1 00:00:01,680 --> 00:00:11,010 I begin with the self portrait of our great dinner, one of the greatest artists of the German Renaissance. 2 00:00:11,940 --> 00:00:19,440 As you can see, he was a very fine painter and an even finer printmaker, as you will later see. 3 00:00:20,670 --> 00:00:29,040 He travelled throughout his life, taking up inspiration abroad as well as a few clients. 4 00:00:30,280 --> 00:00:35,140 His second major trip took him across the Alps to Venice, 5 00:00:35,740 --> 00:00:43,030 where he studied the sculptural nudes of Andrea, Montana and the Madonnas of Giovanni Bellini. 6 00:00:45,090 --> 00:00:50,430 While there, he wrote home to me on bail in southern Germany. 7 00:00:51,920 --> 00:01:07,990 And in. One of his letters, we read the following sentence If you can have the high temperature here in a foreign land, I'm treated like a Lord. 8 00:01:09,180 --> 00:01:18,660 Whereas at home, like a parasite. Well, I am myself a foreigner here in terms of my passport. 9 00:01:19,290 --> 00:01:28,410 I think where a centre for practical ethics and at the Ethos Centre, I'm also a foreigner in another sense. 10 00:01:30,430 --> 00:01:34,390 I'm not a bioethicist, let alone a biologist. 11 00:01:35,260 --> 00:01:45,800 I teach political theory. Yet both centres have treated me as an active, I might say, like a Lord. 12 00:01:47,480 --> 00:01:54,530 So I think both centres for the opportunity to learn a little bit about bioethics at Oxford this year. 13 00:01:55,720 --> 00:02:02,320 And for the opportunity this evening to share some of my preliminary thoughts with you. 14 00:02:06,320 --> 00:02:10,460 I argue that private ethics is politics. 15 00:02:12,370 --> 00:02:16,720 Bioethics belongs to the political sphere. 16 00:02:17,790 --> 00:02:28,350 As it involves decisions that cannot be correct but can be procedurally legitimate, as I will explain. 17 00:02:31,490 --> 00:02:40,520 I also argue that we should approach bioethical questions politically in terms of procedural design, 18 00:02:41,960 --> 00:02:49,510 and I argue that two procedures in particular can deliver legitimate bioethical decisions. 19 00:02:53,020 --> 00:02:56,800 I advance my argument in three steps. 20 00:02:57,940 --> 00:03:06,460 First, I develop the thesis with the example of human germline gene editing. 21 00:03:07,960 --> 00:03:21,430 Second, I propose a general understanding of procedurals toward coping with the bioethical questions raised by germline engineering. 22 00:03:23,270 --> 00:03:27,220 Third, I combine two types of procedural. 23 00:03:28,320 --> 00:03:33,610 Expert bioethics committees. And deliberative democracy. 24 00:03:37,360 --> 00:03:52,420 I argue that bioethics is politics, not in the agreeable sense of a triumphal march toward an ever better society and ever greater justice. 25 00:03:53,260 --> 00:03:57,730 But in the disquieting sense of competition. 26 00:03:58,800 --> 00:04:08,010 Competition among value commitments, competition without end by politics. 27 00:04:08,190 --> 00:04:12,900 In this context, I mean disagreement. 28 00:04:13,840 --> 00:04:22,480 In the public sphere about issues that require decision for regulation, for legislation. 29 00:04:23,470 --> 00:04:35,170 For public policy. Perhaps no answer to a bioethical question can claim universal validity. 30 00:04:36,250 --> 00:04:43,120 In as much as bioethical questions are matters of normative preference. 31 00:04:44,280 --> 00:04:47,430 Socially constructed and historically contingent. 32 00:04:49,040 --> 00:04:54,170 Normative preferences differ within communities. 33 00:04:55,160 --> 00:05:00,420 And among them. Competing viewpoints rarely converge. 34 00:05:01,650 --> 00:05:08,880 The existence of stable disagreements does not necessarily show that there is no truth. 35 00:05:09,930 --> 00:05:19,230 Rather, it shows that even if there is truth in this sphere, we have never been able to recognise it. 36 00:05:20,220 --> 00:05:23,790 Which is why, of course, the disagreements are stable. 37 00:05:24,970 --> 00:05:33,430 In natural science. By contrast, questions are assumed to have one answer, and any answer is a claim to truth. 38 00:05:36,560 --> 00:05:39,590 To explore the political quality. 39 00:05:40,740 --> 00:05:42,120 Bioethical claims. 40 00:05:43,020 --> 00:05:58,710 I will look at genetic technologies able to make heritable changes to the human germline that is able to alter the DNA sequences of embryos. 41 00:06:01,720 --> 00:06:10,600 How could such technologies may have unintended consequences given limits to our knowledge of human genetics, 42 00:06:11,470 --> 00:06:16,209 gene environment interactions and the pathways of disease, 43 00:06:16,210 --> 00:06:23,680 including the interplay between one disease and other conditions or diseases in the same patient. 44 00:06:25,050 --> 00:06:32,610 A bio ethical perspective then seeks to balance interventions in the present. 45 00:06:33,950 --> 00:06:40,100 With future consequences that cannot be foreseen, or at least not entirely. 46 00:06:42,940 --> 00:06:49,780 I draw first on a 2017 article by Kim, Gil Douglas and Saba Lesko. 47 00:06:51,540 --> 00:07:00,980 They note. That roughly 6% of all babies born have a serious birth defect. 48 00:07:02,030 --> 00:07:05,480 Of genetic or partially genetic origin. 