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Hens K.,Maastricht University | Hens K.,Center for Society and the Life science | Dondorp W.,Maastricht University | Handyside A.H.,Gynaecology and Genetics Center | And 8 more authors.
Human Reproduction Update | Year: 2013

Background: Genetic testing of preimplantation embryos has been used for preimplantation genetic diagnosis (PGD) and preimplantation genetic screening (PGS). Microarray technology is being introduced in both these contexts, and whole genome sequencing of blastomeres is also expeted to become possible soon. The amount of extra information such tests will yield may prove to be beneficial for embryo selection, will also raise various ethical issues. We present an overview of the developments and an agenda-setting exploration of the ethical issues. Methods: The paper is a joint endeavour by the presenters at an explorative 'campus meeting' organized by the European Society of Human Reproduction and Embryology in cooperation with the department of Health, Ethics & Society of the Maastricht University (The Netherlands). Results: The increasing amount and detail of information that new screening techniques such as microarrays and whole genome sequencing offer does not automatically coincide with an increasing understanding of the prospects of an embryo. From a technical point of view, the future of comprehensive embryo testing may go together with developments in preconception carrier screening. From an ethical point of view, the increasing complexity and amount of information yielded by comprehensive testing techniques will lead to challenges to the principle of reproductive autonomy and the right of the child to an open future, and may imply a possible larger responsibility of the clinician towards the welfare of the future child. Combinations of preconception carrier testing and embryo testing may solve some of these ethical questions but could introduce others. Conclusions: As comprehensive testing techniques are entering the IVF clinic, there is a need for a thorough rethinking of traditional ethical paradigms regarding medically assisted reproduction. The Author 2013. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. All rights reserved.


Flipse S.M.,Technical University of Delft | Flipse S.M.,Center for Society and the Life science | Flipse S.M.,Kluyver Center for Genomics of Industrial Fermentation | van der Sanden M.C.A.,Technical University of Delft | And 3 more authors.
Technological Forecasting and Social Change | Year: 2014

Policy makers encourage integrating Social and Ethical Aspects (SEAs) in Research and Development (R&D) for the responsible development and deployment of future and emerging technologies, including Nanotechnology and Life Sciences. However, R&D project leaders in industry generally do not integrate SEAs explicitly in their daily practice. Furthermore, to what extent SEAs improve R&D remains unclear. We carried out a comparative research case study to assess to what extent R&D projects can be measurably improved through the integration of SEAs. We combined recent insights from Science and Technology Studies and Innovation Management to integrate SEAs in industrial R&D in the field of food technology and measured changes in project performance based on Key Performance Indicator (KPI) scores. We used Midstream Modulation with a group of project leaders and measured their projects' performance using a modified version of the Wageningen Innovation Assessment Toolkit.Results show that the integration of SEAs was not only perceived by participants to be functional and useful, but it also measurably improved KPI scores. We propose that the two methods can be integrated into a Success Factor based Live Innovation Project Scoring and Evaluation tool, which can be functionally deployed in R&D environments. © 2013 Elsevier Inc.


Flipse S.M.,Technical University of Delft | Flipse S.M.,Center for Society and the Life science | Flipse S.M.,Kluyver Center for Genomics of Industrial Fermentation | Osseweijer P.,Technical University of Delft | And 2 more authors.
Public Understanding of Science | Year: 2013

Media attention to genetically modified (GM) foods has been described as negative, especially in Europe. At the turn of the century appreciation of GM foods was at an all-time low in Europe. Food manufacturers are still careful in the use, development and communication of GM based food products, and their caution influences innovation processes. In this study we explore the link between media attention and innovation practice. Media attention to three specific high-profile GM food cases is described and linked to innovation practice. We elucidate the order of events in these cases and show that publics could only to a limited extent have formed an opinion on GM based food products based on scientifically valid data through written English media. Innovators in food biotechnology may benefit from this knowledge for future product development and marketing, and we suggest that innovation may benefit from early stakeholder involvement and communication activities. © The Author(s) 2012.


