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Journal of Assisted Reproduction and Genetics

Open Access 21-03-2024 | Preimplantation Genetic Diagnostics | Assisted Reproduction Technologies

Mapping ethical, legal, and social implications (ELSI) of preimplantation genetic testing (PGT)

Authors: Ido Alon, Ilona Bussod, Vardit Ravitsky

Published in: Journal of Assisted Reproduction and Genetics

Abstract

Purpose

Preimplantation Genetic Testing (PGT) has attracted considerable ethical, legal, and social scrutiny, but academic debate often fails to reflect clinical realities.

Methods

Addressing this disconnect, a review of 506 articles from 1999 to 2019 across humanities and social sciences was conducted to synthesize the Ethical, Legal, and Social Implications (ELSI) of PGT. This review mined PubMed, WoS, and Scopus databases, using both MeSH terms and keywords to map out the research terrain.

Results

The findings reveal a tenfold increase in global research output on PGT’s ELSI from 1999 to 2019, signifying rising interest and concern. Despite heightened theoretical discourse on selecting “optimal” offspring, such practices were scarcely reported in clinical environments. Conversely, critical issues like PGT funding and familial impacts remain underexplored. Notably, 86% of the ELSI literature originates from just 12 countries, pointing to a research concentration.

Conclusion

This review underscores an urgent need for ELSI research to align more closely with clinical practice, promoting collaborations among ethicists, clinicians, policymakers, and economists. Such efforts are essential for grounding debates in practical relevance, ultimately steering PGT towards ethical integrity, societal acceptance, and equitable access, aiming to harmonize PGT research with real-world clinical concerns, enhancing the relevance and impact of future ethical discussions.

Available only for authorised users

Percentage of transfers of at least one embryo with PGT.

Please note that a fully detailed description of the methods used to collect the corpus can be found in “Mapping Ethical, Legal, & Social Implications (ELSI) of Assisted Reproductive Technologies” (Alon et al., 2023).

To lowerize and tokenize, we used https://tedboy.github.io/nlps/generated/generated/gensim.utils.simple_preprocess.html

In order to produce a readable map in VOSviewer, the number of items (keywords) must be reduced. For the database, 9 was the largest number of repetitions in which at least one keyword from each of the 506 paper was represented.

Alon I, Guimon J, Urbanos-Garrido R (2019b) Regulatory responses to assisted reproductive technology: a comparative analysis of Spain and Israel. J Assisted Reprod Gen, 36:1665–168. https://doi.org/10.1007/s10815-019-01525-7.

Batzer FR, Ravitsky V. Preimplantation genetic diagnosis: ethical considerations. In: Ravitsky V, Fiester A, Caplan AL, editors. The Penn Center Guide to Bioethics. New York: Springer; 2009. p. 339–54.

Chambers G, Adamson D, Eijkemans M (2013) Acceptable cost for the patient and society. Fertility and Sterility, 100(2):319–27. https://doi.org/10.1016/j.fertnstert.2013.06.017.

Doetsch JN, Marques S, Krafft T, Barros H (2021) Impact of macro-socioeconomic determinants on sustainable perinatal health care in Portugal: a qualitative study on the opinion of healthcare professionals and experts. BMC Public Health, 21(1):210. doi: https://doi.org/10.1186/s12889-021-10194-0.

Johnson M, Petersen K. Public interest or public meddling? Towards a subjective framework for the regulation of assisted reproduction technologies. Hum Reprod. 2008;3:716–28. https://doi.org/10.1093/humrep/dem387.CrossRef

Klitzman R. Anticipating issues related to increasing preimplantation genetic diagnosis use: a research agenda. Reprod Biomed Online. 2008;17(1):33–42. https://doi.org/10.1016/S1472-6483(10)60188-5.CrossRefPubMed

Mladovsky P, Sorenson C. Public financing of IVF: a review of policy rationales. Health Care Anal. 2010;18:113–28. https://doi.org/10.1007/s10728-009-0114-3.CrossRefPubMed

Pavone V, Arias F. Beyond the geneticization thesis: the political economy of PGD/PGS in Spain. Sci Technol Human Values. 2012;37(3):235–61. https://doi.org/10.1177/0162243911411195.CrossRef

Präg P, Mills MC. Assisted reproductive technology in Europe:usage and regulation in the context of cross-border reproductive care. In: Kreyenfeld M, Konietzka D, editors. Childlessness in Europe: Contexts, Causes, and Consequences. Berlin: Springer; 2017. p. 289–309.CrossRef

10.

Altarescu G, Beeri RD, Eldar-Geva T, Steinberg A, Levy-Lahad E, Renbaum P. Preimplantation genetic risk reduction: a new dilemma in the era of chromosomal microarrays and exome sequencing. Reprod Biomed Online. 2015;5:706–10. https://doi.org/10.1016/j.rbmo.2015.07.002.CrossRef

11.

Dagan E, Birenbaum-Carmeli D, Friedman E, Feldman B. Performing and declining PGD: accounts of Jewish Israeli women who carry a BRCA1/2 mutation or partners of male mutation carriers. J Genet Couns. 2017;26:5. https://doi.org/10.1007/s10897-017-0087-6.CrossRef

12.

Ehrich K, Williams C, Farsides B, Sandall J, Scott R (2007) Choosing embryos: ethical complexity and relational autonomy in staff accounts of PGD. Sociol Health Illness, 29(7):1091–106, doi: https://doi.org/10.1111/j.1467-9566.2007.01021.x.

13.

Treff et al. (2020) Validation of concurrent preimplantation genetic testing for polygenic and monogenic disorders, structural rearrangements, and whole and segmental chromosome aneuploidy with a single universal platform. Eur J Med Genet, Volume 62, Issue 8, https://doi.org/10.1016/j.ejmg.2019.04.004.

14.

Shenfield F, Pennings G, Cohen J, Devroey P, Tarlatzis B (2005) Taskforce 9: the application of preimplantation genetic diagnosis for human leukocyte antigen typing of embryos. Hum Reprodhttps://doi.org/10.1093/humrep/deh734

15.