49 00:07:07,320 --> 00:07:18,960 And they advocate germline engineering to prevent genetic disease with the qualification if proven acceptably safe. 50 00:07:20,670 --> 00:07:24,450 Engineering seeks to prevent disease in future people. 51 00:07:25,330 --> 00:07:36,490 Toward that goal. Germline gene editing may offer a novel treatment for single gene disorders and contribute to overcoming polygenic disease. 52 00:07:38,040 --> 00:07:44,640 It offers some couples the only way to avoid passing on single gene disorders. 53 00:07:44,790 --> 00:07:59,340 In cases where neither in-vitro fertilisation or IVF nor pre-implantation genetic diagnosis for PGD is possible, 54 00:08:00,480 --> 00:08:08,820 PGD is a procedure used prior to implantation to help identify genetic defects within 55 00:08:08,820 --> 00:08:16,530 embryos so as to prevent certain genetic diseases from being passed on to the child. 56 00:08:17,670 --> 00:08:24,389 The embryos used in PGD are usually created during the process of. 57 00:08:24,390 --> 00:08:36,580 By the. Whereas PGD and IVF are not powerful enough to select against polygenic diseases. 58 00:08:37,630 --> 00:08:41,380 Germline gene editing allows multiple changes to be made. 59 00:08:42,490 --> 00:08:48,920 To a single entry. And thus may target many different genes simultaneously. 60 00:08:50,460 --> 00:08:58,140 This is important because the majority of common diseases result not from single gene mutations, 61 00:08:59,040 --> 00:09:05,010 but from a poorly genetic disposition together with environmental influences. 62 00:09:05,920 --> 00:09:12,580 Thus, diabetes involves at least 44 genes in common cancers. 63 00:09:13,660 --> 00:09:28,770 More than 300. We observe a political dimension in this context where Gyngell and colleagues simply dismiss 64 00:09:28,770 --> 00:09:35,850 the possibility that deploying the technology to escape genetic disease might generate. 65 00:09:36,930 --> 00:09:42,600 New forms of inequality, discrimination and societal conflict. 66 00:09:43,970 --> 00:09:51,110 Consider access to technology. Access that is unequal because not everyone can afford. 67 00:09:52,520 --> 00:09:56,030 In that case, not the technology. 68 00:09:57,310 --> 00:10:09,170 But unequal access to it. May generate various forms of discrimination compared with persons who have no access to it. 69 00:10:10,500 --> 00:10:22,890 Persons who do maybe better off along several interrelated dimensions health, ability to work, socioeconomic status and so forth. 70 00:10:24,210 --> 00:10:34,350 Those who do have access likely are more strongly positioned in society to begin with, which may be why they have access in the first place. 71 00:10:36,040 --> 00:10:37,720 Under these social conditions, 72 00:10:38,170 --> 00:10:47,170 access to the technology may only reinforce the social position of those who are better situated and discriminated against. 73 00:10:47,170 --> 00:11:00,920 Those who are weakly situated. We see another political dimension in the fact that many technologies of therapy 74 00:11:01,370 --> 00:11:09,320 that is treating an illness or disease can equally be technologies of enhancement. 75 00:11:10,280 --> 00:11:14,630 Enhancement means improving on a condition not deficient. 76 00:11:15,930 --> 00:11:24,540 For example, losing eye surgery, pre-implantation genetic diagnosis and plastic surgery. 77 00:11:26,550 --> 00:11:36,810 This ambivalent quality of technology deployment would seem to undermine the position of people who oppose using technology 78 00:11:37,200 --> 00:11:46,890 for the purpose of enhancing individuals who are not ill or deceased and yet who advocate its use toward therapeutic ends. 79 00:11:47,760 --> 00:11:59,790 That position would seem to be undermined by the perspectival quality of determining whether deploying such technologies is morally desirable. 80 00:12:01,420 --> 00:12:15,190 Or morally objectionable. We observe another political dimension in the author's claim that it is doubtful that the embryo 81 00:12:15,400 --> 00:12:23,080 is the type of entity that can be harmed or at least harmed in a morally significant way. 82 00:12:24,130 --> 00:12:32,250 The embryo does not have experiences or desires and on some accounts of well-being. 83 00:12:32,830 --> 00:12:40,990 Entities that lack experiences and desires have no well-being and thus cannot be harmed. 84 00:12:42,860 --> 00:12:49,670 Yet. Morally significant harm can be configured in many different ways. 85 00:12:50,670 --> 00:12:57,930 The Catholic Church, to take a prominent example, has a view very different from Dingell and colleagues. 86 00:12:58,890 --> 00:13:07,230 It regards the embryo as morally vulnerable to almost any intervention. 87 00:13:08,580 --> 00:13:11,820 So the task lies not in the question. 88 00:13:12,780 --> 00:13:16,440 What set of reasons can bridge this difference? 89 00:13:17,370 --> 00:13:20,490 The task here, rather, is political. 90 00:13:21,390 --> 00:13:33,990 Any public policy decision? Must choose among incompatible alternatives and do so as a matter of normative preference. 91 00:13:38,540 --> 00:13:49,310 Normative preferences are political when they reflect competition that matters in the formation of regulation or public policy. 92 00:13:50,690 --> 00:13:53,930 In setting public policy. The competition. 93 00:13:56,110 --> 00:14:06,850 With this, with the greatest influence, is often that among elites, the doctrine makers of a world religion constitute one kind of elite. 