Abstract
This chapter calls for a reflection on the legal and ethical aspects of embryo selection in reproduction, tracing the beginnings of the global problems of infertility and the brief advent of ARTs and other forms of prenatal testing technologies into the reproductive landscape. I surmise in this chapter that the quest for bearing a child free of diseases has led to the concept of perfection, and why reproductive technologies like PGS and PGD have gained increasing importance. In highlighting the regulatory or legal pronouncements that govern PGS and PGD in the selected jurisdictions for the book, I identify the main debates that dominate the discourse of embryo selection and potential genetic interventions that have, and shall continue to shape the framework of regulation in the various jurisdictions. These debates have been categorized into the political and socio-legal or legal debates; the religious and cultural debates; and the ethical and philosophical debates.
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Notes
- 1.
The discourse on global infertility is a vital component in understanding how pre-implantation genetic screening technologies made their foray into the realm of reproduction. Not only does infertility impact on matters of population and economic growth, it is also the main motivation behind reproductive technologies like PGD and PGS.
- 2.
ICPD, ‘Policy Recommendations for the ICPD Beyond 2014: Sexual and Reproductive Health & Rights for All’ http://icpdtaskforce.org/resources/policy-recommendations-for-the-ICPD-beyond-2014.pdf.
- 3.
Inhorn and Patrizio (2015), p. 411.
- 4.
ICPD (n 2).
- 5.
Brezina and Zhao (2012).
- 6.
Dudgeon and Inhorn (2004), p. 1379.
- 7.
Inhorn (2007), p. 1.
- 8.
Goslinga-Roy (2000), p. 113.
- 9.
Inhorn (2013), p. 50.
- 10.
Norwitz and Levy (2013), p. 48.
- 11.
Hsu et al. (2014), p. 1262.
- 12.
Knowles and Kaebnick (2007). Reprogenetics refers to the “creation, use, manipulation or storage of gametes and embryos,” as defined in a report by the Hastings Center.
- 13.
Inhorn (2009), p. 172.
- 14.
As stipulated in Chap. 1, the overarching concern of genetic interventions and PGD referred to in this book is targeted at the non-therapeutic use of medical and scientific technologies.
- 15.
Singer (2016).
- 16.
Inhorn and Patrizio (2015).
- 17.
World Health Organization, ‘WHO | Infertility Is a Global Public Health Issue’ (WHO) http://www.who.int/reproductivehealth/topics/infertility/perspective/en/.
- 18.
Inhorn and Patrizio (2015).
- 19.
These reasons include both primary and secondary infertility. The World Health Organization (WHO) defines infertility as “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after twelve months or more of regular unprotected sexual intercourse.”(WHO-ICMART glossary). Please see also http://www.who.int/reproductivehealth/topics/infertility/definitions/en accessed on 23/3/2018. However, there are often other ‘definitions’ ascribed to the meaning of infertility. Inhorn and Patrizio quote a study supported by the WHO and the Bill and Melinda Gates Foundation that defines primary infertility as “inability to have any live birth”, and secondary infertility as “inability to have an additional live birth”.
- 20.
Inhorn and Patrizio (2015), p. 412.
- 21.
Ibid 413.
- 22.
Ibid 414.
- 23.
Ibid.
- 24.
Weltgesundheitsorganisation (2005), p. 11.
- 25.
Ibid 16.
- 26.
Inhorn and Patrizio (2015), p. 414.
- 27.
ICPD (n 2) 16.
- 28.
Inhorn and Patrizio (2015), p. 414.
- 29.
Ibid 426.
- 30.
Ibid 425.
- 31.
Ibid 424.
- 32.
Gribble and Bremner (26 November 2012). A demographic dividend has been defined as “accelerated economic growth that may result from a decline in a country’s mortality and fertility and the subsequent change in the age structure of the population.”
- 33.
Inhorn and Patrizio (2015), p. 415.
- 34.
Ibid 412–415.
- 35.
