The state in action: an insider’s view of how the state regulates the use of PGD with HLA tissue-typing in New Zealand

9   The state in action: an insider’s view of how the state regulates the use of PGD with HLA tissue-typing in New Zealand

Mark Henaghan and Thomas Cleary

Introduction

In New Zealand, the choice by intending parents to use reproductive technology is limited by legislation.¹ This default restriction on the prospective parents’ procreative autonomy applies unless the use of the assisted reproductive procedure has been approved² on the basis of guidelines or regulations.³ The task of creating these guidelines falls to a non-governmental advisory committee, the Advisory Committee on Assisted Reproductive Technology (ACART). This advisory committee is supposedly unconstrained by political considerations and, in theory, provides a forum for deliberative discussions on the ethical and social disagreements that surround the use of assisted reproductive technologies.

This chapter provides an analysis, from the perspective of a member of ACART, of how the advisory committee functions in reality. It focuses specifically on the development of guidelines controlling the use of pre-implantation genetic diagnosis (PGD) with human leukocyte antigen (HLA) tissue-typing, more commonly referred to as creating ‘saviour siblings’.

Deliberative democracy and the design of ACART

In regulating any ethically controversial issue, society is confronted with two difficulties. The first is how society deals with pluralism and reasonable disagreement on morality. The second problem is ensuring that whatever decision society reaches has legitimacy. These two difficulties have plagued political philosophers for centuries and there have been many suggested responses. One response which has only relatively recently risen to prominence is the concept of ‘deliberative democracy’.⁴

‘Deliberative democracy’ refers to the idea that in deciding an issue where there is reasonable disagreement, deliberation is the best process for determining a binding outcome, as well as the source of the outcome’s legitimacy.⁵ It is an ‘outcome-oriented process’⁶ and provides a synthesis of both the procedural and constitutional democratic theories which had held sway previously. The advantage of deliberative democracy is that it suspends judgement until different viewpoints have been heard and that it provides a strong basis for different viewpoints being heard. It has been selected as a theoretical basis for this chapter because it looks for solutions through a process of open analysis, rather than taking a particular view in advance. Open analysis is essential because:

For a community to work through potentially deeply divisive issues, it is crucial that an attitude of seeing the concerns of others in their best light is cultivated. This is not the same as giving up one’s own values and committing to the values and beliefs that give a particular concern force. Dr Anthony T Kronman has said: Only the person who has surveyed, with sympathetic detachment, the conflicting interpretations that different members of his community offer of its goals is in a position to say whether his own preliminary views should be revised and to make an informed choice among the alternatives before him.⁷

This section will examine the claims of deliberative democracy. First it will consider how deliberative democracy responds to the problems posed by moral disagreement and legitimacy. Next it will examine six deliberative principles proposed by Gutmann and Thompson⁸ that provide a framework for how deliberative democracy works. Finally it will assess how the state attempted to create a deliberatively democratic advisory committee.

Sources of reasonable disagreement

John Rawls considered that an unavoidable feature of a liberal, free society – such as New Zealand – is that people will reasonably disagree on moral issues.⁹ This was because there are what Rawls terms many ‘hazards’ that are involved in the conscientious exercise of reason in political life.¹⁰ David Hume’s account of these ‘hazards’ or sources of moral conflict is that there is a moderate scarcity of resources which, when linked to human nature’s limited generosity, causes conflict.¹¹ However Gutmann and Thompson view this account as incomplete and add two other sources: incompatible values, and incomplete understanding.¹² Moderate scarcity of resources refers to the fact that there are not sufficient resources to sate people’s desires. As a result of this, distributing resources is an unavoidable feature of society, and if humans have limited generosity – that is if they act in part for selfish reasons – then one individual’s needs will inevitably be prioritised over another’s.

