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      Comparative preimplantation genetic diagnosis policy in Europe and the USA and its implications for reproductive tourism

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          Abstract

          Unlike many European nations, the USA has no regulations concerning the use of preimplantation genetic diagnosis (PGD), a technique employed during some fertility treatments to select embryos based on their genes. As such, PGD can and is used for a variety of controversial purposes, including sex selection, selection for children with disabilities such as deafness, and selection for ‘saviour siblings’ who can serve as tissue donors for sick relatives. The lack of regulation, which is due to particular features of the US political and economic landscape, has ethical and practical implications for patients seeking PGD around the world. This paper contrasts the absence of PGD oversight in the USA with existing PGD policies in Switzerland, Italy, France and the UK. The primary reasons why PGD is not regulated in the USA are addressed, with consideration of factors such as funding for assisted reproductive technology treatmemt and the proximity of PGD to the contentious abortion debate. The obstacles that would need to be overcome in the USA for PGD to be regulated in the future are outlined. Then, the significance of the current divergence in PGD policy for patients around the world are discussed. Regulatory differences create opportunities for reproductive tourism, which result in legal, health and moral challenges. The paper concludes with comments on the need for policymakers around the world to balance respect for the characters and constitutions of their individual countries with appreciation of the needs of infertile patients across the globe.

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          Most cited references24

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          Cross border reproductive care in six European countries.

          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. Data were collected from 46 ART centres, participating voluntarily in six European countries receiving cross border patients. All treated patients treated in these centres during one calendar month filled out an individual questionnaire containing their major socio-demographic characteristics, the treatment sought and their reasons for seeking treatment outside their country of residence. In total, 1230 forms were obtained from the six countries: 29.7% from Belgium, 20.5% from Czech Republic, 12.5% from Denmark, 5.3% from Slovenia, 15.7% from Spain and 16.3% from Switzerland. Patients originated from 49 different countries. Among the cross border patients participating, almost two-thirds came from four countries: Italy (31.8%), Germany (14.4%), The Netherlands (12.1%) and France (8.7%). The mean age of the participants was 37.3 years for all countries (range 21-51 years), 69.9% were married and 90% were heterosexual. Their reasons for crossing international borders for treatment varied by countries of origin: legal reasons were predominant for patients travelling from Italy (70.6%), Germany (80.2%), France (64.5%), Norway (71.6%) and Sweden (56.6%). Better access to treatment than in country of origin was more often noted for UK patients (34.0%) than for other nationalities. Quality was an important factor for patients from most countries. The cross border phenomenon is now well entrenched. The data show that many patients travel to evade restrictive legislation in their own country, and that support from their home health providers is variable. There may be a need for professional societies to establish standards for cross border reproductive care.
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            Legal harmonization and reproductive tourism in Europe.

            Legislation of ethical issues illustrates the uneasy mix of ethics and politics. Although the majority has the political right to express its moral views in the law, a number of important ethical values like autonomy, tolerance and respect for other people's opinions urge the majority to take the minorities' position into account. Ignoring pluralism in society will inevitably lead to reproductive tourism. Although European legislation and harmonization in the domain of medically assisted reproduction is presented as a partial solution to this phenomenon, it is argued that European legislation should be avoided as much as possible. Regulation of these private ethical matters should be left to the national parliaments. A soft or compromise legislation will keep reproductive travelling to a minimum. Reproductive tourism is a safety valve that reduces moral conflict and expresses minimal recognition of the others' moral autonomy.
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              Genetic testing of embryos: practices and perspectives of US in vitro fertilization clinics.

              To better understand the current practices of IVF clinics regarding preimplantation genetic diagnosis (PGD) and explore the attitudes and opinions of clinic directors toward PGD. On-line Survey of 415 assisted reproductive technology (ART) clinics in the United States. The Survey had a valid response rate of 45% (186 clinics). Not applicable. Respondents were medical directors, laboratory directors, IVF directors, or directors' designees of ART clinics offering IVF. Not applicable. Practices and beliefs of IVF clinic directors with respect to PGD. Preimplantation genetic diagnosis is widely provided for a variety of indications, and clinic directors support professional guidelines to guide PGD in the future. Preimplantation genetic diagnosis is an established technology and medical procedure offered by a majority of US IVF clinics. Many clinics currently provide PGD for controversial indications such as sex selection. Although there is little support for government regulation of PGD, there is significant support among IVF clinics for strong professional guidelines for PGD practice. Ongoing collection of data on PGD practice and outcomes would help patients make informed decisions and aid professionals in developing appropriate guidelines and standards.
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                Author and article information

                Contributors
                Journal
                Reprod Biomed Soc Online
                Reprod Biomed Soc Online
                Reproductive Biomedicine & Society Online
                Elsevier
                2405-6618
                22 February 2017
                December 2016
                22 February 2017
                : 3
                : 41-47
                Affiliations
                Bioethics Department, National Institutes of Health, 10 Center Drive, Building 10, Room 1C118, Bethesda, Maryland, USA 20892
                Article
                S2405-6618(17)30004-7
                10.1016/j.rbms.2017.01.001
                5612618
                28959787
                d2628419-f1d8-4d9b-a534-eb58ecde491f

                This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

                History
                : 30 November 2015
                : 27 July 2016
                : 23 January 2017
                Categories
                Brocher Symposium: Between Policy and Practice - Interdisciplinary Perspectives on Assisted Reproductive Technologies and Equitable Access to Healthcare

                comparative policy,embryo,preimplantation genetic diagnosis,reproductive tourism,selection

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