Cooper AR, Jungheim ES (2010) Preimplantation genetic testing: indications and controversies. Clin Lab Medhttps://doi.org/10.1016/j.cll.2010.04.008

16.

Bravo-Moreno A. Politics, doctors, assisted reproductive technologies & religion: transgenerational understandings and experiences of single motherhood in Spain. Health Care Women Int. 2017;38(10):1058–74. https://doi.org/10.1080/07399332.2017.1360890.CrossRefPubMed

17.

Pennings G (2009) International evolution of legislation and guidelines in medically assisted reproduction. Reprod BioMed Online, 18 Suppl 2:15–8ת doi: https://doi.org/10.1016/S1472-6483(10)60443-9.

18.

Ravitsky V, Nguyen M, Birko S, Kleiderman E, Laberge A, Knoppers B (2019) Pre-implantation genetic diagnosis: the road forward in Canada. J Obstet Gynaecol Canhttps://doi.org/10.1016/j.jogc.2018.08.001

19.

Rimon-Zarfaty N, Raz AE, Hashiloni-Dolev Y. When does a fetus become a person? An Israeli viewpoint. J Family Plann Reprod Health Care. 2011;37:216–24. https://doi.org/10.1136/jfprhc-2011-0110.CrossRef

20.

Wert DGE. ESHRE Task Force on Ethics and Law 23: medically assisted reproduction in singles, lesbian and gay couples, and transsexual people. Hum Reprod. 2014;29(9):1859–65. https://doi.org/10.1093/humrep/deu183.CrossRefPubMed

21.

Handyside AH (2018) ‘Designer babies’ almost thirty years on. Reproductionhttps://doi.org/10.1530/REP-18-0157

22.

Imudia AN, Plosker S (2016) The past, present, and future of preimplantation genetic testing. Clin Lab Medhttps://doi.org/10.1016/j.cll.2016.01.012

23.

Bayefsky M (2017) Comparative preimplantation genetic diagnosis policy in Europe and the USA and its implications for reproductive tourism. Reproductive BioMedicine and Society Onlinehttps://doi.org/10.1016/j.rbms.2017.01.001

24.

Frati P, Fineschi V, Di Sanzo M, La Russa R, Scopetti M, Severi FM, Turillazzi E (2017) Preimplantation and prenatal diagnosis, wrongful birth and wrongful life: a global view of bioethical and legal controversies. Human Reprod Update, 1–20. doi:doi:https://doi.org/10.1093/humupd/dmx002

25.

Lemke T, Rüppel J (2018) Social dimensions of preimplantation genetic diagnosis; a literature review. New Gen Sochttps://doi.org/10.1080/14636778.2018.1549983

26.

Sueoka K (2016) Preimplantation genetic diagnosis: an update on current technologies and ethical considerations. Reprod Med Biolhttps://doi.org/10.1007/s12522-015-0224-6

27.

Quinn GP, Pal T, Murphy D, Vadaparampil ST, Kumar A (2012) High-risk consumers' perceptions of preimplantation genetic diagnosis for hereditary cancers: a systematic review and meta-analysis. Genet Medhttps://doi.org/10.1038/gim.0b013e31822ddc7e

28.

Sayers E (2021) Entrez programming utilities help - a general introduction to the E-utilities. Maryland: Bethesda. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK25501/

29.

Girardet A, Ishmukhametova A, Viart V, Plaza S, Saguet F, Verriere G ... Claustres M (2018) Thirteen years’ experience of 893 PGD cycles for monogenic disorders in a publicly funded, nationally regulated regional hospital service. Reprod Biomed Online. doi:https://doi.org/10.1016/j.rbmo.2017.10.113

30.

Handyside AH. Preimplantation genetic diagnosis after 20 years. Reprod Biomed Online. 2010;21:280–2. https://doi.org/10.1016/j.rbmo.2010.07.007.CrossRefPubMed

31.

Oyesiku J, Turner C (2002) Reproductive choices for couples with haemophilia. Hsemophiliahttps://doi.org/10.1046/j.1365-2516.2002.00625.x

32.

Finck C, Meister U, Stoebel-Richter Y, Borkenhagen A, Braehler E (2006) Ambivalent attitudes towards pre-implantation genetic diagnosis in Germany. Eur J Obstetr Gynecolo Reprod Biolhttps://doi.org/10.1016/j.ejogrb.2005.11.031

33.

Kemper JM, Gyngell C, Savulescu J (2019) Subsidizing PGD: the moral case for funding genetic selection. J Bioethic Inqhttps://doi.org/10.1007/s11673-019-09932-2

34.

Noble R, Bahadur G, Iqbal M, Sanyal A (2008) Pandora’s box: ethics of PGD for inherited risk of late-onset disorders. Reprod Biomed Onlinehttps://doi.org/10.1016/S1472-6483(10)60332-X

35.

Aarden E, Van Hoyweghen I, Vos R, Horstman K. Providing preimplantation genetic diagnosis in the United Kingdom, The Netherlands and Germany: a comparative in-depth analysis of health-care access. Hum Reprod. 2009. https://doi.org/10.1093/humrep/dep054.CrossRefPubMed

36.

Drazba KT, Kelley MA, Hershberger PE (2014) A qualitative inquiry of the financial concerns of couples opting to use preimplantation genetic diagnosis to prevent the transmission of known genetic disorders. J Gen Counselinghttps://doi.org/10.1007/s10897-013-9638-7

37.

Davis LB, Champion SJ, Fair SO, Baker VL, Garber AM (2010) A cost-benefit analysis of preimplantation genetic diagnosis for carrier couples of cystic fibrosis. Fertil Sterilhttps://doi.org/10.1016/j.fertnstert.2008.12.053

38.

Tur-Kaspa I, Aljadeff G, Rechitsky S, Grotjan HE, Verlinsky Y (2010) PGD for all cystic fibrosis carrier couples: novel strategy for preventive medicine and cost analysis. Reprod Biomed Onlinehttps://doi.org/10.1016/j.rbmo.2010.04.031

39.