While Gutmann and Thompson agree that there are two sources of moral disagreement, they disagree with Hume that if there were sufficient resources and unlimited generosity moral disagreements would cease.¹³ This is because the ‘problem of moral conflict originates not only between persons but also between the moral values themselves’.¹⁴ Reasonable people often hold incompatible values that cannot be overcome by simply having sufficient resources. Further, despite each individual’s best efforts, there is the problem of incomplete understanding. It is not always possible to see all the relevant perspectives because of a lack of access to facts, and because individual world views can colour the interpretation of ambiguous facts. On this basis, Gutmann and Thompson argue that all four sources of moral disagreement are ‘endemic to human politics’ and so ‘the problem of moral disagreement is a condition with which we must learn to live, not merely an obstacle to be overcome on the way to a just society’.¹⁵

Dealing with reasonable disagreement

Pluralism in values is something that any proposed method must address. Deliberative democracy responds to different sources of moral disagreement in the following ways. First, deliberative democracy creates a forum where each citizen is ‘called upon to weigh interests other than his own and to be guided by some conception of justice and the public good rather than by his own inclinations’.¹⁶ In this forum everyone is required to ‘appeal to principles that others can accept’¹⁷ which ‘have for their reason of existence the common good’.¹⁸ This is the basis for the principle of reciprocity, which will be elaborated on later. Deliberative democracy seeks to overcome the issue of limited generosity and moderate scarcity of resources by asking participants to stand in another individual’s metaphorical shoes. Participants are required to try to understand others’ interests as well as using arguments others can engage with based on the common good, as distinct from the individual good, which distinguishes ‘self-interested claims from public-spirited ones’.¹⁹

While requiring reasons is no guarantee of reaching agreement, for ‘those moral conflicts for which there is no deliberative agreement at present, ongoing deliberation can help citizens better understand the moral seriousness of the views they continue to oppose, and better co-operate with their fellow citizens who hold these views’.²⁰ Furthermore, simply providing a forum where arguments are heard and listened to rather than ignored is an important part of the political process in both representation and in legitimising the outcome; this is discussed below.²¹

Finally, deliberative democracy helps to temper the problem of incomplete understanding. This is because making people deliberate forces them to ‘move beyond the conventional patterns of group politics’²² and helps to remove the particular perspectives that can colour the facts. Also, as Rawls points out, ‘[d]iscussion, is a way of combining information and enlarging the range of arguments’ and concludes that ‘in the course of time, the effects of common deliberation seem bound to improve matters’.²³

From the above discussion, it is apparent that deliberative democracy addresses sources of moral disagreement by minimising or presenting ways through each problem, rather than ignoring or pretending that each source can be ‘overcome’. Unlike other theories of decision-making, this approach respects the inevitability of reasonable disagreement, which is important in respecting minority views. Minority views are accepted and not dismissed as being ‘wrong’ for the sake of achieving a decision.

Providing legitimacy to the outcome

The second difficulty that any theory must confront is providing legitimacy to a decision. As Gutmann and Thompson state, ‘[t]he moral authority of collective judgments about policy depends in part on the moral quality of the process by which citizens collectively reach those judgments’.²⁴ Purely majoritarian decision-making on issues that are binding on society as a whole is generally unsatisfactory, as it does not require a reason for a decision; it only shows that a majority of people wanted a particular outcome.²⁵ In Gutmann and Thompson’s conception, deliberation is the best way for citizens to resolve their moral disagreements about policies and processes, since ‘deliberation is not only a means to an end, but also a means for deciding what means are morally required to pursue [society’s] common ends’.²⁶ In order to pursue these ends deliberative democracy sets out a framework which consists of six principles: reciprocity, publicity, accountability, liberty, basic opportunity and fair opportunity. The first three are concerned with how the deliberation and outcome must occur in order to have legitimacy, while the last three are aimed at the outcome and what must be considered. Each principle will be addressed in turn.

