Disclosure Dilemmas
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Disclosure Dilemmas

Ethics of Genetic Prognosis after the 'Right to Know/Not to Know' Debate

Hansjakob Müller, Christoph Rehmann-Sutter, Christoph Rehmann-Sutter

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eBook - ePub

Disclosure Dilemmas

Ethics of Genetic Prognosis after the 'Right to Know/Not to Know' Debate

Hansjakob Müller, Christoph Rehmann-Sutter, Christoph Rehmann-Sutter

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About This Book

There exists today a fast growing availability of personal genetic information. Its prognostic impact and value for an individual or family member's health is sometimes unclear, whilst at other times it is clear-cut. The issue of whether to disclose genetic information does however have wide ranging implications. Avoiding the rhetoric of 'genetic exceptionalism', and drawing on an expanded field of bioethical, sociological and anthropological research, this book sets a new agenda for discussing the ethics surrounding the disclosure of prognostic genetic information. A hermeneutical approach reconsiders the ethics of disclosure in a variety of contexts in which genetic information is generated, requested, interpreted or communicated - from the provider perspective, but also from the moral perspectives of clients and their families. It is in situations of disclosure, in these different contexts, that genetic information meets morality. Providers and recipients can become vulnerable to the revelation or concealment of information, and the forms in which it may be provided. Disclosure Dilemmas invites readers to explore these contexts from an ethical viewpoint and will be a valuable resource for anyone with an interest in biomedical ethics.

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Information

Publisher
Routledge
Year
2017
ISBN
9781351943819
Topic
Law
Edition
1

PART 1
Setting the Scene

The Right to Know and the Right Not to Know is the title of a collection of chapters, edited by Ruth Chadwick, Mairi Levitt and Darren Shickle 12 years ago, on the ethical and philosophical implications of genetic screening (Avebury Series of Philosophy, Ashgate 1997). This book shaped the discussion and gained wide academic reputation. The first chapter of the present book is written by the first editor of the former, philosopher Ruth Chadwick. She outlines the main trends through which the debates have moved since the publication of her earlier book, and exposes a catalogue of problems to be discussed when considering a new set of ethical perspectives and approaches, all retaining the right to know and the right not to know as a key entrance formula for identifying and understanding ethical issues of genetic testing and screening.
Barbara Katz Rothman opens a sociological perspective on the evaluation of ethical issues in genetic counselling. It cannot be taken for granted, she writes, that some aspects are highlighted as ‘ethical dilemmas’ while others remain just ordinary practice. The social construction that precedes the philosophical analysis has to be recognized in the bioethical analysis. She raises the question of why the right to know or not to know is the appropriate or even unique frame for understanding the nature of such dilemmas.
Hansjakob Müller, as a practitioner of medical genetics in Switzerland, visualizes the framework in which genetic counselling usually takes place. He defines the necessary requirements for good genetic counselling from a professional perspective, and observes that in everyday medical routine there are many difficulties and constraints due to institutional limits, and lack of time, financial resources and also of knowledge to fulfil high ethical standards. Pre-symptomatic (predictive) tests should only be made available via consultation though a doctor experienced in this field. Laypersons, who are often also emotionally involved, are not capable of defining the correct indication for a genetic test, and are also not competent in the interpretation of the emerging results.

Chapter 1
The Right to Know and the Right Not to Know – Ten Years On

Ruth Chadwick
Over ten years ago, 1997 saw the publication of The Right to Know and the Right Not to Know, edited by myself together with Mairi Levitt and Darren Shickle (Chadwick et al. 1997). Although it was in fact one of the outputs of the Euroscreen project funded by the European Commission (Euroscreen 1, 1994–6; Euroscreen 2, 1996–9), it had not been planned at the outset: the theme emerged from our work towards other objectives. Explicit discussion of this theme, although discussed in relation to specific dilemmas, for example, concerning what circumstances, if any, justify disclosure in genetic counselling, was at the time less prominent than it has since become. In this chapter I attempt to outline the main trends and ways in which the debate has moved on in the intervening time. These ways can, I think, be classified into three groups, arising from changes in context, changes in issues and changes in ethical approaches.