Ibid 413. Inhorn and Patrizio listed six particular demographic realities that contribute to the global infertility issues. In a nutshell, they are as follows (quoted verbatim from Inhorn and Patrizio’s study):-
-
a)
Millions of people around the globe suffer from infertility
-
b)
Women in low-resource settings continue to suffer from high rates of secondary infertility
-
c)
Africa continues to suffer from inordinately high rates of infertility
-
d)
High rates of infertility co-exist with high rates of fertility in Africa- a demographic paradox known as “barrenness and plenty”
-
e)
Lack of infertility prevention and treatment services is often justified as a form of population control, particularly in high-fertility settings such as sub-Saharan Africa
-
f)
Those parts of the world with the highest rates of infertility are least likely to offer reliable diagnosis and treatment, including IVF services
-
a)
- 36.
Ibid 418.
- 37.
Etuk (2009), p. 85.
- 38.
Ibid.
- 39.
Ibid 86.
- 40.
Ibid 88. Etuk, a gynaecologist, is of the opinion, as is the opinion of numerous medical professionals, that a large number of problems relating to infertility can be preventable by diagnosis and early treatment of infections. He propagates an approach on a tiered level, divided into primary, secondary and tertiary prevention mechanisms that may be undertaken by states.
- 41.
ICPD (n 2).
- 42.
Foucault (1976).
- 43.
Goslinga-Roy (2000).
- 44.
Ibid 121.
- 45.
Ibid 421.
- 46.
Ibid 122.
- 47.
Foucault (1963).
- 48.
Haraway (2000).
- 49.
Goslinga-Roy (2000), p. 136.
- 50.
Haraway (2000), p. 44.
- 51.
Dudgeon and Inhorn (2004).
- 52.
Ibid.
- 53.
Ibid 1379.
- 54.
Ibid 1380.
- 55.
Ibid 1379., citing Correa and Reichmann (1994) and Petchesky (2000).
- 56.
Dudgeon and Inhorn (2004), citing Bandarage (1997) and Dixon-Mueller (1993a).
- 57.
Ibid 1379., citing Cates and Stone (1992), Dixon-Mueller (1993b), Mbizvo (1996) and Parker et al. (2000).
- 58.
Ibid., citing Cliquet and Thienpont (1995).
- 59.
Ibid 1380.
- 60.
Inhorn (2007), p. 2.
- 61.
Inhorn (2013).
- 62.
Binsaleh and Lo (2007), p. 277. Varicocelectomy surgery is a male genital surgery that is the most commonly performed surgical procedure to treat male infertility. One of the causes of male infertility is thought to be abnormalities of the plexus of veins, draining blood from the testicles and causing an abnormal enlargement in the scrotum. Varicocelectomy surgery corrects this occurrence.
- 63.
Inhorn (2007), p. 1.
- 64.
Ibid 3.
- 65.
Ibid 4.
- 66.
Ibid 5.
- 67.
Inhorn (2013).
- 68.
Ibid 50.
- 69.
Kamel (2013), p. 156.
- 70.
American Society for Reproductive Medicine (2015), p. 4.
- 71.
Ibid 14.
- 72.
Ibid 15.
- 73.
For example, the practice of “reproductive tourism” vis-à-vis commercial surrogacy in Thailand has evolved from the more traditionally ‘altruistic’ form of surrogacy in the past, to a commercialized ‘business’ venture targeted at foreign visitors to Thailand. Commercial surrogacy for foreign nationals has since 2016 been banned in Thailand. India, like Thailand, has also been a ‘reproductive tourist’s’ destination for surrogacy, and in a landmark Supreme Court decision in 2016, has now put into place a more formalized and legal framework for the regulation of surrogacy in the country. These are but two instances in Asia that are a reinforcement that the fertility marketplace continues to experience a boom on a global level.
- 74.
These religious concerns are focused on the Islamic view of assisted reproduction in cases of fertility. As will be demonstrated later, the Islamic view of assisted reproduction is firmly entrenched in how the family unit is created, with a firm grounding on the sanctity of the relationship between husband and wife. In this sense, third party assisted reproduction never has a place in the Islamic way of family life.
- 75.
Inhorn (2009).
- 76.
Hughes (2010), p. 15.
- 77.
Riggan (31 December 2009). This study, although covering “industrially advanced countries”, benchmarked against their respective wealth accumulation in the International Monetary Fund, nevertheless provides a semi-comprehensive and informational list of countries that have enacted laws relating to the ARTs industry.
- 78.
Inhorn and Birenbaum-Carmeli (2008), p. 177.