‘Reciprocity’ refers to citizens being required to offer ‘reasons that can be accepted by others who are similarly motivated to find reasons that can be accepted by others’.²⁷ The purpose of requiring these public reasons is that the outcomes of the deliberation ‘are mutually binding’ and so ‘citizens should aspire to a kind of political reasoning that is mutually justifiable’.²⁸ This idea is borrowed from Rawls who holds that for democratic legitimacy only ‘public reasons’ (reasons that are publicly accessible to all reasonable people and not based on a higher claim such as the divine) should be used in public decision-making.²⁹ This idea, however, has been subject to criticism. For example, United States President Barack Obama stated that ‘to say that men and women should not inject their “personal morality” into public policy debates is a practical absurdity’.³⁰ On a theoretical level, Fish argues that it is incoherent to control the contents of arguments in a liberal society.³¹ Galston claims that such a limit on the content is highly restrictive, undermines legitimacy, and is contrary to the principle of reciprocity,³² while others state that such a restriction represents a dominant power structure being imposed, sidelining minorities and their voices.³³ Sandel argues that rather than sidelining these voices and their reasons, society needs to engage with them, and failure to do so can ‘provoke backlash and resentment and can make for an impoverished public discourse’,³⁴ which recreates the problem of incomplete understanding that deliberative democracy seeks to address. Therefore there is an inherent tension within this principle of reciprocity of ensuring that everyone can engage in the debate, while at the same time allowing participants to engage with the reasoning behind the decision.

Gutmann and Thompson’s second principle is that of ‘publicity’. This requires that ‘the reasons that officials and citizens give to justify their political actions, and the information necessary to assess those reasons, should be public’.³⁵ This is important in legitimising the outcome as ‘only public justifications can secure the consent of citizens, whether it be tacit or explicit’.³⁶ Providing reasons also helps to create a pattern similar to case law, which improves the decision-making process both internally and externally. This is because ‘[i]nternally, the requirements lead to more efficient, coherent, and fairer decisions over time’ while ‘[e]xternally, the emerging case law will strengthen broader public deliberation and contribute to the perceived legitimacy of the decision-makers’.³⁷

This could be seen as very restrictive. However, while these decisions might create a precedent of sorts, this does not imply past infallibility. Rather it implies ‘giving careful consideration to why earlier decision-makers made the choices they did. It involves a form of institutional reflective equilibrium, a commitment to both transparency and coherence.’³⁸ In a body such as ACART where the membership changes, continuity in the decision-making process is important for the public to accept the decisions made by ACART. At the same time, recognising that past decisions are not set in stone and can be revisited is important to ensure that past guidelines are continually scrutinised to remain coherent with any changes.

Tied into the principle of publicity is the principle of ‘accountability’. Accountability is necessary for any public decision that has a binding effect because it means the decision-maker is not disconnected from the decision. While this principle is applied to the representatives making the decision, deliberative democracy ‘does not specify a single form of representation’.³⁹ Instead ‘it searches for modes of representation that support the give-and-take of serious and sustained moral argument within legislative bodies, between legislators and the citizens, and among the citizens themselves’.⁴⁰ In the case of ACART this representative model is a specialist panel that is intended to represent certain interests of society including ethical, consumer, practitioner, Māori and religious perspectives.⁴¹ The accountability of these representatives is through Parliament and the Minister of Health who can remove representatives without having to give reasons.⁴²

However no mode of representation is flawless. The problem with having a non-governmental decision-making body is the danger that representatives might become specialised deliberators ‘while citizens become spectators’.⁴³ Deliberative democracy requires that the public engage with the deliberation. However, the reverse danger is that of popularism, where policies are adopted, not based on coherent reasons, but because they are generally acceptable policies.⁴⁴ Depending on which form of representation is chosen, the principle of accountability is applied differently, which can lead to different outcomes. There is also the related problem of which groups are chosen to have representatives, and how those individuals are selected. Added to this is the extent to which people taking part in public forums can put forward the views of the group they represent, or act as individuals. These issues provide challenges to the principle of accountability and suggest that results will vary depending on who the representatives are.

These three principles mentioned above – reciprocity, publicity and accountability – concern the process and legitimisation of the outcome. The remaining three principles – those of liberty, basic opportunity and fair opportunity – are directed instead at the content of the decisions themselves.

