Ethics and Reprogenetic Technologies GBI International Bioethics Summer

Ethics and Reprogenetic Technologies GBI International Bioethics Summer School 2019 Inmaculada de Melo-Martin, Ph. D Professor of Medical Ethics in Medicine Professor of Medical Ethics in Reproductive Medicine Professor of Healthcare Policy and Research 1

Overview • Reprogenetic Technologies – Assisted Reproductive Technologies (ARTs) – Genetic Technologies • Arguments for and against the use of Reprogenetics • Specific Ethical Issues 2

Reprogenetic Technologies 3

Reprogenetic Technologies 4

Reprogenetic Technologies • About 7 million babies have been born worldwide • Around 1. 5 million ART cycles are performed each year worldwide, with an estimated 350, 000 babies born. • Currently, in several European countries including Belgium, Denmark, and Norway, more than 4. 0% of all babies are born through IVF. • In the United States, approximately 1. 5% of all infants born now are conceived with the help of these technologies. European Society of Human Reproduction and Embryology 2013 -2015 CDC, Assisted Reproductive Technology National Summary Report. 2014 5

Reprogenetic Technologies • Europe leads the world in ART, initiating approximately 55% of all reported ART cycles. • France, Germany, Italy, Russia, Spain, and the UK are Europe's most active countries. • The most active countries in the world are Japan and the USA. European Society of Human Reproduction and Embryology 2013 -2015 CDC, Assisted Reproductive Technology National Summary Report. 2014 6

Reprogenetic Technologies • IVF • Cryopreservation of sperm, oocytes, and embryos • PGD • Virtual Babies • Somatic and Germline Modifications 7

IVF & ET • A process by which an oocyte is fertilized by prepared sperm outside the body –in vitro • The process involves: 8

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ICSI 10

Risks To Women • • Risks related to hormones Ovarian hyperstimulation syndrome Multiple births Women’s status 11

PGD 12

PGD • Comprehensive genetic testing techniques such as microarrays and whole genome sequencing, which can screen many chromosomes or genes simultaneously, are currently being evaluated for introduction in the clinic. • Such techniques can provide information on hundreds of mutations and variants related not only to disease risks but also to some non–health-related traits (Kumar et al. 2015). 13

PGD • Use of PGD for social sex selection is increasing 14

Risks • Risks of misdiagnosis • Damage to the biopsied embryos, which can result in developmental lag and increased rates of embryonic death before uterine implantation • Initial evidence regarding children’s health indicates that babies born after PGD show normal neurodevelopment, comparable to that of naturally conceived children (Liebaers et al. 2010). • Nonetheless, data concerning long-term health outcomes is nonexistent because PGD is a relatively new technology. 15

Virtual Babies 16

Genetic Engineering Technologies 17

Genetic Engineering Technologies • Somatic modifications • Germline modifications 18

Germline Modifications • Mitochondrial Transfer Technologies – Only a handful of children born through their application – Clinical trials currently under way in some countries such as the UK • CRISP-Cas 9 – Twin baby girls reportedly born in China 19

Ethical Issues 20

Ethical Issues • Ethical concerns about the use of reprogenetic technologies are very complex because they involve: – An activity that is essential to human and societal wellbeing – The use of powerful technologies – The practice of medicine – A variety of stakeholders with sometimes conflicting interests: • Prospective Parents • Sperm and Egg donors • Clinicians • Societies 21

Arguments for Reprogenetics • Reproductive Freedom – Right Not to Procreate: • Contraception • Abortion – Right to Procreate: • Force sterilization bans • Access to reprogenetics 22

Arguments for Reprogenetics • Parental Autonomy – Choices that influence a child’s initial endowment • Partner characteristics – Choices that influence a child’s social starting point in life. • When to reproduce – Choices about how to raise one’s child 23

Arguments for Reprogenetics To the extent that reproductive liberty and parental autonomy are thought to be basic rights, interference with reproductive decisions is seen as morally and legally legitimate only when such decisions clearly and seriously harm others 24

Some Problems • Reproductive freedom: what does it entail? – Reproductive freedom does not entail a right to have a particular kind of child • Parental autonomy: what does it entail? – Parental autonomy needs to be evaluated within a sophisticated conception of autonomy that involves normative notions of parenthood • What constitutes harm? Who is an appropriate subject of harm? How to balance harm considerations? 25

Arguments Against Reprogenetics • Deontological arguments – Commodification objections – Treating children merely as means to their parents’ ends – Threats to our self-understanding 26

Some Problems • Plurality of conceptions of the good • Children need to be treated merely as means • Non-identity problem 27

Arguments Against Reprogenetics • Consequentialists arguments – Safety: of women, of children • Physical • Psychological – Risks to society • Devaluing of women, of children • Increased inequality • Conceptions of parenthood – Slippery slope 28

Some Problems • Autonomy of women • Non-identity problem • Solutions through regulations 29

Spesicic Issues 30

Specific Issues • How much power should prospective parents have? • Are prospective parents morally required to use reprogenetic technologies? – For selection purposes? – For enhancement purposes? • What moral obligations do clinicians have? 31

Specific Issues • How much power should prospective parents have? – Selecting against disability? • What disabilities? • Causing disable children to exist? • Why not? • What disabilities? – Selecting for/against non-disease traits? • Why not? • What traits? 32

References Brock, D. W. (1995) The Nonidentity Problem and Genetic Harms - The Case of Wrongful Handicaps, Bioethics, 9(3 -4), 269 -275. de Melo-Martin, I. 2017. Rethinking Reprogenetics. New York: Oxford University Press. Green, R. 2007. Babies by Design. New Haven: Yale University Press. Habermas, J. (2003) The future of human nature, Cambridge, UK: Polity. Harman, E. (2004) Can we harm and benefit in creating? , Philosophical Perspectives, 18(1), 89 -113. Harris, J. 2007. Enhancing Evolution. Princeton: Princeton University Press. Parfit, D. (1984) Reasons and persons, Oxford: Clarendon Press. Savulescu, J. 2005. New breeds of humans: The moral obligation to enhance. Reprod Biomed Online 10: 36 -39. Robertson, J. A. (1994) Children of choice: freedom and the new reproductive technologies, Princeton: Princeton University Press. 33

Thank You! QUESTIONS? 34