Oquirrh Institute

FALL MEETING IN NEW YORK CITY
AND BIOETHICS FORUM

Ethical Issues in Stem Cell Research
Josephine Johnston

Click here for Ms. Johnston's bio

Thank you. I always tell people when I give a talk in this country that I’m from New Zealand because I don’t want you to be sitting here for my entire presentation thinking, where is she from? I want to get that cleared up straight away. My focus is going to be on the ethical issue of stem cell research, bearing in mind that the line between an ethical issue, political issue, a policy issue and a legal issue in this particular discussion is fluid. All these issues come together so what I’m going to touch on may not be strictly ethics or law, it may be policy. We’ve called it all ethical issues but it’s broader than that. From my point of view what matters about stem cells is where they came from, what the source of the stem cell is. This is what interesting to me and from an ethical perspective, did they come from what’s called adult tissue, did they come from fetal tissue or did they come from embryonic tissues—did they come from embryos? Now each source is slightly more controversial than the previous one.

There is not a lot of controversy surrounding getting stem cells from adult tissue, by that I mean skin, blood from people like us but also it could be from children. I put adult, it doesn’t mean they are adults just not the other two forms of tissue. You can get stem cells from fetal tissue following spontaneous or induced abortions and this is a more controversial topic but it hasn’t received a lot of attention in the press. It’s also not receiving a lot of scientific attention and there were in the 1970s a lot of issues in the United States around the use of fetal tissue in research and there are federal funding guidelines that are very detailed that govern how this kind of research would go forward. For one reason or another that is not the focus of the debate. The focus of the debate is on the use of embryos. Either fresh embryos by which I mean embryos that have been created in the lab and then are used more or less immediately after being developed to the stage called blastocyst which is around 6 or 7 days of development. So those are the fresh embryos; all others are the use of frozen embryos so embryos are amazing unlike humans, you can freeze them and then when you thaw them they start up again. So that’s the other source.

Now I’m going to focus on embryonic stem cell research. I’m going to look at these issues here and I’ll just go through each one in turn. The immediate issue in the United States right now, should the federal government give money for research that uses embryonic stem cells or extracts embryonic stem cells? I should just point out that the United States government has never funded research that destroys human embryos. No federal money has ever been used for this research and that includes when IVF was first being started up and there was a lot of research on how our fertility works and how IVF works and this research is still ongoing. The federal government has never given money to this kind of research if it involves embryo destruction. Currently this policy of not funding the destruction of human embryos appears in what is called the Dickey Amendment. Now this is a provision that is attached to the budget bills of several of the United States departments including health and human services. When those budgets are passed every year since 1996 there as been a provision in this budget bill, in the allocations bill that says none of the money that is being appropriated to that department can be used to fund the creation of a human embryo for research, or to fund research in which a human embryo is destroyed. Every year that gets passed and that’s a constraint on what research can be done.

When President Clinton was interpreting this, the Dickey Amendment and what that means, he got a legal opinion that said while it would restrain him from funding any research in which human embryos were destroyed, it wouldn’t restrain him from funding research that looked at cells that had been taken out of those embryos, as long as he didn’t fund the extraction of the cells, he could fund the study of the cells once extracted. He made a policy for this but this policy didn’t get a chance to come into practice before the administration changed. When President Bush took office, he gave us a slightly different interpretation of the Dickey Amendment and his policy reflects his different interpretation of that.

What I want to look at, first of all, is this policy of President Bush’s. I’m just going to put up here what I see as the two moral arguments that President Bush was speaking about when he made this policy into 2001. He says in one part of his speech, “I’m a strong supporter of science and technology.” He also says, “I also believe that human life is a sacred gift from the Creator.” But he’s articulating to my way of thinking, two different values, two different positions. He values scientific research but he also values human embryonic life. What this led him to do was make a policy that says you cannot extract any new stem cells from embryos, and that’s in keeping with the Dickey Amendment. It couldn’t have allowed that, even if he had wanted to, but he went further than that. Also, he said, I’m not going to allow you to research the cells that have been taken from embryos unless those cells already were extracted as of today. So what he was saying is from now on you cannot destroy human embryos in research and you can not federal funds to research the cells that you take from those embryos. But if those cells have already been extracted in the past then it’s okay to use federal funds to study those cells. He did have some provisos on a particular part of this policy so you could only study existing cells if they had been extracted from what I’m calling here “spare embryos.” So embryos that had been originally created for fertility purposes but were no longer required by the woman or the couple for the fertility treatment. They donate those embryos to research—they get called “spare embryos.” (That’s my shorthand.) He said you could study existing stem cells if they were extracted from “spare embryos” with informed consent and there was no financial inducement to donate. What he did not do was place any limits, neither him nor in Congress, place limits on privately funded research. This is only about federally funded research.