Changes in Context

The first contextual change that must be mentioned is the completion of the mapping and sequencing of the human genome. This is important for the right to know and the right not to know in at least two ways. First, attention turned to the significance of the information that had been produced, and also returned to issues of genetic determinism, The discovery that humans have far fewer genes than had previously been supposed – only about 25,000 instead of 100,000 – led to the suggestion that genetic determinism had been proved false, in so far as the genes themselves could not explain the complexity of human beings. Any discussion of the right to know and the right not to know has to have regard to all these issues as a backdrop, because if genes did determine then that might affect the arguments concerning rights to know and not to know. In addition to the human genome, the sequencing of the genomes of other species has facilitated the development of comparative genomics, which affects the context in which we come to terms with information in the human genome.
The second contextual factor is the development of new or enhancement of existing technologies. There have been developments in preimplantation genetic diagnosis, but also considerable advances in sequencing technologies, facilitating multiplex testing and the move towards whole genome sequencing of individuals. Thus the scope of what can be tested for and when has been considerably enlarged.
The third contextual factor, which has arguably affected the debate as much if not more than any of the others, has been the development of large-scale population genetic research involving the establishment of biobanks. Alongside the much discussed national initiatives planned or launched, for example in Iceland, Estonia and the United Kingdom, there has been increasing recognition of the scale of biobanking of different kinds, including disease-specific collections, regional collections and international initiatives. In addition to biobanks that include sample collections, moreover, other kinds of databases have to be considered, such as those involved in the Human Variome Project, examining the mutations in the genome. The Ethics Committee of the Human Genome Organisation defined a human genomic database in the following way, which makes clear the variety of databases that might be at stake:
A genomic database is a collection of data arranged in a systematic way so as to be searchable. Genomic data can include inter alia, nucleic acid and protein sequence variants (including neutral polymorphisms, susceptibility alleles to various phenotypes, pathogenic mutations), and polymorphic haplotypes. (Human Genome Organisation 2002)
These developments have at the very least added a new dimension to the right to know and the right not to know discussion. The general features of the change might be characterized in different ways. Elsewhere, I have written about the move out of the clinic and into the public arena; the move from ‘I’ to ‘we’ in discussion of the issues (Chadwick 2004). The ongoing tension between the interests of the individual and the collective has been played out afresh in relation to biobanks. It has been suggested that as far as ethical discussion is concerned, the traditional focus on the individual has been replaced by a new focus on public health ethics (see, for example, Knoppers 2005). This claim needs to be treated with caution, especially in its relevance to the topic of this chapter. There are other reasons, beyond public health genetics, that account for a greater focus on public health: concerns about the rising incidence of obesity for example. Beyond that, however, bioethics has arguably always dealt with public health issues: the ongoing debates about allocation of health care resources are a case in point. The debates about the scope of bioethics aside, however, it remains the case that discussions of biobanks and ethics have challenged ethical thinking in relation to the rights claims of individuals. This trend promises to become even more intense in line with developments towards the linking of national biobanks to form international initiatives. These at the very least add a layer of complexity to the protection of the individual rights at stake.
The fourth contextual change to which I wish to draw attention refers to social and political developments beyond the genome itself. This has at least two aspects. First, in the post 9/11 world, concerns about security have had a significant impact upon debates about privacy. The extent to which there can and should be a tradeoff between privacy and other values such as security is a live issue not only in genomics but also in relation to such developments as biometric identification technologies. This is requiring scholars to revisit the concept of privacy itself.
Lastly, but not least, the extent to which debates about science have become public debates, has increased over the last 10 years, with the increasing recognition that public engagement should move upstream. This phenomenon is related to the right to know/not to know debate in so far as the public or different publics might claim a right to know what options are on the table at a much earlier stage than the downstream offer of a test. Rather, it might be argued that their awareness of, and input to, the discussion of the relevant issues should take place at the stage when decisions are being taken about research that will ultimately lead to the offer of particular tests.

Changes in Issues

Despite all these changes in context, it would be inaccurate to say that there has been a wholesale change in the issues now being confronted regarding the right to know and the right not to know – some of the dilemmas remain in place – the issue of what to do in the light of a finding of non-paternity, for example, remains. It is important to recognize, however, the areas in which new issues have emerged.

