Objective : Pre-implantation genetic diagnosis (PGD) has been utilized by assisted reproductive technology (ART) to genetically screen embryos before placement in the uterus. However, many objections have been raised against the genetic screening of embryos, giving the practice an uncertain ethical, legal, and social status. Our aim was, therefore, to survey the possible presence and compliance to any legislation for PGD in the existing 60 in vitro fertilization (IVF) centres in the Gulf Cooperative Council (GCC) countries (...) as well as the availability of such a technological service. Methods : The study was performed in the department of biochemistry at King Faisal University between the periods Mar 2006 to Nov 2007. A questionnaire, in the form of a table, was sent to responsible persons of all 60 IVF centres and health authorities in the GCC countries. The collected data about the regulations and guidelines for the PGD program was analyzed using SPSS software package version 12.0 and the level of significance was set at P Results: 18 respondents, 16 IVF centres and 2 health authorities (26.87% of total) participated in the survey. The PGD techniques, mainly FISH analyses, were practiced in three centres in Saudi Arabia and one centre in the UAE. The major provider of PGD was King Faisal Specialist Hospital and Research Centre in Riyadh where more than 300 PGD tests had been performed. Whilst some regulations and guidelines have been introduced to IVF centres in all GCC countries, their implementations were left to the discretion of the treating centre. Conclusions : PGD services in the GCC countries were under-utilized due to the high cost of tests, the sophisticated technology involved and the poor returns of the investment. As a result of some deficiencies in the legislations which regulated PGD, the medical teams involved often faced difficulties on what rights to exercise in various PGD cases. (shrink)

While pre-implantation genetic diagnosis is available and legal in Malaysia, there is an ongoing controversy debate about its use. There are few studies available on individuals’ attitudes toward PGD, particularly among those who have a genetic disease, or whose children have a genetic disease. To the best of our knowledge, this is, in fact, the first study of its kind in Malaysia. We conducted in-depth interviews, using semi-structured questionnaires, with seven selected potential PGD users regarding (...) their knowledge, attitudes and decisions relating to the use PGD. The criteria for selecting potential PGD users were that they or their children had a genetic disease, and they desired to have another child who would be free of genetic disease. All participants had heard of PGD and five of them were considering its use. The participants’ attitudes toward PGD were based on several different considerations that were influenced by various factors. These included: the benefit-risk balance of PGD, personal experiences of having a genetic disease, religious beliefs, personal values and cost. The study’s findings suggest that the selected Malaysian participants, as potential PGD users, were supportive but cautious regarding the use of PGD for medical purposes, particularly in relation to others whose experiences were similar. More broadly, the paper highlights the link between the participants’ personal experiences and their beliefs regarding the appropriateness, for others, of individual decision-making on PGD, which has not been revealed by previous studies. (shrink)

Pre-Implantation Genetic Diagnosis represents the first fusion of genomics and assisted reproduction and the first reproductive technology that allows prospective parents to screen and select the genetic characteristics of their potential offspring. However, for some, the idea that we can intervene in the mechanisms of human existence at such a fundamental level can be, at a minimum, worrying and, at most, repugnant. Religious doctrines particularly are likely to collide with the rapidly advancing capability for science to (...) make such interventions. This paper focuses on opinions and arguments of selected religious scholars regarding ethical issues pertaining to PGD. In-depth interviews were conducted with religious scholars from three different religious organizations in the Klang Valley, Malaysia. Findings showed that Christian scholars are very sceptical of the long-term use of PGD because of its possible effect on the value of humanity and the parent-children relationship. This differs from Islamic scholars, who view PGD as God-given knowledge in medical science to further help humans understand medical genetics. For Buddhist scholars, PGD is considered to be new medical technology that can be used to save lives, avoid suffering, and bring happiness to those who need it. Our results suggest that it is important to include the opinions and views of religious scholars when it comes to new medical technologies such as PGD, as their opinions will have a significant impact on people from various faiths, particularly in a multi-religious country like Malaysia where society places high value on marital relationships and on the traditional concepts of family. (shrink)

With pre-implantation genetic diagnosis (PGD), genetic testing and selective transfer of embryos is possible. In the future, germ-line gene therapy (GLGT) applied to embryos before implantation, in order to introduce missing genes or replace mutant ones, may be possible. The objective of this dissertation is to analyse moral aspects of these technologies, as described by eighteen British, Italian and Swedish gynaecologists and geneticists. The objective is systematised into three parts: research interviews and qualitative analysis, philosophical (...) analysis, and elaboration of a framework that supports the combination of analytic methods. PGD was described as positive since it enabled some couples at risk for a genetic disease to have a child without the disease. PGD was described as in different senses ‘better’ than methods for prenatal diagnosis and selective termination of pregnancy. It was also described as positive since it provided couples at risk with one more option, even if it did not result in the birth of a healthy child. However, interviewees were concerned about the difficulty of defining and evaluating genetic disease. They were also concerned about patients’ choices, and about exaggerated use or misuse. Whereas PGD gave rise to ambivalence in terms of how to understand, describe and evaluate it, GLGT was often described as unrealistic or undesirable. The results of the qualitative analysis are used in a philosophical analysis of the concepts of choice, autonomous choice, ambivalence, trust and ambivalence in trust relations. A set of distinct characteristics of each concept are elaborated. The results of the philosophical analysis are used in the discussion of the results of the qualitative analysis. The study shows that the technologies imply both ‘new’ ways to perform ‘old’ medical practices and ‘new’ practices. Old moral questions are reformulated. New moral questions are added. Against the background of this, the concept of genetic identity is discussed. Key words: empirical ethics, pre-implantation genetic diagnosis, germ-line gene therapy, qualitative research, philosophical analysis, medical progress, genetic disease, choice, autonomous choice, ambivalence, trust, genetic identity. (shrink)

