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)

Preimplantation genetic diagnosis (PID) is often seen as an improvement upon prenatal testing. I argue that PID may exacerbate the eugenic features of prenatal testing and make possible an expanded form of free-market eugenics. The current practice of prenatal testing is eugenic in that its aim is to reduce the numbers of people with genetic disorders. Due to social pressures and eugenic attitudes held by clinical geneticists in most countries, it results in eugenic outcomes even though no (...) state coercion is involved. I argue that technological advances may soon make PID widely accessible. Because abortion is not involved, and multiple embryos are available, PID is radically more effective as a tool of genetic selection. It will also make possible selection on the basis of non-pathological characteristics, leading, potentially, to a full-blown free-market eugenics. For these reasons, I argue that PID should be strictly regulated. (shrink)

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)

This article gives an overview about the ethical dispute on preimplantation genetic diagnosis (PGD), its legal status and its practical usage in Europe. We provide a detailed description of the situation in Germany wherein prenatal diagnosis is routinely applied, but PGD is prohibited on the basis of the internationally unique embryo protection act (EPA) that was put into force in 1991. Both PGD and stem cell research were vigorously debated in Germany during the last four years. As (...) regards the PGD debate specifically, the voices of the ones directly affected were not adequately taken into consideration. We describe the predominant lines of argumentation in this debate and some essential results of our "bioethical field study" of opinions on and usage of PGD in Germany and their implications for the German legislation and ethical theory. (shrink)

Objective: To analyse legislation and medical professionals’ position concerning the doctor’s role in assisted reproduction techniques in Italy, and to discuss the implications for physicians of preimplantation genetic diagnosis .Background: Until recently a strict interpretation of the assisted reproduction law and the guidelines subsequently issued, lead to denying infertile couples affected by genetic diseases the right to resort to PGD. In October 2006 the Constitutional Court ruled regarding the question of the constitutional legitimacy of the prohibition of (...) PGD.Discussion: The Constitutional Court declared the manifest inadmissibility of the question of the constitutional legitimacy of article 13 of law 40/2004. The debate has become very animated since the ruling. After the negative sentence of the Constitutional Court, three further sentences recognised the right of couples to obtain PGD, representing a hard blow to law 40/2004 and to the ministerial guidelines; a further confirmation of the untenability of a law that violates fundamental principles such as the right to healthcare for women and the unborn child, the right to responsible motherhood and to informed consent.Conclusion: It seems that in Italy the legislative inadequacy for medically assisted procreation is reprieved by the courageous decisions of the judges, which refer to the values of the Italian Constitution, in defence of the fundamental rights of the citizens. (shrink)

The Human Fertilisation and Embryology Authority have recently granted a licence to perform preimplanation genetic diagnosis (PGD) for the homozygous form of familial hypercholesterolaemia (FH), explicitly excluding its use for the heterozygous form. The grounds for such decisions centre on how serious a condition is thought to be as well as on the availability of effective treatment, and decisions are made on a case-by-case basis. The case for licensing homozygous FH is discussed and compared with other cases, and (...) the case for making a distinction between PGD for homozygous and heterozygous FH is also examined. Testing for homozygous FH raises difficult issues of non-disclosure of results for heterozygous FH. Fears that this decision may represent a ‘slippery slope’ to more widespread testing are argued to be overstated. (shrink)

Preimplantation genetic diagnosis (PGD) raises serious moral questions concerning the parent-child relationship. Good parents accept their children unconditionally: they do not reject/attack them because they do not have the features they want. There is nothing wrong with treating a child as someone who can help promote some other worthwhile end, providing the child is also respected as an end in him or herself. However, if the child's presence is not valued in itself, regardless of any further benefits it (...) brings, the child is not being treated as an end in the full sense of the term. In this paper, I argue that these principles apply to human embryos, as well as to born human offspring: the human moral subject is a bodily being, whose interests and rights begin with the onset of his or her bodily life. The rights of the living, bodily human individual include a right not to be attacked/abandoned because of his or her genetic profile. PGD is harmful to the parent-child relationship, and we give mixed messages to parents by expecting them to show unconditional commitment to offspring after birth, while inviting them to take a very different approach at the prenatal stage. (shrink)

Giam, Patrick This article seeks to explore some further ethical and legal issues surrounding the practice of preimplantation genetic diagnosis which was the subject of a 2009 article for BRN. After briefly reviewing the state of regulation of PGD in Australia, focusing mainly on the national Guidelines developed by the National Health and Medical Research Council, I proceed to consider the ethical problems with PGD from the Catholic and natural law position that the embryo is a human person (...) with inherent dignity and the right to life, which forms the basis for revisiting the conclusions reached in my previous article on the proper response to the regulation of such technology. (shrink)

The prelims comprise: Introduction Better Alternative Than Abortion? The Morality of Prenatal Diagnosis Prenatal Genetic Testing as Prevention The Line‐drawing Question Conclusion Note.

