Met het oog op de toekomst : voortplantingstechnologie, erfelijkheidsonderzoek en ethiek

Dit proefschrift betreft de ethiek van voortplantingstechnologie en erfelijkheidsonderzoek. Een boek over dit thema kan uiteraard op verschillende manieren worden opgezet. Om praktische redenen koos ik voor een opzet waarbij ik zoveel mogelijk gebruik kon maken van lopende onderzoeksprojecten binnen het Instituut voor Gezondheidsethiek. Het boek kreeg zodoende de structuur van 'capita selecta': een samenvoeging van afzonderlijk geconcipieerde, zelfstandig leesbare, hoofdstukken. Het verbindende thema - de 'rode draad' - is de verantwoordelijkheid van de arts, meer in het bijzonder de voortplantingsarts en de hulpverlener die betrokken is bij erfelijkheidsvoorlichting en - onderzoek: wat is in de verschillende contexten verantwoord handelen? Hoe krijgt 'goed hulpverlenerschap' hier gestalte?' Dat deze vraag urgent is in de context van de moderne voortplantingstechnologic, waar men voortdurend wordt geconfronteerd met nieuwe technieken en toepassingen, behoeft geen betoog. Door welke morele overwegingen zou de arts zich moeten laten leiden als de technologische imperatief geen betrouwbare gids is? (In hoeverre) mag of moet de arts zich bijvoorbeeld iets gelegen laten liggen aan de belangen van het eventuele toekomstige kind? De inhoud van 'goed hulpverlenerschap' staat ook voortdurend tcr discussie op het dynamische terrein van erfelijkheidsvoorlichting en -onderzoek: aan de orde is niet alleen de attitude van de betreffende hulpverleners, maar ook hun verantwoordelijkheid in concrete conflictsituaties

Ethics of modifying the mitochondrial genome

Recent preclinical studies have shown the feasibility of specific variants of nuclear transfer to prevent mitochondrial DNA disorders. Nuclear transfer could be a valuable reproductive option for carriers of mitochondrial mutations. A clinical application of nuclear transfer, however, would entail germ-line modification, more specifically a germ-line modification of the mitochondrial genome. One of the most prominent objections against germ-line modification is the fear that it would become possible to alter 'essential characteristics' of a future person, thereby possibly violating the child's right to an open future. As only the nuclear DNA would contain the ingredients for individual characteristics, modification of the mtDNA is often considered less controversial than modification of the nuclear DNA. This paper discusses the tenability of this dichotomy. After having clarified the concept of germ-line modification, it argues that modification of the mtDNA is not substantively different from modification of the nuclear DNA in terms of its effects on the identity of the future person. Subsequently the paper assesses how this conclusion affects the moral evaluation of nuclear transfer to prevent mtDNA disorders. It concludes that the moral acceptability of germ-line modification does not depend on whether it alters the identity of the future child-all germ-line modifications do-but on whether it safeguards the child's right to an open future. If nuclear transfer to prevent mtDNA disorders becomes safe and effective, then dismissing it because it involves germ-line modification is unjustified

ESHRE task force on ethics and law 15: Cross-border reproductive care

This paper analyses the ethical aspects of cross-border reproductive care. Ethical questions are raised by some of the main reasons of cross-border travelling, i.e. law evasion and unequal access to treatment. The phenomenon also generates possible conflicts linked to the responsibility of the professionals. Three points are discussed: the moral obligation of the physician to refer the patient, his/her duty to provide information and counselling and the acceptability of fee-splitting. The recommendations focus on measures to reduce or limit the number of patients that have to travel abroad and on steps to guarantee the safety and quality of the treatment wherever it is provided