- 79.
Ibid 180. The authors quote the work of Bharadwaj (2006), Kanaaneh (2002), Paxson (2006), Raspberry (2009), Roberts (2008) and Tremayne (2006) in making this statement.
- 80.
Foucault (1963).
- 81.
Inhorn and Birenbaum-Carmeli (2008), p. 180.
- 82.
Botkin (1998), p. 17.
- 83.
Brezina and Zhao (2012), p. 3.
- 84.
Hsu et al. (2014).
- 85.
Turriziani (2014), p. 595.
- 86.
Callahan (2009), p. 79.
- 87.
There are indications that the quality of a woman’s eggs are dependent on genetics, but the possible responses in IVF allow for an optimum environment to harvest the eggs; these include external factors such as diet, lifestyle, and the like. The same may be true of the quality of a man’s sperm. In any event, the eventual quality and viability of the resulting embryo is a combination of these factors.
- 88.
Winslow and Kodner (2004), p. 186.
- 89.
Ly et al. (2011), p. 834.
- 90.
A cell in a typical human person contains pairs of chromosomes, usually 23 pairs (46 chromosomes in total). There are typically two types of numerical chromosomal abnormalities that may occur in a human cell: first, monosomy, where a chromosome is missing from a pair; and trisomy, where an individual has more than a pair of chromosomes. The phenomenon of either missing or having an extra chromosome is called aneuploidy.
- 91.
Brezina et al. (2013), p. 37.
- 92.
Ly et al. (2011), p. 835.
- 93.
Gozzetti and Le Beau (2000), p. 320.
- 94.
Gleicher and Orvieto (2017), p. 21.
- 95.
Munné et al. (1994), p. 373.
- 96.
Gleicher et al. (2016), p. 54.
- 97.
Gleicher et al. (2014), p. 22.
- 98.
Gleicher and Orvieto (2017), p. 3.
- 99.
Brezina et al. (2013), p. 38.
- 100.
Chial (2008), p. 192.
- 101.
This is contrasted to PGS, which identifies chromosomal aneuploidy, and does not target the identification of specific genetic mutations or disorders.
- 102.
This is an important component in the later examination of PGD laws in the various jurisdictions, as the legal definition of what constitutes an embryo is often at the heart of whether PGD is legally permitted.
- 103.
Reprogenetics refers to the “creation, use, manipulation or storage of gametes or embryos,” as defined in a report by the Hastings Center. But the potentiality of reprogenetics is drawn specifically to potential human enhancement at the pre-implantation embryo stage using germ-line choice technology such as CRISPR.
- 104.
Botkin (1998).
- 105.
Robertson (2003), p. 465. HLA is a protein or a genetic marker that is present in most cells of the human body. In HLA type-matching procedures, a potential donor’s HLA is examined to determine if it could be matched to the HLA of a patient (suffering from a HLA-associated disease) for the purpose of a bone marrow or code blood transplant. Some known examples of HLA-associated diseases are often linked to autoimmune conditions such as lupus, multiple sclerosis and Grave’s Disease, amongst others.
- 106.
Ibid 467.
- 107.
Ibid 468–469.
- 108.
Natipodhi (2014).
- 109.
Hudson (2006), p. 1638.
- 110.
‘Roe v. Wade, 410 U.S. 113 (1973)’ (Justia Law) https://supreme.justia.com/cases/federal/us/410/113/. Accessed 2 May 2018.
- 111.
Botkin (1998).
- 112.
Sholley (1951). Article I Section 8 of the US Constitution lays out the powers of Congress in terms of the legislative overview is concerned. However, the jurisdiction of the individual states are more specifically recognised and laid out in Article IV.
- 113.
Bayefsky and Jennings (2015), p. 11.
- 114.
Ibid 12.
- 115.
Bayefsky (2015), p. 7.
- 116.
Bayefsky (2016), p. 43.
- 117.
Ethics Committee, American Society for Reproductive Medicine (2015), p. 1418.
- 118.
Ethics Committee, American Society for Reproductive Medicine (2013), p. 54.
- 119.
Bayefsky (2016), p. 43.
- 120.
American Congress of Obstetricians and Gynecologists, Committee on Ethics (2007), pp. 475–478.
- 121.
