The Human Genome Revolution: Sheila McLean’s Quest for Intellectual Rigour and Reproductive Liberty

Chapter 14
The Human Genome Revolution: Sheila McLean’s Quest for Intellectual Rigour and Reproductive Liberty

Mark Henaghan*

Introduction

The scientific importance of the discovery of the human genome cannot be over emphasised. Some ‘heralded’ the subsequent sequencing of the human genome ‘as one of the most important scientific endeavors of our time’.¹ Others said that attempting to map the human genome was ‘the most ambitious scientific project ever undertaken’,² and that it represented ‘science’s final frontier’.³ Even after the sequencing of the human genome was declared to be complete in 2003, the scientific community remained captivated by the human genome and continues to produce a substantial volume of research in this field.

However, the human genome is about much more than just science. Although human genome research is scientific in nature, the far-reaching consequences of the work are ‘of a universal character’ and affect humanity as a whole.⁴ As Article 1 of the Universal Declaration on the Human Genome and Human Rights states, ‘[t]he human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity’.⁵ Genomic research profoundly affects all aspects of human life, from conception until death, and raises fundamental questions about what it means to be a human being:

[I]t is clear that everything from basic survival to status may be affected by genetic knowledge. Our genetic inheritance may predict whether we are conceived, implanted or carried to term. It may also predict how we live our lives, how we view ourselves, our relationships with family and many others, and affect how we make decisions at the end of our lives.⁶

As a result of the successful charting of the human genome and the significant amount of research that followed, humankind has been ‘genetically laid bare as never before’.7

Sheila McLean was one of the first legal academics to recognise the wider legal and ethical implications of human genome research, and was at the forefront of the movement calling for careful debate about the variety of issues raised by genetic research. As she said in 1998:

A great responsibility falls on the shoulders of those who create and manipulate the techniques and technologies which produce these effects, but one also falls on the community to engage with them in a manner which is informed and mature … Mature ethical and legal responses are urgently needed if the good that genetics offers is not to be outweighed by the bad.⁸

This chapter charts McLean’s significant contribution to the field of human genomics. It considers her original quest for the ethical and legal implications of genetic research to be analysed in a balanced way and with, what she calls ‘intellectual rigour’.⁹ The chapter closely examines her denouncement of overly moralistic reasoning and her pursuit of future human genomic policies based instead upon comprehensive deliberation, not only by scientists and academics, but by the community as a whole. The chapter then explores (and structurally echoes) McLean’s burgeoning academic progression from a call for proper debate about the abstract possibilities raised by genomic research, to her appeal for reproductive liberty, incorporating John Stuart Mill’s harm principle, in the context of the concrete realities of genomic reproductive developments. This examination illustrates not just McLean’s scholastic trajectory, but also her steadfast repudiation of high-minded moral reasoning as a legitimate decision-making device. The chapter concludes with a discussion of her invaluable role in the New Zealand Human Genome Project as an international collaborator and shows her unremitting desire for policy formation to be underpinned by proper debate and libertarian reproductive freedoms, rather than appeals to vague moral ideals.

McLean and the Human Genome

Right from the beginning of the so-called human genomic revolution, before the sequencing of the human genome was even complete, McLean’s work was instrumental in calling for concentrated legal and ethical debate about the issues raised by the human genome. She also quickly recognised the importance of community engagement with such important issues. As early as 1994, McLean called for the democratisation of genomic scientific knowledge. As McLean and Dieter Giesen said, ‘[a]s scientists scale ever greater heights of knowledge and understanding, human society … must be involved and empowered’.¹⁰ McLean argued that wide-ranging discussions were required – regardless of how the human genome was to be classified – because the research posed significant ethical and moral dilemmas for the whole of society. At stake was the ‘very identity of the human individual’.¹¹ As McLean said in the Modern Law Review:

Whether or not one views the genetic revolution as benign, evil or neutral, one thing is clear: there is a perceived need to master and control the Leviathan which genetic science is creating. Equally, attempts to regulate genetic knowledge and techniques to maximise the benefits and minimise the potential harms must take place in an atmosphere, and from a perspective, which show balance and intellectual rigour.12