Fox D. The illiberality of ‘liberal eugenics.’ Ratio. 2007;10(1):34–6. https://doi.org/10.1111/j.1467-9329.2007.00343.x.CrossRef

40.

Iltis A. Prenatal screening and prenatal diagnosis: contemporary practices in light of the past. J Med Ethics. 2016;42(6):334–9. https://doi.org/10.1136/medethics-2016-103623.CrossRefPubMed

41.

Parker M, Forbes K, Findlay I. Eugenics or empowered choice? Community issues arising from prenatal testing. Aust N Z J Obstet Gynaecol. 2002;42(1):10–4. https://doi.org/10.1111/j.0004-8666.2002.00010.x.CrossRefPubMed

42.

Hollingsworth L. Ethical considerations in prenatal sex selection. Health Soc Work. 2005;30(2):126–34. https://doi.org/10.1093/hsw/30.2.126.CrossRefPubMed

43.

Byrnes W (2003) The ecological imperative and its application to ethical issues in human genetic technology. Ethics Sci Environ Politics, 63–69. doi:https://doi.org/10.3354/esep003063

44.

Sparrow R (2015) Imposing genetic diversity. Am J Bioethicshttps://doi.org/10.1080/15265161.2015.1028658

45.

Vizcarrondo F. Human enhancement: the new eugenics. Linancre Quarterly. 2014;81:3. https://doi.org/10.1179/2050854914Y.0000000021.CrossRef

46.

Savulescu J. Procreative beneficence: why we should select the best children? Bioethics. 2001;15(5–6):413–26. https://doi.org/10.1111/1467-8519.00251.CrossRefPubMed

47.

Malmqvist E (2014) Reproductive choice, enhancement, and the moral continuum argument. J Med Philoshttps://doi.org/10.1093/jmp/jht058

48.

Sparrow R. Better than men? Sex and the therapy/enhancement distinction. Kennedy Inst Ethics J. 2010;20(2):115–44. https://doi.org/10.1353/ken.0.0308.CrossRefPubMed

49.

Elster J (2011) Procreative Beneficence – Cui Bono? Bioethics.https://doi.org/10.1111/j.1467-8519.2009.01794.x

50.

Jacobs B (2015) Is there a moral obligation to select healthy children? J Med Ethicshttps://doi.org/10.1136/medethics-2014-102400

51.

Klipstein S. Parenting in the age of preimplantation gene editing. Hastings Cent Rep. 2017;47(Suppl 3):S28–33. https://doi.org/10.1002/hast.792.CrossRefPubMed

52.

Gyngell C, Douglas T. Stocking the genetic supermarket: reproductive genetic technologies and collective action problems. Bioethics. 2015;29(4):241–50. https://doi.org/10.1111/bioe.12098.CrossRefPubMed

53.

Mehlman M. Genetic enhancement in sport: just another form of doping? Recent Pat DNA Gene Sequences. 2012;6(3):240–6. https://doi.org/10.2174/187221512802717394.CrossRef

54.

Parker LS. In Sport and social justice, is genetic enhancement a game changer? Healht Care Analysis. 2012;20:328–46. https://doi.org/10.1007/s10728-012-0226-z.CrossRef

55.

Hayry M (2004) There is a difference between selecting a deaf embryo and deafening a hearing child. J Med Ethicshttps://doi.org/10.1136/jme.2002.001891

56.

Smolensky KR (2008) Creating children with disabilities: parental tort liability for preimplantation genetic interventions. Hastings Law J, 60.2 299–346. Retrieved from https://repository.uchastings.edu/cgi/viewcontent.cgi?article=3719&context=hastings_law_journal

57.

Shah KR (2010) Selecting barrenness: the use of preimplantation genetic diagnosis by congenitally infertile women to select for infertility. Human Reprod Genet Ethicshttps://doi.org/10.1558/hrge.v16i1.7

58.

Shaw J (2018) Selecting for disabilities: selection versus modification. New Bioethics -a Multidisciplinary Journal of Biotechnology and the Bodyhttps://doi.org/10.1080/20502877.2018.1441671

59.

Amagwula T, Chang P, Hossain A, Tyner J, Rivers A, Phelps J (2012) Preimplantation genetic diagnosis: a systematic review of litigation in the face of new technology. Fertil Sterilhttps://doi.org/10.1016/j.fertnstert.2012.07.1100

60.

Draper H, Chadwick R (1999) Beware! Preimplantation genetic diagnosis may solve some old problems but it also raises new ones. J Med Ethics. doi:https://doi.org/10.1136/jme.25.2.114

61.

Takahashi S, Patrizio P (2019) The impact of mosaic embryos on procreative liberty and procreative responsibility: time to put innovative technology on “pause”. Current Stem Cell Reportshttps://doi.org/10.1007/s40778-019-00164-z

62.

Hens K, Bonduelle M, de Die-Smulders C, Liebaers I (2019) Blurring boundaries. Interviews with PGT couples about comprehensive chromosome screening. Eur J Med Gen. doi:https://doi.org/10.1016/j.ejmg.2018.12.009

63.

Parfenchyk V (2018). The right to preimplantation genetic diagnosis: biological citizenship and the challange to the Italian law on medically assisted reproduction. Eur J Legal Stud, 10.2, 127–163. Retrieved from http://hdl.handle.net/1814/56126

64.

Amor D, Kerr A, Somanathan N, McEwen A, Tome M, Hodgson J, Lewis S (2018) Attitudes of sperm, egg and embryo donors and recipients towards genetic information and screening of donors. Reproductive Health https://doi.org/10.1186/s12978-018-0468-9

65.

Kalfoglou A, Scott J, Hudson K (2005) PGD patients’ and providers’ attitudes to the use and regulation of preimplantation genetic diagnosis. Reproductive BioMedicine Online, Oct;11(4):486–96. https://doi.org/10.1016/S1472-6483(10)61145-5.