Pre-implantation genetic diagnosis became well known in Malaysia after the birth of the first Malaysian ‘designer baby’, Yau Tak in 2004. Two years later, the Malaysian Medical Council implemented the first and only regulation on the use of Pre-implantation Genetic Diagnosis in this country. The birth of Yau Tak triggered a public outcry because PGD was used for non-medical sex selection thus, raising concerns about PGD and its implications for the society. This study aims (...) to explore participants’ perceptions of the future implications of PGD for the Malaysian society. We conducted in-depth interviews with 21 participants over a period of one year, using a semi-structured questionnaire. Findings reveal that responses varied substantially among the participants; there was a broad acceptance as well as rejection of PGD. Contentious ethical, legal and social issues of PGD were raised during the discussions, including intolerance to and discrimination against people with genetic disabilities; societal pressure and the ‘slippery slope’ of PGD were raised during the discussions. This study also highlights participants’ legal standpoint, and major issues regarding PGD in relation to the accuracy of diagnosis. At the social policy level, considerations are given to access as well as the impact of this technology on families, women and physicians. Given these different perceptions of the use of PGD, and its implications and conflicts, policies and regulations of the use of PGD have to be dealt with on a case-by-case basis while taking into consideration of the risk–benefit balance, since its application will impact the lives of so many people in the society. (shrink)

Like any philosophically interesting health care practice, ethical analysis of Pre-implantation Genetic Diagnosis has produced a wide range of moral positions. For example, one might contrast David King's view that warns PGD should be strictly limited and regulated because it will soon result in the expansion of a troubling "laissez-faire eugenics" with Julian Savulescu's argument for the "principle of procreative beneficence" morally requiring parents to use information attained through PGD to select the "best child". That is, these (...) authors represent two poles of a sort of moral spectrum regarding PGD. At one end, we have a deep suspicion of the technology as directly leading to... (shrink)

Pre-implantation genetic diagnosis became well known in Malaysia after the birth of the first Malaysian ‘designer baby’, Yau Tak in 2004. Two years later, the Malaysian Medical Council implemented the first and only regulation on the use of Pre-implantation Genetic Diagnosis in this country. The birth of Yau Tak triggered a public outcry because PGD was used for non-medical sex selection thus, raising concerns about PGD and its implications for the society. This study aims (...) to explore participants’ perceptions of the future implications of PGD for the Malaysian society. We conducted in-depth interviews with 21 participants over a period of one year, using a semi-structured questionnaire. Findings reveal that responses varied substantially among the participants; there was a broad acceptance as well as rejection of PGD. Contentious ethical, legal and social issues of PGD were raised during the discussions, including intolerance to and discrimination against people with genetic disabilities; societal pressure and the ‘slippery slope’ of PGD were raised during the discussions. This study also highlights participants’ legal standpoint, and major issues regarding PGD in relation to the accuracy of diagnosis. At the social policy level, considerations are given to access as well as the impact of this technology on families, women and physicians. Given these different perceptions of the use of PGD, and its implications and conflicts, policies and regulations of the use of PGD have to be dealt with on a case-by-case basis while taking into consideration of the risk–benefit balance, since its application will impact the lives of so many people in the society. (shrink)

In Germany the question whether to uphold or repeal the judicial prohibition on Pre-implantation Genetic Diagnosis is being debated from quite different standpoints. This paper differentiates the major arguments according to their reasons as a) moral, b) evaluative , and c) legal. The arguments for and against PGD can be divided by content into three groups: arguments relating to the status of the embryo, focusing on individual actions in the implementation of PGD, and relating to the foreseeable (...) or probable consequences of PGD.In Germany, from a legal perspective, the status of the embryo does not permit the intervention of PGD; from a purely moral perspective, a prohibition on PGD does not appear defensible. It remains an open question, however, whether the moral argument permitting PGD should be restricted for evaluative reasons. The paper discusses the species-ethical reasons, for which Jürgen Habermas sees worrisome consequences in the wake of PGD to the extent that we comprehend it as the forerunner of a ‘positive eugenics’. It would so disrupt the natural preconditions of our universal morality. The question of whether to prohibit or allow PGD is not merely a question of simple moral and/or legal arguments, but demands a choice between evaluative, moral and species-ethical arguments, and the question remains open. (shrink)

The access to human pre‐implantation embryos that is afforded by procedures now developed for the treatment of infertility presents the possibility of very early prenatal diagnosis, before implantation in the uterus, of certain genetic diseases. Only the normal embryos would be replaced in the mother for initiation of implantation and pregnancy. Early experiments on a mouse model for Lesch‐Nyhan syndrome (HPRT‐deficiency) show that pre‐implantation diagnosis of genetic disease is feasible.

In this paper I argue that the account of deliberative democracy advanced by Amy Gutmann and Dennis Thompson (1996, 2004) is a useful normative theory that can help enhance our deliberations about public policy in morally pluralistic societies. More specifically, I illustrate how the prescriptions of deliberative democracy can be applied to the issue of regulating non-medical uses of pre-implantation genetic diagnosis (PGD), such as gender selection. Deliberative democracy does not aim to win a philosophical debate among (...) rival first-order theories, such as libertarianism, egalitarianism or feminism. Rather, it advances a second-order analysis that strives to help us determine what would constitute a reasonable balance between the conflicting fundamental values that arise in the context of regulating PGD. I outline a theoretical model (called the Reasonable Genetic Intervention Model) that brings these issues to the fore. Such a model incorporates the concern for both procedural and substantive principles; and it does so in way that takes provisionality seriously. (shrink)

The primary question to be addressed here is whether pre-implantation genetic diagnosis (PGD), used for both negative and positive trait selection, benefits potential supernumerary embryos. The phrase ‘potential supernumerary embryos’ is used to indicate that PGD is typically performed on a set of embryos, only some of which will be implanted. Prior to any testing, each embryo in the set is potentially supernumerary in the sense that it may not be selected for implantation. Those embryos that (...) are not selected, and hence destroyed or frozen, are ‘actually supernumerary’. The argument to be advanced is hypothetical: If embryos may be said to benefit or be harmed by our actions, then PGD used to select for an embryo or embryos with the highest expected Wellbeing benefits potential supernumerary embryos. The argument shows that the ‘non-identity’ problem is not sufficient to show that eugenic selection does not benefit supernumerary embryos. (shrink)

Prenatal diagnosis utilizes invasive procedures such as amniocentesis, chorionic villus sampling, cord blood sampling and pre-implantation genetic diagnosis. These techniques can diagnose serious foetal illnesses and this therefore provides valuable information to couples, helping them to prepare for the birth of an affected child. It also affords women the freedom to decide whether to terminate a pregnancy. The selective termination of foetuses with serious disabilities does not represent disability discrimination because women and parents are actually rejecting (...) the disability, rather than the foetus itself More significantly, the choice to abort a foetus with a serious illness or disability is an intensely private and personal exercise that does not and cannot be reflective of a wider public morality. Exactly the same can be said of the choice to selectively abort foetuses based solely on their sex. The private choice of women in this respect does not amount to the social devaluation of women. Firstly, it is an erroneous assumption that women in Australia prefer male babies. Secondly, even if there is a preference for male babies, banning prenatal sex selection would be treating just one of many symptoms of sexism, rather than curing the primary causes. The moral right of all women to reproductive freedom is an embodiment of their equal value in society. (shrink)

