Fertility practices in different areas of the world. Is it an ethical or social concern? Possible pathways to consolidate ideas in unregulated countries.
Discussion with Professor Martin Johnson and Dr. Lucy Coleman
By Dr. Lucy Coleman
On April 2013, I decided to pay a visit to Prof. Martin Johnson at Cambridge University. He has had a broad trajectory in the fertility field, and is one of the original developers of the guidelines for the Human Fertilization and Embryology Authority (HFEA).
Prof. Johnson is also one of the editors of Reproductive BioMedicine Online (Elsevier).
I was interested in his view with relation to the matter of the developing of guidelines for countries with no regulations in the practice of fertility. It was a very interesting interview and we had the chance to discuss several controversial topics (some of them mentioned in another article), and his suggestions were very useful. I recommend it to all professionals involved in fertility practices around the world, especially in unregulated countries, to read these recommendations.
Lucy: What is your vision of Fertility Practices in Europe in comparison with North, Central and South America?
Martin: I don’t know much about America, so I can’t comment. I usually hear different things from different people. Some people tell me is completely unregulated and market driven. Others tell me there is quite a lot of supervision and people are not free to do what they want. In Canada I don’t think it is much regulated because they had some ideas that they later dropped. Canada is different from the USA or the UK, although I don’t know the extend of which people are still trying to work within what they thought were the legal guidelines. So I know a little bit more about Europe. As you know in Europe there are different sources of regimes, very strict regimes like Italy and Germany, which are very much more restricted in what you can or can’t do. And there is a very liberate regime like Spain which is relatively free. They are regulated but not that much. And there are countries like the UK, which is kind of like in between. The UK, which I know most about, it is sort of hybrid because they are state regulated in most of private clinics, so there is a tension there, because I think at the moment doctors are doing things for money, and that changes the whole approach to things. In most of this country, traditionally, there has been a nice health service that has a more social view of things. The current government is trying to do much more in their economic model, and it has been having several consequences to doctors and their thinking. I noticed more medical students today are more inclined to make money rather than to help people, so that is an adverse change. I guess it is like that in countries like Venezuela. So I think there is a real issue there. If you have private medicine on the market, that will empower a market value, rather than ethical values. I am not saying the market value is unethical, but they certainly have a very different vision of things, rather than moral and social ethics. So that is a problem, you see. Talk about ethics can make us think in countries like Italy or Germany, which are driven by catholic ethics, which are very restricted, and it is pressing on individuals. In Germany it is partly catholic ethics. In the UK there is a tradition of pragmatic ethics, so you look at the consequences more, you say if you do this or that, or if you do not do this or that, then which is the better of both, and how can we find a happy way through. So there is an attempt to try to find a middle way through, and still protect the vulnerable parts involved and it does it in a way that prevents too much happening. For me that is the best form of ethics, because there is a social way through, but it does not necessarily say what doctors should or not do. For example, this week the HFEA announced something about mitochondrial replacement by nuclear transfer, and if it wishes to go ahead the HFEA will not change the regulation to allow it, but they will pose some conditions and the government has to respond to that. But that is a sort of middle way really, a cautious way. They think they do want to forbid it instantly but have some people supervise it, until they can see if there are consequences or not and if it is working well. That is the general model, I think the UK it is a control-limited freedom. You encourage people to be autonomous and informed, and protect them from people that might choose to restrict that autonomy, or restrict their information. However, that can be done only to a certain extend. I don’t think there is anyone right system, but I do think you always have to consider the true autonomy, and the social good, and you got to balance the two of them. I have written quite a lot about it. I can’t impose something to society. The ideas need to come from society not to be imposed to them. Because how can you verify something is right or not?
Lucy: Should we be getting ideas and tips from places where regulations have already been implemented?
Martin: The thing is that if you say this is the way we are doing it in Italy, this is the way we are doing it in Germany or Spain, they are doing it differently in these places, and that would be useful, and that should be the way of starting on thinking what we should do in Venezuela or any other country; what examples we like, what we don’t like, rather than being restrictive, it has to come from a consensus discussion. And that’s what happened here, we had various commissions, we had parliamentary debates, we still do, and we try to arrive to some consensus, which sometimes not everybody would agree, there are always people that wont. But broadly speaking you are holding some sort of consensus.
Lucy: Do you usually invite people who are non-members of these organisations to participate on them?
