- Email: [email protected]
C40 Reprogenetics between science, medicine, and society: Socio-ethical reflections based on the practice of preimplantation genetic diagnosis in France
S12
10th International Congress on Preimplantation Genetic Diagnosis
from the 5th WG through the 12th WG ranging from 1 to 2 CFTCs per ml. Conclusions: These results show that a reliable NI-PND of genetic diseaeses is feasible and should open the way to implementation of an early and reliable protocol for NI-PND of CF and SMA. P. Paterlini-Brechot and H. Mouawia are joint first authors. C38 Future approach for testing of circulating fetal DNA J.M. Costa. France *E-mail: [email protected] (J.M. Costa)
Results: From a global perspective, the greatest challenges will arise from the fact that the people who offer and access reprogenetic services exercise more power over reprogenetic practice than the policy makers and experts whose mandate is to regulate it. Conclusion: In this context, it is important to develop empirical knowledge about reprogenetics and conduct an uncompromising examination of the factors that influence our decision-making and of the explicit and implicit stakes protected or promoted by means of the regulatory systems devised to govern or institutionalize reprogenetics.
Abstract not available at time of publication. C39 PGD and ethics: What limits should be assigned to the indications? J.L. Simpson. Executive Associate Dean for Academic Affairs, Professor of Human & Molecular Genetics, Professor of Obstetrics and Gynecology, Wertheim College of Medicine, Florida International University, 11200 SW 8th Street, HLS 693, Miami, Florida 33199, USA *E-mail: perrys@fiu.edu (J.L. Simpson) Assisted reproductive technologies have evoked controversy from their onset. Many biologists and ethicists advocated against these technological innovation, claiming lack of efficacy, lack of universal access, or ethical conundrums. Moratoriums or proscriptions were not uncommon. History has now proved critics wrong: ART is now universally accepted. PGD likewise was once doubted on the same grounds but also is widely accepted. Controversies remain concerning certain indications (e.g., PGD aneuploidy testing), but the broad value of PGD is not in doubt. Even initial resistance to once arguable indications PGD for non-disclosure, PGD for adult-onset disorders, PGD for HLA typing has been replaced in most jurisdictions by acceptance. This acceptance has been achieved by offering non-judgmental counseling to an educated decision-making community, coupled with rigorous surveillance by the scientific community. Free of regulatory dictates, the public has demonstrated its ability to make reasonable judgments consistent with personal religious or ethical values. Governmental dictates should thus reflect only wide-spread consensus; patient-specific decisions should be paramount. Acceptance of PGD demonstrates that the public embraces and celebrates technological and medical innovation. Any limitations should come after public debate rather than decisions of “blue-ribbon” panels. C40 Reprogenetics between science, medicine, and society: Socio-ethical reflections based on the practice of preimplantation genetic diagnosis in France C. Bouffard. Division of Genetics, Department of Pediatrics, Faculty of Medicine and Health Sciences, Universit´ e de Sherbrooke, Quebec, Canada *E-mail: [email protected] (C. Bouffard) Introduction: Ever since the practice of preimplantation genetic diagnosis was transferred to the clinical setting, the medical and social uses of reprogenetics have have diversified significantly. This development is so deeply rooted in social, cultural, and economic trends that it is no longer question of a scientific and medical phenomenon. Today, any regulatory approach to reprogenetics comes up against individual desires; the need for autonomy inherent in neo-liberalism; multiculturalism; reproductive tourism; and the market economy. In this context, it is important to develop empirical knowledge that will help us grasp the phenomenon as a whole. Methods: Ethnographic multi-site study conducted in France: Analysis of scientific, legal, and ethical literature; participant observation (990 hours); semi-structured interviews (79).
