing natural human potential (natural endowments of capabilities) within the range typical of the species homo sapiens, e.g. raising a person’s IQ; (3) providing superhuman enhancements: increasing a person’s capabilities beyond the range typical for homo sapiens, e.g. providing humans with gills (the capacity to breath under water) or bat sonar (Savulescu, Meulen, Kahane 2011). One may also distinguish between ex-ante enhancement (introduced before birth of an enhanced person, e.g. genetic intervention or genetic selection) and ex-post enhancement (introduced after birth, e.g. pharmacology, surgery, education) (Kamm 2013). None of these distinctions provide sufficient insights for either distinguishing enhancement from therapy, or for distinguishing permissible interventions from non-permissible.
Genetic human enhancement is to be achieved by means of genetic selection or genetic intervention (in particular germline gene therapy and CRISPR/Cas9). Genetic intervention resulting in heritable changes in the human species has become the subject of heated debate, especially since new methods of gene editing were developed that are much more flexible, cheaper and faster. These include Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR), a technique that mimics nature (it is based on Cas9 – an RNA-guided enzyme that cuts DNA developed by bacteria), providing us with a new opportunity to not only combat genetic diseases (like HIV, Huntington’s disease, sickle cell anemia, cystic fibrosis, muscular dystrophy etc.), but also to take further control over nature and evolution. With these new technologies at hand, we can promote our well-being by making potential improvements to our physical traits (e.g. musculature) and creating capacities that go beyond the level of a normal healthy individual.
This leads us to ponder the question of what it means to be human and how our self-understanding could potentially be affected by gene editing. The controversy this issue provokes has led to hundreds of scholars, scientists, policymakers and experts meeting together to discuss the ethical implications of using this revolutionary technology. They have produced reports containing guidelines and recommendations for legal regulations and called for the kind of public education and engagement which could aid assessment of the relevant issues and give due consideration to how individual and societal values could be applied to the risks and benefits of human genetic enhancement (report of the National Academy of Sciences and National Academy of Medicine 2017).
←11 | 12→Our book is a response to this call. We would like to contribute to this ongoing debate by pondering the ethical and legal dimensions it involves. To realize this aim we present the philosophical doctrines which provide the justificatory frames and axiological sources for the future guidelines and precautionary measures. Since no single ethical position is fully adequate to guide our decisions in reproductive genetics, we believe that one should seek to formulate a pluralistic approach that captures the best elements of each of them. The present volume emphasizes the significance of both principles (norms) and virtues (character), as well as the relations and context in which reproductive decisions are made. We believe that our pluralistic approach, which accommodates insights from both virtue ethics and principle-based rationalistic doctrines, taking their consequences seriously, would serve as a unique guide to practical decision-making in reproductive genetics and a significant improvement over the predominant approaches in the field.
Reproductive genetics poses ethical and legal problems both old and new, which require the reconsideration of the scope and meaning of reproductive autonomy and responsibility for reproductive choices. Our book addresses the problems of reproduction by taking into account parental perspectives in resolving ethical and legal issues concerning new reproductive opportunities. The parental perspective introduced in the book embodies norms such as the norm of procreative beneficence (do good to your progeny), procreative nonmalaficence (do not harm your progeny), or such principles as the principle of reproductive autonomy, rationality, and, last but not least, parental love. We also emphasise that intentions and motives play a significant role in our moral thinking which cannot be simply reduced to the evaluation of the consequences of our actions or omissions. We attempt to elucidate that the core point of our moral thinking, specifically on reproduction, relies on our self-understanding, as well as the understanding of the meaning of life, death, and reproduction which we do not experience as mere facts. These significances have profound impact on ‘our capacity to live [and to choose] well’ as Cora Diamond claims (Diamond 1990, 173). Morality concerns the question of how to live well and how to treat other people (Dworkin 2011) and it should provide a ‘connection between a sense of who we are, what kind of being, and the way we live’ (Diamond 1990, 173).
According to Isaiah Berlin’s famous distinction, philosophers may be described either as hedgehogs (unifiers) or foxes (multipliers) (Berlin 1969). Hedgehogs defend a unified theory of value according to which there are no irreconcilable conflicts among genuine values. They believe that we can solve all moral conflicts by applying a special procedure or an external independent point of view which guarantees the verification of values. Foxes, like Berlin, reject the ←12 | 13→ideal of monism and defend pluralism of values, where conflicts of values are inevitable. He claimed that there are some ultimate values which are incommensurable, i.e., there is no common moral currency in terms of which their conflict could be resolved with no loss of value. It not only contests utilitarian thinking with its common moral currency but also the Kantian or Lockean tradition in moral philosophy, where basic rights and liberties are placed beyond the conflict. In value-conflict situations, a pragmatic compromise is possible, but it is not a stable one. And for many people this is the reason that the debates over such intricate questions as abortion, stem-cell research, genetic selection etc., remain open and unsettled ones. People do not agree about these fundamental issues since they do not share an understanding of the normative status of foetus or embryo – their values are rooted in different philosophical and religious worldviews. Following Berlin we do not share the French Enlightenment’s optimism that all values and rational goals can be ultimately humanized. Yet we attempt to explore moral horizons which set frames for these bioethical issues in order to provide a better and more profound understanding of the ongoing debate.