Follow-up in the field of reproductive medicine : an ethical exploration

Research question: What ethical implications, issues and concerns play a role in conducting follow-up studies of children born after assisted reproductive technologies (ART)? Design: Literature study and relevant experiences of academic medical centres in Brussels, Belgium, and Maastricht, the Netherlands were used to identify and analyse the most pertinent ethical implications, issues and concerns. Results: According to recommendations from the European Society of Human Reproduction and Embryology, follow-up (ideally long term) of children conceived through medically assisted reproduction (MAR) should be an integral part of introducing new ART. With potentially risky new ART on the horizon, these recommendations need to be taken more seriously. Apart from practical barriers, such as funding, challenges for follow-up include securing active involvement of families of children conceived through MAR, starting with parents of young children, and ideally involving consenting adolescents and adults during a large part of their lives, possibly even into the next generation. Conclusions: From an ethical viewpoint, the most pertinent issues include the proportionality of the inevitable burdens and risks for families of children conceived through MAR, and the implications of the principle of respect for autonomy. The proportionality requirement is most critical when it concerns incompetent children, who should not be included in research with more than minimal burdens and risks if there is no reasonable expectation of benefit for themselves. With respect for autonomy, we argue that, when seeking voluntary consent for participating in followup studies that meet the condition of proportionality, professionals may encourage members of families of children conceived through MAR to partake in follow-up research

Of mice and human embryos:is there an ethically preferred order of preclinical research on new assisted reproductive technologies?

It is widely acknowledged that the responsible introduction of new assisted reproductive technologies (ARTs) requires preclinical safety research, including the use of animal models and human embryos. However, the moral sensitivity of human embryo research has led to regulations and guidance stating that human embryos may only be used for research that cannot also be conducted with animals. We call this the 'use animals first' (UAF) rule. In the field of ART research, this translates into the notion of an ideal chain of consecutive preclinical research steps, where research using human embryos may only be considered as a further step after promising results have been obtained in animals first. This may lead to research ethics committees requiring animal studies that are in fact a waste of time and money, while exposing animals to an infringement of their wellbeing for no good purpose. In this paper, we explore the possible moral arguments behind the UAF-rule and test their validity. We conclude that there are no convincing grounds for upholding this rule and recommend replacing it.</p

Using non-human primates to benefit humans: research and organ transplantation

Emerging biotechnology may soon allow the creation of genetically human organs inside animals, with non-human primates (henceforth simply "primates”) and pigs being the best candidate species. This prospect raises the question of whether creating organs in primates in order to then transplant them into humans would be more (or less) acceptable than using them for research. In this paper, we examine the validity of the purported moral distinction between primates and other animals, and analyze the ethical acceptability of using primates to create organs for human use

Comprehensive embryo testing. Experts opinions regarding future directions: an expert panel study on comprehensive embryo testing

What do scientists in the field of preimplantation genetic diagnosis (PGD) and preimplantation genetic screening (PGS) consider to be the future direction of comprehensive embryo testing? Although there are many biological and technical limitations, as well as uncertainties regarding the meaning of genetic variation, comprehensive embryo testing will impact the IVF/PGD practice and a timely ethical reflection is needed. Comprehensive testing using microarrays is currently being introduced in the context of PGD and PGS, and it is to be expected that whole-genome sequencing will also follow. Current ethical and empirical sociological research on embryo testing focuses on PGD as it is practiced now. However, empirical research and systematic reflection regarding the impact of comprehensive techniques for embryo testing is missing. In order to understand the potential of this technology and to be able to adequately foresee its implications, we held an expert panel with seven pioneers in PGD. We conducted an expert panel in October 2011 with seven PGD pioneers from Belgium, The Netherlands, Germany and the UK. Participants expected the use of comprehensive techniques in the context of PGD. However, the introduction of these techniques in embryo testing requires timely ethical reflection as it involves a shift from choosing an embryo without a particular genetic disease (i.e. PGD) or most likely to result in a successful pregnancy (i.e. PGS) to choosing the best embryo based on a much wider set of criteria. Such ethical reflection should take account of current technical and biological limitations and also of current uncertainties with regard to the meaning of genetic variance. However, ethicists should also not be afraid to look into the future. There was a general agreement that embryo testing will be increasingly preceded by comprehensive preconception screening, thus enabling smart combinations of genetic testing. The group was composed of seven participants from four Western Europe countries. As willingness to participate in this study may be connected with expectations regarding the pace and direction of future developments, selection bias cannot be excluded. The introduction of comprehensive screening techniques in embryo testing calls for further ethical reflection that is grounded in empirical work. Specifically, there is a need for studies querying the opinions of infertile couples undergoing IVF/PGS regarding the desirability of embryo screening beyond aneuploidy. This research was supported by the CSG, Centre for Society and Life Sciences (project number: 70.1.074). The authors declare no conflict of interest. N/A