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Background: The development of new genetic testing methods and the approval of the first treatments raises questions regarding when and how to perform screening for inherited neuromuscular conditions. Screening directives and access to the different techniques is not uniform across Europe. The patient advisory board of the European reference network for rare neuromuscular diseases (NMD) conducted a qualitative study to understand the state of play of screening for inherited NMD in Europe and patients' needs.Results: We collected answers from 30 patient organisations (POs) from 18 European countries. Fifteen acknowledge the existence of pre-implantation genetic diagnosis in their country. Regarding prenatal screening, we had 25 positive answers and 5 negative ones. Twenty-four POs mentioned that newborn screening was available in their country. We had some contradictory answers from POs from the same country and in some cases; diseases said to be part of the screening programmes were not hereditary disorders. Twenty-eight organisations were in favour of screening tests. The reasons for the two negative answers were lack of reimbursement and treatment, religious beliefs and eventual insurance constrains. Most POs (21) were in favour of systematic screening with the option to opt-out. Regarding the timing for screening, "at birth", was the most consensual response. The main priority to perform screening for NMDs was early access to treatment, followed by shorter time to diagnostic, preventive care and genetic counselling.Conclusions: This is the first study to assess knowledge and needs of POs concerning screening for NMDs. The knowledge of POs regarding screening techniques is quite uneven. This implies that, even in communities highly motivated and knowledgeable of the conditions they advocate for, there is a need for better information. Differences in the responses to the questions "how and when to screen" shows that the screening path depends on the disease and the presence of a disease modifying treatment. The unmet need for screening inherited NMDs should follow an adaptive pathway related to the fast moving medical landscape of NMDs. International coordination leading to a common policy would certainly be a precious asset tending to harmonize the situation amongst European countries. [ABSTRACT FROM AUTHOR]

Introduction: The impact of bleeding for women with bleeding disorders (WBD) is of increasing focus and importance. Despite this, optimal management strategies are unclear and knowledge gaps persist. Aim: To examine practices and define research priorities on diagnosis and management of WBD in Europe. Methods: An electronic survey on clinical management of WBD was sent to 136 European haemophilia treatment centres (HTCs), including open questions on knowledge gaps and research priorities. Results: Fifty‐nine HTCs from 12 Western (WE) and 13 Central/Eastern European (CEE) countries completed the survey. Less than half runs a joint clinic (24 HTCs, 42%). Most centres without a joint clinic have a named obstetrician (81%) and/or gynaecologist (75%) available for collaboration. Overall 18/54 (33%) European HTCs do not offer preimplantation genetic diagnosis. Third trimester amniocentesis to guide obstetric management is available 28/54 HTCs (52%), less frequent in CEE compared to WE countries (5/17 vs 23/37, P =.03). 53% of HTCs (28/53) reported that only 0%‐25% of WBD seek medical advice for heavy menstrual bleeding (HMB). An algorithm managing acute HMB in WBD is lacking in 22/53 (42%) HTCs. The main reported knowledge and research gaps are lack of awareness & education on WBD among patients and caregivers, optimal diagnostic strategies and effective multidisciplinary management of pregnancy & HMB. Conclusion: Joint clinics, prenatal diagnostics and algorithms for managing acute HMB are lacking in many European HTCs. HMB may be an underestimated issue. This survey highlights the need to prioritize improvement of knowledge and patient care for WBD across Europe. [ABSTRACT FROM AUTHOR]