This article analyzes the main reasons offered by the literature in relation to the question of whether pre-implantation genetic diagnosis and selection should be allowed in the context of assisted reproduction techniques to avoid the birth of children with disabilities. The bioethical literature faces a challenge from the disability discourse. When the oppressive social dimension of disability is taken into account, it results in a series of questions that could challenge the most settled conclusions of the bioethical (...) debate. However, the social model has not been without criticism and one of them, the underestimation of the importance of biological traits origin against a disability of social origin, resonates particularly in the debate on preimplantation genetic selection. (shrink)

Today, French public debate and bioethics research reflect an ongoing controversy about eugenics. The field of reproductive medicine is often targeted as pre-implantation genetic diagnosis (PGD), prenatal diagnosis, and prenatal detection are accused of drifting towards eugenics or being driven by eugenics considerations. This article aims at understanding why the charge against eugenics came at the forefront of the ethical debate. Above all, it aims at showing that the charge against prenatal diagnosis is groundless. The (...) point of view presented in this article has been elaborated jointly by a geneticist and a philosopher. Besides a survey of the medical, bioethical, philosophical and social sciences literature on the topic, the methodology is founded on a joint analysis of geneticist’s various consults. Evidence from office visits demonstrated that prenatal diagnosis leads to case-by-case decisions. As we have suggested, this conclusion does not mean that prenatal diagnosis is devoid of ethical issues, and we have identified at least two. The first is related to the evaluation of a decision to abort. The second line of ethical questions arises from the fact that the claim for “normality” hardly hides normative and ambiguous views about disability. As a conclusion, ethical dilemmas keep being noticeable in the field of reproductive medicine and genetic counselling, but an enquiry about eugenic tendencies probably does not allow us to understand them in the proper way. (shrink)

Is it right to use pre-implantation genetic diagnosis to select an embryo free of the gene for early-onset Alzheimer’s disease?A 30 year old woman with the gene for early-onset Alzheimer’s disease, who seems certain to develop the disease by the time she is 40, has used IVF and preimplantation genetic diagnosis to select an embryo that is free of the mutant gene. The woman, a geneticist, has given birth to a mutation-free child. This marks the (...) first time that preimplantation genetic diagnosis has been used to “weed out” an embryo with the defect.1–3Early-onset Alzheimer’s is an inherited, incurable disease striking people …. (shrink)

In this paper I present an argument in favour of a parental duty to use preimplantation genetic diagnosis (PGD). I argue that if embryos created in vitro were able to decide for themselves in a rational manner, they would sometimes choose PGD as a method of selection. Couples, therefore, should respect their hypothetical choices on a principle similar to that of patient autonomy. My thesis shows that no matter which moral doctrine couples subscribe to, they ought to conduct (...) the PGD procedure in the situations when it is impossible to implant all of the created embryos and if there is a significant risk for giving birth to a child with a serious condition. (shrink)

Disability activists influenced by queer theory and advocates of “human enhancement” have each disputed the idea that what is “normal” is normatively significant, which currently plays a key role in the regulation of pre-implantation genetic diagnosis (PGD). Previously, I have argued that the only way to avoid the implication that parents have strong reasons to select children of one sex (most plausibly, female) over the other is to affirm the moral significance of sexually dimorphic human biological norms. (...) After outlining the logic that generates this conclusion, I investigate the extent to which it might also facilitate an alternative, progressive, opening up of the notion of the normal and of the criteria against which we should evaluate the relative merits of different forms of embodiment. This paper therefore investigates the implications of ideas derived from queer theory for the future of PGD and of PGD for the future of queerness. (shrink)

Preimplantation genetic diagnosis (PIGD) goes some way to meeting the clinical, psychological and ethical problems of antenatal testing. We should guard, however, against the assumption that PIGD is the answer to all our problems. It also presents some new problems and leaves some old problems untouched. This paper will provide an overview of how PIGD meets some of the old problems but will concentrate on two new challenges for ethics (and, indeed, law). First we look at whether we (...) should always suppose that it is wrong for a clinician to implant a genetically abnormal zygote. The second concern is particularly important in the UK. The Human Fertilisation and Embryology Act (1990) gives clinicians a statutory obligation to consider the interests of the future children they help to create using in vitro fertilisation (IVF) techniques. Does this mean that because PIGD is based on IVF techniques the balance of power for determining the best interests of the future child shifts from the mother to the clinician? (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 11.3 (2001) 219-220 [Access article in PDF] Introduction In the last couple of decades,commodification has become almost a buzz-word in bioethics. As we become technically more adept at detaching elements of human bodies and making use of them for others, it seems as if more and more things-from motherhood to gametes to kidneys to our very DNA-can be borrowed, rented, bought, and sold. Other (...) technology allows us unprecedented influence over the characteristics of our offspring (unprecedented, that is, if we ignore the many cultures in which children were and are routinely discarded because they are the wrong sex, disabled, or the product of multiple births). It is common, for example, for writers to worry that the availability of pre-implantation genetic diagnosis will seduce parents into thinking of their children as commodities, to be ordered in much the same way as automobiles, with the inevitable concomitant that they will want to "return" children who do not measure up to their specifications.Unfortunately, a great deal of the talk about "commodification" has been clumsy and sloppy. The term has been used as a magic bullet, as if saying "But that's commodification!" is the same as having made an argument. In fact, commodification of human persons, human bodies, human labor, human relationships, is a complex matter. In many human dealings, commodified and noncommodified understandings of the same thing, or the same transaction, exist more or less comfortably together. Most Westerners condemn commercial sex, for example, while at the same time knowing that in most times and places in the world, marriage was and is thought of as primarily an economic relationship. The common use of "cheap" in post-World War II American slang to describe a teenage woman who is more sexually available than her peers perfectly captures the market rhetoric inherent in respectable American sexual mores.Given this complexity, it is not surprising that many writers in bioethics have gravitated to the work of Margaret Jane Radin. In her two books, Contested Commodities (Harvard University Press, 1996) and Reinterpreting Property (University of Chicago Press, 1993), and many articles, [End Page 219] Radin has taken on the problem of commodification without falling into either sentimentality or cynicism. She is a careful thinker and a careful (and demanding!) writer. We have long valued her work as we have sought to grapple with the many ways in which the problem of commodification arises in bioethics. In this issue of the Kennedy Institute of Ethics Journal, entitled "Who's Afraid of Commodification?," we have asked three colleagues to join us in reflecting on aspects of the problem of commodification in bioethics. We are especially delighted that Radin agreed to respond to our efforts in this direction.Lisa Sowle Cahill takes the discussion of commodification to a new level, as she focuses on global ethics, especially genetic research and the marketing and accessibility of pharmaceuticals. Dena S. Davis explores the debates over refusal of treatment and rational suicide and concludes that to put a value on particular pieces of one's lifespan does not necessarily lead to negative aspects of commodification. Ronald M. Green analyzes Radin's use of Kant. Suzanne Holland addresses commodification of body parts, from gametes to cadaveric tissue, and concludes with some specific recommendations. Thomas A. Shannon takes a fresh look at the problem of whether we should allow the sale of organs; he shares with Holland a special concern for the rhetoric of commodification. Finally, Margaret Jane Radin responds to the preceding essays, asking four "stubbornly difficult" questions, questions that show that the debate about commodification is only just begun. Dena S. Davis and Suzanne Holland... (shrink)