C41 Preimplantation genetic diagnosis: the recommendations of French Committee of Ethics P. Le Coz. Vice Chairman, French Consultative Ethics Committee, Paris, France *E-mail: [email protected] (P. Le Coz) In November, 2009, French Committee of Ethics published an opinion about ethical issues in connection with Prenatal diagnosis (PND) and Preimplantation Genetic Diagnosis (PGD). The present communication will approach four controversial points: 1. This ethical report underlines an increasing incapacity of Frenchs Centre to take care great majority of concerned couples. Some 300 applications to centres licensed for PGD are made by parents every year in France. However, in 2007, only 50 children were born following the procedure. Today, there are three PGD centres in the whole of France. The fact that their resources are inadequate to cope with the number of couples whose application has been accepted is a serious ethical problem. The waiting time for parents keeps lengthening (despite frequently dramatic family history). Depending on centres, the time elapsing before a request is made and the first PGD attempt varies between one and two years. As the woman’s age increases, this waiting time may signify that chances of success are lost. Couples decide to leave in others countries, or to give up PGD, or, even, abandon their plans to have a child. So, French Committee recommends creating new centres. 2. French Committee considers that the only indisputably ethical purpose of PGD is to give parents the possibility of having a child in situations where family history or a severely handicapped firstborn would have induced them to abandon the project for fear of the high risk of transmitting a serious hereditary disorder. However, the forbidding screening for Down syndrome while proceeding with PGD (for a genetic disorder carried by one of the parents) is a rule which needs to be reversed by the legislator. The purpose of PGD is a pregnancy which, like any other, would be monitored and possibly followed by amniocentesis. PGD for Down syndrome would only be considered in so far as it did not modify the conditions required for embryo biopsy and, in particular, an increase in the number of cells sampled (which would have the effect of reducing the number of live births). 3. Hereditary cancers can be taken care because the more important is the severity of a disorder, and neither its nature. 4. PGD is not an eugenic practice. It is necessary to stop using this inadequate and excessive term. Couples remains free. C42 PGD and PND: Which and why for who? A.G. Cordier1,2 , A. Benachi1,2 , R. Frydman1,2 . 1 Univ Paris-Sud, ecologie-Obst´ etrique Clamart, F-92140, 2 AP-HP, Service de Gyn´ et M´ edecine de la Reproduction, Hˆ opital Antoine B´ ecl` ere, Clamart, F-92141, France *E-mail: [email protected] (A. Cordier) In the past few years we have been the witness of huge steps forwards in reproductive technologies and in antenatal researchs. Specifically genetic diagnosis has created a range of possibilities. The technical improvement allows knowing the
10th International Congress on Preimplantation Genetic Diagnosis
from the 5th WG through the 12th WG ranging from 1 to 2 CFTCs per ml. Conclusions: These results show that a reliable NI-PND of genetic diseaeses is feasible and should open the way to implementation of an early and reliable protocol for NI-PND of CF and SMA. P. Paterlini-Brechot and H. Mouawia are joint first authors. C38 Future approach for testing of circulating fetal DNA J.M. Costa. France *E-mail: [email protected] (J.M. Costa)
Results: From a global perspective, the greatest challenges will arise from the fact that the people who offer and access reprogenetic services exercise more power over reprogenetic practice than the policy makers and experts whose mandate is to regulate it. Conclusion: In this context, it is important to develop empirical knowledge about reprogenetics and conduct an uncompromising examination of the factors that influence our decision-making and of the explicit and implicit stakes protected or promoted by means of the regulatory systems devised to govern or institutionalize reprogenetics.