The recent introduction of polygenic risk scores within preimplantation genetic testing (PGT-P) has been met with many concerns. To get more insights into the perspectives of relevant stakeholders on the socio-ethical aspects of PGT-P, an interview study with 31 healthcare professionals involved in reproductive medicine and genetics in Europe and North-America was performed. Healthcare professionals in our study were concerned that PGT-P was going too far in terms of selection, with regards to both medical conditions and non-medical traits. Healthcare professionals were worried about the ethical 'slippery slope' of PGT-P, the increasing medicalization of reproductive health, the commercial context of PGT-P, and potential stigmatization and discrimination. There were also concerns that the availability and the 'technological imperative' of PGT-P could lead to pressure and a sense of responsibility for parents to use PGT-P. Additionally, it could cause new anxieties about the child's health before the child has even been born. Since PGT-P provides polygenic risk scores before birth, the autonomy of the child has to be considered. These socio-ethical concerns heighten existing debates regarding reproductive genetic technologies and show that the specifics of PGT-P make this screening option especially ethically controversial. • Introduction of polygenic risk scores in preimplantation genetic testing. • Healthcare professionals concerned about socio-ethical implications. • Associated with 'slippery slope', going too far, discrimination and stigmatization. • Increased sense of medicalization and commercialization of reproduction and health. • Worries about effects on prospective parents and on the future child's autonomy. [ABSTRACT FROM AUTHOR]

Study Question: The 16th European IVF-monitoring (EIM) report presents the data of the treatments involving assisted reproductive technology (ART) and intrauterine insemination (IUI) initiated in Europe during 2012: are there any changes compared with previous years?Summary Answer: Despite some fluctuations in the number of countries reporting data, the overall number of ART cycles has continued to increase year by year, the pregnancy rates (PRs) in 2012 remained stable compared with those reported in 2011, and the number of transfers with multiple embryos (3+) and the multiple delivery rates were lower than ever before.What Is Known Already: Since 1997, ART data in Europe have been collected and re-ported in 15 manuscripts, published in Human Reproduction.Study Design, Size, Duration: Retrospective data collection of European ART data by the EIM Consortium for the European Society of Human Reproduction and Embryology (ESHRE). Data for cycles between 1 January and 31 December 2012 were collected from National Registers, when existing, or on a voluntary basis by personal information.Participants/materials, Setting, Methods: From 34 countries (+1 compared with 2011), 1111 clinics reported 640 144 treatment cycles including 139 978 of IVF, 312 600 of ICSI, 139 558 of frozen embryo replacement (FER), 33 605 of egg donation (ED), 421 of in vitro maturation, 8433 of preimplantation genetic diagnosis/preimplantation genetic screening and 5549 of frozen oocyte replacements (FOR). European data on intrauterine insemination using husband/partner's semen (IUI-H) and donor semen (IUI-D) were reported from 1126 IUI labs in 24 countries. A total of 175 028 IUI-H and 43 497 IUI-D cycles were included.Main Results and the Role Of Chance: In 18 countries where all clinics reported to their ART register, a total of 369 081 ART cycles were performed in a population of around 295 million inhabitants, corresponding to 1252 cycles per million inhabitants (range 325-2732 cycles per million inhabitants). For all IVF cycles, the clinical PRs per aspiration and per transfer were stable with 29.4 (29.1% in 2011) and 33.8% (33.2% in 2011), respectively. For ICSI, the corresponding rates also were stable with 27.8 (27.9% in 2011) and 32.3% (31.8% in 2011). In FER cycles, the PR per thawing/warming increased to 23.1% (21.3% in 2011). In ED cycles, the PR per fresh transfer increased to 48.4% (45.8% in 2011) and to 35.9% (33.6% in 2011) per thawed transfer, while it was 45.1% for transfers after FOR. The delivery rate after IUI remained stable, at 8.5% (8.3% in 2011) after IUI-H and 12.0% (12.2% in 2011) after IUI-D. In IVF and ICSI cycles, 1, 2, 3 and 4+ embryos were transferred in 30.2, 55.4, 13.3 and 1.1% of the cycles, respectively. The proportions of singleton, twin and triplet deliveries after IVF and ICSI (added together) were 82.1, 17.3 and 0.6%, respectively, resulting in a total multiple delivery rate of 17.9% compared with 19.2% in 2011 and 20.6% in 2010. In FER cycles, the multiple delivery rate was 12.5% (12.2% twins and 0.3% triplets). Twin and triplet delivery rates associated with IUI cycles were 9.0%/0.4% and 7.2%/0.5%, following treatment with husband and donor semen, respectively.Limitations, Reasons For Caution: The method of reporting varies among countries, and registers from a number of countries have been unable to provide some of the relevant data such as initiated cycles and deliveries. As long as data are incomplete and generated through different methods of collection, results should be interpreted with caution.Wider Implications Of the Findings: The 16th ESHRE report on ART shows a continuing expansion of the number of treatment cycles in Europe, with more than 640 000 cycles reported in 2012 with an increasing contribution to birthrate in many countries. However, the need to improve and standardize the national registries, and to establish validation methodologies remains manifest.Study Funding/competing Interests: The study has no external funding; all costs are covered by ESHRE. There are no competing interests. [ABSTRACT FROM AUTHOR]

