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- 1.
Heinemann and Honnefelder (2003), p. 530.
- 2.
A genotype is “the genetic contribution to the phenotype” according to the National Human Genome Research Institute. See also (n 3).
- 3.
‘National Human Genome Research Institute (NHGRI)’ (National Human Genome Research Institute (NHGRI)) https://www.genome.gov/. The National Human Genome Research Institute defines a phenotype as “an individual’s observable traits, such as height, eye color, and blood type…..Some traits are largely determined by the genotype, while other traits are largely determined by environmental factors.”
- 4.
Lewis (2017).
- 5.
Shanks (2005).
- 6.
Kendler and Greenspan (2006), pp. 1683–1694.
- 7.
Resnik and Vorhaus (2006).
- 8.
Stock (2003).
- 9.
The term “ART” is commonly used to refer to a host of techniques used to assist infertile couples achieve pregnancy through anon-coital methods of contraception. The techniques in ART involve the manipulation of gametes and was introduced together with in-vitro fertilization. Other variations of ART were later developed, including, inter alia, intracystoplasmic sperm injection (ICSI), gamete intra-fallopian transfer (GIFT), zygote intra-fallopian transfer (ZIFf). It must be noted that ARTs do not provide for a cure for infertility, and do not necessarily guarantee success for a couple to have a baby.
- 10.
The World Health Organization (WHO) estimates that 1 in every 4 couples in developing countries are found to be affected with infertility problems, although it cannot estimate with accuracy, a global infertility rate, due to different reproductive health denominators.
- 11.
Nayal (2013).
- 12.
Id. The United States National Library of Medicine explains what an X-linked disorder is. It is essentially a recessive, sex-linked genetic disorder attributable to the X chromosome from a male or female parent. See https://www.nlm.nih.gov/medlineplus/ency/imagepages/19097.htm. Examples of x-linked disorders include haemophilia, muscular dystrophy, colour blindness, Hunter’s disease, and Lesch-Nyhan Syndrome, amongst many others.
- 13.
The Farlex Medical Dictionary for the Health Professions and Nursing, 2012, explains an oocyte: it is the female sex cell, which, “when fertilized by a sperm……. is capable of developing into a new individual of the same species; during maturation, the oocyte, like the sperm, undergoes a halving of its chromosomal complement so that at its union with the male gamete, the species number of chromosomes (46 in humans) is maintained…”.
- 14.
As defined by the National Human Genome Research Institute, germ line cells are “the sex cells (eggs and sperm) that are used by sexually reproducing organisms to pass on genes from generation to generation. Egg and sperm cells are called germ cells, in contrast to the other cells of the body that are called somatic cells.”
- 15.
The United States National Library of Medicine describes IVF as the process by which a woman’s egg is fertilized by a man’s sperm outside the body, always in a laboratory setting.
- 16.
Also known as FISH. The National Human Genome Research Institute defines this as “a laboratory technique for detecting and locating a specific DNA sequence on a chromosome. The technique relies on exposing chromosomes to a small DNA sequence called a probe that has a fluorescent molecule attached to it. The probe sequence binds to its corresponding sequence on the chromosome”.
- 17.
Also known as PCR. The National Human Genome Research Institute explains that a polymerase chain reaction is “a fast and inexpensive technique used to ‘amplify’ or copy small segments of DNA. Because significant amounts of a sample of DNA are necessary for molecular and genetic analyses, studies of isolated pieces of DNA are nearly impossible without PCR amplification.”
- 18.
Amniocentesis (also referred to as amniotic fluid test or AFT) is a medical procedure used in prenatal diagnosis of chromosomal abnormalities and fetal infections, and also used for sex determination in which a small amount of amniotic fluid, which contains fetal tissues, is sampled from the amniotic sac surrounding a developing fetus, and the fetal DNA is examined for genetic abnormalities.
- 19.