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)

In its recent statement 'Sex Selection and Preimplantation Genetic Diagnosis', the Ethics Committee of the American Society of Reproductive Medicine concluded that preimplantation genetic diagnosis for sex selection for non-medical reasons should be discouraged because it poses a risk of unwarranted gender bias, social harm, and results in the diversion of medical resources from genuine medical need. We critically examine the arguments presented against sex selection using preimplantation genetic diagnosis. We argue that sex selection (...) should be available, at least within privately funded health care. (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)

New uses of preimplantation genetic diagnosis to screen embryos prior to transfer raise ethical, legal, and policy issues that deserve close attention. Extensions for medical purposes, such as to identify susceptibility genes, late onset disease, and human leukocyte antigen matching, are usually ethically acceptable. Whether embryo screening for gender, perfect pitch, or other non-medical characteristics are also acceptable depends upon the parental needs served and the harm posed to embryos, children, and society. Speculations about potential future uses of (...) PGD should not prevent otherwise acceptable current uses of PGD. (shrink)

These words were written by ethicist Jonathan Glover in his paper “Future People, Disability and Screening” in 1992. Whereas screening and choosing for a disability remained a theoretical possibility 16 years ago, it has now become reality. In 2006, Susannah Baruch and colleagues at John Hopkins University published a survey of 190 American preimplantation genetic diagnosis clinics, and found that 3% reported having the intentional use of PGD “to select an embryo for the presence of a disability.” Even (...) before, in 2002, a controversy was generated by the case of Candace A. McCullough and Sharon M. Duchesneau, a lesbian and deaf couple from Maryland who set out to have a deaf child by intentionally soliciting a deaf sperm donor. (shrink)

The identification and avoidance of disease susceptibility in embryos is the most common goal of preimplantation genetic diagnosis (PGD). Most jurisdictions that accept but regulate the availability of PGD restrict it to what are characterized as ‘serious’ conditions. Line-drawing around seriousness is not determined solely by the identification of a genetic mutation. Other factors seen to be relevant include: impact on health or severity of symptoms; degree of penetrance (probability of genotype being expressed as a genetic (...) disorder); potential for therapy; rate of progression; heritability; and age of onset. In the original applications of PGD, most, if not all of these factors were seen as necessary but none was seen as sufficient for determining whether a genetic condition was labelled ‘serious’. This, however, is changing as impact on health or severity of symptoms is coming to eclipse the other considerations. This paper investigates how age of onset (primarily in the context of the United Kingdom (UK)) has become considerably less significant as a criterion for determining ethically acceptable applications of PGD. Having moved off the threshold of permitting PGD testing for only fatal (or seriously debilitating), early-onset diseases, I will investigate reasons for why age of onset will not do any work to discriminate between which adult-onset diseases should be considered serious or not. First I will explain the rationale underpinning age of onset as a factor to be weighed in making determinations of seriousness. Next I will challenge the view that later-onset conditions are less serious for being later than earlier-onset conditions. The final section of the paper will discuss some of the broader disability concerns at stake in limiting access to PGD based upon determinations of the ‘seriousness’ of genetic conditions. Instead of advocating a return to limiting PGD to only early-onset conditions, I conclude that the whole enterprise of trying to draw lines of what is to count as a ‘serious’ condition is itself problematic and in certain ways morally misleading. (shrink)