66.

Beyleveld D (2000) Is embryo research and preimplantation genetic diagnosis ethical? Forens Sci Intlhttps://doi.org/10.1016/S0379-0738(00)00284-X

67.

Cherkassky L (2017) A gift or a waste? Quintavalle, surplus embryos and the Abortion Act 1967. New Bioethics-a Mltidisciplinary Journal of Biotechnology and the Bodyhttps://doi.org/10.1080/20502877.2017.1345089

68.

Brandenburg K (2007) A new sociological imperative: towards engaging with preimplantation genetic diagnosis. Health Sociol Revhttps://doi.org/10.5172/hesr.2007.16.1.79

69.

Sabatello M (2013) Are the kids all right a child-centred approach to assisted reproductive technologies. Netherlands Quarterly of Human Rightshttps://doi.org/10.1177/016934411303100104

70.

Marambio J, Alcantara M (2018) Ethical problems with the preimplantation genetic diagnosis of human embryos. Acta Bioethicahttps://doi.org/10.4067/S1726-569X2018000100075

71.

Bock von Wülfingen B (2016) Contested change: how Germany came to allow PGD. Reprod Biomed Soc Onlinehttps://doi.org/10.1016/j.rbms.2016.11.002

72.

Hudson K (2006) Preimplantation genetic diagnosis: public policy and public attitudes. Fertil Sterilhttps://doi.org/10.1016/j.fertnstert.2006.01.014

73.

Pennings G (2007) Belgian law on medically assisted reproduction and the disposition of supernumerary embryos and gametes. Eur J Health Lawhttps://doi.org/10.1163/092902707X232971

74.

Pennings G (2007) Decision-making authority of patients and fertility specialists in Belgian law. Reprod Biomed Onlinehttps://doi.org/10.1016/S1472-6483(10)60686-4

75.

Farsides B, Scott R (2012) No small matter for some: practitioners’ views on the moral status and treatment of human embryos. Med Law Revhttps://doi.org/10.1093/medlaw/fwr047

76.

Faustini F, Forte M, Capalbo A, Cimadomo D, Ubaldi F, Rienzi L (2019) The main will of the patients of a private Italian IVF clinic for their aneuploid/affected blastocysts would be donation to research: a currently forbidden choice. J Assist Reprod Genhttps://doi.org/10.1007/s10815-019-01465-2

77.

Popovsky M (2007) Jewish perspectives on the use of preimplantation genetic diagnosis. J Law Med Ethicshttps://doi.org/10.1111/j.1748-720X.2007.00192.x

78.

Serour, G., & Serour, A. (2019). The Islamic perspective: application of advanced reproductive technologies to screen human embryos during IVF. In Human Embryos and Preimplantation Genetic Technologies: Ethical, Social, and Public Policy Aspectshttps://doi.org/10.1016/B978-0-12-816468-6.00010-2

79.

Robertson JA (2003) Extending preimplantation genetic diagnosis: the ethical debate - ethical issues in new uses of preimplantation genetic diagnosis. Hum Reprodhttps://doi.org/10.1093/humrep/deg100

80.

Guell Pelayo F (2014) The post-humanist embryo: genetic manipulation, assisted reproductive technologies and the Principle of Procreative Beneficence. Cuadernos de bioetica : revista oficial de la Asociacion Espanola de Bioetica y Etica Medica. Retrieved from http://aebioetica.org/revistas/2014/25/85/427.pdf

81.

Rosoff PM (2012) The myth of genetic enhancement. Theoret Med Bioethicshttps://doi.org/10.1007/s11017-012-9220-6

82.

Alon I, Guimon J, Urbanos-Garrido R (2019a) What to expect from assisted reproductive technologies? Experts’ forecasts for the next two decades. Technol Forecast Social Chang, Vol. 148, https://doi.org/10.1016/j.techfore.2019.119722.

83.

Hens K, Dondorp W, de Wert G (2013) Embryos without secrets an expert panel study on comprehensive embryo testing and the responsibility of the clinician. Eur J Med Genhttps://doi.org/10.1016/j.ejmg.2012.10.013

84.

Winand R, Hens K, Dondorp W, de Wert G, Moreau Y, Vermeesch JR ... Aerts J (2014) In vitro screening of embryos by whole-genome sequencing: now, in the future or never? Human Reprod. doi:https://doi.org/10.1093/humrep/deu005

85.

Dahl E (2007) The 10 most common objections to sex selection and why they are far from being conclusive: a Western perspective. Reproduct Biomed Onlinehttps://doi.org/10.1016/S1472-6483(10)60752-3

86.

Pennings G (2002) Personal desires of patients and social obligations of geneticists: applying preimplantation genetic diagnosis for non-medical sex selection. Prenatal Diagnosishttps://doi.org/10.1002/pd.499

87.

Dickens B, Serour G, Cook R, Qiu R (2005) Sex selection: treating different cases differently. Intl J Gynecol Obestrhttps://doi.org/10.1016/j.ijgo.2005.05.001

88.

Macklin R (2010) The ethics of sex selection and family balancing. Seminars Reprod Medhttps://doi.org/10.1055/s-0030-1255179

89.

Murphy TF (2013) Getting past nature as a guide to the human sex ratio. Bioethicshttps://doi.org/10.1111/j.1467-8519.2011.01930.x

90.

Schenker, J. (2002). Gender selection: cultural and religious perspectives. J Assist Reprod Genet https://doi.org/10.1023/A:1016807605886

91.

Hendl T (2017) A feminist critique of justifications for sex selection. J Bioetthic Inqhttps://doi.org/10.1007/s11673-017-9797-6

92.

Milliez JM (2007) Sex selection for non-medical purposes. Reprod Biomed Onlinehttps://doi.org/10.1016/S1472-6483(10)60742-0

93.

Tizzard J (2004) Sex selection, child welfare and risk: a critique of the HFEA's recommendations on sex selection. Health Care Analhttps://doi.org/10.1023/B:HCAN.0000026654.01887.85

94.