94 00:14:07,900 --> 00:14:11,020 The European Parliament is a different kind. 95 00:14:12,100 --> 00:14:16,360 It has the authority to pronounce on behalf of all EU citizens. 96 00:14:17,050 --> 00:14:22,840 In doing so, it may sometimes project one particular value commitment. 97 00:14:23,990 --> 00:14:27,080 And a very heterogeneous population. 98 00:14:28,280 --> 00:14:37,520 A 1997 resolution states that the cloning of human beings constitutes a serious violation 99 00:14:38,150 --> 00:14:46,280 of fundamental human rights and is contrary to the principle of equality of human beings, 100 00:14:46,460 --> 00:14:58,280 as it permits a eugenic selection of the human race and offends against human dignity. 101 00:14:59,470 --> 00:15:08,230 The Parliament also declared that the individual has a right to his or her own genetic identity. 102 00:15:11,290 --> 00:15:17,620 A scientific elite differs from both religious and political elites. 103 00:15:18,100 --> 00:15:28,970 With whom? Scientific fact. Does not necessarily carry weight in all cases, as the following examples show. 104 00:15:30,410 --> 00:15:43,280 As background. I begin with a 2016 article in which John Harris notes that one in every 270 births is an identical twin. 105 00:15:44,640 --> 00:15:57,120 A twin is a kind of natural clone, and as such would seem to violate every set of twins putative equal right to his or her unique genetic identity. 106 00:16:01,230 --> 00:16:04,320 In 1998, another eight. 107 00:16:04,470 --> 00:16:09,450 The Council of Europe declared a prohibition of human cloning. 108 00:16:10,950 --> 00:16:21,900 But the Council nowhere explained how or why its prohibition can possibly be based on what the Council referred to as. 109 00:16:23,040 --> 00:16:29,600 Human rights. Human dignity. And genetic identity. 110 00:16:29,840 --> 00:16:38,210 These terms are quite indeterminate in meaning, as Harris asks rhetorically, 111 00:16:39,110 --> 00:16:51,080 if embryo splitting that is the deliberate creation of monocyte like twins proved to confer immunity to some lethal genetic diseases. 112 00:16:52,010 --> 00:16:58,140 Would we ban this deliberate cloning? Another example. 113 00:16:59,190 --> 00:17:11,040 In 1997, UNESCO's bioethics committee proclaimed a moral imperative that the human genome must be preserved as the. 114 00:17:12,370 --> 00:17:21,120 Common heritage of humanity. But how can something be preserved in this case, the human genome, 115 00:17:21,840 --> 00:17:31,110 when it is a product of evolutionary change and exists only within the ongoing phenomenon of evolution? 116 00:17:34,090 --> 00:17:37,960 UNESCO's committee would seem to be advocating the. 117 00:17:38,910 --> 00:17:45,360 Freezing of the human genome at its current state of evolutionary history. 118 00:17:46,260 --> 00:17:53,249 This viewpoint is hostile to the very idea of intervening in the germline of humans to modify, 119 00:17:53,250 --> 00:17:59,460 if not human nature, then at least the genetic endowment of some humans. 120 00:18:02,060 --> 00:18:11,750 The idea of somehow freezing the evolutionary development of the human genome at any point in time. 121 00:18:12,810 --> 00:18:16,650 Is misguided. All genomes change over time. 122 00:18:17,520 --> 00:18:25,140 A simple example of this is the spread of lactose tolerance among different human populations. 123 00:18:26,170 --> 00:18:32,830 In human infants. The lactase gene is expressed once the baby is weaned. 124 00:18:33,220 --> 00:18:42,700 This gene shuts down the introduction of milk into the ordinary diet of some human populations. 125 00:18:43,240 --> 00:18:51,760 Through the domestication of milk, producing animals favoured those adults who carry the lactase enzyme. 126 00:18:52,570 --> 00:19:02,690 Now they had a new food source. And over time, 80% of the European population became lactose intolerant. 127 00:19:05,980 --> 00:19:14,020 This example shows how this or that concept of nature made selfie kind of political bioethics. 128 00:19:14,830 --> 00:19:22,150 Can this or that concept offer some kind of normative standard for making bioethical decisions? 129 00:19:24,030 --> 00:19:33,030 From a Catholic perspective, nature does seem to be a standard, but from other perspectives, we might well reject nature as a standard. 130 00:19:33,960 --> 00:19:42,420 Consider if sexual reproduction were in fact not natural, but somehow a human artefact, 131 00:19:43,470 --> 00:19:53,190 it would hardly satisfy today's regulatory bodies that monitor medical procedures given the incidence of sexually transmitted disease. 132 00:19:53,580 --> 00:20:01,590 The high abnormality rate in the resulting children and the gross inefficiency in terms 133 00:20:01,830 --> 00:20:09,059 of the death and destruction of embryos estimated to be one in three deaths per life. 134 00:20:09,060 --> 00:20:23,700 Birth to one in five deaths. I offer one last example of a political dimension within a bilateral by bioethical issue. 135 00:20:24,780 --> 00:20:33,090 The claim that parents are morally obligated to create the biologically best child possible. 136 00:20:35,530 --> 00:20:44,719 Best possible. As defined by what standard nature functions as a positive standard. 