We report here on recent developments in Israel on the issue of sex selection for nonmedical reasons by preimplantation genetic diagnosis. Sex selection for medical reasons is generally viewed as uncontroversial and legal in European and American law. Its use for nonmedical reasons is generally illegal in European countries. In the United States, it is not illegal, although in the opinion of the Ethics Committee of the American Society for Reproductive Medicine, it is problematic. This position is undergoing (...) reconsideration, albeit in a limited way. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that (...) the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Most of us want to have children. We want them to be healthy and have a good start in life. One way to achieve this goal is to use preimplantation genetic diagnosis . PGD enables people engaged in the process of in vitro fertilisation to acquire information about the genetic constitution of an early embryo. On the basis of this information, a decision can be made to transfer embryos without genetic defects to the uterus and terminate (...) those with genetic defects.1However, is it morally acceptable to use PGD to reduce the probability of children with severe genetic diseases being born? Is the current routine use of PGD in public healthcare services to select against severe genetic diseases like anencephaly, spina bifida, cystic fibrosis and Down’s syndrome morally acceptable?These are complex questions involving a range of difficult ethical issues—for instance, critical discussions about the morality of embryo research and embryo termination.2 They also involve awkward conceptual issues concerning such matters as the meaning of words such as “disability”3 and “severe” in “severe genetic diseases”,4 which will not be discussed here.In this paper I examine an argument which aims to show that efforts to prevent the birth of severely disabled children using PGD are morally unacceptable. Essentially, this argument appeals to our concern for disabled people and the belief that PGD, through a slippery slope process, will have bad consequences for them. I conclude that the argument is problematic for a number of reasons. But before I examine the argument itself, it will be helpful to separate two types of slippery slope argument since these involve different kinds of reasoning.TWO TYPES OF ARGUMENTMany of the arguments against PGD point to the bad consequences it can be expected to have for disabled people. Central to all these …. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that (...) the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

CRISPR is widely considered to be a disruptive technology. However, when it comes to the most controversial topic, germline genome editing (GGE), there is no consensus on whether this technology has any substantial advantages over existing procedures such as embryo selection after in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD). Answering this question, however, is crucial for evaluating whether the pursuit of further research and development on GGE is justified. This paper explores the question from both a (...) clinical and a moral viewpoint, namely whether GGE has any advantages over existing technologies of selective reproduction and whether GGE could complement or even replace them. In a first step, I review an argument of extended applicability. The paper confirms that there are some scenarios in which only germline intervention allows couples to have (biologically related) healthy offspring, because selection will not avoid disease. In a second step, I examine possible moral arguments in favour of genetic modification, namely that GGE could save some embryos and that GGE would provide certain benefits for a future person that PGD does not. Both arguments for GGE have limitations. With regard to the extended applicability of GGE, however, a weak case in favour of GGE should still be made. (shrink)

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)

Successful preimplantation genetic diagnosis (PGD) to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization (IVF) to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the (...) chance that the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing” (rather than to avoid a sex-linked disorder), PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Developments in biotechnology present difficult social and ethical challenges that need to be resolved by regulators among others. One crucial problem for regulators of new technologies is to ensure that regulation is both clear and sufficiently flexible to respond to new developments. This is particularly difficult to achieve in contentious fields such as medical biotechnology. In the European Union there is a divergence in the solutions to this problem which has lead to different regulatory frameworks for medical biotechnology. This paper (...) compares and contrasts the British and Dutch regulatory frameworks for the selection of embryos by preimplantation genetic diagnosis as an example of the regulation of medical biotechnology. Some of the outcomes of the regulatory choices and possible reasons behind the divergent frameworks are discussed, such as the ethical outlooks and political systems in these countries. (shrink)

In my previous paper I argued that if in vitro fertilization (IVF) is legal and practiced there is no moral ground to object to legalization of preimplantation genetic diagnosis (PGD). My opponent raises an objection that my paper “fails to address the ethical argumentation of one key opponent of IVF – the Catholic Church”. In this reply I show that her/his thesis that embryos created during IVF are in ‘ethical limbo’ and “fall outside the moral universe of Christian (...) ethics” does not undermine my argumentation and masks the serious problem Catholics have with the moral status of early embryos. (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)

Many European countries uphold a ‘high risk of a serious condition’ requirement for limiting the scope of preimplantation genetic diagnosis (PGD). This ‘front door’ rule should be loosened to account for forms of PGD with a divergent proportionality. This applies to both ‘added PGD’ (aPGD), as an add‐on to in vitro fertilization (IVF), and ‘combination PGD’ (cPGD), for a secondary disorder in addition to the one for which the applicants have an accepted PGD indication. Thus loosening up at (...) the front has implications at the back of PGD treatment, where a further PGD rule says that ‘affected embryos’ (in the sense of embryos with the targeted mutation or abnormality) should not be transferred to the womb. This ‘back door’ rule should be loosened to allow for transferring ‘last chance’ affected embryos in aPGD and cPGD cases, provided this does not entail a high risk that the child will have a seriously diminished quality of life. (shrink)