Germany is an interesting case with respect to the governance of reprogenetics. It has a strong profile in the technosciences and high aims regarding the global bioeconomy, yet her regulation of human genetics, reproductive medicine and embryo research has for a long time been rather restrictive. German biopolitical exceptionalism has often been explained by reference to Catholicism and the legacy of the Nazi past. The Germans, so goes the common story, have learnt the lessons of history and translated them into (...) unconditional respect for human dignity, which in turn translates into unconditional protection of human life, including the human embryo, and the firm repudiation of any eugenic distinction between ‘life worth to live’ and ‘life not worth to live’. This, however, is not the whole story. Alongside deontological strictness we find another strand of governing body politics and reprogenetics in Germany, the rule-and-exception model, running from the mid-1970s abortion law via the 2002 Stem Cell Act to the 2011 regulation of pre-implantation genetic diagnosis. In contrast to the former, that strongly draws on Kant and his concept of human dignity, the latter bears resemblances to Carl Schmitt's concept of state of exception. The article will show that the rule-and-exception model builds the exception into the rule and transforms the meaning and mandate of ethics, namely from safeguarding ethical standards to deciding about the exception. Given that the exception has now tended to become the rule, the question is whether the lessons of history will govern German reprogenetics for much longer. (shrink)

The routinization of prenatal diagnosis is the source of bioethical and policy debates regarding choice, autonomy, access, and protection. To understand these debates in the context of cultural diversity and moral pluralism, we compare Israel and Germany, focusing on two recent repro-genetic “hot spots” of such policy-making at the beginning of life: pre-implantation genetic diagnosis and non-invasive prenatal genetic testing, two cutting-edge repro-genetic technologies that are regulated and viewed very differently in Germany and (...) Israel, reflecting different medicolegal policies as well as public and bioethical considerations. First, we compare policy-making in the context of PGD for HLA typing, used to create sibling donors, approved in Israel under specific conditions while prohibited in Germany. Second, we compare policy-making in the context of NIPT, which came under fire in Germany, while in Israel there has been little public debate about it. Both countries justify their contrasting policies as reflecting a concern for the well-being and care of the embryo/child, thus highlighting different concepts of embryo/child protection, autonomy, family relations, and the impact of religion and history on the promotion/protection of life. We use the juxtaposition of PGD and NIPT to highlight some inconsistencies in policies concerning the protection of extra- and intra-corporeal embryos. We conclude by drawing on the comparison to show how national variations exist alongside co-evolution. (shrink)

A recent article on the front page of The Independent reported that the genetic ‘manipulation’ of IVF embryos is to start in Britain, using a new revolutionary gene-editing technique, called Crispr/Cas9. About three weeks later, on the front page of the same newspaper, it was reported that the National Health Service faces a one billion pound deficit only 3 months into the new year. The hidden connection between these reports is that gene editing could be used to solve issues (...) related to health care allocation. Improving the health of future generations might coincide with public health goals; it might improve the health of individuals and communities, and, if successful, might be seen as a public good. However, enhancing future generations will require In Vitro Fertilisation and Pre-implantation Genetic Diagnosis. Remarkably, the necessary involvement of women in an enhancing scenario has not been discussed by its proponents. The present discourse on moral obligations of future generations, although not referring to women, seems to imply that women might be required, morally, if not legally, to reproduce with IVF. Enhancing future generations will be gendered, unless the artificial womb is developed. These are challenging issues that require a wider perspective, of both women and men. Despite the lack of a unified feminist conclusion in the discussions about the merits and risks of human genome modification, there is an urgent need to clarify the role of women in this scenario. (shrink)

This paper aims to address how artificial gestation might affect equality of opportunity for the unborn and any resultant generation of “ectogenetic” babies. It will first explore the current legal obstacles preventing the development of ectogenesis, before looking at the benefits of allowing this technology to control fetal growth and development. This will open up a discussion of the treatment/enhancement divide regarding the use of reproductive technologies, a topic featured in various bioethical debates on the subject. Using current maternity practices (...) in Western society as a comparator, this paper will conclude that neither naturally nor artificially gestated fetuses have interests that can conflict with those of potential parents who might want to use this technology to control fetal development. Such control may include selective implantation of embryos of a desired gender, deliberate choice of genetic traits, or maintenance of an ideal incubation environment to avoid fetal damage. Objections on the basis of disability as well as concerns regarding eugenics will be addressed. The paper will conclude that none of these objections are compelling grounds to prevent the development and use of ectogenesis technologies for the purpose of achieving specific reproductive goals, particularly when compared to current practices in pre-implantation genetic diagnosis and selective abortion on the grounds of undesired traits. As such, when deciding whether to support ectogenesis research, the enduring interests of parents must be the primary consideration, with societal concerns regarding potential misuse the only valid secondary consideration. (shrink)