137 00:20:44,720 --> 00:20:56,990 When humans value their evolved biology and diagnosed some variations as abnormalities or illnesses as unwelcome deviations from the standard. 138 00:20:58,780 --> 00:21:11,380 And nature functions as a negative standard whenever humans would engineer their species in ways that seek improvements upon our evolved biology. 139 00:21:13,410 --> 00:21:18,810 Political. Is the choice of a particular notion of nature. 140 00:21:19,940 --> 00:21:29,750 So is the particular perspective from which one evaluates the merits and demerits of evolved human biology. 141 00:21:30,620 --> 00:21:37,790 So is the choice of criteria that would define any given concept of improvement. 142 00:21:41,730 --> 00:21:50,120 We come now to part two. Procedural ism offers one way of coping with some of these challenges. 143 00:21:51,070 --> 00:21:55,870 It might secure agreement under conditions that otherwise discourage. 144 00:21:57,840 --> 00:22:08,370 General agreement on political and social norms is unlikely, where norms calling for deep commitment are not shared within the community. 145 00:22:09,690 --> 00:22:15,390 But if normative differences preclude agreement on many issues. 146 00:22:16,350 --> 00:22:22,620 They need not preclude agreement on procedural rules for coping with difference. 147 00:22:24,840 --> 00:22:40,230 Procedural ism is the notion that no rule is acceptable apart from a formal method, and that the acceptable method yields an acceptable rule. 148 00:22:41,160 --> 00:22:48,360 A rule is acceptable by virtue of being the outcome of an agreed upon procedure. 149 00:22:49,230 --> 00:22:55,980 And the rule in this context would be the answer to a particular bioethical issue or question. 150 00:22:59,690 --> 00:23:04,100 In a liberal democratic tolerant of. 151 00:23:05,460 --> 00:23:16,950 Value pluralism. Procedural ism makes collective action possible despite enduring differences in the values commitments of its various members. 152 00:23:18,000 --> 00:23:28,890 It makes agreement possible because it aspires not to consensus on substance, but rather to legitimacy in form. 153 00:23:30,340 --> 00:23:40,000 Even those persons whose preference did not succeed in the latest procedural decision may regard the outcome as legitimate. 154 00:23:41,430 --> 00:23:50,310 Those who disagree with the winning position may continue to argue against it and to marshal support for their preferred alternative. 155 00:23:51,340 --> 00:23:56,560 And they may even prevail in the future. Procedural exercise. 156 00:23:57,980 --> 00:24:03,260 And political community, then, through majoritarian democratic institutions, 157 00:24:03,980 --> 00:24:11,900 can move forward in the name of all members, even under conditions of disagreement. 158 00:24:13,770 --> 00:24:24,470 I address now two features of procedural ism first, its normative thinness, and second, constraints on it. 159 00:24:27,570 --> 00:24:35,200 A procedure is normatively thin. If it does not affect the content of the procedure. 160 00:24:36,160 --> 00:24:40,810 For example, voting in a democratic election is a kind of procedure. 161 00:24:41,500 --> 00:24:53,380 The content of this procedure comes from the particular policy, commitment and values of each of the political parties fighting for votes. 162 00:24:54,610 --> 00:25:04,180 In a fair system of voting, a procedure establishes which party has received the most votes without influencing that outcome. 163 00:25:04,990 --> 00:25:12,819 Each political party, for its part, is normatively think it has particular commitments, 164 00:25:12,820 --> 00:25:17,260 which it offers voters commitments that compete with those of other parties. 165 00:25:19,690 --> 00:25:27,820 This notion of thick and thin norms is a bit tricky, so an additional example might help. 166 00:25:29,150 --> 00:25:39,110 The Constitution of a modern liberal democracy guarantees its citizens the freedom of religious belief in practice. 167 00:25:40,370 --> 00:25:46,880 Any particular faith is normatively thick as a particular belief system. 168 00:25:48,110 --> 00:25:54,990 Thus, in a nation state where to require all citizens to adopt one particular religion. 169 00:25:55,850 --> 00:26:04,160 Doing so would violate the sick norms of all citizens of other faiths because each has its own belief system, 170 00:26:04,700 --> 00:26:07,640 even as some of them overlap in some ways. 171 00:26:09,590 --> 00:26:18,110 Guaranteeing the equal freedom of all faiths, neither favours nor dis favours any one faith or no faith at all. 172 00:26:18,620 --> 00:26:23,880 In that sense, the rule of freedom. Of belief. It's normal to believe in. 173 00:26:25,580 --> 00:26:35,540 A legal rule that allows members of each faith an equal right to practice their faith freely does not violate the norms of any of those faiths. 174 00:26:35,570 --> 00:26:45,770 Indeed, that normatively thin rule facilitates their peaceful coexistence despite differences in their respective sets of faith norms. 175 00:26:46,640 --> 00:26:57,620 In this sense, the norms can facilitate life within normatively heterogeneous communities by means of its normative thinness. 176 00:26:58,040 --> 00:27:04,250 Procedural ism allows for reaching decisions that are binding on members of a community. 