Study Question: The 15th European IVF-monitoring (EIM) report presents the results of treatments involving assisted reproductive technology (ART) initiated in Europe during 2011: are there any changes in the trends compared with previous years?Summary Answer: Despite some fluctuations in the number of countries reporting data, while the overall number of ART cycles has continued to increase year by year, the pregnancy rates in 2011 decreased slightly to those reported in 2010, and the number of transfers with multiple embryos (3+) and the multiple delivery rates declined.What Is Known Already: Since 1997, ART data in Europe have been collected and reported in 14 manuscripts, published in Human Reproduction.Study Design, Size, Duration: Retrospective data collection of European ART data by the EIM Consortium for the European Society of Human Reproduction and Embryology (ESHRE); cycles started between 1 January and 31 December 2011 are collected on a yearly basis. The data are collected by National Registers, when existing, or on a voluntary basis by personal information.Participants/materials Setting, Methods: From 33 countries (+2 compared with 2010), 1064 clinics reported 609 973 treatment cycles including: IVF 138 592, ICSI 298 918, frozen embryo replacement (FER) 129 693, egg donation (ED) 30 198, in vitro maturation 511, preimplantation genetic diagnosis/screening 6824 and frozen oocyte replacements 5237. European data on intrauterine insemination (IUI) using husband/partner's semen (IUI-H) and donor semen (IUI-D) were reported from 861 IUI laboratories in 24 countries. A total of 174 390 IUI-H and 41 151 IUI-D cycles were included.Main Results and the Role Of Chance: In 17 countries where all clinics reported to the ART register, a total of 361 972 ART cycles were performed in a population of 285 million inhabitants, corresponding to 1269 cycles per million inhabitants. For all IVF cycles, the clinical pregnancy rates per aspiration and per transfer were stable with 29.1 and 33.2%, respectively, and for ICSI, the corresponding rates also were stable with 27.9 and 31.8%, respectively. In FER cycles, the pregnancy rate per thawing increased to 21.3% if compared with previous years. In ED cycles, the pregnancy rate per fresh transfer decreased to 45.8% (47.4% in 2010) and increased to 33.6% (33.3% in 2010) per thawed transfer. The delivery rate after IUI-H decreased to 8.3 (8.9 in 2010), and to 12.2% (13.8% in 2010) after IUI-D. In IVF and ICSI cycles, 1, 2, 3 and 4+ embryos were transferred in 27.5, 56.7, 14.5 and 1.3% of cycles, respectively. The proportions of singleton, twin and triplet deliveries after IVF and ICSI (added together) were 80.8, 18.6 and 0.6%, respectively, resulting in a total multiple delivery rate of 19.2% compared with 20.6% in 2010, 20.2% in 2009, 21.7% in 2008, 22.3% in 2007 and 20.8% in 2006. In FER cycles, the multiple delivery rate was 13.2% (12.8% twins and 0.4% triplets). Twin and triplet delivery rates associated with IUI cycles were 9.7/0.6% and 7.3/0.3%, following IUI-H and IUI-D treatment, respectively.Limitations, Reasons For Caution: The method of reporting varies among countries, and registers from a number of countries have been unable to provide some of the relevant data such as initiated cycles and deliveries. As long as data are incomplete and generated through different methods of collection, results should be interpreted with caution.Wider Implications Of the Findings: The 15th ESHRE report on ART shows a continuing expansion of the number of treatment cycles in Europe, with more than 600 000 cycles reported in 2011. Since 2006, the proportion of IVF to ICSI cycles has reached a plateau after a small decrease in 2009. Pregnancy and delivery rates after IVF remained relatively stable compared with 2010 and 2009. The pregnancy rate per aspiration in ICSI cycles declined for the first time by 0.9%. The multiple delivery rate is lower than ever before.Study Funding/competing Interests: The study had no external funding; all costs are covered by ESHRE. There are no competing interests. [ABSTRACT FROM AUTHOR]