Gregg (2016), p. 10.
- 122.
Bayefsky (2016), p. 43.
- 123.
Ibid 44. The issue relating to “embryo politics”, I contend, is one of the elements that relates to the politicization of reproduction within the US constitutional environment and how it may fit within the framework of interpreting fundamental rights and liberties. In Sect. 2.3 of this chapter, I delve into this issue more extensively.
- 124.
Ibid. In addition to this, the recent contestation to the Affordable Care Act in the United States has further indicated further erosion in insurance coverage in the country. On the basis that a basic healthcare system appears to be declining in the country, the rung of priority that puts reproductive health and access to fertility treatments on the national level is very low.
- 125.
Thompson (2016), p. 128.
- 126.
Crockin (2005), p. 693.
- 127.
Ibid 694.
- 128.
Ibid.
- 129.
Ibid 693.
- 130.
Department of Health, ‘Human Fertilisation and Embryology Act 1990 - an Illustrative Text’ (9 November 2007) http://webarchive.nationalarchives.gov.uk/content/20130107105354/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsLegislation/DH_080205.
- 131.
Human Fertilisation and Embryology Act 2008 (Chapter 22) 120.
- 132.
Strategy and Information Directorate Human Fertilisation and Embryology Authority, ‘The HFE Act (and Other Legislation) - HFEA’ http://hfeaarchive.uksouth.cloudapp.azure.com/www.hfea.gov.uk/134.html.
- 133.
‘The Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015’ https://www.legislation.gov.uk/ukdsi/2015/9780111125816/contents.
- 134.
The consultation for the revised regulations to the HFEA Act 2008 was to reflect changes that may enable a single person to apply for a parental order.
- 135.
‘House of Lords - Quintavalle v Human Fertilisation and Embryology Authority’ https://publications.parliament.uk/pa/ld200405/ldjudgmt/jd050428/quint-1.htm.
- 136.
Human Fertilisation and Embryology Act 1990 (Chapter 37) 48.
- 137.
Human Fertilisation and Embryology Act. p. 8.
- 138.
‘Illustrative Text: Human Embryology and Fertilisation Authority Act 1990. As Amended: An Illustrative Text’ 18.
- 139.
Ibid 75.
- 140.
Ibid.
- 141.
Ibid.
- 142.
Ibid 76–77.
- 143.
Ibid.
- 144.
‘Illustrative Text: Human Embryology and Fertilisation Authority Act 1990. As Amended: An Illustrative Text’ (n 138) 77.
- 145.
Ibid 76.
- 146.
Ibid.
- 147.
Ibid 77.
- 148.
Ibid 18.
- 149.
Ibid 77.
- 150.
Ibid 76.
- 151.
National Health and Medical Research Council (2017).
- 152.
Prohibition of Human Cloning for Reproduction Act 2002 2016 (No 144, 2002).
- 153.
Research Involving Human Embryos Act 2002 2016 (No 145, 2002).
- 154.
Feikert (30 April 2012).
- 155.
Cordelia (2004), p. 121.
- 156.
US National Library of Medicine, Genetics Home Reference, ‘What Are the Different Ways in Which a Genetic Condition Can Be Inherited?’ (Genetics Home Reference) https://ghr.nlm.nih.gov/primer/inheritance/inheritancepatterns.
- 157.
National Health and Medical Research Council (2017), p. 69.
- 158.
Ibid 70–71.
- 159.
Please see Section 8.14 of the NHMRC Ethical Guidelines, which emphatically states that sex selection for non-medical purposes is not supported by the NHMRC and AHEC.
- 160.
Smith (3 August 2014).
- 161.
Liu (2007), p. 65.
- 162.
Ibid.
- 163.
Boyle and Savulescu (2001), p. 1241.
- 164.
Cordelia (2004), p. 123.
- 165.
Boyle and Savulescu (2001), pp. 1241–1242.
- 166.
Smith (2013), p. 154.
- 167.
Cordelia (2004), p. 142.
- 168.
TMC Fertility Centre (21 February 2013).
- 169.
TMC Fertility Centre (23 March 2015).
- 170.
Whittaker and Speier (2010), p. 363.
- 171.
Deonandan (2015), p. 111.
- 172.
Stasi (2015), p. 17.