Also known as CVS. This is another form of prenatal diagnosis to determine chromosomal or genetic disorders in the fetus. It entails sampling of the chorionic villus (placental tissue) and testing it for chromosomal abnormalities, usually with FISH or PCR.
- 20.
Botkin (1998), pp. 17, 20.
- 21.
Deeney (2013), p. 333.
- 22.
Scott (2006), pp. 153, 161.
- 23.
Fox (2010), p. 170.
- 24.
Botkin (1998), p. 25.
- 25.
The germ-line is the reproductive cell lines in organisms. This means that any changes to DNA made to the germ line would be carried forward to future generations. In consequence, modification of the germ-line has invoked strong divided opinions, and have been prohibited in some jurisdictions.
- 26.
Botkin (1998), p. 25.
- 27.
Inhorn (2007b).
- 28.
Hsu et al. (2014), p. 1262. Gene editing tools are, by scientific means, not new inventions. CRISPR is the acronym for Clustered Regularly Interspaced Palindromic Repeats, which is essentially the repetition of DNA in bacteria. However, CRISPR is novel because it is fast and precise. The use of the Cas9 RNA-guided enzyme as a pair of molecular scissors to ‘cut’ strands of DNA, which carry certain genetic information, allows certain genetic information in the DNA to be removed; and even for new genetic information to be inserted.
- 29.
BBC (2019).
- 30.
Silver (1997).
- 31.
By ‘regulation’, this refers to differing legislation between states, for example, in the United States and Australia. Other jurisdictions may operate on the basis of ‘soft law’ (guidelines issued by a medical council or other relevant professional body) or secular pronouncements by religious councils, which raises questions as to whether these have the force of law.
- 32.
Risks of embryo destruction, misdiagnosis, contamination of genetic analysis tests and such still occur in PGD, as evidenced by a landmark lawsuit in Australia resulting from PGD misdiagnosis.
- 33.
Morrison et al. (2016), http://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-016-0157-6.
- 34.
- 35.
Beauchamp and Childress (2011).
- 36.
Glenn (2003), pp. 27–28.
- 37.
Nuffield Council on Bioethics (2018).
- 38.
Fox (2010).
- 39.
Yong (2017).
- 40.
Solomon (2010), p. 591.
- 41.
These services which may include, for example, the practice of sex selection in PGD services, which is banned in most Western countries. In addition, until very recently, countries like India and Thailand finally enacted laws against commercial surrogacy, for foreign citizens; but this may still not adequately address the other pertinent surrogacy provisions that apply regardless of citizenship, including provisions that relate to the welfare of the surrogate child, parenthood provisions, and the like. In Malaysia, the discourse on how to regulate commercial surrogacy has only just begun this year (June 2018).
- 42.
Whittaker and Speier (2010), p. 363.
- 43.
Morrison (2017).
- 44.
Nalbandian (2011), pp. 9, 142.
- 45.
In Chap. 6, I introduce the ‘entry points’ of regulation. These would refer to points or concerns, which would prompt a particular state to regulate on technologies, depending on the priority of these concerns in the country.
- 46.
It must be pointed out that although some reference is made to the principles that underlie “Asian values”, I do not make the claim that Asian values must take precedence when we consider the ‘universality’ of human rights issues. Instead, I pose that these Asian values may, in some aspects, be very useful in understanding more deeply the cultural, historical and political landscape of some non-Western jurisdictions, which may lead to a clearer picture why there may be reluctance or inability to implement fully some notions of human rights which may mean a different thing in those non-Western jurisdictions. In addition, the interpretations of notions that are accepted as ‘universal’, such as human dignity, in international legislative texts and conventions, are often present through different practical elements in an Asian context.
- 47.
Botkin (1998), p. 20.
- 48.
Ibid, p. 25.
- 49.
Ibid.
- 50.
Ibid.
- 51.
Commentators on science and technology blog boards indicate that there are at least 20 CRISPR reports being published every week since January 2015 because the technology has surpassed its expectations and made great inroads with break neck speed.
