Maartje Schermer

Comments on ‘Genomics, ethics and identity’ by Ruth Chadwick

Prepared for the workshop Ethics and Technology

Twente University, 30 – 31 January 2004

Maartje Schermer

Ruth Chadwick has written a very rich paper and she raises a lot of interesting points about ethical issues in genomics. Actually, many of the issues she raises would merit a whole paper or discussion of their own.

Of course I will only be able to focus on some of the points she raises here. In choosing which of the points to pick out, I have taken the theme of this conference as a guideline. So what I will do is, I will try to focus on some points that, in my opinion, are relevant for technology ethics in general. An additional reason for this choice is that I must admit that I am not very knowledgeable on the subject of genomics and the recent discussions in this field, although because of my medical background I know a bit about genetics. But I do not really feel informed enough to go into detailed discussion about the technicalities of genomics.

I will start off with a question of understanding. The title of the paper is ‘Genomics, ethics and identity’ and although a lot is said about genomics and about ethical issues in genomics I am not quite sure if I have properly understood why exactly ‘identity’ is such an important concept or issue in relation to the problems discussed. In the introduction, Ruth Chadwick says that “what is needed is attention to notions of identity in both the individual and collective context.” What she hints at, I think, is first that we should understand ourselves not only as individuals but also as members of a collective, of a certain group. And perhaps, it is also suggested, this idea of what group we belong to will also be influenced by genetics, for instance where genetic family relations are concerned. However, there are also some interesting remarks about the way in which genomics may influence our individual choice of who we want to be; and about the way in which character traits might be in part determined by our genes.

With regard to collective identity Ruth Chadwick seems to suggest on the one hand that we need such a notion of collective identity, or that we need to develop some kind of collective identity. At the same time however, she expresses some severe doubts – which I happen to share – about the possibility of such a collective identity. We may not have relevant notions of community available, and it is not clear how we could go about developing anything like it.

All this has left me a bit confused about the role identity plays here. While I believe I have some hunch of where you are aiming at, I do not yet understand fully what you mean with identity, and I do not yet see the necessity of paying attention to identity in this context. In what ways will a notion of identity solve problems that we cannot solve in other ways? Where exactly does identity matter for the moral questions that genomics raises? I think it is a very interesting point, and I am very curious to hear some more about this.

Now I turn my main remarks. I’d like to focus first on the notion of genetical excpetionalism – the idea that there is a fundamental difference between genetics and other areas of medicine. I want to focus on this because it seem to me an instance of the kind of issue that frequently pops up in debates over ethics and new technologies in general and that is: is a technological development new or not? Is it really different, in some essential or important way, from what we have known before? Will it really alter our practices fundamentally?

Connected to ethics, this question about the unique, new or exceptional character of technologies is often connected with moral judgments.

New technological developments or technical possibilities that are seen as really new and importantly different from the things we know often evoke moral objections. Really new and different technologies, things we do not yet know, tend to raise the question of whether we should allow such a new technology, or whether we should want them.

On the other hand, the view that a new technology is ‘really not all that new’ is often connected with the judgement that it is therefore morally unproblematic. This is know as the argument from precedent. If there is nothing new under the sun, if it is only ‘business as usual’ there is apparently no reason to raise moral doubts. We already allow technology X, which is similar to this new technology, so we should accept this new technology as well, or we can deal with it in familiar ways – or so the argument goes.

In this sense I think that genetic exceptionalism is an example of an issue that can be recognized in other fields of technology as well.

What I find very good about the paper of Ruth Chadwick is that she does not get stuck in a kind of does-does not discussion about the truth of the thesis of genetic exceptionalism.

Rather, she points out some ways in which genetics is similar to other, more traditional forms of medicine, and ways in which it is indeed different. Some of the moral problems genetics or genomics raises will therefore be relevantly similar to problems we already know, like those of predictive medicine (although I belief we do not know sufficiently about these problems either).

In some respects, however, Ruth Chadwick claims, genomics is really different, and will therefore raise new moral questions. Actually, and even more interestingly I think, see says it requires new theoretical resources’ (p2) or ‘new paradigms in ethics’(p5).

More specifically, we need to think again about individualism and we need to consider group interests rather than focus merely on individual interests and choice.

She takes genetic databases as an example about how we could think differently about genomics research than we have been thinking about regular medical research. One way, she suggests, in which we can look at the area of genomics research differently is by invoking principles of equity and solidarity rather than informed consent and individual benefit. For example, the Ethics committee of the Human Genome Project has addressed the issue of benefit sharing: should not participants in genomics research share in the benefits? And from considerations of solidarity: should there not be some kind of duty to facilitate the progress of such research, which is in the common interest?

But here I begin to doubt the special status of genomics. Why should we not ask exactly those same questions about equity and solidarity, and make exactly the same shift in emphasis where ‘regular’ medical research is concerned? What is so special about genomics research that participants should be granted benefit sharing, while participants in regular clinical trials do not get such benefit shares?

I do not mean to suggest that the shift towards equity, or solidarity, or collective interests is mistaken. But it is not directly clear to me why this should be an issue in genomics research and not in other types of medical research.