Daar J, Benward J, Collins L, Davis J, Davis O, Francis L ... Zweifel J (2018a) Disclosure of sex when incidentally revealed as part of preimplantation genetic testing (PGT): an Ethics Committee opinion. Fertil Steril. https://doi.org/10.1016/j.fertnstert.2018.06.019

95.

Merhi ZO, Pal L (2008) Gender “tailored” conceptions: should the option of embryo gender selection be available to infertile couples undergoing assisted reproductive technology? J Med Ethicshttps://doi.org/10.1136/jme.2007.022079

96.

Purdy L (2007) Is preconception sex selection necessarily sexist? Reprod Biomed Onlinehttps://doi.org/10.1016/S1472-6483(10)60547-0

97.

Shahvisi A (2018) Engendering harm: a critique of sex selection for “family balancing”. J Bioethical Inquiryhttps://doi.org/10.1007/s11673-017-9835-4

98.

Smith MK, Taylor-Sands M (2018) Comparing non-medical sex selection and saviour sibling selection in the case of JS and LS v patient review panel: beyond the welfare of the child? J Bioethical Inquiryhttps://doi.org/10.1007/s11673-018-9838-9

99.

Puri S, Nachtigall RD (2010) The ethics of sex selection: a comparison of the attitudes and experiences of primary care physicians and physician providers of clinical sex selection services. Fertil Steril https://doi.org/10.1016/j.fertnstert.2009.02.053

100.

Katz M, Fitzgerald L, Bankier A, Savulescu J, Cram D (2002). Issues and concerns of couples presenting for preimplantation genetic diagnosis (PGD). Prenatal Diagnosishttps://doi.org/10.1002/pd.498

101.

Mutlu B (2017) Morally accounting for sex selection online in Turkey. Biosocietieshttps://doi.org/10.1057/s41292-017-0057-0

102.

Scully JL, Shakespeare T, Banks S (2006) Gift not commodity? Lay people deliberating social sex selection. Sociol Health Illness. doi:https://doi.org/10.1111/j.1467-9566.2006.00540.x

103.

Al-Akour N, Khassawneh M, Zayed F, Khader Y (2012) Characteristics of women visiting an infertility clinic and their interest in preimplantation sex selection in the north of Jordan. Eur J Obestr Gynecolo Reproduct Biolhttps://doi.org/10.1016/j.ejogrb.2012.09.002

104.

Landau R (2008) Sex selection for social purposes in Israel: quest for the “perfect child” of a particular gender or centuries old prejudice against women? J Med Ethicshttps://doi.org/10.1136/jme.2007.023226

105.

Missmer SA, Jain T (2007) Preimplantation sex selection demand and preferences among infertility patients in Midwestern United States. J Assist Reprod Genhttps://doi.org/10.1007/s10815-007-9157-2

106.

Swetkis D, Gilroy F, Steinbacher R (2002) Firstborn preference and attitudes toward using sex selection technology. J Genet Psycholhttps://doi.org/10.1080/00221320209598680

107.

Monson O, Donaghue N (2015) You get the baby you need: negotiating the use of assisted reproductive technology for social sex selection in online discussion forums. Qualitative Res Psycholhttps://doi.org/10.1080/14780887.2015.1008908

108.

Whittaker A (2015) Media debates and ‘ethical publicity’ on social sex selection through preimplantation genetic diagnosis (PGD) technology in Australia. Cult Health Sexualhttps://doi.org/10.1080/13691058.2015.1018947

109.

Nickel RS, Kamani NR (2018) Ethical challenges in hematopoietic cell transplantation for sickle cell disease. Biol Blood Marrow Transplanthttps://doi.org/10.1016/j.bbmt.2017.08.034

110.

Pennings G, Schots R, Liebaers I (2002) Ethical considerations on preimplantation genetic diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling. Human Reprodhttps://doi.org/10.1093/humrep/17.3.534

111.

Wolf S, Kahn J, Wagner J (2003) Using preimplantation genetic diagnosis to create a stem cell donor: issues, guidelines & limits. J Law Med Ethicshttps://doi.org/10.1111/j.1748-720X.2003.tb00097.x

112.

Taylor-Sands M (2010) Saviour Sibling and collective family interests. Monash Bioeth Revhttps://doi.org/10.1007/BF03351522

113.

Hashiloni-Dolev Y, Shkedi S (2007) On new reproductive technologies and family ethics: pre-implantation genetic diagnosis for sibling donor in Israel and Germany. Soc Sci Medhttps://doi.org/10.1016/j.socscimed.2007.06.016

114.

Madanamoothoo A (2011) Saviour-sibling and the psychological, ethical and judicial issues that it creates: should English and French legislators close the Pandora’s Box? European J Health Lawhttps://doi.org/10.1163/157180911x574119

115.

Parikh SH, Pentz RD, Haight A, Adeli M, Martin PL, Driscoll TA ... Barfield RC (2019) Ethical considerations of using a single minor donor for three bone marrow harvests for three HLA-matched siblings with primary immunodeficiency. Pediatric Blood & Cancer. doi:https://doi.org/10.1002/pbc.27602

116.

Hui EC, Chan C, Liu A, Chow K. Attitudes of Chinese couples in Hong Kong regarding using preimplantation genetic diagnosis (PGD) and humanleukocyte antigens (HLA) typing to conceive a ‘Saviour Child.’ Prenat Diagn. 2009;29:593–665. https://doi.org/10.1002/pd.2255.CrossRefPubMed

117.

Raz A, Schuees C, Wilhelm N, Rehmann-Sutter C (2017) Saving or subordinating life? Popular views in Israel and Germany of donor siblings created through PGD. J Med Human. doi:https://doi.org/10.1007/s10912-016-9388-2

118.