- 52.
Miko (2008), p. 134.
- 53.
‘Roe v. Wade, 410 U.S. 113 (1973)’ (Justia Law) https://supreme.justia.com/cases/federal/us/410/113/.
- 54.
Ibid, p. 154.
- 55.
Sholley (1951).
- 56.
Prepared by the NHS Commissioning Board Clinical Reference Group for Genetics, April 2013, Reference No. NHSCB/E01/P/a dated April 2013.
- 57.
The draft regulations for mitochondrial donation have been made a UK statutory instrument. See the Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015 No. 572.
- 58.
Turriziani (2014), p. 595.
- 59.
Polya (2008).
- 60.
Please see D’Arcy v Myriad Genetics Inc. [2015] HCA 35.
- 61.
- 62.
Stasi (2015).
- 63.
Guideline 010/2006 to be read in conjunction with the Code of Professional Conduct and Guidelines applicable to medical practitioners defined under the Medical Act 1971.
- 64.
Reaney (2004).
- 65.
The first so-called designer baby in Malaysia was born in December 2004 in a private medical centre in Kuala Lumpur.
- 66.
Botkin (1998), p. 20.
- 67.
Ibid, p. 21.
- 68.
Ibid, p. 25.
- 69.
Ibid.
- 70.
Robertson (2003), pp. 213, 214.
- 71.
Ibid, p. 215.
- 72.
Ibid, p. 216.
- 73.
Sándor (2015), p. 357.
- 74.
Brock (2009).
- 75.
Deeney (2013).
- 76.
Basas (2014), p. 1035.
- 77.
Gross (2003), p. R541.
- 78.
Savulescu (2007a).
- 79.
Lincoln (2018).
- 80.
Fox (2010).
- 81.
Scientific reports regarding the creation of designer babies in the mold of a supermarket-type selection of traits and characteristics have indicated that although this is theoretically possible, the multitude of genes within the human organism that interact with each other and influences certain traits or characteristics is not so easily isolated.
- 82.
Brookings (2001).
- 83.
Sandel (2004), p. 51.
- 84.
Brookings (2001).
- 85.
Kass (1997), p. 17.
- 86.
Ibid, p. 24.
- 87.
Fukuyama (2003), p. 7.
- 88.
Cook (2002).
- 89.
Harris (2010).
- 90.
Ibid, p. 8.
- 91.
Savulescu (2009), p. 417.
- 92.
Savulescu (2001), p. 413.
- 93.
Savulescu (2007b), p. 284.
- 94.
Cohen (2014), pp. 645, 686.
- 95.
Ibid, pp. 646–648.
- 96.
Sándor (2012), pp. 1142–1161.
- 97.
Ibid, p. 1160.
- 98.
Sunstein (1993).
- 99.
Annas et al. (2002), pp. 151–178.
- 100.
Stankovic (2005), p. 3.
- 101.
Sandel (2004).
- 102.
Michael Sandel believed in the purity of human talent which, in his opinion, does not need genetic enhancements.
- 103.
Essentially, these areas of medical enhancements involving human subjects, may fall within the broad heading of eugenics, which according to Frederick Osborn, involves “social philosophy”.
- 104.
Amendment XIV of the Constitution which states: “No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States nor shall any state deprive any person of life, liberty, or property, without due process of law; nor dent to any person within its jurisdiction the equal protection of the laws.”
- 105.
In US constitutional jurisprudence, there is a host of Supreme Court decisions emphasizing the unwavering narrow tailoring of a matter that is compelling to state interest. See Stone et al. (2013).
- 106.
The Human Fertilisation and Embryology Act 1990 administered by the Human Fertilisation and Embryology Authority.
- 107.
Francioni (2007).
- 108.