Probably the main purpose of reproductive technologies is to enable people who choose to do so to avoid the birth of a baby with a disabling condition. However the conditions women want information about and the ‘price’ they are willing to pay for obtaining that information vary enormously. Individual women have to arrive at their own prenatal testing choices by ‘trading off’ means and ends in order to resolve the dilemmas facing them. We know very little about how individuals make (...) these trade-offs, so it is difficult to predict how new technologies will affect their choices and preferences. Uptake decisions can be expected to change, especially in the group of women who now are put off by some aspect of the current screening approach, where the avoidance of miscarriage risk may have provided a kind of ‘psychological shelter’, protecting a lot of people from having to make other decisions. Technologies such as Pre-implantation Genetic Diagnosis may remove a second ‘psychological shelter’ because they offer the means of avoiding the birth of an affected child without terminating a pregnancy. Even if new technologies will make some decisions easier in terms of their cognitive demands, they will also create new dilemmas and decision making will not necessarily become less stressful in emotional terms. Key challenges concern information and decision-making. (shrink)

In The Future of Human Nature, Jürgen Habermas raises the question of whether the embryonic genetic diagnosis and genetic modification threatens the foundations of the species ethics that underlies current understandings of morality. While morality, in the normative sense, is based on moral interactions enabling communicative action, justification, and reciprocal respect, the reification involved in the new technologies may preclude individuals to uphold a sense of the undisposability of human life and the inviolability of human beings that (...) is necessary for their own identity as well as for reciprocal relations. Engaging with liberal bioethics and Catholic approaches to bioethics, the article clarifies how Habermas’ position offers a radical critique of liberal autonomy while maintaining its postmetaphysical stance. The essay argues that Habermas’ approach may guide the question of rights of future generations regarding germline gene editing. But it calls for a different turn in the conversation between philosophy and theology, namely one that emphasizes the necessary attention to rights violations and injustices as a common, postmetaphysical starting point for critical theory and critical theology alike. In 2001, Jürgen Habermas published a short book on questions of biomedicine that took many by surprise.[1] To some of his students, the turn to a substantive position invoking the need to comment on a species ethics rather than outlining a public moral framework was seen as the departure from the “path of deontological virtue,”[2] and at the same time a departure from postmetaphysical reason. Habermas’ motivation to address the developments in biomedicine had certainly been sparked by the intense debate in Germany, the European Union, and internationally on human cloning, pre-implantation genetic diagnosis, embryonic stem cell research, and human enhancement. He turned to a strand of critical theory that had been pushed to the background by the younger Frankfurt School in favor of cultural theory and social critique, even though it had been an important element of its initial working programs. The relationship of instrumental reason and critical theory, examined, among others, by Max Horkheimer, Theodor W. Adorno, and Herbert Marcuse and taken up in Habermas’ own Knowledge and Interest and Theory of Communicative Action became ever-more actual with the development of the life sciences, human genome analysis, and genetic engineering of human offspring. Today, some of the fictional scenarios discussed at the end of the last century as “science fiction” have become reality: in 2018, the first “germline gene-edited” children were born in China.[3] Furthermore, the UK’s permission to create so-called “three-parent” children may create a legal and political pathway to hereditary germline interventions summarized under the name of “gene editing.”In this article, I want to explore Habermas’ “substantial” argument in the hope that philosophy and theology become allies in their struggle against an ever-more reifying lifeworld, which may create a “moral void” that would, at least from today’s perspective, be “unbearable”, and for upholding the conditions of human dignity, freedom, and justice. I will contextualize Habermas’ concerns in the broader discourse of bioethics, because only by doing this, his concerns are rescued from some misinterpretations.[1] Jürgen Habermas, The Future of Human Nature.[2] Ibid., 125, fn. 58. 8[3] Up to the present, no scientific publication of the exact procedure exists, but it is known that the scientist, Jiankui He, circumvented the existing national regulatory framework and may have misled the prospective parents about existing alternatives and the unprecedented nature of his conduct. Yuanwu Ma, Lianfeng Zhang, and Chuan Qin, "The First Genetically Gene‐Edited Babies: It's “Irresponsible and Too Early”," Animal Models and Experimental Medicine ; Matthias Braun, Meacham, Darian, "The Trust Game: Crispr for Human Germline Editing Unsettles Scientists and Society," EMBO reports 20, no. 2. (shrink)

To explore how cultural beliefs are reflected in different popular views of pre-implantation genetic diagnosis for human leukocyte antigen match (popularly known as “savior siblings”), we compare the reception and interpretations, in Germany and Israel, of the novel/film My Sister’s Keeper. Qualitative analysis of reviews, commentaries and posts is used to classify and compare normative assessments of PGD for HLA and how they reproduce, negotiate or oppose the national policy and its underlying cultural and ethical premises. Four (...) major themes emanated from the comparison: loss of self-determination and autonomy; loss of dignity through instrumentalization; eugenics and euthanasia; and saving life. In both countries, most commentaries represented a dominant position, with a few negotiated positions. We also highlight the decoding of a relatively less explored bioethical aspect of My Sister’s Keeper’s narrative, namely the meaning of euthanasia. We conclude by discussing how the findings relate to attempts of providing cultural explanations for the regulation of HLA-PGD. (shrink)

The purpose of this paper is to review critically Julian Savulescu's principle of 'Procreative Beneficence,' which holds that prospective parents are morally obligated to select, of the possible children they could have, those with the greatest chance of leading the best life. According to this principle, prospective parents are obliged to use the technique of pre-implantation genetic diagnosis (PGD) to select for the 'best' embryos, a decision that ought to be made based on the presence or absence (...) of both disease traits and non-disease traits such as intelligence. While several articles have been written in response to Savulescu's principle, none has systematically explored its philosophical underpinnings to demonstrate where it breaks down. In this paper I argue that the examples that Savulescu employs to support his theory in fact fail to justify it. He presents these examples as analogous to PGD, when in fact they differ from it in subtle but morally relevant ways. Specifically, Savulescu fails to acknowledge the fact that his examples evoke deontological and virtue ethics concerns that are absent in the context of PGD. These differences turn out to be crucial, so that, in the end, the analogies bear little support for his theory. Finally, I lay out the implications of this analysis for reproductive ethics. (shrink)