An increase in autonomy and freedom is often considered one ofthe main arguments in favour of a broad use of genetic testing.Starting from Gerald Dworkin's reflections on autonomy and choicethis article examines some of the implications which accompanythe increase in choices offered by prenatal genetic diagnosis.Although personal autonomy and individual choice are importantaspects in the legitimation of prenatal genetic diagnosis, itseems clear that an increase in choice offered by prenatalgenetic diagnosis also leads to various (...) implications that maynegatively influence the freedom of the persons involved. (shrink)

To what extent should parents be able to choose the kind of child they have? The unfortunate phrase 'designer baby' has become familiar in debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase may indicate a societal concern of some kind about control and choice in the course of reproduction. Typically, people can choose whether to have a child. They may also have an interest in choosing, to some extent, the conditions under which (...) they do so, such as whether they have a child with a serious disability or disease. The purpose of this book is to explore the difficult and controversial question of the appropriate ethical and legal extent of reproductive autonomy in this context. The book examines ethical, legal and public policy issues in prenatal screening, prenatal diagnosis (PND), selective abortion and preimplantation genetic diagnosis (PGD). It explores the ethics of these selection practices and the ability of current ethical guidelines and legal mechanisms, including the law on selective abortion and wrongful birth, to deal with advances in genetic and other knowledge in these areas. Unlike in the United States, in England the relevant law is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in this context. The implications of the analysis are considered for the development of relevant law, public policy and ethical guidelines and will be of interest to academics in medical law and ethics, health professionals, lawyers, those working on public policy and students with an interest in these issues. (shrink)

Enhancement of autonomous choice may be considered as an important reason for facilitating the use of genetic tests such as preimplantation genetic diagnosis. The principle of respect for autonomy is a crucial component not only of Western liberal traditions but also of Western bioethics. This is especially so in bioethical discussions and analyses of clinical encounters within medicine. On the basis of an analysis of qualitative research interviews performed with British, Italian and Swedish geneticists and gynaecologists on (...) ethical aspects of preimplantation genetic diagnosis, the plausibility of the notion of autonomy within reproductive medicine is discussed. The analysis of interviews indicates not only that there is a gap between theoretical discussions and concrete practice, but also that an increase in choice — paradoxically — can hamper couples' choice. (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)

This article explores the possibility that there is a parental duty to use preimplantation genetic diagnosis (PGD) for the medical benefit of future children. Using one genetic disorder as a paradigmatic example, we find that such a duty can be supported in some situations on both ethical and legal grounds. Our analysis shows that an ethical case in favor of this position can be made when potential parents are aware that a possible future child is at substantial (...) risk of inheriting a serious genetic condition. We further argue that a legal case for a duty to use PGD for medical benefit can be made in situations in which potential parents have chosen to conceive through in vitro fertilization and know that any children conceived are at substantial risk of having a serious genetic condition. (shrink)

Preimplantation genetic diagnosis is a new method of prenatal diagnosis that is developing from a union of in vitro fertilization technology and molecular biology. Briefly stated, PGD involves the creation of several embryos in vitro from the eggs and sperm of an interested couple. The embryos are permitted to develop to a 6-to-10-cell stage, at which point one of the embryonic cells is removed from each embryo and the cellular DNA is analyzed for chromosomal abnormalities or (...) class='Hi'>genetic mutations. An embryo or several embryos found to be free of genetic abnormalities are subsequently transferred to the woman's uterus for gestation. Embryos found to carry a genetic abnormality are discarded or frozen. Extra normal embryos may be frozen for future transfer or donation to another couple. (shrink)

Preimplantation genetic diagnosis is a new method of prenatal diagnosis that is developing from a union of in vitro fertilization technology and molecular biology. Briefly stated, PGD involves the creation of several embryos in vitro from the eggs and sperm of an interested couple. The embryos are permitted to develop to a 6-to-10-cell stage, at which point one of the embryonic cells is removed from each embryo and the cellular DNA is analyzed for chromosomal abnormalities or (...) class='Hi'>genetic mutations. An embryo or several embryos found to be free of genetic abnormalities are subsequently transferred to the woman's uterus for gestation. Embryos found to carry a genetic abnormality are discarded or frozen. Extra normal embryos may be frozen for future transfer or donation to another couple. (shrink)