And here is his articulation (referring to slide), I think, of how he played out those two values of scientific research and the value of the human embryo. This policy allows us to explore the promise of potential stem cell research without crossing a fundamental moral line, by providing taxpayer funding that would sanction or encourage further destruction of human embryos have at least the potential of life. So he didn’t want to do anything that might encourage people to destroy new embryos in the future. He is being criticized for this policy, as you know. He has been criticized from, it seems, two different sides. Some people say this policy that he made is too permissive. Too permissive because it allows some research to go forward that uses cells extracted from human embryos that, in a sense, that research is then capitalizing on what some people consider to be an immoral aid in the first place. Other people have argued that President Bush’s stance is too permissive because it doesn’t do anything abut privately funded research. It only extends to federally funded research, and so it allows a lot of stuff that’s going on completely unregulated.

Perhaps more vocal are those people on the other side who are arguing that the policy is too limiting, that it restricts research in a way that is wrong. So there are arguments that the policy is inconsistent internally. It allows some research to go forward on embryonic stem cell lines but others not to, dependant on the date, 9 pm EST the 9th of August, 2001, is the cutoff. Other people have argued that it restricts what’s coming to be called scientific freedom which I think is an interesting concept. We don’t actually allow complete scientific freedom. We certainly don’t allow a number of experiments on humans because we think that they are immoral or wrong, soon you can’t do experiments on people that are gene-related without their knowledge, that kind of that thing. So we do restrict scientific inquiry, but there is an argument being made that this wrongly restricts scientific freedom. That it harms the sick and disabled is another criticism. And I like this one a lot—this policy will mean that the United States falls behind other countries and I guess you don’t like to be behind anyone else. (Background laughing)

What these people are all saying in a sense, I think, is that when President Bush put the value of embryonic life above scientific research, people say he was wrong on the value of the embryo; got it around the wrong way. And that I think is sort of the core of the criticisms of the policy. And let’s just have a little look at this question. This is something about, which I think is free to say, there is persistent disagreement. What is the value or worth or status of the human embryo? Is it a person like you or me? Is it a potential person? And if it’s a potential person, what does that mean that we can or can’t do to it? Is it just a collection of cells like a piece of hair or piece of skin? Is it a symbol of human life and is therefore how we treat it symbolic of how we treat life generally? And there are many varied positions in between.

And I don’t have an answer to this question, but I think your views on this issue effect what you think about pretty much everything else that I’m going to talk about. Of course I also want to point out as you would have been able to mention, this topic is partly so controversial because it is seen to have a relationship with the abortion debate which is an ongoing and controversial issue. If you are in favor of stem cell research, then people might think, if you promote it, then some people think, oh that promotes abortion. Other people might think that if you ban stem cell research, you therefore are going to put the woman’s access to abortion at risk. So it’s this kind of relationship, but it’s not a complete map. You can be pro-choice and also anti-stem cell research. You can think that a woman should be able to have an abortion but you don’t think that stem cell is important enough to destroy human embryos. And Dan Callahan, who’s the founder of the Hastings Center, I think falls into this category. Or, you could be pro-life but also pro-stem cell research. You could be anti-abortion and think abortion is wrong, but you could think that stem cell research is good even though it involves the destruction of a human embryo. And I think that Senator Hatch is a pretty famous example of this position.

So the question with the abortion debate is not complete but these are related issues and I think that the abortion debate hangs in the back of a lot of our discussion. So I’ve discussed the federal funding policy, and it’s all very well and good and I think a lot of people in this country understand the federal funding policy as a ban on research in the country. I met a guy who runs a fertility clinic and is involved in stem cell research and he said that when he’s asking people if they’d like to donate embryos to research he has to spend quite a lot of time convincing them that it’s not illegal to do stem cell research. So, it’s not only not illegal it’s going on in this country. Recently Harvard University announced that it had derived seventeen new lines or new sets of embryonic stem cells which is about as many—it’s just under the amount of stem cells that are available for research under President Bush’s policy with federal money. So that’s a significant advance.