Martin: Yes, there is an organization called Progress Educational Trust, which is involved in those meetings with different issues to discuss. I was an adviser in meetings in the House of Commons in 2007 for the HFEA for revisions, we had public hearings, and experts were invited from churches, from medical organizations, so the committee listens to everyone and came up with certain conclusions based on this. It was argued from some sort of evidence and discussion, and that has been a tradition that we have on this issues from the outside. The general public was also involved in the whole HFEA creation. I used to go on TV and radio, women’s institutes, teas, lunches, and I went to talk to people. One of the issues was if embryo research should be allowed, and what do we mean by embryo research first of all. Secondly what happen if we can do it or what happens if we can’t do it, and the consequences. Some people say “I don’t like the torture of embryos” and I explained them about it. You make them think about it by introducing them to think on the importance of discussion; if they are more informed they will not react from their gut. It is good to give information and alternatives to the public. So if you do embryo research you do have to do x or y thing, if you don’t then you still have to do x or y, so you might end up doing experiments on the woman you are putting the sperm back into so why not doing it on the embryos themselves? When you put it like that to people they will understand. Also, many people think when you say embryos you mean fetuses, which is very different. So we had a big campaign for every time we used the term embryo research people thought we were talking about research on fetuses. We used to show them pictures of blastocysts or morula. Gradually all the broadcast changed over and what people thought was a little baby we were talking about it was not. That was an important step. So it is about educating, informing, and also engaging people in discussion, and getting them to think about it, turn it into common sense. In essence, that as well is presumingly very catholic.
Lucy: That is true, as is the case of abortion after genetic testing, in that it is also a very sensible subject because catholic population is not in favor of abortion. If a patient has genetic testing and do not wish to have the embryos implanted because of the sex of the embryos, or any chromosomic disease, then the remaining embryos need to be discarded which is against catholic beliefs. Abortion is against the law in Venezuela; however, until what extent can we deny patients their right to decide? It is a controversial subject. For example, Venezuela has issues with doctor-patient communication. Patients need more information regarding their treatments, and the availability of options.
Martin: there is an interesting book by Jazanoff from 2005, which you need to read. She compares Germany, USA and the UK in several areas including reproduction, and she looks at why the regulations are so different in every country. She looks at the cultures, and where the cultures come from. So as Venezuela it is presumingly a mixture of US that might apply to a few of the things on the book.
Lucy: Certainly we are still working hard in establishing regulations and protocols that will help doctors and patients to understand a lot more regarding reproductive medicine. There are many more things we need to work on in the future. This interview is very important because of your perspective and experience with guidelines such as the Human Fertilization and Embryology Authority (HFEA). It is a great example of integration and teamwork using the resource of information.
Martin: The organization in this country did start as a voluntary organization, and the reason was because the people were so worried they didn’t want the reputation. You can perhaps start a special study group in fertility. You can look back at the voluntary model of the authority, and use it as your model. The right starting point is how can you go and set up something that might have a chance of working, so you got that set up in a way that looks at the information, and ethics, and sit to discuss it with the public in general moving towards a broad consensus and approach which might be very different from here. Maybe more like Italy, since it is a catholic country. It might or might not be what you want to, but you can’t impose it. It is a way of setting your own ethical standards.
From this interview we can understand the importance of involving people with decisions and innovations with vital importance for the establishment of regulations, and possible legislations in different countries. Ethics, religions, politics, and personal beliefs are the main factors playing a decisive role in the type of protocols to be used in Reproductive Medicine today. Even when science should play a central role in the type of decision made, it still has to be bypassed by these other factors.
We are entering into a new era of advances in the areas of genetics, fetal medicine, and embryology. There are many advances about to come, and the general public needs to be involved in this process. It has to be a group decision. The initiative needs to come from people involved in several areas as a whole. This is the path to engage in the creation of regulations that will eventually convey most of the factors involved in society. This way everyone can be part of this new era of technology.
Governments, doctors, religious groups, patients, ethical committees, and representatives of the general public can start with building discussion groups and meetings. It is a wise starting point because information is the key. If protocols and methodologies are well discussed, then the regulations will start developing with more freedom, exchanging views, and with respect to suggestions from all parties.
This is possible with organization and respect of different points of view. I am sure many countries are starting to apply their own methods to establish more control in their practice of reproductive technologies. Some countries are still trying to find their own procedures, and others might already have good ones.
It is advisable to learn from the ones who had already found their way, and adapt to the convenient guidelines based on the welfare of patients and their beliefs, and this is achieved hearing what people need to say.
Our main goal and priority as professionals in reproductive medicine is to create healthy babies in healthy tiny human makers, and to do so in an honest and open way. Regulations bring trust and provide scientific guidelines about procedures and protocols, and this is a great resource in this field.