A good part of the explanation for differences in happiness has to do with genetics. This chapter reviews the scientific data relevant to a heritable component to happiness, and the prospects for using current and future technologies to alter those who have not won the genetic lottery. The chapter looks at the concept of heritability, and then at the heritability of happiness. The notion of heritability is typically seen as a composite of two factors: genetics and the environment. Three (...) promising technologies could be used to change the biological basis of happiness: pre‐implantation genetic diagnosis (PGD), genetic engineering, and advanced pharmacology. Unfortunately, on enhancing the moods of healthy individuals, there is limited research. The fact that two thirds of these “normal and healthy” volunteers felt “better than well” sounds like good news for happy‐people‐pills. The chapter touches upon the paucity of studies of the effects of antidepressants on healthy individuals. (shrink)

Can Rawlsian public reason sufficiently justify public policies that regulate or restrain controversial medical and technological interventions in bioethics (and the broader social world), such as abortion, physician aid-in-dying, CRISPER-cas9 gene editing of embryos, surrogate mothers, pre-implantation genetic diagnosis of eight-cell embryos, and so on? The first part of this essay briefly explicates the central concepts that define Rawlsian political liberalism. The latter half of this essay then demonstrates how a commitment to Rawlsian public reason can ameliorate (...) (not completely resolve) many of the policy disagreements related to bioethically controversial medical interventions today. The goal of public reason is to reduce the size of the disagreement by eliminating features of the disagreement that violate the norms of public reason. The norms of public reason are those norms that are politically necessary to preserve the liberal, pluralistic, democratic character of this society. What remains is reasonable disagreement to be addressed through normal democratic deliberative processes. Specific issues addressed from a public reason perspective include personal responsibility for excessive health costs, the utility of a metaphysical definition of death for organ transplantation, and the moral status of excess embryos generated through IVF and/or their use in medical research. (shrink)

Public attention on embryo research has never been greater. Modern reproductive medicine technology and the use of embryos to generate stem cells ensure that this will continue to be a topic of debate and research across many disciplines. This multidisciplinary book explores the concept of a 'healthy' embryo, its implications on the health of children and adults, and how perceptions of what constitutes child and adult health influence the concept of embryo 'health'. The concept of human embryo health is considered (...) from preconception to pre-implantation genetic diagnosis to recent foetal surgical approaches. Burgeoning capacities in both genetic and reproductive science and their clinical implications have catalysed the necessity to explore the concept of a 'healthy' embryo. The authors are from five countries and 13 disciplines in the social sciences, humanities, biological sciences and medicine, ensuring that the book has a broad coverage and approach. (shrink)

How do professionals working in pre-implantation genetic diagnosis reflect upon their decision making with regard to ethical challenges arising in everyday practice? Two focus group discussions were held with staff of reproductive genetic clinics: one in Utrecht with PGD-professionals from Dutch PGD-centres and one in Prague with PGD-professionals working in centres in different European countries. Both meetings consisted of two parts, exploring participants’ views regarding treatment requests for conditions that may not fulfill traditional indications criteria for (...) PGD, and treatment and transfer requests involving welfare-of-the-child considerations. There was general support for the view that people who come for PGD will have their own good reasons to consider the condition they wish to avoid as serious. But whereas PGD-professionals in the international group tended to stress the applicants’ legal right to eventually have the treatment they want, participants in the Dutch group sketched a picture of shared decision-making, where professionals would go ahead with treatment in cases where they are able to understand the reasonableness of the request in the light of the couple’s reproductive history or family experience. In the international focus group there was little support for guidance stating that welfare-of-the child considerations should be taken into account. This was different in the Dutch focus group, where shared decision-making also had the role of reassuring professionals that applicants had adequately considered possible implications for the welfare of the child. (shrink)

In the face of rapid technological developments and growing economic pressures, governments around the world are being called upon to regulate activities in the realm of biotechnology. My aim in this paper is to argue that core conceptual insights of feminist ethics are essential to ethically adequate policy-making in this area. Specifically, I shall argue that development of ethical biotechnology require that policy-makers undergo an ontological shift from the currently widespread assumptions of the dominant political framework of liberal individualism to (...) an explicitly feminist understanding of subjects as relational beings. To ground my discussion, I shall explore the field of reproductive technologies, especially as they are used for genetic “improvements.” I shall pay particular attention to the use ofin vitrofertilization in conjunction with pre-implantation genetic diagnosis and related variations.Briefly, IVF, the core technology of so-called new reproductive technologies, is a platform technology that facilitates many other practices through affording access to oocytes and embryos. (shrink)

Bakgrunn: Preimplantasjonsgenetisk diagnostikk er en genetisk undersøkelse av befruktede egg før de settes inn i livmoren i forbindelse med assistert reproduksjon. Hensikten med PGD er å unngå at det fremtidige barnet får en alvorlig arvelig sykdom, og at par som på grunn av arvelig sykdom har vansker med å få barn, kan få avkom. PGD er kontroversielt og et sentralt tema for den pågående vurderingen og revisjonen av bioteknologiloven.Metode: Paradoksteori anvendes for å identifisere og analysere noen av kontroversene ved PGD. (...) Det skilles mellom tilsynelatende paradokser, antinomier og aporier. Materialet er offentlige dokumenter, debattinnlegg og faglitteratur.Resultater: Det finnes en rekke tilsynelatende paradokser på PGD-ens område, slik som at PGD gjøres selv om det er svært liten sannsynlighet for at det blir født et alvorlig sykt barn, og at det gjøres PGD for mindre alvorlige sykdommer når forutsetningen for PGD er alvorlig arvelig sykdom. Samtidig finnes det også antinomier: At PGD gir rett til helsehjelp uten at det eksisterer noen pasient, og at PGD gjennomføres selv ved høye kostnader og lav suksessrate. Om embryoet og fosteret har moralsk status og rett på beskyttelse, synes å utgjøre en apori.Konklusjon: Å formulere moralske utfordringer som paradokser kan være en fruktbar måte å tydeliggjøre utfordringer og motsetninger på. Dessuten kan det styre innsatsen: Vi bør bestrebe oss på å rydde opp i tilsynelatende paradokser, jobbe hardere med grunnlagsutfordringene ved antinomier og til en viss grad akseptere motsetningene ved aporiene.Nøkkelord: Preimplantasjonsgenetisk diagnostikk, paradoks, antinomi, aporiEnglish summary: PGD's ParadoxesBackground: Pre-implantation genetic diagnosis is a genetic test of embryos before implantation as part of in vitro fertilization. The purpose of using PGD is to help people avoid having children with serious genetic disease and to help those with genetically based infertility to have children. PGD has been controversial and is assessed as part of the revision of the Norwegian biotechnology act.Method: Paradox theory is used to identify and analyse controversies with PGD. It distinguishes between resolvable paradoxes, antinomies and aporias. The material comprises official documents, public debates, and professional publications.Results: Many resolvable paradoxes are identified with PGD, such as that PGD is done even in cases where there is very little chance that a seriously ill child will be born and in case of diseases that are not considered to be «serious inheritable disease,» as required by the law. At the same time, there are antinomies: PGD is subsumed within a patient's rights even if there is no patient, and PGD is done even when the success rate is low and the expenses are high. Whether the embryo and the foetus have a right to protection appears to be an aporia.Conclusion: Analysing moral problems in terms of paradoxes may be a fruitful way of displaying challenges and conflicts. Moreover, it may give focus and direction to our endeavours. That is, we should try to resolve the resolvable paradoxes and work harder with the conflicts of the antinomies, and, to a certain extent, to accept the antagonisms of the aporias. (shrink)