Menon U, Harper J, Sharma A, Fraser L, Burnell M, ElMasry K, ... Jacobs I (2007) Views of BRCA gene mutation carriers on preimplantation genetic diagnosis as a reproductive option for hereditary breast and ovarian cancer. Human Reprodction. doi:https://doi.org/10.1093/humrep/dem055

119.

Gietel-Habets JJ, de Die-Smulders CE, Derks-Smeets IA, Tibben A, Tjan-Heijnen VC, van Golde R ... van Osch LA (2017) Awareness and attitude regarding reproductive options of persons carrying a BRCA mutation and their partners. Human Reproduction. doi:https://doi.org/10.1093/humrep/dew352

120.

Daar J, Benward J, Collins L, Davis J, Davis O, Francis L ... Zweifel J (2018b) Use of preimplantation genetic testing for monogenic defects (PGT-M) for adult-onset conditions: an Ethics Committee opinion. Fertil Steril. doi:https://doi.org/10.1016/j.fertnstert.2018.04.003

121.

Krahn T (2009) Preimplantation genetic diagnosis: does age of onset matter (anymore)? Med Health Care Philoshttps://doi.org/10.1007/s11019-008-9171-x

122.

Shenfield F (2008) Preimplantation genetic diagnosis for inherited breast cancer: legal and ethical issues. Expert Rev Obstetr Gynecolhttps://doi.org/10.1586/17474108.3.5.601

123.

Wang C-W, Hui EC (2009) Ethical, legal and social implications of prenatal and preimplantation genetic testing for cancer susceptibility. Reprod Biom Onlinehttps://doi.org/10.1016/S1472-6483(10)60274-X

124.

Zuckerman S, A. G. (2019) Too much information? The paradox of enlarging genetic datasets for human embryo assessment during in vitro fertilization (IVF). Human Embryos and Preimlantation Genetic Technologies: Ethical, Social, and Public Policy Aspectshttps://doi.org/10.1016/B978-0-12-816468-6.00002-3

125.

Asscher E, Koops B (2010) The right not to know and preimplantation genetic diagnosis for Huntington's disease. J Medic Ethicshttps://doi.org/10.1136/jme.2009.031047

126.

Stern H, Harton G, Sisson M, Jones S, Fallon L, Thorsell L ... Schulman J (2002) Non-disclosing preimplantation genetic diagnosis for Huntington disease. Prenatal Diagnosis. doi:https://doi.org/10.1002/pd.359

127.

Chan SH, Li RH, Lee VC, Tang MH, Ng EH (2019) Knowledge, attitude and ethical consideration of Chinese couples requesting preimplantation genetic testing in Hong Kong. J Obstetr Gynaecol Reshttps://doi.org/10.1111/jog.13940

128.

Gebhart MB, Hines RS, Penman A, Holland AC (2016) How do patient perceived determinants influence the decision-making process to accept or decline preimplantation genetic screening? Fertil Sterilhttps://doi.org/10.1016/j.fertnstert.2015.09.022

129.

Quinn MM, Juarez-Hernandez F, Dunn M, Okamura RJ, Cedars MI, Rosen MP (2018) Decision-making surrounding the use of preimplantation genetic testing for aneuploidy reveals misunderstanding regarding its benefit. J Assist Reprod Genethttps://doi.org/10.1007/s10815-018-1337-8

130.

Brandenburg K (2011) Risk, parental autonomy and the epistemic divide: preimplantation genetic diagnosis in the Australian print news media, 1990-2007. New Gen Sochttps://doi.org/10.1080/14636778.2011.556710

131.

Kadar E (2017) Opportunity, obligation, risk - the representation of preimplantational genetic tests in the Hungarian online news media. Corvinus J Sociol Soc Policyhttps://doi.org/10.14267/CJSSP.2017.01.03

132.

Swoboda D (2015) Frames of reference: marketing the practice and ethics of PGD on fertility clinic websites. Adv Med Sociolhttps://doi.org/10.1108/S1057-629020150000016008

133.

Morrow A, Seeho S, Barlow-Stewart K, Fleming J, Meiser B, Karatas J (2016) Referral of patients for pre-implantation genetic diagnosis: a survey of obstetricians. Austr New Zealand J Obstetr Gynaecolhttps://doi.org/10.1111/ajo.12522

134.

Caldas GH, Caldas E, Araujo ED, Bonetti TC, Leal CB, Costa AM (2010) Opinions concerning pre-implantation genetic diagnosis and sex selection among gynecologist-obstetricians in Brazil. Eur J Obstetr Gynecol Reprod Biolhttps://doi.org/10.1016/j.ejogrb.2009.10.023

135.

Klitzman R, Abbate KJ, Chung WK, Ottman R, Leu C-S, Appelbaum PS (2014) Views of preimplantation genetic diagnosis among psychiatrists and neurologists. J Reprod Med. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4129544/

136.

McGowan ML, Burant CJ, Moran R, Farrell R (2009) Patient education and informed consent for preimplantation genetic diagnosis: health literacy for genetics and assisted reproductive technology. Genet Medhttps://doi.org/10.1097/GIM.0b013e3181ac6b52

137.

Mounts E, Besser A (2019) Genetic counseling for preimplantation genetic testing (PGT): Practical and ethical challenges. Human Embryos and Preimplantation Genetic Technologies: Ethical, Social, and Public Policy Aspectshttps://doi.org/10.1016/B978-0-12-816468-6.00006-0

138.

Lavery S, Aurell R, Turner C, Castello C, Veiga A, Barri P, Winston R (2002) Preimplantation genetic diagnosis: patients’ experiences and attitudes. Human Reprodhttps://doi.org/10.1093/humrep/17.9.2464

139.

Roberts C, Franklin S (2004) Experiencing new forms of genetic choice: findings from an ethnographic study of preimplantation genetic diagnosis. Human fertility (Cambridge, England). doi:https://doi.org/10.1080/14647270400016449

140.

Jarvholm S, Broberg M, Thurin-Kjellberg A (2014) The choice of Pre-implantation Genetic Diagnosis (PGD), a qualitative study among men and women. J Reprod Infant Psycholhttps://doi.org/10.1080/02646838.2013.851372

141.