177 00:27:05,120 --> 00:27:14,570 To do so, it need not presuppose some end or value prior to or independent of the goals of the instant case. 178 00:27:17,680 --> 00:27:28,569 To be sure, procedural wisdom allowed facilitates outcomes that are thick nothin but participants need not identify in any way with 179 00:27:28,570 --> 00:27:37,330 the thick norms they nonetheless recognise as legitimate because they can recognise those norms as having been selected. 180 00:27:38,380 --> 00:27:45,980 On a legitimate basis. That's the idea of the losing party, recognising the winning party's right to form a government. 181 00:27:46,940 --> 00:27:59,330 That's the idea of recognising the legitimacy of a judicial system, even when one disagrees with a particular judicial holding or interpretation. 182 00:28:01,470 --> 00:28:06,480 The normative identities of groups and individuals, as I've said, are things. 183 00:28:07,500 --> 00:28:11,820 In modern pluralist societies and of course, across different societies, 184 00:28:12,120 --> 00:28:19,710 groups and individuals regularly need to be able to act on a normatively thin basis. 185 00:28:21,460 --> 00:28:32,500 The normative diversity within the population or across different populations in many cases is quite irrelevant to the tasks of modern life. 186 00:28:33,510 --> 00:28:43,500 Here. People are functionally inter-related, yet in many respects normatively autonomous of each other. 187 00:28:46,000 --> 00:28:51,040 The notion of autonomy is a core feature of political liberalism. 188 00:28:51,790 --> 00:28:57,080 It values the individual's uniqueness of all other persons. 189 00:28:58,180 --> 00:29:03,730 The bioethical notion of patient autonomy reflects this value. 190 00:29:04,780 --> 00:29:09,690 Autonomy here doesn't mean separation from others. 191 00:29:09,700 --> 00:29:22,510 It means rather an appreciation of how the individual is both inflected in various group memberships and is reducible to not. 192 00:29:24,080 --> 00:29:29,000 Medical practice and biomedical research may, 193 00:29:29,000 --> 00:29:38,510 in some cases consider persons as isolated individuals who consent or refuse to consent to participate in research. 194 00:29:39,600 --> 00:29:46,140 In other cases, it may regard them as members of various non-governmental. 195 00:29:48,320 --> 00:29:57,480 Groups. Such as the family or racial and ethnic communities. 196 00:30:01,610 --> 00:30:04,610 How do we best conceive of patient autonomy? 197 00:30:05,480 --> 00:30:15,590 This, too, is a political question. A normatively thin standpoint does not regard the individual in terms of her communal memberships, 198 00:30:16,250 --> 00:30:21,500 or at least it does not attempt to determine her wishes and choices. 199 00:30:22,920 --> 00:30:30,480 By simply reading them off community traditions, beliefs and values. 200 00:30:31,390 --> 00:30:43,090 Rather it views patient autonomy in terms of uncommercial choice in accordance with the individual's subjective perception. 201 00:30:43,970 --> 00:30:55,670 A for particular interests. Likely any bioethics regards the individual as a distinct locus of moral value. 202 00:30:56,780 --> 00:30:57,770 In most cases, 203 00:30:58,040 --> 00:31:08,450 the individual's interests would take precedence over the interests of the wider community and over those of scientific and medical research. 204 00:31:09,980 --> 00:31:21,020 But maybe not in all cases. And if so, then no single understanding of patient autonomy can be the best one for all persons. 205 00:31:21,560 --> 00:31:28,730 In all cases. One familiar question about patient O'Connor. 206 00:31:28,760 --> 00:31:40,190 It concerns the relationship between professional expertise and its individual addressee, as in the doctor patient relationship. 207 00:31:42,880 --> 00:31:50,710 On the one hand, the patient may need and want professional expertise in the interests of her health. 208 00:31:51,760 --> 00:31:59,290 On the other hand, she is vulnerable to medical paternalism because she lacks professional expertise. 209 00:32:00,220 --> 00:32:11,020 Patient autonomy seeks to protect and preserve the vulnerable individuals freedom vis a vis the power of professional knowledge and practical skill. 210 00:32:14,210 --> 00:32:22,340 Bioethics might frame this issue as one of balancing patient Aponte and medical expertise. 211 00:32:23,060 --> 00:32:26,810 Balancing here is not a matter of objective measurement. 212 00:32:27,530 --> 00:32:41,270 Determining the acceptable level of risk or a necessary level of safety is contingent context relative and depends on value commitments. 213 00:32:42,080 --> 00:32:45,770 Consider chemical therapies to treat cancer. 214 00:32:46,580 --> 00:32:54,260 How is the risk of their high toxicity best balanced against their power to subdue cancer? 215 00:32:55,280 --> 00:33:01,760 The risk is so great that, unlike most other pharmaceuticals licensed for human use, 216 00:33:02,390 --> 00:33:08,450 chemical therapies have never been tested on healthy adults before clinical adoption. 217 00:33:09,770 --> 00:33:14,060 Yet there are benefits measured against the lethal nature of cancer. 218 00:33:14,450 --> 00:33:19,250 May persuade some patients and some clinicians that the risks are acceptable. 219 00:33:20,360 --> 00:33:23,750 But not all patients and physicians will be so persuaded. 220 00:33:24,320 --> 00:33:29,630 Persons of different think values will balance the risks and benefits differently. 