- 173.
Yuen (29 November 2015).
- 174.
Human Tissues Act 1974 (Act 130) 1974 (Act 130) 9.
- 175.
Parliament of Malaysia, ‘Official Portal of The Parliament of Malaysia’ http://www.parlimen.gov.my/index.php?lang=en.
- 176.
Malaysian Medical Council (14 November 2016).
- 177.
Ministry of Health Malaysia, Medical Development Division (October 2012).
- 178.
Malaysian Medical Council (2006), p. 14.
- 179.
Ibid. In this chapter, I also briefly outline the implications of regarding ARTs from the perspective of Shari’a law in Malaysia.
- 180.
Ibid 15.
- 181.
Ibid.
- 182.
Ibid.
- 183.
Ibid 17.
- 184.
Examples where civil law would not apply to Muslims would be where such laws are remit to the purview of Syariah law. Syariah law is the law that governs all Muslims in Malaysia in relation to specific matters, whereas civil law applies to all other citizens of the country. However, there are many aspects of Malaysian civil law that likewise apply to Muslims too where there has been promulgation made at the federal law (for example, various branches of private law, dimensions in public law and constitutional law, laws relating to criminal offences, etc.). Syariah law is likely to have jurisdiction and governance over Muslims in matters relating to family, children, religion and religious practices, marriage, divorce and such issues.
- 185.
Ahmad et al. (2016), p. 362.
- 186.
Ibid.
- 187.
Ahmad et al. (2016).
- 188.
Rhode (15 June 2012).
- 189.
Belluck (4 August 2017).
- 190.
Natipodhi (2014).
- 191.
I had visited the capital city of Bangkok in 2016 and 2017, and trawled numerous fertility clinics in the city, both in person and on their websites. In most of the clinics, sex selection in PGD was the service that was most commonly highlighted to potential clients.
- 192.
Natipodhi (2014).
- 193.
Harryono et al. (2006).
- 194.
Stasi (2015).
- 195.
Thai Law Forum, ‘Thailand Medical Council Regulations on Surrogacy and IVF | Thailand Law Forum’ http://www.thailawforum.com/medical-surrogacy-regulations/ accessed 11 April 2017. Please see Section 1 of Guidelines No. 21/2544 of 2001.
- 196.
NaRanong and NaRanong (2011), p. 336.
- 197.
Pardes (14 January 2016).
- 198.
Farrell (19 January 2015).
- 199.
Australian Associated Press (20 February 2015).
- 200.
Protection for Children Born Through Assisted Reproductive Technologies Act 2015 (167/2553).
- 201.
It is highlighted in this chapter that the dissection of the provisions of the act is based on an unofficial translation of the Thai text for the act. trans. Messrs. Jurs & Consult.
- 202.
Buchitchon (2016), p. 1610.
- 203.
Caamano (2016), p. 598.
- 204.
The Nation (28 November 2014).
- 205.
Juslaws & Consult, ‘Unofficial Translation- Act Providing for the Protection for Children Born Through Assisted Reproductive Technologies’ 4. Please see Section 7(8) of the Act accordingly, where the powers of the Committee for the Protection of Children Born Through Assisted Reproductive Technologies include the presentation of “suggestions regarding the notifications issued by the Medical Council concerning the providing of ART services” under the Act.
- 206.
Ibid.
- 207.
Ibid 7.
- 208.
Ibid 2.
- 209.
Bayefsky (2015), p. 7.
- 210.
Ibid.
- 211.
‘Roe v. Wade, 410 U.S. 113 (1973)’ (n 110).
- 212.
Taranto (22 January 2018).
- 213.
‘Buck v. Bell, 274 U.S. 200 (1927)’ (Justia Law) https://supreme.justia.com/cases/federal/us/274/200/case.html.
- 214.
‘Skinner v. Oklahoma Ex Rel. Williamson, 316 U.S. 535 (1942)’ (Justia Law) https://supreme.justia.com/cases/federal/us/316/535/case.html.
- 215.
‘Roe v. Wade, 410 U.S. 113 (1973)’ (n 110).
- 216.
‘Griswold v. Connecticut, 381 U.S. 479 (1965)’ (Justia Law) https://supreme.justia.com/cases/federal/us/381/479/case.html.