STUDY QUESTION: The 14th European IVF--monitoring (EIM) report presents the results of medically assisted reproduction treatments including assisted reproductive technology (ART) cycles and intrauterine insemination (IUI) cycles initiated in Europe during 2010: are there changes in the trends compared with previous years? SUMMARY ANSWER: Despite some fluctuations in the number of countries reporting, the overall number of ART cycles has continued to increase year by year, and while pregnancy rates in 2010 remained similar to those reported in 2009, the number of transfers with multiple embryos (three or more) further declined. WHAT IS KNOWN ALREADY: Since 1997, ART data in Europe have been collected and reported in 13 manuscripts, published in Human Reproduction. STUDY DESIGN, SIZE, DURATION: Retrospective collection of European ART data by the EIM Consortium for ESHRE; data were collected from cycles started between 1st January and 31st December 2010 by the National Registries of individual European countries, or on a voluntary basis by personal information for European countries without a national registry. PARTICIPANTS/MATERIALS SETTING, METHODS: Out of 31 countries, 991 clinics reported 550 296 ART treatment cycles: IVF (125 994), ICSI (272 771), frozen embryo replacement (FER, 114 593), egg donation (ED, 25 187), in vitro maturation (493), preimplantation genetic diagnosis/preimplantation genetic screening (6399) and frozen oocyte replacements (4859). European data on IUI using husband/partner's semen (IUI-H) or donor semen (IUI-D) were reported from 22 and 19 countries, respectively. A total of 176 512 IUI-H (+8.4% compared with 2009) and 38 124 IUI-D (+30.4% compared with 2009) cycles were included. MAIN RESULTS AND THE ROLE OF CHANCE: In 16 countries where all clinics reported to the national ART registry, a total of 267 120 ART cycles were performed in a population of 219 million inhabitants, corresponding to 1221 cycles per million inhabitants. For IVF, the clinical pregnancy rates per aspiration and per transfer increased to 29.2 and 33.2%, respectively, and for ICSI, the corresponding rates also increased to 28.8 and 32.0%, when compared with the rates of 2009. In FER cycles, the pregnancy rate per thawing was 20.3%; in ED cycles the pregnancy rate per fresh transfer was 47.4% and per thawed transfer 33.3%. The delivery rate after IUI-H was 8.9 and 13.8% after IUI-D. In IVF and ICSI cycles, one, two, three and four or more embryos were transferred in 25.7, 56.7, 16.1 and 1.5%, respectively. The proportions of singleton, twin and triplet deliveries after IVF and ICSI (combined) were 79.4, 19.6 and 1.0%, respectively, resulting in a total multiple delivery rate of 20.6% compared with 20.2% in 2009, 21.7% in 2008, 22.3% in 2007, 20.8% in 2006. In FER cycles, the multiple delivery rate was 12.8% (12.5% twins and 0.3% triplets). Twin and triplet delivery rates associated with IUI cycles were 9.6/0.5 and 8.5/0.2%, following treatment with husband and donor semen, respectively. LIMITATIONS, REASONS FOR CAUTION: The method of reporting is not standardized in Europe but varies among countries. Furthermore registries from a number of countries have been unable to provide some of the relevant data such as initiated cycles and deliveries. Therefore, results should be interpreted with caution. WIDER IMPLICATIONS OF THE FINDINGS: The 14th ESHRE report on ART and IUI treatments shows a continuing expansion of the number of ART treatment cycles in Europe, with more than half a million of cycles reported in 2010. The use of ICSI may have reached a plateau. When compared with 2009/2008, pregnancy and (multiple) delivery rates after IVF and ICSI remained relatively stable. The number of multiple embryo transfers (three or more embryos) has shown a decline. STUDY FUNDING/COMPETING INTERESTS: The study has no external funding; all costs are covered by ESHRE. There are no competing interests. [ABSTRACT FROM AUTHOR]