Upon the recommendation of the Department of Health, the Human Fertilisation and Embryology Act was amended in 2008 to permit the creation of saviour siblings “to enable the identification of a tissue match for an older sibling suffering from a life-threating illness, where umbilical cord blood is to be used in treatment”.
- 109.
Doherty and Sutton (1997).
- 110.
UK Medicines for Human Use (Clinical Trials) Regulations 2004.
- 111.
Polya (2008).
- 112.
These include: The Assisted Reproductive Treatment Act 2008 in Victoria; The Western Australian Human Reproductive Technology Act 1991 in Western Australia; The Assisted Reproductive Treatment Act 1988 in South Australia; and The Assisted Reproductive Technology Act 2007 in New South Wales.
- 113.
See “The Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research”, issued by the National Health and Medical Research Council of the Australian Government in June 2007.
- 114.
Sands (2013), p. 24.
- 115.
Szoke et al. (2006), p. 187.
- 116.
Polya (2008).
- 117.
A saviour sibling is “created” by selecting an embryo that, when born, will be able to provide stem cells or healthy tissue to an older sibling suffering from a serious medical condition, that may be treated by the donation from the saviour sibling.
- 118.
Smiley (2005).
- 119.
This refers to communities whose regulation of daily public and private life is based on a legal system governed by Islam.
- 120.
Inhorn (2007a).
- 121.
Shari’a law is a body of religious instructions that have a quasi-‘legal’ framework, regulating various aspects of daily private and public life of observant Muslims living in a system based on Islam. The sources of Islamic Shari’a law include the Quran, Sunna (traditions) and Hadith (statements) of Prophet Mohammed, as well as opinions of Islamic scholars and fatwas issued by mufti or an Islamic council in a particular state or nation.
- 122.
The Islamic Supreme Council of America defines a fatwa as “an Islamic legal pronouncement issued by an expert in religious law (mufti), pertaining to a specific issue, usually at the request of an individual or judge to resolve an issue where Islamic jurisprudence (fiqh) is unclear.”
- 123.
This is also largely dependent on the treatment of religious morality depending on the sects of Islam, comprising Sunni Islam and Shi’ite Islam.
- 124.
In Islam, it is believed that the holy Quran encourages marriage, the creation of a family and reproduction. It is not surprising, therefore, that due to increasing rates of infertility among Muslim couples, other means of enjoying reproductive health are sought by these childless couples. Since the Quran also expressly prohibits legal adoption and the donation of sperm or ovum by a third party to a childless Muslim couple, traditional Islamic views on reproductive technologies that would encourage conception, pregnancy and children, began to change.
- 125.
- 126.
- 127.
Pronto (2008), pp. 601, 602.
References
Annas G, Andrews L, Isasi R (2002) Protecting the endangered human: toward an international treaty prohibiting cloning and inheritable alterations. Am J Law Med 28:151–178
Basas CG (2014) What’s bad about wellness? What the disability rights perspective offers about the limitations of wellness. J Health Polit Policy Law 39:1035
BBC News (21 January 2019) China Turns on “Gene Editing” Scientist. https://www.bbc.com/news/world-asia-46943593
Beauchamp T, Childress J (2011) Principles of biomedical ethics. Oxford University Press
Botkin J (1998) Ethical issues and practical problems in preimplantation genetic diagnosis. J Law Med Ethics 26:17
Brock DW (2009) Is selection of children wrong? In: Human enhancement. Oxford University Press
Brookings (30 November 2001) Event summary: a debate on the ethics of genetic engineering. Brookings. https://www.brookings.edu/opinions/event-summary-a-debate-on-the-ethics-of-genetic-engineering/