As we know New Jersey and California are among the states that are moving to fund the research themselves. Private donors are definitely funding, and that’s how everyone’s going to help. And there is also a considerable prescient for federal policy change, so we need to think a little further along than just whether or not we would fund this research with federal money and what the ethical issues are because it’s going on and the federal policy might change.

So what would be some of the ethical issues going forward? I’ve listed what I see as some of the ethical issues here, and I’m just going to go through them in detail. Before I go on, I think I need to just explain something about infertility research and the way that embryos are created in the lab, and Dr. Jaenisch has talked about how it happens with cloning but I just wanted to talk about it happens more commonly. So, and I know IVF is a very common form of infertility treatment. You collect the sperm from the man, which is not too difficult to do, and you collect human eggs from a woman. Now this is an extremely difficult procedure. If I were going into infertility treatment and I would have to be induced to super-ovulate so most women produce one or two eggs in their normal monthly cycle, I would be given drugs in order to produce many more at one time. So for about three weeks, a woman who is involved in this process takes medications, she gives herself daily injections of medications, she goes for tests, she gets ultrasounds, and when the eggs are ripe and ready to go, they will go in either with a long needle or they’ll make an incision and extract the eggs. So, let’s say you’d get 12 eggs. They then fertilize these eggs, each one, in a dish with sperm. And from that, you maybe get, let’s say you get eight embryos ‘because not every egg fertilizes. The best looking, and I really mean looking, they look at them under a microscope, the best looking embryos will be transferred to the woman, more or less immediately in the first round, and she will try and get pregnant. The remainder of the embryos are frozen. Maybe she doesn’t get pregnant, she comes back for some, she tries again, and they keep going until they’ve used all the frozen ones up, then she needs to super-ovulate again, and so on.

Now some people have argued that if we were going to go forward with embryonic stem cell research and the federal funding, we would limit ourselves only to those embryos that are stored—those embryos we hear about all the time—the nearly 400,000 frozen embryos in the United States, because those embryos are going to die anyway, so why not use them for research? Why not get something good out of a bad situation? Now I just wanted to point out the survey that found there were nearly 400,000 embryos frozen in the United States right now, said that less that 3% of those are donated to research. The fact of the matter is most embryos that are frozen are designated for the use of that woman or the couple in the reproductive treatment. They are not available for research. So there’s very, very few that are available for research use. What else are they going to do with them? Some people store them for years, 10 years, 15 years. Some people just don’t want to make a decision about what to do with them if they don’t need them. Some people freeze some, wait four years to have a baby, wait five years have another one. So they might want to use them for their future use in the long term; not soon.

Other people will donate those embryos to another couple. Some people want to go through a process where they just defrost the embryos and let them die. They don’t want… it’s almost like therapeutic for them. They don’t want to do anything to them, just want to allow them to perish and that’s the option that they would choose. Other people will donate them to research, but let’s just remember that stem cell research is not the only research around and that there are a lot of different uses for those embryos in research and some people may want to donate those embryos to fertility research. Improve fertility processes. So even of that less than 3% of 400,000 that are frozen not all of them will go to stem cell research.

So the real question is about whether the number of frozen embryos, if we restricted ourselves to the source, would be enough? Also there are arguments that they might not be of good enough quality. They’re coming from couples with infertility problems; they weren’t the best embryos in the first place because they were not transferred early. Maybe they also don’t have an interesting genetic makeup if you want to study particular diseases or you want to make matching treatments, then these embryos are not necessarily going to be useful for you. So those are some arguments that are being about why spare embryos are not going to be a solution or wouldn’t be a solution. I think it also got some other of the usual interests… concerns here about informed consent from donors and I think it’s a really interesting thing when a fertility physician or a fertility clinic becomes a supplier of embryos to research. Totally different purpose than they were originally doing. It’s a new role for them and I think it raises a lot of interesting issues.

So these are some of the things with spare embryos. So let’s say we don’t restrict ourselves to spare embryos and there’s no law in this country restricting people to spare embryos. You can just make embryos for research use. So you’d go through the same processes but you never intended those embryos to become a baby, you always intended to use them in embryonic stem cell research. One of the arguments you often hear about this is that it’s using those embryos as a means to an end. And that at least when you create embryos for infertility treatment, there’s a potential that they will be an end in themselves. They themselves will become a person. But when you know that they were going to be used in research, that was never a possibility, and some people object to that kind of use of human life. Of course if you create embryos in the lab for research use, why not create them by cloning?