In one of the books on human enhancement, the authors mocked Michael Sandel’s objections raised against biotechnological reproductive enhancements (Sandel 2007) by presenting how odd it would sound if the U.S. Food and Drug Administration (FDA) required appropriate labelling which were to include them:
MAY CAUSE CONSTIPATION, DRY MOUTH, SKIN RASHES, AND LOSS OF OPENNESS TO THE UNBIDDEN. IF SYMPTOMS PERSIST AFTER 48 HRS, CONSULT YOUR PHYSICIAN AND/OR YOUR SPIRITUAL ADVISOR (Bostrom, Savulescu 2013).
There are many ethical concerns and moral threats that cannot be simply put in any prescriptions, yet we are aware of them and often find them much more important than any precautions concerning bodily harm alone. Take alcohol for instance. We can find labels on which we can read about alcohol’s harmful effects on the liver or brain, yet we do not expect to find any label telling us that the abuse of alcohol may affect our relationships and harm our loved ones. Our philosophical considerations presented in this book address exactly such issues which are not to be covered by any medical labels or prescriptions since they go far beyond safety concerns.
***
In Chapter 1, Ethical standards of genetic counselling and reproductive autonomy, we present the principles and aims of genetic counselling and claim ←13 | 14→that the purely rationalistic philosophy of medicine based on either duties or principles presents an incomplete picture of moral life which is not sufficient to cover the complexity of the ethics of reproduction. We argue that the neo-Aristotelian virtue approach to ethics could significantly enhance the understanding of medical ethics and its application in the clinical context of genetic counselling.
In Chapter 2, The criteria of rationality in genetic selection, we address the requirements of rationality in reproductive choices. We discuss confrontational and non-confrontational conceptions of rationality in the context of genetic selection, and we attempt to formulate conditions for a universal conception of the plurality of reasons.
In Chapter 3, Sex as a criterion for progeny selection, we address the problem of sex selection for both medical and non-medical reasons. We discuss the arguments for the ban on elective sex selection, such as: the violation of sex balance in a society, sexual discrimination and the promotion of sexual stereotypes. Further, we present the arguments against the ban on elective sex selection, with an emphasis on family balancing, which are rooted in procreative autonomy. We argue that the ethical framework based on the principle of procreative liberty is not sufficient to discuss the problem unless we refer to values which are to be protected by this principle. We draw special attention to parental intentions and motives elucidating their significance for the understanding of procreation.
In Chapter 4, Reproductive harm, we pose the question of whether prospective parents are obliged to prevent so-called reproductive harm caused by genetically transmitted diseases. We analyse the harm principle and the legal concept of harm. Our philosophical considerations lead to the conclusion that a legal concept of reproductive harm is not fully justified and therefore the idea of a wrongful life action seems misleading. We claim that the idea of reproductive harm should be replaced by the idea of moral procreative responsibility in the given context.
Chapter 5, Selective procreation and disability, addresses the problem of disability in the context of reproductive decisions based on genetic information. We pose the question of whether selective procreation should be considered as a moral obligation of prospective parents. To answer this question, a number of different ethical approaches to the problem are presented and critically analysed: the utilitarian; Julian Savulescu’s principle of procreative beneficence; and the rights-based. We claim that these approaches fail to provide any appealing principles on which reproductive decisions should be based. A full appreciation of the ethical significance of recognition in procreative decisions leads to a more nuanced and morally satisfying view than other leading alternatives presented in the chapter.
←14 | 15→In Chapter 6, Parent-God analogy in procreative decisions, we present the implication of applying the Parent-God analogy to reproductive decisions with regard to the problem of permissible arbitrariness of choosing or accepting the birth of a disabled child.
In Chapter 7, Spare embryos and parental obligations, we present an analysis of the reasoning against embryo selection based on the assumption that the predicted existence of spare embryos puts parents in a moral dilemma. We analyse such premises of this reasoning as: 1) an embryo is an actual part of the parent-child relationship; 2) this relationship is a basis for parental obligation; 3) embryo genetic selection leads to conflicts in terms of parental obligations constituting a moral dilemma; 4) we should avoid decisions leading to moral dilemmas. The validity of these premises depends on the solution of some fundamental and practical problems, such as whether moral status is a necessary condition to be a part of a relationship; what constitutes parental obligations; and whether embryo adoption can be seen as an option which eliminates the moral dilemma.
Details
- Pages
- 296
- Publication Year
- 2019
- ISBN (PDF)
- 9783631768150
- ISBN (ePUB)
- 9783631768167
- ISBN (MOBI)
- 9783631768174
- ISBN (Hardcover)
- 9783631744512
- DOI
- 10.3726/b14685
- Language
- English
- Publication date
- 2019 (July)
- Keywords
- Assisted reproduction Genetic selection Human enhancement Procreative beneficence Reproductive harm Procreative autonomy
- Published
- Berlin, Bern, Bruxelles, New York, Oxford, Warszawa, Wien, 2019. 288 pp., 2 tables