Congenitally infertile woman such as those with Turner syndrome or Mayer Rokitansky-Kuster-Hauser syndrome have available the technologies of oocyte harvestation, cryropreservation, in-vitro fertilization, and gestational surrogacy in order to have genetically related offspring. Since congenital infertility results in a variety of experiences that impacts on nearly every aspect of a person’s life, in the future it is possible that these women might desire a congenitally infertile child through the use of preimplantation genetic diagnosis so as to share this (...) common bond. While infertility results in a relatively normal quality of life, it is morally wrong to necessitate the future use of infertility services with its variable success rate on a child. Also, whereas the woman has fundamental reproductive autonomy, she lacks the substantive autonomy regarding the specific characteristics of her child. Finally, the infertile community does exhibit a strong presence, but it lacks characteristics that define it as a culture. (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)

In this essay, I recount and examine my response to a genetic diagnosis of my disabled daughter. My daughter was forty‐nine before the diagnosis came. All her disabilities were traceable to a de novo single gene variant on the PURA gene that was discovered only in 2014. I speak of the jolt and the recalibration that this discovery engendered, concluding that, while it seemed that everything had changed, nothing had changed. But my family did discover a community (...) in which Sesha joins other PURA‐perfect sons and daughters and where we as a family acquire a “horizontal identity” marked by a genetic variant. (shrink)

The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. This is a monogenetic debilitating disease without cure, leading to death in early middle age, and thus is a likely candidate for preimplantation genetic diagnosis. People possibly affected with the Huntington gene (...) do not always want to know their genetic status themselves, which is very burdensome knowledge. For prospective parents, this creates a difficulty in having unaffected children through embryo selection without knowing their own genetic status. A solution is provided by the exclusion test: it allows embryo selection while honouring the parents’ right not to know. The Dutch government however disallowed the exclusion test and chose to allow PGD on Huntington only for parents who test themselves first. To avoid “unnecessary” in-vitro fertilisation procedures for unaffected parents, prospective parents are “forced to know” before they can conceive through embryo selection. This article analyses the scope of the right not to know in the context of embryo selection against Huntington’s disease. It concludes that the right not to know implies that PGD against Huntington should be allowed by means of the exclusion test. (shrink)

The use of preimplantation genetic diagnosis, the powerful technique employed during fertility treatment to select embryos based on their genes, is currently unregulated in the United States—unlike in nearly all other countries where PGD is available. Of course, the analytical quality of the genetic tests, the laboratories where they are performed, and the technicians who carry them out are subject to the Clinical Laboratory Improvement Amendment requirements. And as the Food and Drug Administration prepares to begin regulating (...) laboratory‐developed tests, including many genetic tests, the clinical validity of the tests may also need to be demonstrated. But neither CLIA nor the U.S. Food and Drug Administration is responsible for governing medical practice, and state law and the relevant medical associations have largely fallen silent on the questions of when and why PGD ought to be performed. The result of this regulatory lacuna is that while PGD was originally intended for screening embryos for severe heritable disorders, it is now also employed for a variety of more controversial purposes. (shrink)

Predictive genetic testing may confront those affected with difficult life situations that they have not experienced before. These life situations may be interpreted as ‘absurd’. In this paper we present a case study of a predictive test situation, showing the perspective of a woman going through the process of deciding for or against taking the test, and struggling with feelings of alienation. To interpret her experiences, we refer to the concept of absurdity, developed by the French Philosopher Albert Camus. (...) Camus' writings on absurdity appear to resonate with patients' stories when they talk about their body and experiences of illness. In this paper we draw on Camus' philosophical essay ‘The Myth of Sisyphus’, and compare the absurd experiences of Sisyphus with the interviewee's story. This comparison opens up a field of ethical reflection. We demonstrate that Camus' concept of absurdity offers a new and promising approach to understanding the fragility of patients' situations, especially in the field of predictive testing. We show that people affected might find new meaning through narratives that help them to reconstruct the absurd without totally overcoming it. In conclusion, we will draw out some normative consequences of our narrative approach. (shrink)