Center for Reproductive Rights (20 February 2014) Malaysia. Center for Reproductive Rights. https://www.reproductiverights.org/our-regions/asia/malaysia
Chatham House (2015) The elusive consensus in international affairs. Chatham House. https://www.chathamhouse.org//node/17691
Cohen IG (2014) What (if anything) is wrong with human enhancement? What (if anything) is right with it? Tulsa Law Rev 49:645
Cook A (17 July 2002) Our post-human future: consequences of the biotechnology revolution by Francis Fukuyama. PopMatters. https://www.popmatters.com/our-posthuman-future-2496243108.html
Deeney MS (2013) Bioethical considerations of preimplantation genetic diagnosis for sex selection. Wash Univ Jurisprud Rev 5:333
Doherty P, Sutton A (1997) Man-made man: ethical and legal issues in Genetics. Four Courts Press
Everton K (2014) Walking the edge with controversial use of Pre-Implantation Genetic Diagnosis (PGD): opinions and attitudes of genetic counsellors. University of South Carolina Scholar Commons
Fox D (2010) Retracing liberalism and remaking nature: designer children, research embryos, and featherless chickens. Bioethics 24:170
Francioni F (2007) Biotechnologies and international human rights. Hart Publishing
Fukuyama F (2003) Our posthuman future: consequences of the biotechnology revolution. Farrar, Straus and Giroux
Glenn LM (2003) Crossing species boundaries. Am J Bioethics 3:27–28
Gross M (2003) Dawn of the saviour sibling. Curr Biol 13:R541
Harris J (2010) Enhancing evolution: the ethical case for making better people. Princeton University Press
Heinemann T, Honnefelder L (2003) Principles of ethical decision making regarding embryonic stem cell research in Germany. Bioethics 16:530
Hsu P, Lander E, Zhang F (2014) Development and applications of CRISPR-Cas9 for genome engineering. Cell 157:1262
Inhorn M (2007a) Reproductive disruptions and assisted reproductive technologies in the Muslim world. In: Reproductive disruptions: gender, technology and biopolitics in the new millennium
Inhorn M (2007b) Reproductive disruptions: gender, technology and biopolitics in the new millennium, vol 11. Berghan Books
Kass L (1997) The wisdom of repugnance. New Republic:17
Kendler K, Greenspan R (2006) The nature of genetic influences on behaviour: lessons from simpler organisms. Am J Psychiatry 163:1683–1694
Lewis R (2017) Human genetics: concepts and applications, 12th edn. McGraw-Hill Publishing Company
Lincoln R (16 May 2018) CRISPR pioneer Jennifer Doudna explains gene-editing technology in Prather lectures. Harvard Gazette. https://news.harvard.edu/gazette/story/2018/05/crispr-pioneer-jennifer-doudna-explains-gene-editing-technology-in-prather-lectures/
Miko I (2008) Gregor Mendel and the principles of inheritance. Nat Educ:134
Morrison M (2017) “A good collaboration is based on unique contributions from each side”: assessing the dynamics of collaboration in stem cell science. Life Sci Soc Policy 13
Morrison M, Dickenson D, Lee SS-J (2016) Introduction to the article collection “Translation in healthcare: ethical, legal, and social implications”. BMC Med Ethics 17
Nalbandian E (2011) Sociological jurisprudence: Roscoe Pound’s discussion on legal interests and jural postulates. Mizan Law Rev 5:9
National Human Genome Research Institute. (National Human Genome Research Institute (NHGRI)) https://www.genome.gov/
Nayal MB (2013) Preimplantation genetic diagnosis. http://emedicine.medscape.com/article/273415-overview
Nuffield Council on Bioethics (2018) Genome editing and human reproduction: social and ethical Issues. Nuffield Council on Bioethics
Polya R (2008) Chronology of Genetic Engineering Regulation in Australia: 1953–2008. https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/BN/0809/ChronGeneticEngineeringA
Pronto AN (2008) Some thoughts on the making of international law. Eur J Int Law 19:601
Reaney P (25 September 2004) In search of baby perfect. Center for Genetics and Society. http://www.geneticsandsociety.org/article.php?id=1469