The lead article in this issue of the Kennedy Institute of Ethics Journal, Joseph Stramondo's "Disabled by Design: Justifying and Limiting Parental Authority to Choose Future Children with Preimplantation Genetic Diagnosis," takes up an issue that is at the center of the growing field of disability studies: what are the moral limits and possibilities when parents wish to use reproductive technologies in order to create a disabled child? This question has been of abstract interest for some time. But (...) as technologies such as pre-implantation genetic diagnosis become increasingly accessible and reliable, and as disability theorists and activists bring growing cultural attention to the ways in which lives with... (shrink)

Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability, lack engagement with decades of empirical and theoretical scholarship spanning the social sciences and humanities in the multidisciplinary field of disability studies, and avoid serious consideration of the history of disability activism in shaping social, legal, political, and medical understandings of disability over the last fifty (...) years. For example, longstanding discussions on topics such as euthanasia, physician aid-in-dying, pre-implantation genetic diagnosis, prenatal testing, selective abortion, enhancement, patient autonomy, beneficence, non-maleficence, and health care rationing all tend to be premised on shared and implicit assumptions regarding disability, especially in relation to quality of life, yet with too little recognition of the way that “disability” is itself a topic of substantial research and scholarly disagreement across multiple fields. This is not merely a concern for academic and medical education; as an applied field tied to one of the largest economic sectors of most industrialized nations, bioethics has a direct impact on healthcare education, practice, policy, and, thereby, the health outcomes of existing and future populations. It is in light of these pressing issues that the Disability Bioethics Reader is the first reader to introduce students to core bioethical issues and concepts through the lens of critical disability studies and philosophy of disability. The Disability Bioethics Reader will include over thirty-five chapters covering key areas such as: critical histories and state-of-the-field analyses of modern medicine, bioethics, disability studies, and philosophy of medicine; methods in bioethics; concerns at the edge- and end-of-life; enhancement; disability, quality of life, and well-being; prenatal testing and abortion; invisible disabilities; chronic illness; healthcare justice; genetics and genomics; intellectual disability and neurodiversity; ethics and diagnosis; and epistemic injustice in healthcare. (shrink)

This paper stems from an ethnographic, multidisciplinary study that explored the views and experiences of practitioners and scientists on social, ethical and clinical dilemmas encountered when working in the area of pre-implantation genetic diagnosis for serious genetic disorders. We focus here on staff perceptions and experiences of working with embryos and helping women/couples to make choices that will result in selecting embryos for transfer and disposal of 'affected' embryos, compared to the termination of affected pregnancies following (...) prenatal diagnosis. Analysis and discussion of our data led us to consider the possible advantages of pre-implantation genetic diagnosis and whether a gradualist account of the embryo's and fetus's moral status can account for all of these, particularly since a gradualist account concentrates on the significance of time (developmental stage) and makes no comment as to the significance of place (in vitro, in utero). (shrink)

The present article describes and critically evaluates the medical/social distinction as used in the context of embryo selection through pre-implantation genetic diagnosis . According to such a distinction, while embryo selection for medical purposes, for example preventing the birth of a child with severe genetic disease, may be ethically justified, screening and the selection of embryos for social reasons, such as the implantation of an embryo of specific gender or one that carries the gene responsible (...) for intelligence, should not be allowed. The article challenges the automatic and repeated use of such a distinction in ethical debates concerning PGD. It is argued that existing justifications for the medical/social distinction seem not to support the conclusion that such a distinction should determine whether embryos should be returned for implantation or misused by genetic parents in a conclusive way. The article further analyzes alternative proposals to the medical/social distinction in light of which embryo selection should be ethical, and concludes with the author’s own proposal for ethical reasoning in the area of embryo selection. Under such a proposal, any embryo selection that would, on balance, increase the variety of potential life plans for the future child from which he or she will be able to choose is prima facie ethically justifiable. (shrink)

When a person at risk of having a child with a genetic illness or disease wishes to have an unaffected child, this can involve difficult choices. If the pregnancy is established by sexual intercourse, the fetus can be tested early in pregnancy, and if affected a decision can be made to abort in the hope that a future pregnancy with an unaffected fetus ensures. Alternatively, preimplantation genetic diagnosis can be used after in vitro fertilisation to select and (...) implant an unaffected embryo that hopefully will proceed to term and produce a healthy baby. We are aware that many individuals at risk regard the latter as ethically more acceptable than the former, and examine whether there is an ethical difference between these options. We conclude that PGD and implantation of an unaffected embryo is a more acceptable choice ethically than prenatal diagnosis followed by abortion for the following reasons: Choice after PGD is seen as ethically neutral because a positive result balances a negative result simultaneously . While there is usually the intention to establish a healthy pregnancy after an abortion, this is not simultaneous; A woman sees abortion as a personal physical violation of her integrity, and as the pregnancy proceeds she increasingly identifies with and gives ethical status to the embryo/fetus as it develops in utero and not in the laboratory; Many people see aborting a fetus as “killing”, whereas in the case of PGD the spare embryos are “allowed to die”. We argue that this difference of opinion gives further weight to our conclusion, but note that this has been addressed and debated at length by others. (shrink)