In the Clinic: Carrier Status

As regards issues in the clinic, a question that has become more prominent relates to carrier status, in relation to both newborn screening and preimplantation diagnosis. In the past, carrier status was largely of relevance to the reproductive decisions of couples. They may have wanted to know their carrier status before proceeding to a pregnancy, or, if both were carriers, have been anxious to find out if a foetus had inherited a recessive gene from both parents. A termination of a pregnancy would not typically have been sought, or even been an option on the table, for carrier status. Where preimplantation diagnosis is available, however, the selection of an embryo without carrier status is a possibility. This is even further away from the idea of having the children God gives, spoken of eloquently by Jørgen Husted in the 1997 volume (Husted 1997), than was previously the case. The more that carrier status is held to be relevant in contexts such as this, however, the more it may appear to be relevant in others. Thus in the case of newborn screening there is an issue as to whether parents have a right to know the carrier status of their child, even though the rationale for newborn screening is to detect conditions for which early treatment can be offered. The issues surrounding newborn screening, whether or not for carrier status, are also affected by developments in multiplex testing – to what extent is the parent’s right to know, as well as the child’s present and future rights, related to the range of conditions for which screening is offered?

Biobanks

In relation to population genomic research involving biobanks, one of the most prominent emerging issues has been the extent to which individuals have the right to feedback regarding results from research on their samples. There are at least two distinct questions – the actual policies of biobank initiatives, on the one hand, and the principles involved, on the other. Biobanks in different countries have taken different stances on this, so the discussion here will be limited to the kinds of arguments appealed to. Considerations in favour of the view that individuals either do not or should not be regarded as having such a right include, first, that the information is likely to be of little value to the individual. Raw research data may not provide information of any real benefit: it may be unclear what the significance is. From an ethical point of view, an argument against a right also follows from the informed consent, involved – if individuals have agreed to participate knowing that there is to be no feedback, then they do not have a right to it – there is no legitimate expectation of a contractual or quasi-contractual sort. Based on considerations of this sort, there is a view that information provided about research on samples provided to biobanks should be limited to general research results, and not to specific information.
On the other hand, however, whatever the facts of the informed consent, there is a moral argument for a residual obligation to offer feedback of the following sort. If A has information which could be potentially life-saving to, or even significantly relevant to the future health of, person B, then A has a moral obligation to offer that information. While this could be argued against by appealing, for example, to a purported moral difference between harming B and not going out of one’s way to help B, the context in which the information is sought and possessed arguably affects the issues. These individuals have volunteered to participate for the public good – if information is discovered which is material to their welfare, to withhold it could be construed not only as an omission but also as a harm. If they are displaying solidarity to their community, are there not moral considerations of solidarity for supporting them in return?
This discussion is integrally linked to another, the issues concerning how information gathered by biobanking initiatives is held and stored, including the specifics of anonymization and coding. Much has been written about the very confusing terminology surrounding these questions (Knoppers and Saginur 2005). Simply, the main issues relevant to the right to know and the right not to know debate turn on the extent to which it is possible to link data to identifiable individuals. If it is not, then the previous issue, concerning feedback, would not even arise, for it would not be possible to trace the particular individual involved.
If samples are completely anonymized, and it is not possible to link the data to be gleaned from them to individuals, then their value in research terms is considerably reduced. But as has been frequently pointed out, where DNA is concerned there is no such thing as complete loss of identifiability – DNA is, after all, despite ongoing debates about its usefulness in the forensic context, one of the primary identifiers, if not the primary one. It has been argued that, while it is commonplace to promise privacy to those who contribute to a biobank, in exchange for their participation, this is a promise that cannot be kept, because of the inherent properties of DNA in relation to identification mentioned above, in addition to increasingly sophisticated techniques of data mining (Lunshof et al. 2008).
Where there is less than complete anonymization, however, another issue arises, beyond that of the individual’s right or otherwise to feedback on their data – and this is the question of who else has the right to access the data. There are questions here about, for example, the access of commercial companies and other third parties to data that have been collected as a public resource.
What of the right not to know in relation to population research? This might appear to be a non-issue – it appears from what has been said already that as far as the individual is concerned, the burden of proof is upon those who would seek to know, or seek to disclose, rather than the other way round. However, this is not clear cut. In so far as population genetic research produces results which characterize groups in particular ways, then individuals may be made aware of factors which they would have preferred not to know about, in so far as they identify with a group in question.

Identity

These considerations raise the very large issue of the role of identity in the right to know and right not to know debates. It was suggested in the 1997 volume that there may be a right not to know genetic information on the grounds that it may constitute a threat to the individual’s sense of their identity. Despite the fact that genetic determinism has taken a knock in the light of the results of the Human Genome Project, genetic information may still be perceived as a very important constituent of individual or collective identity (Chadwick 1999). Developments in the last decade have arguably added new ways...

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