Jarvholm S, Thurin-Kjellberg A, Broberg M (2017) Experiences of Pre-Implantation Genetic Diagnosis (PGD) in Sweden: a three-year follow-up of men and women. J Gen Counselhttps://doi.org/10.1007/s10897-017-0078-7

142.

Kosicka-Slawinska M, Clarke A, Lashwood A (2013) Preimplantation genetic diagnosis: understanding what parents plan to tell their children about their conception. J Gen Counselhttps://doi.org/10.1007/s10897-013-9585-3

143.

Bracewell-Milnes T, Ben-Nagi J, Thum M-Y (2019) Psychological and interpersonal factors in preimplantation embryo assessment. Human Embryos and Preimplantation Genetic Technologies: Ethical, Social, and Public Policy Aspectshttps://doi.org/10.1016/B978-0-12-816468-6.00007-2

144.

Goldman KN, Blakemore J, Kramer Y, McCulloh DH, Lawson A, Grifo JA (2019) Beyond the biopsy: predictors of decision regret and anxiety following preimplantation genetic testing for aneuploidy. Human Reproductionhttps://doi.org/10.1093/humrep/dez080

145.

Bayefsky M (2018) Who should regulate preimplantation genetic diagnosis in the United States? AMA J Ethicshttps://doi.org/10.1001/amajethics.2018.1160

146.

Boggio A, Corbellini G (2009) Regulating assisted reproduction in Italy: a 5-year assessment. Human Fertilityhttps://doi.org/10.1080/14647270902849719

147.

De Geyter C (2012) Assisted reproductive medicine in Switzerland. Swiss Medical Weeklyhttps://doi.org/10.4414/smw.2012.13569

148.

Griessler E, Hager M. Changing direction: the struggle of regulating assisted reproductive technology in Austria. Reprod Biomed Online. 2016;3:68–76. https://doi.org/10.1016/j.rbms.2016.12.005.CrossRef

149.

Nelson EL. Comparative perspectives on the regulation of assisted reproductive technologies in the United Kingdom and Canada. Alberta Law Review. 2006;43(4):1023–48. https://doi.org/10.1016/j.fertnstert.2005.11.068.CrossRef

150.

Bouffard C, Godin J-K, Bévière B (2010) State intervention in couples’ reproductive decisions: socioethical reflections based on the practice of preimplantation genetic diagnosis in France. AJOB Primary Reshttps://doi.org/10.1080/21507716.2010.505897

151.

s Ishii T (2018) Global changes in the regulation of reproductive medicine. In Reference Module in Biomedical Sciences. Hokkaido University, Sapporo, Japan. doi:https://doi.org/10.1016/B978-0-12-801238-3.64907-3

152.

Knoppers B, Isasi R (2004) Regulatory approaches to reproductive genetic testing. Human Reprodhttps://doi.org/10.1093/humrep/deh505

153.

Krones T, Richter G (2004) Preimplantation genetic diagnosis (PGD): European perspectives and the German situation. J Med Philoshttps://doi.org/10.1080/03605310490514243

154.

Grant EW (2010) Assessing the constitutionality of reproductive technologies regulation: a bioethical approach. Hasting Law J. Retrieved from https://repository.uchastings.edu/hastings_law_journal/vol61/iss4/6/

155.

Valkenburg G, Aarden E (2011) Constructing embryos, constructing politics: connecting politics and technology in the Netherlands and Germany. Biosocieties. https://doi.org/10.1057/biosoc.2011.19

156.

Tomkins J (2014) Developing theological tools for a strategic engagement with Human Enhancement. The New bioethics : a multidisciplinary journal of biotechnology and the bodyhttps://doi.org/10.1179/2050287714Z.00000000049

157.

Weitzman G, Segev L, David B (2019) An Orthodox Jewish approach to ethical and social aspects of embryo testing. In Human Embryos and Preimplantation Genetic Technologies: Ethical, Social, and Public Policy Aspectshttps://doi.org/10.1016/B978-0-12-816468-6.00011-4

158.

Alsulaiman A, Hewison J (2006) Attitudes to prenatal and preimplantation diagnosis in Saudi parents at genetic risk. Prenatal Diagnosis.https://doi.org/10.1002/pd.1544

159.

Ecklund EH, Peifer JL, White V, Chan E (2017) Moral schemas in articulation and intuition: how religious people evaluate human reproductive genetic technologies. Sociol Forunhttps://doi.org/10.1111/socf.12330

160.

Kalfoglou A, Broder M (2011) Orthodox Ashkenazi young adults’ knowledge, experiences, attitudes, and beliefs about genetic carrier testing. AJOB Primary Reshttps://doi.org/10.1080/21507716.2011.600749

161.

Meilaender G (2019) The end of sex: Finis or Telos? Christian Bioethicshttps://doi.org/10.1093/cb/cbz004

162.

Gianaroli L, C. A., Stanghellini I, Ferraretti AP (2014) Reiterative changes in the Italian regulation on IVF: the effect on PGD patients’ reproductive decisions. Reprod BioMed Online, 28, 125– 132https://doi.org/10.1016/j.rbmo.2013.08.014

163.

Ignovska E, Blasi GF (2017) Reproduction, the key to human evolution: a legal and ethical study. BioLaw J - Rivista di BioDirittohttps://doi.org/10.15168/2284-4503-240

164.

Whittaker A (2010) Challenges of medical travel to global regulation: a case study of reproductive travel in Asia [Problématique du voyage médical au regard de la réglementation internationale: Etude de cas sur le tourisme reproductif en Asie]. Global Soc Policyhttps://doi.org/10.1177/1468018110379981

165.

Krolokke C, Kotsi F (2019) Pink and blue: assemblages of family balancing and the making of Dubai as a fertility destination. Sci Technol Human Valueshttps://doi.org/10.1177/0162243918783059

166.

