ASRM Today: Ethics within Reproductive Rights and Reproductive Justice

In this episode, we continue our season-long exploration of reproductive justice and reproductive rights-this time through an ethical lens. Joining me is Dr. Sigal Klipstein, chair of the ASRM Ethics Committee and a returning guest on the program. Together, we'll discuss the complex moral considerations that influence reproductive medicine, from patient autonomy and access to care, to the broader societal questions that shape ethical decisions making in this field.

Welcome to ASRM Today, a podcast that takes a deeper dive into the current topics in reproductive medicine. Welcome to ASRM Today, I'm your host, Jeffrey Hayes. In this episode, we continue our season-long exploration of reproductive justice and reproductive rights, this time through an ethical lens.

Joining me is Dr. Sigal Klipstein, chair of the ASRM Ethics Committee and a returning guest on the program. Together we'll discuss the complex moral considerations that influence reproductive medicine from patient autonomy and access to care to the broader societal questions that shape ethical decision-making in this field. I began our discussion by asking about abortion rights.

Let's talk about abortion rights, if that's okay. Do you mind if we start there? Sure. So with abortion access being restricted in many states, what sort of ethical questions arise about equity and who is most affected by these laws? Yeah, so we've historically known, and nothing has changed recently, that when you restrict access to care, those who are most vulnerable are most affected.

And so certainly with the restriction of abortion services, those who don't have access to transportation, time off, child care, things like that are going to be most affected, insurance, all of these things have to do with access to care. And so while we think that we make these restrictions, and they're nationally or broadly applicable, that's actually not very true. And what we find is that the people who have means and have time and so on can find ways around this.

If abortion is not legal in one state, some people can travel to another state, but not everybody can travel. And so this really further divides essentially the haves and the have-nots, and equity is further impacted by that. So we have this block, right? We have to think about child care and housing and health care and all of these things for access.

Does that mean that someone can really make a free choice? I don't think so necessarily. I mean, I like to think about this in terms of a discussion of rights and what rights do you have vis-a-vis the people around you, your society, the government. And there's this concept of negative and positive rights, and I think it's worth spending a moment or two to talk about those because I think that they relate really directly to both abortion and also fertility and access to care, which of course is the other kind of side of the coin here.

And so on the one hand, we have negative rights, which is the abortion debate. And so while we did have a national protection of our negative right not to be interfered with, our bodies, our actions, our decisions about reproducing, that right is no longer a national right, and that becomes problematic. And so these negative rights are rights that require others from abstaining from interfering with your actions.

Basically, don't tell me what to do. Now, of course, we live in a lawful society, and so there are some things that your government, your local jurisdiction can tell you not to do. Don't steal, don't kill, things like that, of course.

But when it comes to personal rights and what you want to do with your own autonomous decision-making, the negative rights dictate that you shouldn't be prevented from doing what you think is right. On the other hand, there's another kind of the other side of the coin is positive rights. And positive rights actually obligate others to provide you with certain goods or services or in this case, access to care.

And when we look at positive rights, we look at things like the right to have children, but not only the right to have children, because I don't think any of us would argue that we all have a human right to bear children if that's what we want to do, but it's also the right to be able to be assisted in that. So that's the right to provide insurance coverage, the right to provide medication, the right to provide time for people to do fertility care. Those are positive rights, and those are in a way much harder to come by.

And those are certainly also not guaranteed. And we see that in many states, there are insurances that mandate fertility care, which we're very pleased that these number of states offering fertility care are growing, but still a majority of states do not offer any kind of significant fertility coverage. And so while it would be great if people could exercise their positive right to be able to have families, in many cases, that is not the case.

And so that is certainly problematic and something that we are, as a society, you know, it behooves us to work hard in order to provide those protections and that type of access to care. Is it then that access to care sort of between these positive and these negatives, it kind of helps, it overlaps, like kind of in a Venn diagram, you know, like it would, it would sort of be, it touches on both questions, yes? Yeah, but I think every, every, you know, issue that we deal with that has to do with access to care, we have to look at it from both of these stances. Are we preventing people from accessing care or are we preventing people, because we're restricting care, or are we preventing them from having the resources needed to access the care? And I think these are somewhat related, but different concepts.

And so I would say that the abortion debate is more restriction of negative rights and the fertility access to care is more of a lack of access to positive rights. Speaking of fertility care, it's no mystery that IVF can often be expensive, but let's say that that's not an issue. We have all these new genetic technologies that allow parents to make decisions about embryos and future children, sort of, what are the ethical boundaries then that we need to be considering in using these tools? Yeah, I mean, this has become a very interesting conversation because there are things we've can do that we've never been able to do before.

And the fact that you now have this embryo in front of you, on the one hand, that's outside of the body and hasn't yet resulted in a pregnancy. And on the other hand, you have all of these technologies to be able to know so much about this embryo, more than we've ever known before, and not only know about them, but perhaps impact the actual embryo and its genetic contents opens up a whole slew of ethical questions. So while we initially were testing embryos for disease and by disease, we meant severe disease that led to disability or death early on, or very strongly impacted quality of life.