For the discussion, I would like to make two points here. First: is this shift toward collective interests and principles of solidarity and equity, really called forth by the technological developments of genomics? Is genomics so different that it raises these issues, while regular medicine does not? Are these issues intrinsically related to the type of technology that genomics is? The other possibility would be that issues of equity, solidarity and group interests are becoming more prominent on the ethical agenda anyhow, under the influence of many other developments. Perhaps as a result of the critique on the excesses of individualism and the discussion on the over-emphasis that autonomy and individual choice have received over the last decades. Care ethics for example has also criticized a strong opposition between individual and collective. There are also other technological developments that put notions of equity and solidarity higher on the agenda. For example in the field of transplantation medicine, where solidarity plays a role, and where the notion of the gift is important. The recent possibilities for live donation – that is, donating a kidney to a family member or friend while the donor is alive – have put the tension between individual interests and others people’s interest on the agenda. Moreover, the idea that donating your organs after your death is something you ought to do morally, because of reasons of solidarity, appears to be growing, at least in The Netherlands.

So, I wonder whether genomics is such a special technology that it is evoking this new moral framework, or whether it may only be a more or less ‘accidental’ technology on which these emerging ethical notions are easily applicable.

My second point is this; if we grant that these notions of solidarity and equity are emerging, for whatever reason, in the field of genomics; and if we assume that the difference between genomics and regular research is not all that great, than we can use what I would call an inverted argument from precedent. These new ethical insights from the field of genomics may be applied in other, more familiar fields as well. We might start to wonder, in retroaction, whether we have been right to put all emphasis in regular medical research on informed consent, and on individual risks and benefits. We may have neglected the solidarity and equity dimensions there as well. Because many participants in regular clinical trials do not gain any individual benefit from their participation, but do help others by furthering research. Especially in phase II studies, there is no benefit to be gained for the individual patient. Participation is such research is only done because of the benefit it might, in the long term, bring to other patients. So, notions of solidarity are important here. And with regard to benefit sharing, someone recently said to me that she found it strange that everyone involved in a clinical trial makes money of it, except for the patients.

In summary, I think questions about the connection of new technologies with new ethical frameworks is an interesting one for technology ethics in general, and so is the issue of the applicability of new ethical notions, on established, familiar technologies or practices.

I will now turn to another issue, namely that of shifting responsibilities. Shifts in responsibility are an issue with many new technologies. Knowledge and new abilities make people responsible for things they were not responsible of before. This is a common issue in technology ethics, and it is illustrated very well by examples from genomics.

For example, Ruth Chadwick describes that the choice to be a kind of person who ‘likes to take things as they come’ may become less available by the increasing possibilities for genetic testing. Once it is possible to test for a genetic disease, it may be more difficult not to take such a test. It may even be regarded as irresponsible not to do so. This is comparable to developments in prenatal testing, for example. Thus, genetic testing, like other technologies, may change our views about what is ethically acceptable, and for what we are responsible.

Likewise, the possibility for setting up genetic databases and doing research with them, appears to make us all responsible for participating in such research. It may become a moral failure not to do so, because obviously it is for the common good. It is interesting to consider how such new responsibilities relate to other, more traditional moral considerations. Take, for example, the right not to know, which Chadwick also mentions. This right has just been established in discussions about genetics testing, but at the same time we can already see the limits of this right emerging. For as long as there is no proper cure for a genetic disease, we believe we have a right not to know whether we are suffering from it or not. However, once cure or treatment becomes available, or once changes in life style can be shown to affect the outcomes of a genetic disease or a genetic predisposition, the right not to know becomes doubtful. For example, someone who has a genetically determined susceptibility to develop lung cancer for smoking, such a person may be even more responsible than the average person to prevent risks and stop smoking. Does such a person still have a right ‘not to know’? In light of recent discussions about individual responsibility for the consequences of unhealthy behaviour, the right not to know may be under severe pressure in such cases.

Another point about shifts in responsibilities is that in the discussion about technology and responsibilities, it is sometimes depicted as if technology is throwing these new responsibilities upon us. Like it is something that technology does – giving us responsibilities, instead of something we do ourselves – assuming new responsibilities. In the paper of Ruth Chadwick, I think it is very interesting to see that she is actually working hard to develop a new moral framework, to create new moral norms, and new responsibilities, with regard to participating in genetic database research. By introducing notions such as equity and solidarity here, she is actively changing the moral frameworks. This is clearly one of here goals of her paper. I think this shows that ‘technology’ is not in some mysterious way creating new norms or new responsibilities all by itself. We – as humans but especially as ethicists – are actively working to adapt our moral notions to our technological developments. So, new responsibilities are not created by new technologies as such, but also by so ourselves, by our choices and argumentations. And I think technology ethics is actually about developing new moral notions along with developments in technology.

Finally, I would like to finish my comments with one more question to Ruth Chadwick, which is actually a bit of a worry.

Chadwick calls for more public influence in genomics research and introduces the idea of developing a form of ‘community consent’. My question is: does this mean that these should be regarded as alternatives to the common practice of individual informed consent?

I will explain myself by borrowing the terms of Hirschman, exit and voice: it seems fine to me to give people more voice, especially on the institutional and policy level, in determining how genetic research should be conducted, under what guarantees of privacy, for what purposes and for which not etc. More public participation and ‘voice’ would also be desirable for regular medical research, by the way. But this does not in my mind mean that this could be a complete substitute for individual consent in every case. I think that on the individual level the possibility of ‘exit’ should be left open.

So is there still a place for individual consent to participation in genomics research, or should this be replaced completely by other mechanisms?