Abstract not available at time of publication. C39 PGD and ethics: What limits should be assigned to the indications? J.L. Simpson. Executive Associate Dean for Academic Affairs, Professor of Human & Molecular Genetics, Professor of Obstetrics and Gynecology, Wertheim College of Medicine, Florida International University, 11200 SW 8th Street, HLS 693, Miami, Florida 33199, USA *E-mail: perrys@fiu.edu (J.L. Simpson) Assisted reproductive technologies have evoked controversy from their onset. Many biologists and ethicists advocated against these technological innovation, claiming lack of efficacy, lack of universal access, or ethical conundrums. Moratoriums or proscriptions were not uncommon. History has now proved critics wrong: ART is now universally accepted. PGD likewise was once doubted on the same grounds but also is widely accepted. Controversies remain concerning certain indications (e.g., PGD aneuploidy testing), but the broad value of PGD is not in doubt. Even initial resistance to once arguable indications PGD for non-disclosure, PGD for adult-onset disorders, PGD for HLA typing has been replaced in most jurisdictions by acceptance. This acceptance has been achieved by offering non-judgmental counseling to an educated decision-making community, coupled with rigorous surveillance by the scientific community. Free of regulatory dictates, the public has demonstrated its ability to make reasonable judgments consistent with personal religious or ethical values. Governmental dictates should thus reflect only wide-spread consensus; patient-specific decisions should be paramount. Acceptance of PGD demonstrates that the public embraces and celebrates technological and medical innovation. Any limitations should come after public debate rather than decisions of “blue-ribbon” panels. C40 Reprogenetics between science, medicine, and society: Socio-ethical reflections based on the practice of preimplantation genetic diagnosis in France C. Bouffard. Division of Genetics, Department of Pediatrics, Faculty of Medicine and Health Sciences, Universit´ e de Sherbrooke, Quebec, Canada *E-mail: [email protected] (C. Bouffard) Introduction: Ever since the practice of preimplantation genetic diagnosis was transferred to the clinical setting, the medical and social uses of reprogenetics have have diversified significantly. This development is so deeply rooted in social, cultural, and economic trends that it is no longer question of a scientific and medical phenomenon. Today, any regulatory approach to reprogenetics comes up against individual desires; the need for autonomy inherent in neo-liberalism; multiculturalism; reproductive tourism; and the market economy. In this context, it is important to develop empirical knowledge that will help us grasp the phenomenon as a whole. Methods: Ethnographic multi-site study conducted in France: Analysis of scientific, legal, and ethical literature; participant observation (990 hours); semi-structured interviews (79).
C41 Preimplantation genetic diagnosis: the recommendations of French Committee of Ethics P. Le Coz. Vice Chairman, French Consultative Ethics Committee, Paris, France *E-mail: [email protected] (P. Le Coz) In November, 2009, French Committee of Ethics published an opinion about ethical issues in connection with Prenatal diagnosis (PND) and Preimplantation Genetic Diagnosis (PGD). The present communication will approach four controversial points: 1. This ethical report underlines an increasing incapacity of Frenchs Centre to take care great majority of concerned couples. Some 300 applications to centres licensed for PGD are made by parents every year in France. However, in 2007, only 50 children were born following the procedure. Today, there are three PGD centres in the whole of France. The fact that their resources are inadequate to cope with the number of couples whose application has been accepted is a serious ethical problem. The waiting time for parents keeps lengthening (despite frequently dramatic family history). Depending on centres, the time elapsing before a request is made and the first PGD attempt varies between one and two years. As the woman’s age increases, this waiting time may signify that chances of success are lost. Couples decide to leave in others countries, or to give up PGD, or, even, abandon their plans to have a child. So, French Committee recommends creating new centres. 2. French Committee considers that the only indisputably ethical purpose of PGD is to give parents the possibility of having a child in situations where family history or a severely handicapped firstborn would have induced them to abandon the project for fear of the high risk of transmitting a serious hereditary disorder. However, the forbidding screening for Down syndrome while proceeding with PGD (for a genetic disorder carried by one of the parents) is a rule which needs to be reversed by the legislator. The purpose of PGD is a pregnancy which, like any other, would be monitored and possibly followed by amniocentesis. PGD for Down syndrome would only be considered in so far as it did not modify the conditions required for embryo biopsy and, in particular, an increase in the number of cells sampled (which would have the effect of reducing the number of live births). 3. Hereditary cancers can be taken care because the more important is the severity of a disorder, and neither its nature. 4. PGD is not an eugenic practice. It is necessary to stop using this inadequate and excessive term. Couples remains free. C42 PGD and PND: Which and why for who? A.G. Cordier1,2 , A. Benachi1,2 , R. Frydman1,2 . 1 Univ Paris-Sud, ecologie-Obst´ etrique Clamart, F-92140, 2 AP-HP, Service de Gyn´ et M´ edecine de la Reproduction, Hˆ opital Antoine B´ ecl` ere, Clamart, F-92141, France *E-mail: [email protected] (A. Cordier) In the past few years we have been the witness of huge steps forwards in reproductive technologies and in antenatal researchs. Specifically genetic diagnosis has created a range of possibilities. The technical improvement allows knowing the