The definition of the types of things that we are able to test for, and what we call disease changes. So we've discussed these kinds of issues before, but certainly, you know, is a disease something that is lethal in childhood? Is a disease something that, you know, might cause you to need chronic care later in life? You know, is hypertension a disease? Sure. But would you test the early embryo for that, especially when there are lots of diseases that can either be managed or might be eradicated with, you know, changes in lifestyle or environment or medication in the future? And then there are, of course, disease predispositions that are not clearly diseases, but if you're at risk for developing breast cancer because you're a BRCA carrier, or if you're at increased risk of developing any kind of, you know, a number of cancers because you have Lynch syndrome or, you know, dementia or things like that, yes, these are diseases, but are these reasons that we should test the early embryos when these diseases may not manifest for another 50 or 70 years, and we don't know what the society and the status of health care will be like in the future? So that's one thing.

And then, of course, there's the question of traits. And so should you test your child for, or the embryo that might become your child for cognitive abilities, athletic abilities, things like this appearance, right? These are all things, you know, there are places offering to screen embryos for eye color. And, you know, I think it's nice to think what eye color would my baby have, but it's hard for me to imagine that anybody would really care what eye color their baby had enough to go through IVF or to test the embryos or to, you know, spend any kind of money on that.

But, you know, again, everyone's different and these things become available and the question is how should we use them? And then there's sort of the next layer of being able to manipulate the genetics of the embryos and do genetic engineering and gene editing in order to remove certain diseases from the embryos. So this is not screening embryos and not transferring them, but actually taking an embryo that might have in a previous day, an age been discarded or not used and actually making it essentially less likely to be affected by disease or not being affected by certain disease. And so now we're taking these embryos that maybe wouldn't have been viable and are now essentially being viable, being made to be viable.

So I think there are lots of levels. Again, the ethics of this, like you said, of course, have to do with access to care and resources and, you know, both societal resources and individual resources. But beyond the resources, I think we have to think about what kind of society do we want? What does this do for someone who's living with the disease? If they know their parents, you know, had a child with a certain disease and now they want a second child that doesn't have that disease, what does that say about the value of the first child they had? And what does that say to society that maybe spends a lot of money researching a given disease, but now there are very few people with that disease.

So now there are less funds being spent on that. And so the people who are already living with that disease are going to be suffering. So I think there are a lot of downstream effects to what we think seems like a nice thing, like we'll just change this embryo, make sure it's healthy, quote unquote, healthy and move on our merry way.

And, you know, even talking about health and disease, if you look at definitions of disease, people, dictionaries, the World Health Organization have very specific definitions of disease, but don't have, you know, definitions of health, except for to say that health is the absence of disease. But that's a very circular argument. And so we haven't really even been able to identify, determine, define what is health.

And I think that certainly health is a spectrum and health on some levels is an individual kind of life experience, because some people have disabilities that we would think are are very difficult to manage and they don't consider themselves disabled or unhealthy. And so it's all really in the eye of the beholder. So I do think that these are very difficult concepts to wrap your head around.

If we take access to care and let's say that we want to provide our providers with sort of the ethical, the ethical questions they need to be asking about access to care so that then they can share that with their patients. Where do you where's a good entry point? So I think first you have to ask yourself, you know, what am I treating? What will my treatment accomplish? Will it be, you know, is it fair? Is it just to offer this to this particular patient and perhaps not all patients? And then I think it's also interesting to sort of do a psychological exercise where you think about a conversation with a future child, like would that child have wanted to not be born if you excluded that embryo? Would that child have wanted to live with a disability? Would that child have wanted you to exclude the disability? Right. How would you think about this future child? Would that child want the blue eyes and the brown hair or do they really care? Right.

And so I do think you have to think about it a little bit in terms of the future child. One more question. With many places still in the world, as hard as it is to believe, facing rates of forced sterilization, how do we ethically address and prevent those sort of violations today? Look, I think it's always wrong that there are historical precedents that people who were not thought to be good, upstanding citizens were prevented from reproducing.

And again, I think this is really a violation of someone's negative rights to not be interfered with as they look at their decisions for having children and building a family. I think it's horrible that this still exists. I mean, we have a bad history of this in the U.S. People who are incarcerated used to be sterilized.

People who were thought to have decreased mental capacity were sterilized. People who were from certain populations were sterilized. And even sometimes without being told, women would have C-sections and lo and behold, they can't get pregnant because their tubes were tied and they didn't know.

I think certainly a lot of this has to do with consent. And you should, of course, never do any kind of procedure on anyone without consent. But I hope that the legacy of the badness that we suffered in the U.S. and the fact that we've come out of it and no longer do forced sterilization will be a beacon of light to other countries as they move forward and realize that this should never happen against someone's will or without their permission.

Thank you for listening to this episode of ASRM Today. I'd like to extend my gratitude to Dr. Sigal Klipstein for sharing her expertise and thoughtful insights on the ethical dimensions of reproductive rights and justice. If you'd like to learn more about the work of the ASRM Ethics Committee or explore additional educational resources, visit ASRM.org. I'm Jeffrey Hayes.

Thanks for joining us. And we'll see you again on the next episode of ASRM Today. This concludes this episode of ASRM Today.

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