The first of these content principles is ‘liberty’. However, this is distinct from a libertarian conception of liberty or autonomy. Under a libertarian conception, autonomy is the paramount value. As John Stuart Mill put it: ‘[T]he only part of the conduct of anyone, for which he is amenable to society, is that which concerns others. In the part which concerns merely himself, his independence is, of right, absolute.’ ⁴⁵ In the area of assisted reproductive technology, this is the foundation of procreative autonomy. This argument is often used to support few or no restrictions being placed on assisted reproductive technologies, as prospective parents should be able to procreate however they want, unless there would be an objective harm as a result.⁴⁶ However, Gutmann and Thompson reject this extreme version of autonomy. Liberty can be tempered by social morality and the harm principle. They argue that failing to temper autonomy would make ‘autonomy’ a supreme value, which would be contrary to the principle of ‘reciprocity’. While the harm principle can be argued to fall within the idea of social morality, it is being used here as a separate consideration because social morality can also include the legitimate intuition that certain things are just wrong.

The second content principle is respecting basic opportunity. This means that the outcome of the deliberation should aim to secure citizens an adequate level of basic goods.⁴⁷ This principle is especially important in areas of new technologies where the differences in access to the technologies between the ‘haves’ and the ‘have-nots’ can be exacerbated by free market effects. This harks back to Hume’s moderate scarcity of resources as a source of moral disagreement. Deliberative democracy’s approach to minimise scarcity of resources is as follows: if something is recognised as a basic good it should be available, as much as possible, to all people, regardless of what resources the individual has. Linked to this principle is the final content principle – fair opportunity. This recognises that access to some resources is not a universal right, as they are not basic goods. However, if the resources are going to be distributed, the distribution should at least be done in a fair manner. This acts as a counter to the previous principle, which can sometimes be seen as egalitarian and so focuses solely on the equality of the outcome, not the process, whereas fair opportunity requires that the process be fair as well. There is an inherent contradiction between the final two principles when expressed in absolute terms. However, the final principle only comes into play where there is not an automatic right to the basic goods. In that sense, the final principle does not undermine the basic opportunity principle.

The shape and function of ACART were forged under intense parliamentary scrutiny. The same could be said for the statute that created ACART: the Human Assisted Reproductive Technology (HART) Act 2004. This Act was originally introduced in 1996 and followed a tortuous path until it finally was enacted in a significantly different form eight years later.⁴⁸ As first conceived, ACART was modelled on the Human Fertilisation and Embryology Authority (HFEA) in the United Kingdom and designed as a deliberative democracy of representatives that encompassed several areas of society. As originally envisaged, ACART would be autonomous from the legislature, and thus could issue guidelines based on coherent reasons, independent of political pressures.⁴⁹

This context is important because, in 2002, prior to the HART Act 2004, there was considerable debate in the United Kingdom on the autonomy of the HFEA following the approval of a case involving PGD with HLA tissue-typing.⁵⁰ As a result of this, the autonomy of the proposed ACART was the subject of intense Parliamentary debate in New Zealand. Several politicians felt that giving ACART the power to issue guidelines without Parliamentary approval would breach the ‘well established Parliamentary principle that matters of policy and substance should be dealt with by Parliament and that only technical issues should be delegated’.⁵¹ However, as Steve Chadwick, the former Deputy Minister of Health under the previous Labour government, pointed out, ‘[i]f we as politicians needed that amount of detail to get our head around technologies and science in [the HART Bill], we should not expect politicians ever to understand what is behind the making of guidelines that will guide this whole industry,’⁵² and thus the autonomous role originally proposed for ACART was retained, albeit in a tempered form, whereby, prior to publishing the guidelines, ACART was required to give the guidelines to the Minister of Health (among others)⁵³ who subsequently must report on the guidelines to the House of Representatives, as well as the Health Select Committee.⁵⁴ This provides some parliamentary supervision of ACART’s guidelines, without requiring ACART to seek ministerial approval.⁵⁵ However, as a result of the parliamentary debate over whether or not ACART should have autonomy, and because of the need for public acceptance of the guidelines,⁵⁶ in practice ACART waits for ministerial approval of its guidelines.⁵⁷

The fear that ACART might have too much power to make public policy that was disconnected from societal values led Parliament to refuse to add more experts to the Advisory Committee, or to make it smaller, as to do so would alter the delicate balance between public policy considerations and technical expertise.⁵⁸ In providing this balance, at least half of the members must not be health practitioners, involved in health research, or associated with a provider of assisted reproductive technology.⁵⁹ This is one of several statutory constraints of the shape of the Advisory Committee.