Hens K.,Maastricht University | Hens K.,Center for Society and the Life science | Dondorp W.,Maastricht University | de Wert G.,Maastricht University | de Wert G.,Center for Society and the Life science
European Journal of Medical Genetics | Year: 2013

The introduction of comprehensive testing techniques, such as microarray technology or whole genome sequencing, in embryo testing has the potential to change the practice of Preimplantation Genetic Diagnosis (PGD) and Preimplantation Genetic Screening (PGS). However, the extra information these procedures yield may potentially generate dilemmas for couples and professionals regarding the scope of the tests and the selection of the right embryo. In order to understand this complexity and reflect on its consequences, we organized two expert panels consisting of professionals working in the field of assisted reproduction and/or genetics. We found that there is great uncertainty amongst professionals how to tackle questions related to comprehensive screening, such as which conditions to test for and who should have the final say on which embryo to select, and a lack of a framework from which such questions can be answered. Moreover, the complexity of genetic information comprehensive tests may yield may make it impossible to select the best embryo altogether. © 2012 Elsevier Masson SAS.


Hens K.,Maastricht University | Hens K.,Center for Society and the Life science | Dondorp W.J.,Maastricht University | Geraedts J.P.M.,Maastricht University | And 2 more authors.
Human Reproduction | Year: 2013

Study Questio: NWhat 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? Summary Answer: 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. What Is Known Already: 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.STUDY Design: , SIZE AND DURATIONIn 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. Participants/Materials, Setting, Methods: We conducted an expert panel in October 2011 with seven PGD pioneers from Belgium, The Netherlands, Germany and the UK. Main Results and the Role of Chance: 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.LIMITATIONS, REASONS FOR CAUTIONThe 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. Wider Implications of the Findings: 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. Study Funding/Competing Interest: (S)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. Trial Registration Number: N/A. © 2013 The Author.


Hens K.,Maastricht University | Hens K.,Center for Society and the Life science
Health Care Analysis | Year: 2013

The screening of in vitro embryos resulting from in vitro fertilization (IVF) treatment for chromosomal abnormalities (aneuploidies) has as a primary aim to help patients achieve a successful pregnancy. Most IVF centers will not transfer aneuploid embryos, as they have an enhanced risk of leading to implantation failure and miscarriage. However, some aneuploidies, such as trisomy-21, can lead to viable pregnancies and to children with a variable health prognosis, and some prospective parents may request transfer of such embryos. I present two cases where the testing for and detection of trisomy-21 can lead to conflicts between IVF professionals and patients and argue that in most such cases respect for choices of patients should prevail. © 2013 Springer Science+Business Media New York.


Horstkotter D.,Maastricht University | Horstkotter D.,Center for Society and the Life science | Berghmans R.,Maastricht University | Berghmans R.,Center for Society and the Life science | And 2 more authors.
BioSocieties | Year: 2014

Scientific research regarding juvenile delinquency increasingly emphasizes the importance of early identification of at-risk children and early preventive interventions. Recent developments in the life sciences give a special boost to this development. The corresponding ethical discussion, however, seems to be characterized by a remarkable discrepancy. Life science approaches toward antisocial behavior (ASB) are frequently confronted by controversial discussions as to their ethical, social and legal implications. By contrast, ethics hardly takes notice of currently existing early ASB prevention practices that largely result from social sciences. This article investigates whether biomedical approaches are indeed ethically more problematic or whether instead this gap in the ethical debate manifests undue "bio-exceptionalism". To this end, existing ASB prevention practices and potential biomedically informed future developments are presented and discussed. A series of potential drawbacks, as highlighted in bioethics, are reviewed; and whether, when and how far these might also apply to established psychosocial practices will be explored. We conclude that negative ethical implications might result from all kinds of early screening and prevention practices irrespective of their disciplinary origin. Therefore, it is a moral imperative to include not only future biomedical developments in ethical research, but to critically investigate current psychosocial practices as well.