Theatre-based health policy research is an emerging field, and this article investigates the work of one of its leaders. In 2005, prominent medical geneticist and playwright Jeff Nisker and his collaborators produced Orchids, his play concerning pre-implantation genetic diagnosis, to research theatre as a tool for engaging citizens in health policy development. Juxtaposing Orchids with a concurrent disability theatre production in Vancouver entitled Ugly, I argue that disability theatre suggests important means for building inclusiveness in this kind (...) of research and complicates Nisker’s own call for international guidelines to delimit how journalists, playwrights, filmmakers, physicians and other media authors share genetics-based narratives in public. (shrink)

The desire to have healthy and happy children is the most basic parental instinct. A parent's moral obligation to care for the child extends before the moment of birth back to the point of conception. In classical Jewish tradition, the Talmud itself offers pregnant women advice on how to improve the well-being of their offspring, such as eating parsley in order to have handsome children, drinking wine in order to bear healthy children, or eating coriander to have especially plump children. (...) We stand on the cusp of a new era today because an explosion of genetic knowledge in recent years has provided us the ability to pursue certain health and wellness advantages even before pregnancy has begun. Technology called preimplantation genetic diagnosis allows parents to screen the DNA of embryos fertilized in vitro and to implant only those embryos that match the parents' desired genetic makeup. This may include selecting only embryos guaranteed not to have a particular genetic disease, only embryos of one particular gender, or eventually even only embryos with a predisposition for certain traits such as height, eye color, or enhanced memory. (shrink)

Preimplantation genetic diagnosis generates a series of ethical and legal questions: Which goals does it pursue? Does it protect the embryo? Should this technique be regulated by the legal system? And if so, which is the incumbent criteria? This research describes the limits that some international laws regulating this technique have considered. Additionally, a series of judgments about the legal problems that have occurred with the application of this technique will be analyzed, among them, the misdiagnosis.

The author draws on his own experience of helping to make and deliver public policy to indicate the wider context in which ethical decisions have to be made: the law, contested interpretations of the law which have to be settled in the courts, and wider political and economic factors. He argues that the concept of respect for the early embryo does have substance because of the strict regulatory regime of the Human Fertilisation and Embryology Authority (HFEA). He considers the arguments (...) that the early embryo ‘[e]njoys the full rights of the human being and should be accorded respect owed to a human being’. He concludes that these arguments are not finally convincing. He also looks at the moral status of the early embryo in Christian tradition and argues that perhaps from the fourth and certainly from the seventh century in the West until 1869, offences against the early embryo were regarded as less serious than offences against the embryo when developed further. For these reasons he concludes that there should be no absolute prohibition against research on an early embryo up to fourteen days. He also looks at recent cases involving pre-implantation diagnosis (PGD) and tissue typing with a view to obtaining matching tissue from an early embryo for a sibling suffering from a life-threatening disease. Although a distinction has been made between what might be licit in the case of a genetic disorder in the sibling but illicit if the disorder is not genetic, he argues that it could be in the best interests of the early embryo, the child that is to be, if in either case if it was selected with a view to matching the tissue of a sibling. (shrink)

This chapter contains sections titled: Genes, Identity and Ethics Identity‐affecting Genetic Interventions Identity‐preserving Genetic Interventions Justice References and Further Reading.

This survey on biotechnology and bioethics was carried out on national random samples of the public and scientists in November 2000-January 2000 throughout Japan, and attendees at the Novartis Life Science Forum held on 29 September, 1999 in Tokyo. The sample size was 297, 370, and 74 respectively. While there is better awareness of GMOs in 2000 compared to 1991; the trend shows an increase in the perceived risks of GMOs followed by growing resistance in Japan. While a majority of (...) persons believed genetic engineering would make life better over the next twenty years, the proportion of respondents who thought genetic engineering would make life worse over the next twenty years doubled from 1997 to 2000. Respondents were asked whether they had heard about applications in several areas and the order of familiarity was: pest-resistant crops, human genes in bacteria, mouse to develop cancer, food and drinks, pigs with human hearts and pre-implantation diagnosis. A divide of opinion can be seen when the results on benefit, risk and moral acceptability of applications of biotechnology by the public are compared to the forum and scientist samples.A significant change in the acceptance of the public occurred in 2000 where only 22% agreed on the moral acceptability of GM food compared to 41% in 1997. In 2000 fewer people said they are willing to buy genetically modified fruits that taste better compared to 1997. The results show less public support for use of gene therapy than 1993 and twice as many scientists rejected gene therapy than they did in 1991.When asked whom is best placed to regulate modern biotechnology, the respondents were overwhelmingly in favor of international regulatory bodies, such as the United Nations and the World Health Organization, rather than national bodies. The comparison between scientists and public is interesting, however the more enthusastic sample were participants from the Novartis Life Science Forum with its mixed occupations. (shrink)

In this new post-genomic age of medicine and biomedical technology, there will be novel approaches to understanding disease, and to finding drugs and cures for diseases. Hundreds of new “disease genes” thought to be the causative agents of various genetic maladies will be identified and added to the list of hundreds of such genes already identified. Based on this knowledge, many new genetic tests will be developed and used in genetic screening programs. Genetic screening is the (...) foundation upon which reproductive technologies such as pre-natal diagnosis (PND) and preimplantation genetic diagnosis (PGD) are based. Genetic information arising from the human genome may also be used in attempts to redesign the human genetic inheritance by engineering the human germline (germline engineering). In each of these technologies—PND, PGD, and germline engineering—there are serious ethical and social concerns. Moreover, all three are eugenic in nature because they strive to control which genes are passed down to future generations. The goals of this article are threefold: 1) to introduce the science behind the three technologies; 2) to give a brief overview of eugenics in the past century and show how these genetic technologies are eugenic; and 3) to present a vision of social justice that rejects the genetic determinism upon which eugenics is based and embraces a holistic, ecological view of nature and humanity. (shrink)

By using preimplantation haplotype diagnosis, prospective parents are able to select embryos to implant through in vitro fertilization. If we knew that the naturally-occurring (but theoretical) MoralKinder (MK+) haplotype would predispose individuals to a higher level of morality than average, is it permissible or obligatory to select for the MK+ haplotype? I.e., is it moral to select for morality? This paper explores the various potential issues that could arise from genetic moral enhancement.