BACKGROUND This 12th European IVF-monitoring (EIM) report presents the results of treatments involving assisted reproductive technology (ART) initiated in Europe during 2008. METHODS From 36 countries (3 more compared with 2007), 1051 clinics reported 532 260 treatment cycles including: IVF (124 539), ICSI (280 552), frozen embryo replacements (FER, 97 120), egg donation (ED, 13 609), in vitro maturation (IVM, 562), preimplantation genetic diagnosis/screening (PGD/PGS, 2875) and frozen oocyte replacements (FOR, 4080). Overall, this represents a 7.9% increase in the activity since 2007, which is mainly related to an increase in cycles from almost all registers and only partially to the new countries entering EIM (Estonia, Kazakhstan, Moldova and Romania, 5480 cycles in total). European data on intrauterine insemination using husband/partner's (IUI-H) and donor (IUI-D) semen were reported from 27 and 21 countries, respectively. A total of 144 509 IUI-H (+1.5%) and 24 960 IUI-D (−4.3%) cycles were included. RESULTS In 19 countries where all clinics reported to the ART register, a total of 350 143 ART cycles were performed in a population of 369.8 million, corresponding to 947 cycles per million inhabitants. For IVF, the clinical pregnancy rates per aspiration and per transfer were 28.5 and 32.5%, respectively, and for ICSI the corresponding rates were 28.7 and 31.9%. In FER cycles, the pregnancy rate per thawing was 19.3%. The delivery rate after IUI was 9.1% for IUI-H and 13.8% for IUI-D. In IVF and ICSI cycles, one, two, three and four or more embryos were transferred in 22.4, 53.2, 22.3 and 2.1%, respectively. The proportions of singleton, twin and triplet deliveries after IVF and ICSI (combined) were 78.3, 20.7 and 1.0%, respectively, resulting in a total multiple delivery rate of 21.7%, compared with 22.3% in 2007, 20.8% in 2006 and 21.8% in 2005. In FER cycles, the multiple delivery rate was 13.7% (13.4% twins and 0.3% triplets). In women undergoing IUI, twin and triplet deliveries occurred in 10.6% and 0.7% with IUI-H and in 9.4 and 0.3% with IUI-D, respectively. CONCLUSIONS In comparison with previous years, there was an increase in the reported number of ART cycles in Europe. For the first time in 5 years, the pregnancy rates failed to show a year-on-year increase. Compared with 2007, the number of transfers of multiple embryos (3+) and a multiple delivery rate showed a marginal decline. [ABSTRACT FROM AUTHOR]

BACKGROUND This 11th European IVF-monitoring report presents the results of assisted reproductive technology (ART) treatments initiated in Europe during 2007. METHODS From 33 countries, 1029 clinics reported 493 184 treatment cycles: IVF (120 761), ICSI (256 642), frozen embryo replacement (91 145), egg donation (15 731), preimplantation genetic diagnosis/preimplantation genetic screening (4638), in vitro maturation (660) and frozen oocytes replacements (3607). Overall, this represents a 7.6% increase since 2006, mostly related to an increase in all registers. IUI using husband/partner's (IUI-H) and donor (IUI-D) semen was reported from 23 countries: 142 609 IUI-H (+6.2%) and 26 088 IUI-D (+7.2%). RESULTS In 18 countries where all clinics reported, 376 971 ART cycles were performed in a population of 425.6million (886 cycles per million). The clinical pregnancy rates per aspiration and per transfer were 29.1 and 32.8% for IVF, and 28.6 and 33.0% for ICSI. Delivery rate after IUI-H was 10.2% in women aged < 40 years. In IVF/ICSI cycles, 1, 2, 3 and ≥4 embryos were transferred in 21.4, 53.4, 22.7 and 2.5% of cycles, with no decline in the number of embryos per transfer since 2006. The proportion of multiple deliveries (22.3: 21.3% twin and 1.0% triplet), did not decrease compared with 2006 (20.8%) and 2005 (21.8%). In women < 40 years undergoing IUI-H, twin deliveries occurred in 11.7% and triplets in 0.5%. CONCLUSIONS In comparison with previous years, the reported number of ART cycles in Europe increased in 2007; pregnancy rates increased marginally, but the earlier decline in the number of embryos transferred and multiple births did not continue. [ABSTRACT FROM PUBLISHER]