McLean’s concept of ‘intellectual rigour’¹³ focused on avoiding unduly parochial perspectives and remaining open to a wide variety of scientific and ethical possibilities, rather than merely parroting preconceived ideas about right and wrong.¹⁴ As she put it:

For debate to be valuable it must be firmly based in knowledge and understanding, engaged in without prejudice, removed from the parochialism which may obliterate or obfuscate the concerns of the poorer world, mindful of other species on the planet and driven by strength not fear.¹⁵

This fits within her call for ‘sophisticated debate’ on such issues:¹⁶

It is important, therefore, that comment on genetics and its potential is couched in terms which both respect the science and explore the ethics … If we are to harvest the good and avoid the bad of genetics, it is essential that an informed, intelligent and sophisticated debate is undertaken.¹⁷

McLean argued that such debate should start from an understanding of what human genomic research actually tells us about ourselves, rather than starting out imagining the worst-case scenario. Accordingly, she called for negative moral rhetoric to give way to ‘healthy scepticism’.¹⁸ She put it thus:

A preliminary to any assessment of the impact of intervention in the human genome must, therefore, be consideration of what genetics actually tell us about ourselves and others. This enquiry must be conducted in an atmosphere of healthy scepticism but free from the excesses of rhetoric which blunt the edges of the issues and lead to the triumph of the superficial over the thoughtful.¹⁹

The ‘excesses of rhetoric’ referred to here are frequently found in overly moralistic arguments.²⁰ Moral and ethical ideals are inherently subjective and personal. As philosopher Jim Flynn noted, when making decisions we ultimately look within ourselves and we ‘find certain moral ideals acceptable and other moral ideas loathsome’.²¹ While, there is nothing wrong with this approach to personal decision-making per se, individuals should be suspicious of those who attempt to become self-appointed stewards of humanity’s moral wellbeing by elevating their own individual sense of morality to an illusion of objectivity. McLean acknowledged that an individual’s sense of morality has its place in human genome research. However, she noted that one should not be permitted to hide behind the rhetoric of ethics, because individual morality alone is not a ‘sufficiently robust reason’ to prevent others from making their own decisions about such a fundamental humanistic issue:22

The bald assertion that something is unethical is insufficient to make it so. We may say we don’t like something, but to dress up our distaste in the language of ethics is to do significant harm to the language of ethics and its intellectual and conceptual content. We may believe something to be immoral – that is a product of our own intuitions and social and cultural upbringing – and this is essentially unchallengeable. However, the moral intuitions of individuals do not form a sufficiently robust reason to deny those who do not share them the right to take advantage of whatever is disapproved of.²³

This powerful and insightful statement automatically renounces the power of those who profess to know, based on their own individual moral intuitions and/or putative greater ethical knowledge, what is right or wrong for the rest of society.

While it is clear that making decisions for society based on individual moral ideals is inappropriate, especially when applied to fundamentally important and personal issues such as those raised by genomic medicine, attempting to make decisions based predominantly on a claim to shared notions of morality or ethics (if reaching a suitable degree of consensus on such matters is even possible) is also ill-advised for two reasons. First, such an approach would inappropriately subscribe to the idea that might is automatically right. History has shown that the majority does not always hold the most defensible moral and ethical views. The historically poor treatment of native and indigenous peoples around the world provides a particularly poignant example of just how wrong the opinion of a majority of society can be on a particular issue at a given time. Secondly, what originally begins as a shared understanding of moral and ethical principles, often does not remain shared for long. Additional historic examples clearly illustrate that moral and ethical principles are not static and have an inherently impermanent nature. They are in a constant state of flux and are continuously reimagined over time. As McLean has noted, ‘whether or not something is “right” may change depending on the ethical and intellectual infrastructure on which it builds, or on the time at which it is proposed to undertake it’.²⁴ For example, until 1986 it was a criminal offence in New Zealand under the Crimes Act 1961 for men to engage in consensual sexual activities together.²⁵ However, fast-forward to 2013 when New Zealand became the thirteenth country in the world to allow same sex marriage. Indeed, New Zealand now permits two individuals to marry ‘regardless of their sex, sexual orientation, or gender identity’.²⁶ This indicates that individuals and groups of individuals’ moral and ethical views evolve over time.