Rigter T.,VU University Amsterdam | van Aart C.J.A.,VU University Amsterdam | Elting M.W.,VU University Amsterdam | Waisfisz Q.,VU University Amsterdam | And 4 more authors.
Clinical Genetics | Year: 2014

Next-generation sequencing is increasingly being chosen as a diagnostic tool for cases of expected genetic, but unresolved origin. The consequential increased need for decisions on disclosure of unsolicited findings poses a challenge for the informed consent procedure. This study explored the first experiences with, and needs for, the informed consent procedure in diagnostic exome sequencing, with the stakeholders involved. Semi-structured interviews were conducted with 11 professional experts and one professional gave a written response. Furthermore, the counseling process was observed in three cases where exome sequencing was offered, followed by interviews with the patient (representative) and the genetic counselor. The respondents not only preferred an opt-out for unsolicited findings but also identified many challenges and therefore more experiences with exome sequencing was considered needed. Context-dependent decision-making was observed and an Advisory Board for unsolicited findings was considered helpful while doubts were raised about the feasibility and the possibility of undermining patients' autonomy. Finally, respondents brought up the complexity of information provision, and division of responsibilities between clinicians and the lab. These challenges and needs, raised by stakeholders involved, provide more insight in the next steps needed for an optimal informed consent procedure for exome sequencing in diagnostics. © 2013 The Authors. Clinical Genetics published by JohnWiley & Sons A/S. Published by John Wiley & Sons Ltd.


Vermeulen E.,VU University Amsterdam | Vermeulen E.,Netherlands Cancer Institute | Henneman L.,VU University Amsterdam | Van El C.G.,VU University Amsterdam | And 3 more authors.
European Journal of Public Health | Year: 2013

Background: Genetic testing and family history assessment can be used as an aid in the prevention of common chronic diseases. The aim of this study was to determine public attitudes and interests towards offering genetic testing and family history-based risk assessment for common chronic disease prevention. Methods: Cross-sectional questionnaire survey of a consumer panel representative for the Dutch population. The questionnaire was sent to 1399 panel members, aged â18 years. Results: The response was 70% (978/1399). About half of the respondents expressed an interest in genetic testing to prevent specific diseases (cancer, cardiovascular disease, diabetes or dementia), with lower-educated respondents showing more interest than higher-educated respondents. Few respondents (24%) agreed that people should be preventively tested for all kinds of diseases. According to the respondents, genetic testing should be performed in the hospital (66%) and be directed to curable (57%) or preventable diseases (69%). Half of the respondents believed that family history assessment could help prevent disease, but only 21% thought it should be offered to everyone, as this could cause people to be worried. A minority (12%) reported that their family history had been assessed, whereas 59% did not have it assessed and did not think this would be necessary. Respondents have differentiated interests in preventive genomics, which varies depending on sex, age and level of education. Conclusions: Members of the public are interested in genetic testing for preventable and curable diseases, but they are ambivalent about family history risk assessment to prevent disease. © 2013 © The Author 2013. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.


Timmermann C.,Wageningen University | Timmermann C.,Center for Society and the Life science
Science and Engineering Ethics | Year: 2014

The intellectual property regimes we have currently in place are heavily under attack. One of the points of criticism is the interaction between two elements of article 27 of the Universal Declaration of Human Rights, the widely discussed issue of being able to benefit from scientific progress and the less argued for position of having a right to take part in scientific enterprises. To shine light on the question if we should balance the two elements or prioritize one of them, an exploration will be offered on how benefiting from scientific progress and the ability to participate in the advancement of science relate to securing human capabilities. A different perspective to the question will be gained by identifying the problem as an issue of misrecognition, especially the failure to recognize many willing collaboration partners in scientific research as peers. Lastly, I will argue that cooperative justice requires that if we have an innovation incentive system that disproportionally benefits one particular group, a certain duty to counterbalance this advantage exists when we are relying on mutual cooperation for the recognition of intellectual property rights. © 2013 Springer Science+Business Media Dordrecht.

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