BACKGROUND: In this 10th European IVF-monitoring (EIM) report, the results of assisted reproductive techniques from treatments initiated in Europe during 2006 are presented. Data were mainly collected from existing national registers. [ABSTRACT FROM PUBLISHER]

BACKGROUND: The quantity and the reasons for seeking cross border reproductive care are unknown. The present article provides a picture of this activity in six selected European countries receiving patients. [ABSTRACT FROM PUBLISHER]

Preimplantation genetic diagnosis (PGD) is now well established and provided in many European countries. However, regulations, professional standards and accreditation requirements can differ notably. Furthermore, no comprehensive independent data exist either about practice and provision in Europe or about the quality assurance practices and procedures designed to optimize the quality of the results. Consequently, a study was launched to obtain knowledge, currently lacking, of the provision and quality assurance of PGD services and cross-border activities in Europe. An online questionnaire was developed and sent to PGD providers, and expert opinions were obtained through interviews with professionals in specific countries. Information was gathered from 53 centres offering PGD in 17 European countries. There is a diverse array of tests available, with a trend for custom-made services. Although half of the centres have a designated quality manager, just 33% have achieved or are preparing for accreditation or certification. About 66% of the centres responded that they did not participate in external quality assessment, a problem exacerbated by the lack of existing PGD-specific schemes. Approximately 19% of the centres do not keep data on accuracy and 9% do not even follow up until birth. PGD is an expanding activity with an increasing international flow that accounts for approximately one-third of the activity reported. The survey highlights a significant need for improvement in quality assurance in PGD centres. On the positive side, important improvements in the quality management of these services are expected with the European Tissue Directive entering into force.European Journal of Human Genetics (2008) 16, 290–299; doi:10.1038/sj.ejhg.5201976; published online 19 December 2007 [ABSTRACT FROM AUTHOR]

The controversy concerning the patentability of gene based diagnostics has somewhat abated since the decisions at the European Patent Office on the Myriad patents. Nonetheless, whether it is in the public interest that patents over gene based diagnostics that otherwise fulfill substantive criteria should be available, remains a thorny issue. This article focuses on the patentability of preimplantation genetic diagnosis (PGD), which provides a means to test embryos generated by in vitro fertilisation (IVF) for a variety of inherited diseases, allowing the doctor to select only those without the defect for implantation in the uterus. The public health policy arguments advanced against the myriad patents and surrounding patents on genetic diagnostics generally could also apply to any patent application for a method which includes claims to PGD. This paper considers whether patent claims to PGD methods fall within the ambit of either the section 4(2) Patents Act 1977 'medical exclusion' (implementing the equivalent exclusion in Article 52(4) of the European Patent Convention), or the exclusion in Article 6 of Directive 98/44/DEC on the Legal Protection of Biotechnological Inventions. [ABSTRACT FROM AUTHOR]

The article presents the recommendations of European Society of Human Genetics and European Society of Human Reproduction and Embryology concerning the need for interaction between assisted reproduction technology and genetics, including the importance of reproductive confidence, standard practices, selection of donors, research and development, organization of services, preimplantation genetic screening and preimplantation genetic diagnosis.