- 217.
‘Planned Parenthood of Southeastern Pa. v. Casey, 505 U.S. 833 (1992)’ (Justia Law) https://supreme.justia.com/cases/federal/us/505/833/.
- 218.
Sholley (1951).
- 219.
Heydarian (11 May 2018).
- 220.
The Star, ‘Pakatan Harapan 100 Days’ https://www.thestar.com.my/ph100/.
- 221.
Hunt (15 November 2018).
- 222.
Bayefsky and Jennings (2015).
- 223.
Sandberg (2016), p. 137.
- 224.
Zakhiri et al. (2016).
- 225.
Rhode (2012).
- 226.
Zakhiri et al. (2016), p. 7.
- 227.
Ibid.
- 228.
Muslims make up the majority of the Malaysian population, amounting to approximately 70% of the total population.
- 229.
Heydarian (2018).
- 230.
United Nations, Department of Economic and Social Affairs Development Policy and Analysis Division, Department of Economic and Social Affairs, ‘Country Classification- Data Sources, Country Classification and Aggregation Methodology’ (United Nations Secretariat) http://www.un.org/en/development/desa/policy/wesp/wesp_current/2014wesp_country_classification.pdf.
- 231.
Natipodhi (2014), p. 8.
- 232.
Botkin (1998).
- 233.
Robertson (2003).
- 234.
Ibid 466.
- 235.
Ibid.
- 236.
Botkin (1998), p. 21.
- 237.
Ibid 23–24.
- 238.
Cohen (2014), p. 652.
- 239.
Supiot (2007).
- 240.
Cohen (2014), p. 653.
- 241.
Metzl (10 October 2014).
- 242.
Ibid.
- 243.
Ibid.
- 244.
Kass (1997), p. 17.
- 245.
Sheehan (2009), p. 177.
- 246.
Kass (1997), p. 22.
- 247.
Sheehan (2009), p. 179.
- 248.
Ibid.
- 249.
Ibid.
- 250.
Sándor (2015).
- 251.
Ibid 355.
- 252.
Ibid 356.
- 253.
Ibid 360.
- 254.
Ibid 361.
- 255.
Cohen (2014).
- 256.
Ibid 652.
- 257.
Ibid 646.
- 258.
Cohen (2014), p. 648.
- 259.
Ibid.
- 260.
Ibid 650.
- 261.
Ibid 652.
- 262.
Ibid 653–654.
- 263.
Ibid 654.
- 264.
Ibid 658.
- 265.
The pertinent aspects of legal regulation, or any other form of regulatory form, will be discussed in Chap. 4.
- 266.
Chatterjee (2004), p. 698.
- 267.
Ibid 970.
- 268.
Sandel (2004), p. 51.
- 269.
Cohen (2014), p. 658.
- 270.
Surah An-Nisaa 4: 117-120 of the Quran, which has been interpreted to religiously prohibit any attempt to change the creation of God (Allah).
- 271.
Sandel (2004), p. 58.
- 272.
Ibid 61.
- 273.
Sandel (2004).
- 274.
Ibid 61. “Playing naked” is a term used to describe situations, for example, where athletes, especially professional ones, take to the playing field in a particular sport, free of amphetamines, steroids, or other stimulants that are capable of enhancing their performance. The concerns, therefore, about “playing naked” become an obstinate remedy to excel, to fully explore one’s talents; and perhaps even lead to the second type of coercion mentioned by Chatterjee.
- 275.
Jensen (2012), p. 31.
- 276.
Silver (2000), p. 375.
- 277.
Lau (2018).
- 278.
Gavaghan (2007), p. 168.
- 279.
Agar (1998), p. 137.
- 280.
Jaede (2017), p. 18.
- 281.
Andrews, and Elster (2000), p. 45.
- 282.
Ibid 40.
- 283.
Foucault (1977).
- 284.
Andrews and Elster (2000), p. 48.
- 285.
Ibid 45.
- 286.
Ettorre (2000), p. 403.
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Lau, P.L. (2019). The Legal and Ethical Debates in Embryo Selection. In: Comparative Legal Frameworks for Pre-Implantation Embryonic Genetic Interventions. Springer, Cham. https://doi.org/10.1007/978-3-030-22308-3_3
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