Davies T (2010) Cross-border reproductive care: quality and safety challenges for the regulator. Fertil Sterilhttps://doi.org/10.1016/j.fertnstert.2009.11.005

167.

Levine AD, Boulet SL, Berry RM, Jamieson DJ, Alberta-Sherer HB, Kissin DM (2017) Assessing the use of assisted reproductive technology in the United States by non-United States residents. Fertil Sterilhttps://doi.org/10.1016/j.fertnstert.2017.07.1168

168.

Rinčić I, Muzur A, Sodeke S (2018) Sex selection, gender selection, and sexism. In Clinical Ethics at the Crossroads of Genetic and Reproductive Technologieshttps://doi.org/10.1016/B978-0-12-813764-2.00006-4

169.

Capelouto SM, Archer SR, Morris JR, Kawwass JF, Hipp HS (2018) Sex selection for non-medical indications: a survey of current pre-implantation genetic screening practices among US ART clinics. J Assist Reprod Gen https://doi.org/10.1007/s10815-017-1076-2

170.

Coonen E, van Montfoort A, Carvalho F, Moutou C, Rubio C, De Rycke M, Goossens V (2020) ESHRE PGT Consortium data collection XVI–XVIII: cycles from 2013 to 2015. Human Reproduction Open, 1–11, 2020. https://doi.org/10.1093/hropen/hoaa043

171.

Kushnir V, Adashi E, Cohen I (2023) Preimplantation sex selection via in vitro fertilization: time for a reappraisal. Fertil Sterilhttps://doi.org/10.1016/j.xfre.2023.05.006

172.

Kleiderman E, Ravitsky V, Knoppers BM (2019) The ‘serious’ factor in germline modification. J Med Ethicshttps://doi.org/10.1136/medethics-2019-105436

173.

Alon I, Urbanos-Garrido R, Guimon J (2021) Regulating reproductive genetic services: dealing with spiral-shaped. J Assist Reprod Gen, 38:305–317. https://doi.org/10.1007/s10815-020-02017-9.

174.

Sermon K, Capalbo A, Cohen J, Coonen E, DeRycke M, Devos A, ... Sco (2016) The why, the how and the when of PGS 2.0: current practices and expert opinions of fertility specialists, molecular biologists, and embryologists. Mol Hum Reprod. doi:https://doi.org/10.1093/molehr/gaw034

175.

CDC. (2021). 2019 Assisted Reproductive Technology (ART) Fertility Clinic and National Summary Report. Centers for Disease Control and Prevention (CDC). Retrieved from https://www.cdc.gov/art/reports/2019/pdf/2019-Report-ART-Fertility-Clinic-National-Summary-h.pdf

176.

Wilkinson J, Malpas P, Hammarberg K, Tsigdinos P, Lensen S, Jackson E ... Mol B (2019) Do a la carte menus serve infertility patients? The ethics and regulation of in vitro fertility add-ons. Fertil Steril. doi:https://doi.org/10.1016/j.fertnstert.2019.09.028

177.

Somigliana E, Busnelli A, Paffoni A, Vigano P, Riccaboni A, Rubio C, Capalbo A (2019) Cost-effectiveness of preimplantation genetic testing for aneuploidies. Fertil Steril https://doi.org/10.1016/j.fertnstert.2019.01.025

178.

Xuan H, Xiao W, Jiaojie S, Bin W, Yingpeng W, Zhuolin Z ... Li X (2022) In vitro fertilization with preimplantation genetic testing for aneuploidy for infertility in China: a cost-effectiveness analysis. BJOG: Intl J Obstetr Gynaecolhttps://doi.org/10.22541/au.165470407.70282169/v1

179.

Ravitsky V (2017) The shifting landscape of prenatal testing: between reproductive autonomy and public health. Hastings Center Report, Dec;47 Suppl 3:S34-S40. doi:https://doi.org/10.1002/hast.793.

180.

von Wülfingen BB (2016) Contested change: how Germany came to allow PGD. Reprod Biomed Soc Onlinehttps://doi.org/10.1016/j.rbms.2016.11.002

181.

CDC (2017) 2015 Assisted Reproductive Technology (ART) Fertility Clinic and National Summary Report. Centers for Disease Control and Prevention (CDC). Retrieved from https://www.cdc.gov/art/pdf/2015-report/art-2015-national-summary-report.pdf

182.

CDC. (2018). 2016 Assisted Reproductive Technology (ART) Fertility Clinic and National Summary Report. Centers for Disease Control and Prevention (CDC). Retrieved from https://www.cdc.gov/art/pdf/2016-report/ART-2016-National-Summary-Report.pdf

183.

CDC (2019) 2017 Assisted Reproductive Technology (ART) Fertility Clinic and National Summary Report. Centers for Disease Control and Prevention (CDC). Retrieved from https://ftp.cdc.gov/pub/Publications/art/ART-2017-Clinic-Report-Full.pdf

184.

European IVF Monitoring Consortium (EIM), f. t.-J.-S. (2022). ART in Europe, 2018: results generated from European registries by ESHRE. Human Reproduction Open, Issue 3. doi:https://doi.org/10.1093/hropen/hoac022

185.

García D, Massucci FA, Mosca A, Ràfols I, Rodríguez A, Vassen R. Mapping research in assisted reproduction worldwide. Reprod Biomed Online. 2020;40(1):P71-81. https://doi.org/10.1016/j.rbmo.2019.10.013.CrossRef

Title: Mapping ethical, legal, and social implications (ELSI) of preimplantation genetic testing (PGT)
Authors: Ido Alon
Ilona Bussod
Vardit Ravitsky
Publication date: 21-03-2024
Publisher: Springer US
Keyword: Preimplantation Genetic Diagnostics
Published in: Journal of Assisted Reproduction and Genetics
Print ISSN: 1058-0468
Electronic ISSN: 1573-7330
DOI: https://doi.org/10.1007/s10815-024-03076-y

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Mapping ethical, legal, and social implications (ELSI) of preimplantation genetic testing (PGT)

Abstract

Purpose

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusion

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