And there are a number of scientific reasons why someone might want to create cloned embryos. People, as we’ve already discussed, get very worried that if you’re going to use cloning technology, soon there’ll be human clones walking around. We’ve heard a biological reason why that may not be possible. I just also want to remind you that there are lots of technologies that we develop for one purpose which tend to be put to a malicious purpose. And sometimes we choose to make a law against it.

Now what does it do to a clinic when it starts being part of its business model—that it’s a supplier of embryos to research or eggs to research? How does that change the way the clinic works? And what maybe, are there any extra protections needed? Fertility clinics in this country are almost entirely unregulated. But once they start being in the business of supplying embryos, I think it raises again the question of whether there need to be additional oversight. And I just wanted to throw this out at you that I have not heard of anybody doing this, but I wanted to suggest it as sort of an example of how this whole money issue could play out. Let’s say you’re a couple and you’ve gone into a fertility specialist, and you could only afford one cycle of fertility treatments because it’s really expensive; and your fertility specialist says to you, well look, you go through the first cycle and it fails, and you don’t get pregnant and the fertility specialist says, you know you could do another cycle for free. We have a special arrangement with the lab down the road. If you give half your embryos to research, they’ll pay for your fertility cycle. What do you think? So, I wanted to sort of try that out as an example of how money could play into these decisions and it really shows a possible relationship between this kind of research and the fertility business. And it’s not too far-fetched I think because they do have something called egg-sharing agreements. So, it’s just an extension of that idea.

I just want to also bring up these questions of access. Once you start having these very precious embryos and these very precious stem cells, the question’s who owns them? You can’t own a human embryo really in the United States but you can own a stem cell line. You can own embryonic stem cells; you can have a patent on those stem cells and a patent on the process. So what does that do when we start, we’ve already started this process really, but you already are patenting things that have an origin in human life. Are those patents going to be barriers to access for research as you want access to those lines? When it comes to treatment, I’ve read some curious things saying, well we should only go forward with this research if we know that a treatment is going to be available to everyone, regardless of the ability to pay. I was just curious because as far as I know, there aren’t any treatments in the United States that are available to everybody, regardless of their ability to pay. You either have to be insured or you have to be able to pay to get access to almost all treatment and I don’t know why stem cell treatments would be any different. So there will be access problems with these, but I don’t know that they’re any different from access problems to other treatments.

I just wanted to raise this issue of scientific hype. I don’t know whether you call it hype, but I know that Nancy Reagan, Michael J. Fox, Christopher Reeve, and a lot of other people have been engaged in what you would call strong advocacy. Those are very interesting scenarios in stem cell research, because you have advocates who are pushing for change, and once you start advocating for a position on something, you lose your objectivity to some degree. Dealing with advocates, being an advocate, and knowing how to assess advocacy are complicated issues and we need to think about those I think in this context.

We can talk about Californian Proposition 71 if you would like. I’m not going to go into detail about it, but I’ll just put it out there as an example of something that’s getting a lot of press and it has a lot of advocacy behind it, a lot of money behind it from people who really want it to go forward. I’m not saying it’s bad, but I’m just saying advocacy, you know, it changes the balance of things and there’s definitely a strong advocacy at work in the stem cell debate. When we look to other countries who have dealt with stem cell research, we see that a lot of countries have chosen to institute some kind of oversight and I don’t just mean on federal research, I mean oversight of all research regardless of its funding source. The UK, Australia, Canada, they’ve all chosen this route. Usually their oversight involves a set of prohibitions, things that just cannot be done, and that would be the kind of thing like implanting a clone embryo in a woman would be a prohibition. Other things can only be done if you are licensed and then licenses will have sets of terms, they all involve inspections, so you have a lot of control and I know that you don’t always like control. And they often contain a bunch of procedural rules about how you can consent, how you go about doing things. There are oversight models available if we were inclined to go that route. And in terms of dealing with some of the access problems that you might come up with and how you’d administer it, there are public banks with stem cells in other countries and that is definitely an option here, just to provide access at minimal cost.

Well, I think that stem cell research debate is… some people ask me why is this such a big deal? Why is everyone so interested? And I think it’s because it really raises some enduring questions that are not specific to stem cell research, but that stem cell research captures and brings to life again for us now in this century—questions about destroying human embryos, about research priorities, about payments for parts of bodies or things that come from bodies, and about ownership of these things. And so those are just some of the issues I think that are raised beyond just the moral status of the embryo egg destroying embryo life. So, I’m happy to answer questions anyone might have.