221 00:33:32,380 --> 00:33:44,080 Consider another example. Mitochondrial disease causes conditions like leis disease, a fatal infant encephalopathy. 222 00:33:45,020 --> 00:33:52,070 And it's common and it causes other diseases that waste muscles or cause diabetes and deafness, 223 00:33:53,450 --> 00:34:02,059 mitochondrial replacement therapy or M or T in search of the healthy mitochondria of 224 00:34:02,060 --> 00:34:08,330 an unrelated person into an embryo containing the nuclear DNA of two other people. 225 00:34:09,350 --> 00:34:22,400 In one estimate, NRT will enable some 2500 women in the UK to have children genetically related to them while avoiding terrible diseases. 226 00:34:25,390 --> 00:34:31,510 But risk benefit analysis in this context must address the fact that currently there 227 00:34:31,510 --> 00:34:35,800 is no alternative for women who want their own genetically related offspring, 228 00:34:36,730 --> 00:34:46,000 and that many women will continue to desire their own genetically related children and will continue to have them, if denied or unable to access. 229 00:34:46,660 --> 00:34:55,030 M are key and that with out NRT, these women will perpetuate the occurrence of disease. 230 00:34:55,960 --> 00:35:03,250 Again, we observe balance as a matter of competing values that different people will weigh differently. 231 00:35:03,760 --> 00:35:12,670 In this sense, again, it is political. I turn now to ways in which procedural ism is constrained. 232 00:35:13,210 --> 00:35:22,330 After all, the thin normativity of procedural ism does not mark the absence of all normativity whatsoever. 233 00:35:23,170 --> 00:35:28,120 Thinness is not neutrality, nor is it indeterminacy. 234 00:35:29,080 --> 00:35:39,490 Procedural ism must be sufficiently thick normatively to generate answers to difficult questions about the good, the right and the just. 235 00:35:40,570 --> 00:35:50,800 Yet it must be sufficiently thin to appeal to people who disagree about the nature of the good, the right, and the just. 236 00:35:51,490 --> 00:36:00,460 For that reason, no procedural ism can operate without introducing into itself at least a few substantive norms. 237 00:36:03,160 --> 00:36:09,760 First of all, a commitment to procedural ism is not itself normatively neutral. 238 00:36:10,240 --> 00:36:18,820 Procedural ism is itself a norm, one that entails and often the obligation to recognise and abide by its outcomes. 239 00:36:19,870 --> 00:36:28,180 This is a significant obligation normatively, because procedural ism does not generate normatively neutral outcomes. 240 00:36:28,510 --> 00:36:35,830 Any procedure that has winners and losers is hardly neutral in its results. 241 00:36:37,190 --> 00:36:46,790 So an obligation to recognise and abide by procedural rules is an obligation to respect some norms that one does not share. 242 00:36:50,940 --> 00:36:59,880 Further procedural ism entails various norms of fairness, including fair access to participation, 243 00:37:01,050 --> 00:37:08,400 fair conditions of participation and the sincerity of participant behaviour. 244 00:37:09,480 --> 00:37:17,220 The norm of fairness gives the individual reason to trust the group or institution in which the procedure is embedded. 245 00:37:18,240 --> 00:37:27,960 A patient's informed consent is a matter of fairness, a matter of the patient's being able to participate in making some relevant decisions. 246 00:37:28,980 --> 00:37:33,360 This fairness gives the patient reason to trust the medical research professionals. 247 00:37:37,250 --> 00:37:46,570 What about the interests of third parties? For example, the patient's parents or spouse or children. 248 00:37:46,900 --> 00:37:52,570 How are these third party interests to be balanced against the patient's interests? 249 00:37:52,900 --> 00:38:02,000 In many cases, we would expect them to be subordinated to the patient's interests, but maybe not in all cases. 250 00:38:02,080 --> 00:38:11,860 For example, with respect to infants in intensive care, how are its best interests balanced against those of the family? 251 00:38:13,090 --> 00:38:22,060 The infant cannot participate, of course, but the question still poses itself where a proxy defines and advocates for the child's best interests. 252 00:38:23,110 --> 00:38:29,979 The attending doctors might be such a proxy where decisional autonomy lies not with the parents, 253 00:38:29,980 --> 00:38:33,880 but with medical professionals who, let's say in this instance, 254 00:38:34,300 --> 00:38:42,190 do not share the family's view of the child's best interests with the family takes to be the child's best interests, 255 00:38:42,190 --> 00:38:46,540 contrast with what the medical profession believes those best interests to be. 256 00:38:47,890 --> 00:38:54,550 Each side may then view the other side as subordinating the patient's interests in this case. 257 00:38:57,290 --> 00:38:58,190 In some cases, 258 00:38:58,400 --> 00:39:09,200 procedural ism involves substituted judgement where another must represent the economy of the so who cannot choose and act independently. 259 00:39:10,400 --> 00:39:17,870 Issues involving future children, such as those subjected to germline gene editing, 260 00:39:18,560 --> 00:39:26,000 require substituted judgement in lieu of the affected persons consent. 