On this basis, ethical and moral principles should not themselves dictate what regulatory or legislative policies should be created to deal with issues arising from the human genome. Consequently, one would expect that policies created to deal with the practical application of human genome research would be informed and deliberately shaped by intellectual debate and evidence, rather than moralistic ideals. However, as McLean and Elliston state: ‘[w]hile we might wish to believe that public policy is based on proven facts and shaped in a rational and deliberative manner, this is by no means a given’.27 Likewise, as Edward Page notes, policies can be considerably more subjective:

Insofar as they arise from conscious reflection and deliberation, policies may reflect a variety of intentions and ideas: some vague, some specific, some conflicting, some unarticulated. They can … even be the unintended or undeliberated consequences of professional practices or bureaucratic routines.²⁸

Crafting satisfactory policies to contend adequately with the rapidly developing world of human genomics is no easy feat. New possibilities resulting from human genome research create an array of value choices that require proper consideration before adequate policies can be created to deal with such significant issues. Consequently, each policy decision needs to be recognised for what it is: one subjective choice (hopefully based on rigorous intellectual debate) from a group of potential choices, rather than the objective answer handed down from on high. Allowing individuals or decision-makers to hide the ethical and moral framework behind the choices being made is not the answer.

Even after legislators and/or regulators have crafted their chosen policy, a gap remains between the expression of the policy, its interpretation and its practical application. On that basis, there is a need, not just for vigorous intellectual debate about the appropriate stance to take in terms of new genomic technologies, but also for more detailed discussions about the possible practical applications of any policies formulated from those initial debates. Legislators and/or regulators must also recognise the need to monitor and assess such policies frequently lest the moral climate, and the social environment, change over time.

McLean and Reproductive Liberty

The scientific discoveries generated by the sequencing of the human genome have had (and continue to have) a momentous bearing on humanity as a whole. The genetic knowledge stemming from this research has generated seemingly endless possibilities.²⁹ McLean contends that these new opportunities are exciting, declaring ‘[w]hat we can do is amazing; what we will be able to do, almost unimaginable – almost, but not quite, that is. The science fiction of only a few years ago is our present day reality’.³⁰ Medical science has been one of the most significantly affected fields, whereby ‘[t]he combination of assisted reproduction and genetics, so-called ‘reprogenetics’, has heralded a revolution in reproductive choice’,31 which has ‘radically alter[ed] the face of reproductive decision-making’.³² As a result of this ‘reproductive revolution’ many difficult questions have emerged. As McLean said:

The so-called revolutions in human genetics and assisted reproduction – perhaps especially when combined – provide remarkable diagnostic and therapeutic potential. However, these apparent forces for good also raise ethical and sometimes legal questions which can shape the responses of both individuals and states as to how, when and to whom they should be made available.³³

As the possibilities generated by human genome research became concrete advancements in medical technology, McLean’s arguments also progressed. Her original quest for ‘intellectual rigour’ in debating the ethical and legal consequences of human genome sequencing, generally, became a search for freedom in terms of how individuals could use new assisted human reproduction technologies.³⁴ However, she continued to express her frustration at the constant resort to morality as a tool to unduly limit the personal choices of individuals. As McLean and Elliston said, as recently as 2013:

[T]he knee-jerk response to innovation is often to use the law to impose moral values, even though these values may change over the years and may, in any case, be illegitimate. In addition, while it is clearly the case that individuals will be guided by their own moral values, it is less clear that concerns for ‘public opinion’ or some aggregation of supposed moral values are in themselves sufficient justifications for preventing others, who do not share these values, from making choices that for them are morally appropriate.³⁵

McLean presents reproductive liberty as an alternative discourse in response to her continued negation of such overly moralistic reasoning. McLean advocates reproductive freedom in a libertarian context, whereby access to modern procreative technologies developed by virtue of ever-increasing scientific understandings of the human genome should be dependant on individual choice, rather than questions of externally-imposed morality, so long as that individual’s choices do not harm others. Thus, McLean has argued:

[W]hen technology is available, it should be distributed without discrimination and – most importantly – that its use should not be unnecessarily interfered with unless it can be shown that harm would result from failing to curb people’s access to it.³⁶