This paper describes the current status of preimplantation diagnosis from the viewpoint of an experienced clinician specialized in reproductive medicine. Current progress and international experiences with different applications and techniques are being reviewed on the basis of the literature. Particular interest is focused on possible advantages of routinely diagnosing major chromosome aneuploidies in preimplantation-embryos of patients undergoing in vitro fertilization and embryo transfer. Last but not least, a short survey of the international guidelines and legislation is compared to the situation in the author's country, Austria, where it is currently unclear whether preimplantation diagnosis is allowed or not. [ABSTRACT FROM AUTHOR]

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., (© 2018 The Authors Bioethics Published by John Wiley & Sons Ltd.)

Presents news briefs related to medical ethics as of April 2000. Publication of a parliamentary bill entitled Medical Treatment by the Great Britain government on January 18, 2000; Joint consultation document on preimplantation genetic diagnosis issued by the Human Fertilisation and Embryology and Advisory Committee on Genetic Testing on November 1999; Revision of the World Medical Association's Declaration of Helsinki for the ethics of medical research on humans.

: BACKGROUND Two European centres report on human leukocyte antigen (HLA) typing of preimplantation embryos for haematopoietic stem cell (HSC) transplantation: ‘UZ Brussel’ in Brussels and ‘Genoma’ in Rome. Both centres have 6 years’ experience with technical and clinical aspects of this type of genetic analysis on single blastomeres. : METHODS Both centres apply a similar technique for preimplantation HLA typing using short tandem repeats linked to the HLA locus in multiplex PCR for haplotyping. : RESULTS At present, a conclusive HLA diagnosis could be assured in 92.8% and 90.3% of the embryos at UZ Brussel and at Genoma, respectively. The implantation rates were 32.4% and 28.2%, respectively, and the birth rates per cycle were 9.4% and 18.6%, respectively. The HLA programme at UZ Brussel and at Genoma resulted in the birth of 9 babies and 3 successful HSC transplantations, and 42 babies and 7 successful HSC transplantations, respectively, so far. : CONCLUSIONS Drastic embryo selection for preimplantation HLA typing (in theory 1/4 for HLA, 1/8 for HLA in combination with sexing for X-linked recessive diseases, 3/16 for HLA in combination with autosomal recessive disorders) resulted overall in the birth of 51 babies (15.9% live birth rate per started cycle) in two European centres. [ABSTRACT FROM AUTHOR]

This article continues from an earlier paper that examined Australian laws regulating the use of preimplantation genetic diagnosis (PGD) for the purpose of what the author has tentatively termed 'negative enhancement' to develop that analysis to include an examination of similar laws in the UK and Europe. The term 'negative enhancement' is used to describe those instances where individuals seek to use PGD to achieve outcomes that, commonly, are socially not preferred. In a recent survey by the Genetics and Public Policy Centre, it was found that 3% of IVF-PGD clinics in the United States reported having provided PGD to couples who seek to select an embryo for the presence of a particular disease or disability, such as deafness, in order that the child share the characteristic with the parents. The idea of 'negative enhancement' is, therefore, both a paradox and a useful means to describe the hidden assumptions behind claims that enhancement technologies can only lead us in one direction -- towards a race of blond, blue-eyed, able-bodied, intellectually magnificent and athletically superior beings. In Australia there does appear to be a legal (if not ethical) consensus that PGD should only be used to select against serious disability. In the UK under the Human Fertilization and Embryology Act (1990) to test using PGD, there must be a significant risk of a serious physical/mental disability/illness/medical condition implying that choosing in favour of a disability would not be acceptable. The proposed amendments to the Human Fertilisation and EmbryologyAct currently before the House of Lords contain an explicit prohibition on the use of PGD to select in favour of a disability. In Europe, the Charter of Fundamental Rights of the European Union, 2000 O.J. (C 364) 1 (December 7, 2000) explicitly prohibits eugenic practices in Article 3(2) but there is uncertainty with respect to how that will be interpreted in relation to disability. Specific regulation of PGD exists in a number of European countries but prohibitions and limits vary across the states. This paper will map out these differences and address the question of whether selection in favour of a disability using PGD is allowed in these jurisdictions. [ABSTRACT FROM AUTHOR]