261 00:39:28,170 --> 00:39:38,460 Do the benefits enjoyed by the individuals once born way heavier than the risks to which the procedure exposed them? 262 00:39:39,840 --> 00:39:51,570 Not if germline gene editing causes side effects so severe as to make an individual's life not worth living. 263 00:39:52,680 --> 00:40:00,420 But the question of what makes an individual's life not worth living is political. 264 00:40:01,020 --> 00:40:09,720 Any given answer will depend on very particular value commitments that compete with those held by others. 265 00:40:14,110 --> 00:40:17,440 I come now to the third and final part of my talk. 266 00:40:19,800 --> 00:40:25,680 Here, I propose combining two types of procedural ism in mutually reinforcing ways. 267 00:40:26,430 --> 00:40:30,420 The procedural ism of expert committees or commissions, 268 00:40:30,990 --> 00:40:40,170 and the procedural ism of deliberative democracy then carefully and systematically renders late opinion better informed. 269 00:40:41,010 --> 00:40:47,360 And more thoughtful. I begin with bioethics committees. 270 00:40:47,900 --> 00:40:57,020 They claim a special expertise in making normative decisions that endow their recommendations with normative authority. 271 00:40:57,980 --> 00:41:06,080 But I would claim public commissions cannot operate on a plane above politics. 272 00:41:08,470 --> 00:41:13,030 To clarify this claim, I draw on a 27 article in which she and. 273 00:41:14,500 --> 00:41:25,210 Michael Dunn and so on, located an expert committee's authority partly in the political community's stake in scientific research. 274 00:41:26,500 --> 00:41:33,700 According to these authors, it is this stake that justifies a classical framework for research governance. 275 00:41:34,600 --> 00:41:48,130 They regard this stake as fundamentally democratic, situating an inquiry and research within the grasp of society rather than removed from. 276 00:41:50,690 --> 00:42:02,240 Yet they caution that a specifically democratic location misses something important about the nature of inquiry, something that transcends politics. 277 00:42:03,620 --> 00:42:10,190 She and and colleagues argue that insofar as the committee members operate within this framework, 278 00:42:11,060 --> 00:42:21,350 there is no distinctive ethical expertise relevant to the justification or practice of ethics review that exists independently of this process. 279 00:42:22,400 --> 00:42:31,280 Thus, it is the decision making process that is authoritative, not the committee. 280 00:42:33,140 --> 00:42:41,450 Indeed, they argue any committee member or social researcher who put themselves forward as an ethics expert in 281 00:42:41,450 --> 00:42:49,700 this context would be at risk of undermining the legitimacy of a fair process model of research ethics. 282 00:42:50,660 --> 00:43:03,070 Governance. In fact, to say that procedural isms authority comes in part from the institutional status of the committee itself, 283 00:43:03,910 --> 00:43:07,780 both as a process and in the appointment of its individual members, 284 00:43:08,110 --> 00:43:13,330 obscures the political element here the presence of different persons in the committee, 285 00:43:13,480 --> 00:43:19,270 accompanied by their respective value commitments which may marry and compete with each other. 286 00:43:23,480 --> 00:43:28,070 Expert bioethics committees are political, among other dimensions, 287 00:43:28,070 --> 00:43:36,320 as well as a particular commitment to procedural ism as a means of public policy formation. 288 00:43:37,490 --> 00:43:46,220 In selecting the criteria of membership appointment and in choices choices about who might to provide testimonials. 289 00:43:46,730 --> 00:43:53,600 These criteria displayed political sensitivities, such as seeking a range of viewpoints. 290 00:43:56,310 --> 00:43:59,010 I turn now to deliberative democracy. 291 00:43:59,490 --> 00:44:08,850 I think the procedural wisdom of expert committees needs to be supplemented with an integrated into another kind of procedural ism, 292 00:44:09,180 --> 00:44:15,210 one that generates informed and reflected non-expert opinion. 293 00:44:16,290 --> 00:44:24,900 Deliberative democracy. Deliberative democracy chooses participants randomly rather than selecting for affinity. 294 00:44:25,950 --> 00:44:35,399 It allows participants to draw on balanced expert information toward vetting competing perspectives carefully perspectives both of 295 00:44:35,400 --> 00:44:45,810 scientific research and of ethical reasoning by consulting with experts representing diverse viewpoints and deliberations with peers. 296 00:44:46,200 --> 00:44:56,100 Participants develop, examine and challenge their own views while mutually influencing each other by reasoned argument that they themselves evaluate. 297 00:44:57,140 --> 00:45:04,490 This procedure encourages discursive argument based on views informed by exposure 298 00:45:04,760 --> 00:45:11,120 to scientific fact as well as exposure to a range of normative thinking. 299 00:45:13,870 --> 00:45:22,210 Like expert bioethics committees, the deliberative process begins with certain norms, norms that can always be placed into question. 300 00:45:23,140 --> 00:45:26,320 Earlier, I examined a couple of these kinds of norms, 301 00:45:26,530 --> 00:45:37,690 the risk benefit analysis to minimise patient harm and informed consent to provide decisional autonomy to the patient. 