Resnik DB, Vorhaus DB (2006) Genetic modification and genetic determinism. Philos Ethics Humanit Med 1
Robertson JA (2003) Extending preimplantation genetic diagnosis: medical and non-medical uses. J Med Ethics 29:213
Roe v. Wade, 410 U.S. 113 (1973) (Justia Law) https://supreme.justia.com/cases/federal/us/410/113/
Sandel M (2004) The case against perfection. Atl Mon 293:51
Sándor J (2012) Bioethics and basic rights: persons, humans and boundaries of life. In: Rosenfeld M, Sajos A (eds) The Oxford handbook of comparative constitutional law. Oxford University Press, pp 1142–1161
Sándor J (2015) The ethical and legal analysis of embryo preimplantation testing policies in Europe. In: Sills ES (ed) Screening the single euploid embryo. Springer International Publishing
Sands MT (2013) Saviour siblings: a relational approach to the welfare of the child in selective reproduction. Routledge
Savulescu J (2001) Procreative beneficence: why we should select the best children. Bioethics 15:413
Savulescu J (2007a) Genetic interventions and the ethics of enhancement of human beings. In: The Oxford handbook of bioethics. Oxford University Press
Savulescu J (2007b) In defence of procreative beneficence. J Med Ethics 33:284
Savulescu J (2009) Genetic interventions and the ethics of enhancement of human beings. Read Philos Technol:417
Scott R (2006) Choosing between possible lives: legal and ethical issues in preimplantation genetic diagnosis. Oxf J Leg Stud 26:153
Serour GI (2005) Religious perspectives of ethical issues in ART: Islamic perspectives of ethical issues in ART. Middle East Fertil Soc J 10:185–190
Shanks P (2005) Human genetic engineering: a guide for activists, skeptics, and the very perplexed. Nation Books
Sholley JB (1951) Constitution of the United States of America. In: Cases on constitutional law. Bobbs-Merrill
Silver L (1997) Remaking Eden: how genetic engineering and cloning will transform the American family. Avon Books Inc
Smiley S (2005) Genetic modification: study guide (exploring the issues). Independence Educational Publishers
Solomon JM (2010) New governance, preemptive self-regulation and the blurring of boundaries in regulatory theory and practice. Wis Law Rev:591
Stankovic B (2005) “It’s a Designer Baby!”: Opinions on regulation of preimplantation genetic diagnosis. UCLA J Law Technol:3
Stasi A (2015) Maternal surrogacy and reproductive tourism in Thailand: a call for legal enforcement. Ubonratchathani University 17
Stock G (2003) Redesigning humans: choosing our genes, changing our future. Mariner Books
Stone G et al (2013) (Chapter 7) Constitutional law, 7th edn. Wolters Kluwer
Sunstein C (1993) After the rights revolution, reconceiving the regulatory state. Harvard University Press
Szoke H, Neame L, Johnson L (2006) Old technologies and new challenges: assisted reproduction and its regulation. In: Freckelton I, Petersen K (eds) Disputes & dilemmas in health law. Federation Press
Turriziani J (2014) Designer babies: the need for regulation on the quest for perfection. http://scholarship.shu.edu/cgi/viewcontent.cgi?article=1595&context=student_scholarship. Law School Student Scholarship 595
Umeda S (6 April 2015) Thailand: new surrogacy law | global legal monitor. Library of Congress. http://www.loc.gov/law/foreign-news/article/thailand-new-surrogacy-law/
Whittaker A, Speier A (2010) “Cycling Overseas”: care, commodification, and stratification in cross-border reproductive travel. Med Anthropol 29:363
Yong E (2 August 2017) The designer baby era is not upon us. The Atlantic. https://www.theatlantic.com/science/archive/2017/08/us-scientists-edit-human-embryos-with-crisprand-thats-okay/535668/
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Lau, P.L. (2019). Introduction. In: Comparative Legal Frameworks for Pre-Implantation Embryonic Genetic Interventions. Springer, Cham. https://doi.org/10.1007/978-3-030-22308-3_1
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