What I mean when I use the word “ethics”May 6, 2009
Refusing and “choosing” treatmentsMay 30, 2009
Assisted reproduction, ethics and values, power and control.
Two recent cases of assisted reproduction have recently been all over the news. In one, Ranjit Hayer a sixty year old gave birth to twins in Calgary and in the other Nadya Suleman, a thirty-three year-old gave birth to octuplets in Los Angeles. Both cases have sparked a vigorous ethical debate which frequently contains the phrase – “We can – but should we?” Well, who is the “we” and how should “we” decide?
In the two cases concerned the women decided that they wanted to have children. They were both unable to conceive in what we shall call the “regular” fashion so they both sought assistance. In the case of Ranjit, she had been denied access to assistive reproductive services in Canada, and so had sought and received those services in her native India. She then returned to Calgary to give birth. Nadya, who describes herself as always having wanted to have a “huge” family, already had six children, apparently conceived with the aid of donor sperm, and possibly with the assistance of reproductive technologies. (The details are not clear: http://www.nationalpost.com/news/story.html?id=1256913). So, back to our question, who decides – and how? The women have made up their minds, can anyone “second-guess” their choices? I think this is an important question. Is anyone entitled to say – “Oh, no, you shouldn’t want that?” Do the person’s reasons for wanting what they want matter? In one case there is a well-established cultural and religious value placed on bearing children, in the other there is a perhaps idiosyncratic desire to have a “huge” family. Do those reasons matter? I am inclined to think not… or to put that in a different way, it is not clear to me how anyone could substitute their values for the values of the women concerned. I might not think it is a very good idea to have fourteen children, but I accept that some people do – and I also accept that some religions encourage large families by prohibiting some forms of birth control, but it is not clear to me how I could possibly be entitled to impose my value system on anyone else. Similarly for Ranjit and her decision to pursue pregnancy at her age. It might not be what I would pick – but how does anyone, in a democratic and pluralistic society say to another person – you ought not to want that?
Diversity of values
This topic in general ought to be the subject of another post (or maybe of a book). But it is worth exploring it just a little. We can identify the views at the two opposite poles. One view is that there is only one right way to live, only one right set of good values, happiness is only to be found in conforming to one way of life and so on. At the other pole there is the view that anything goes, that any form of life can be a good life, that there is no single set of values – rather that any set you choose is right or good (perhaps “right or good,” just for you). Neither of these polar opposites is satisfying. The single set of values view excludes difference, seems manifestly too restrictive and seems to lead to intolerance, and a lack of respect for the others who do not hold that view. But on the other hand the anything goes view seems empty and unsatisfying too. As you look around the world it seems pretty clear that some ways of living are better (whatever that means – more satisfying to the people concerned, more “productive” happier, richer – not just in a material but also in an emotional or even spiritual sense) than others.
So what is the middle way? Are there some values, some ways of living that are somehow required for what the Ancient Greek philosophers would have called “good lives”? Is it possible to describe some sort of set of core values – that are necessary for any human being to lead a good life, and which in turn leave scope for authentic choice? Can we combine some shared understanding of good human lives with genuine freedom and respect for difference? As you can probably see – I obviously believe that we can – in fact this blog is one way of trying to work that out through an extended discussion. Any of the issues we will end up discussing will be debatable. There should be differing views and there should be good reasons for choosing one, or the other path. The blog is intended to give space for those opposing views – but then to try to work through to outcomes. In health ethics these debates are not idle discussions, people will act, one way or the other and the outcomes matter. I’m sure we will come back again and again to the core conceptions of good human lives and the values such lives must contain – but for now debate, enquiry, discussions and reasons will have to suffice. I think we can make choices, and I think we can make those choices on good grounds. I think we can give reasons for what we do – and that reason giving and seeking is at the heart of a good life, at the centre of good relationships and at the foundation of civil society. So let’s get back to assisted reproduction.
Power and authority
The trouble with any of the really interesting topics is that as soon as you break the surface you find a host of things that need exploring. Let’s look at power and authority. I, personally, would not choose to have fourteen children. But some people would. I can provide some reasons (pretty good ones I’d say) why I would not want fourteen children, but some of those reasons may well not apply to the people who want to have fourteen children. And, of course, the people who want that many children may well have reasons that I feel simply do not apply to me. We may have a discussion, we may each of us bring reasons to bear, indeed either one of us may persuade the other to our point of view, but what should be clear is that neither one of us has the power or authority to tell the other what to do. I, personally, cannot forbid anyone from having fourteen children and no-one else can command me to have that many. So far we have been speaking of relations between peers, a conversation between equal citizens each of whom has a “right” (we will certainly have to come back some time to “rights”) to his or her own opinion, and a “right” to father or conceive as many children as he or she wishes. Does anyone have the authority or power to tell others what they can do in respect of fathering or conceiving children? In most circumstances the answer is no. In our society no one, generally speaking, has the power to tell another that he or she cannot conceive. We might try to persuade, and the community may try to educate – that is to share good reasons for doing one thing rather than another, but there is not the power or authority available to coerce or compel. At least that is true of conception in the ‘regular” fashion. In the case of assisted reproduction, however, the situation is different. In this case a medical professional is required to perform the process. Does the medical professional have the power or authority to impose limits or conditions as they assist reproduction?