302 00:45:38,710 --> 00:45:47,920 The deliverable, the deliberative process also begins with another, more commitment to deliberation on terms of mutual respect. 303 00:45:48,520 --> 00:46:00,640 And that commitment reduces the range of possible, relevant reasons to only those that can be accepted by others on terms that all can accept. 304 00:46:03,120 --> 00:46:10,799 To be sure, reasons acceptable to other persons may often be difficult to identify where. 305 00:46:10,800 --> 00:46:16,680 The reason in question is an artefact of contested background assumptions such 306 00:46:16,680 --> 00:46:23,400 as what constitutes the good life or how political community is best organised. 307 00:46:26,930 --> 00:46:35,060 An approach based on giving and evaluating reasons makes definite demands on the participants. 308 00:46:35,840 --> 00:46:44,720 It requires that they be able to change their minds based on giving reasons and evaluating the reasons of others. 309 00:46:45,860 --> 00:46:53,540 It requires that they be able to consider trade-offs that are necessary in public policy, 310 00:46:54,230 --> 00:47:02,780 rather than assuming that their role is to only and always protect and preserve their own personal interests. 311 00:47:03,740 --> 00:47:09,710 And it requires participants to be respectful of minority views. 312 00:47:13,560 --> 00:47:26,550 I come now to my conclusion political bioethics is less plausible the more it presupposes shared common values. 313 00:47:27,940 --> 00:47:28,870 By contrast, 314 00:47:29,650 --> 00:47:41,350 political bioethics is plausible by means of decisions that are acceptable to all participants and affected persons and to the community as a whole, 315 00:47:41,830 --> 00:47:53,500 because they are legitimate and bioethical decisions, are political, is made on the basis of procedural legitimacy. 316 00:47:55,600 --> 00:48:09,070 In this way, political bioethics views the lack of convergence among moral experts as inherently political, inherently political means. 317 00:48:10,120 --> 00:48:19,990 There is no particular method of moral reasoning that can eliminate the political quality of bioethical issues. 318 00:48:20,650 --> 00:48:32,890 There is no external standpoint that would allow one to adjudicate in a manner objective or neutral or disinterested. 319 00:48:33,700 --> 00:48:38,740 Among the competing bioethical presuppositions and understandings. 320 00:48:39,940 --> 00:48:50,740 Thus reasoned debate by itself all too often will fail to generate an answer equally acceptable to all participants and affected persons. 321 00:48:53,320 --> 00:49:00,100 To view bioethics as politics is to take a viewpoint that is morally ambiguous. 322 00:49:00,940 --> 00:49:07,840 The potential wisdom and insights of bioethical analysis cannot escape this ambiguity. 323 00:49:08,860 --> 00:49:17,890 Given disagreement in the public sphere about ethical issues that require decision for regulation, 324 00:49:18,580 --> 00:49:25,330 legislation or public policy, how should bioethical questions be decided? 325 00:49:25,330 --> 00:49:29,590 On what basis in liberal Democratic community? 326 00:49:29,740 --> 00:49:37,630 It should be a heightened form of opinion. A heightened forum means informed by expert opinion of committees, 327 00:49:38,200 --> 00:49:44,890 as well as by input from the general populace that has benefited from democratic deliberation. 328 00:49:46,150 --> 00:49:54,490 Basing political, legal or regulatory answers on expert opinion may not always be easy, 329 00:49:55,240 --> 00:50:00,610 and basing them also on democratic opinion is surely very difficult. 330 00:50:03,590 --> 00:50:11,570 So what difference does the adjective political make when conceptualising bioethics? 331 00:50:11,870 --> 00:50:20,660 What practical difference would it make if a community were to adopt a viewpoint of political bioethics? 332 00:50:22,610 --> 00:50:29,600 It might make a practical difference. After all, if bioethics is fundamentally political, 333 00:50:30,800 --> 00:50:40,580 then it matters what kind of politics we actually practice in any given community toward bioethical regulation, 334 00:50:40,580 --> 00:50:45,860 toward bioethical legislation, and toward bioethical public policy. 335 00:50:46,190 --> 00:50:52,310 If we prefer political liberalism to say authoritarianism, 336 00:50:53,330 --> 00:51:04,610 then we will want to attempt to extend the discussion and the decision making to the general public to the extent possible at any given time. 337 00:51:05,600 --> 00:51:12,020 Again, that goal is difficult indeed, and it is fraught with obvious dangers. 338 00:51:12,020 --> 00:51:16,070 It may never be more than modestly successful, if even. 339 00:51:16,830 --> 00:51:25,060 That. But a goal impossible to meet may still function in a regulative sense. 340 00:51:25,080 --> 00:51:28,830 It may provide us practical orientation, 341 00:51:29,790 --> 00:51:37,889 and that orientation should be in a democratic spirit to extend the discussion and 342 00:51:37,890 --> 00:51:43,860 the decision making to the general public to the extent possible at any given time, 343 00:51:44,010 --> 00:51:47,460 and hopefully to ever greater extents. 344 00:51:48,630 --> 00:51:54,000 Over time. The promised print. 345 00:51:54,240 --> 00:51:55,020 Thank you very much.