Under the HART Act 2004, the Minister of Health is required to appoint between eight and 12 members.⁶⁰ The Minister is required to appoint the members based on the ‘recipe’ specified in s. 34 (4) of the HART Act 2004:

(a)   1 or more members with expertise in assisted reproductive procedures; and

(b)   1 or more members with expertise in human reproductive research; and

(c)   1 or more members with expertise in ethics; and

(d)   1 or more Māori members with expertise in Māori customary values and practice and the ability to articulate issues from a Māori perspective; and

(e)   1 or more members with the ability to articulate issues from a consumer perspective; and

(f)   1 or more members with expertise in relevant areas of the law; and

(g)   1 or more members with the ability to articulate the interests of children

This membership is a political compromise, and empowers the Minister to stack the committee with one or more members from any particular group. Nonetheless, it attempts to achieve the delicate balance of ensuring technical expertise in the various issues posed by assisted reproductive technologies, while also ensuring that public policy considerations are taken into account. In 2011 there were eight members. The members’ expertise often straddles multiple fields in the three fields of ethics, consumer issues, and Māori (the indigenous people of New Zealand) values and traditions, where the membership with specific expertise is more than the statutory minimum. These three areas are not technology based, and indicate that in appointing these members, the Minister of Health placed greater emphasis on the public policy component over technological expertise in representation.

How ACART is designed to decide

Having described the membership of ACART and its relationship to the state, it is necessary to outline how ACART is designed to make decisions. In making any decision the Advisory Committee is required to be ‘guided’ by several statutory principles set out in s. 4 of the HART Act 2004. Exactly what ‘guided’ means is not clear. In fact, it has been suggested that ‘guided’ is too weak a term and provides such a broad discretion that the principles ‘may have only little effect on the Committee’s decisions’.⁶¹ The principles in s. 4 of the HART Act 2004 that the Committee are to be guided by include that the health and well-being of children born as a result of an assisted reproductive procedure are an important, but not overriding, consideration.⁶² The health, safety and dignity of present and future generations are to be preserved and promoted.⁶³ It is mandatory to protect the health and well-being of women who are acknowledged as being more directly and significantly affected by assisted reproductive procedures than men.⁶⁴ Informed consent is required,⁶⁵ and the different ethical, spiritual and cultural perspectives – including the needs, values and beliefs of Māori – are to be treated with respect.⁶⁶ Donor offspring should be aware of their genetic origins and have access to information about them.⁶⁷

In addition to the statutory principles set out in s. 4, ACART is implicitly required to be transparent in its decision-making process.⁶⁸ This implicit requirement is drawn from the statutory requirement to consult. Before issuing any guidelines ACART must first provide a discussion paper on the issue, then provide a reasonable opportunity for interested parties and the public to make submissions, and finally ACART must take all submissions into account.⁶⁹ That said, the role of consultation in the drafting of the guidelines is not altogether clear. Indeed the National Ethics Advisory Committee (NEAC), which is set up to provide policy for all ethics committees in New Zealand, and ACART view the role of consultation differently. NEAC views consultation as necessary to ‘validate’ the guidelines. In contrast, ACART views ‘public input [as] an important contribution to developing guidelines’ but equally important is the ‘knowledge and experience of members’.⁷⁰ This difference goes back to the role of deliberation in deliberative democracies. Parliament, in creating ACART and delegating decision-making power, has intentionally set up a forum where the public can enter the discussion, but at the same time the members of ACART are intended to further this discussion and reach a conclusion by acting as a microcosm of society.