Power and authority and medically assisted reproduction
It is probably worth making a distinction at the outset of this section, between procedures that are funded from the public purse and those that are paid for privately. If the procedure is funded by the state, in one form or another, then the state – or better the community that it represents is entitled to determine the conditions under which the service is offered. For example, the state might say that it will only fund two cycles of embryo implantation, that it will only fund the implantation of one embryo, and so on. In addition, the medical professionals are entitled, indeed are required, to determine the medical conditions under which the service is offered. In some cases there may be conditions that would make the procedure have a very low likelihood of success, or there may be underlying medical reasons that seriously endanger the life or health of the mother or foetus. We should go slowly here because I want to make a distinction between what I would like to call “medical” reasons for not permitting the procedure and what perhaps we will call “social” reasons. The reason for going slowly is that I don’t really have the best language to capture a distinction that often gets blurred in practice.
So, for instance, a medical reason for not performing a procedure is that it will not work (it will not bring about the effect for which it is intended, it is “futile” or more precisely “medically futile”) indeed this is the very best medical reason for not doing something. By contrast a social reason for not doing something might be, in the case of assisted reproduction, that the recipient is not married or is gay, or comes from a lower socio-economic group, or… Now, this distinction and this discussion should be beginning to make you uneasy. Clearly the medical professionals have the authority, the right, indeed the obligation to make the decisions of medical appropriateness of the procedure (or otherwise.) Do the medical professionals have the right or the authority to make decisions on other, what we have called “social” grounds? Clearly, in asking the question I am answering it. It is certainly not clear to me that the medical professionals have the authority to make decisions on “social” criteria. In fact, when they do so (and I should probably include myself here as a professional working in health care) when we do so, I think we grievously overstep our authority.
So who does have that authority (if anyone?) The funding agency might have that authority in some cases – however, when the funding agency is the state and when the state has bound its actions through the Charter, there are important limitations on the restrictions that it could impose on the procedure. And if the procedure is self-funded, what authority would the state have to intervene in the private lives of private citizens?
Back to our cases
Ranjit, the sixty year old was denied access to assisted reproduction in Canada. On what grounds was she denied? Would it be legitimate to deny her access to those treatments simply on the basis of her age? That seems like a social reason rather than a medical reason. Could such a social reason be justified by a funding agency? I’d say yes, but not just for a procedure like assisted reproduction. There are all sorts of medical procedures where the benefits that would accrue from the procedure are less because of the age of the person concerned. A funding agency could decide that spending resources in this area was not the best possible use of those resources (given the competing demands for those same – inevitably scarce, resources.) Clearly this is contentious – and it is a topic we will have to come back to, however, the key point I wish to make here is that whoever is making the decisions on our behalf, we, as a community, ought to be clear about the nature of the decision to be made and the criteria for making those decisions. Do social reasons, like age, sometimes get fudged as “medical reasons?” I’d say this happens far too often and we would do well to look out for the tendency to medicalize issues that are properly social – or value-based. What about Nadya and the octuplets? Here the reasons for not proceeding look far more clearly medical. The likelihood of unhealthy babies in this situation and the likelihood of severe health consequences for the mother seem far more obvious. I cannot speak for the specialists in assisted reproduction, but it seems at least possible that reasonable experts in the field would rule—on medical grounds against proceeding with multiple implantations on this scale. (This raises another issue – which we will have to leave for another time. In the US context the client in this case almost certainly would have paid for her own procedure. Would that entitle her to tell the physician that she was prepared for the personal risks associated with the multiple pregnancy and birth or does the physician have some sort of higher “fiduciary” duty not to participate in actions he or she deems to be wrong on medical grounds?)
I’m not sure I have a single conclusion. The two cases raise a tangle of ethical issues, and we have not really even touched the special nature of sexuality and reproduction and the historical issues of power and control over women’s bodies and their reproductive capacity. Perhaps the way I really want to leave this topic for now is that I think it is helpful to sort through the different types of questions these sorts of situations bring to the surface. We typically have a gut reaction – let’s challenge that reaction and see if we can work through to better conclusions. And, maybe, perhaps behind all of that, the price of freedom in an open and democratic society is that sometimes people will choose to do things of which we do not approve.