The Ethics of Embryo Screening: Q&A with a UPenn Bioethicist

The Ethics of Embryo Screening: Q&A with a UPenn Bioethicist
When people think about embryo screening, some tend to think of a dystopian future like Brave New World in which governments try to control our reproductive choices, or parents try to create “perfect” children. Here’s what a bioethicist professor thinks about these misconceptions.
Conversation with Jonathan Anomaly, PhD and Christina Ren, MS, CGC 
Orchid offers advanced genetic testing for couples who want their child to have the best shot of a healthy life. Here’s our conversation with bioethicist Jonathan Anomaly, PhD, about his responses to common preconceived ideas about embryo screening.

What is a useful framework to think about the ethics of genetic testing before pregnancy?

Just as parents have different aesthetic preferences – in music, art, food – they also value slightly different traits in their children. Perhaps the most important principle in the ethics of genetic testing is to consider the interests of the future person the embryo will become. We cannot ask an embryo what it wants. But we can ask ourselves what traits tend to lead to a good life. And it’s clear that nearly every parent wants their children to be healthy, to live a long life, and to be able to engage in meaningful relationships. To the extent that heritable diseases reduce these prospects, it seems obvious that parents would select against such diseases.

Nevertheless, sometimes what the parents want for a future child may differ from what’s good for that future child. In these cases, which are unavoidable, we have to weigh the interests of the child against the liberty of parents to select traits they prefer.

What’s the difference between improving health outcomes for the next generation and designer babies?

When we move from monogenic disorders like Tay Sachs disease, which produces nothing but pain and frustration, to polygenic disorders like an elevated risk of mental illness, things get complicated. There’s a moderate correlation between creativity and schizophrenia, for example. And the correlation looks like it’s partly genetically mediated. In cases like this (once it becomes feasible to predict such conditions), it’s not obvious that a parent should select against schizophrenia.

Cases like this also illustrate that there is no conceptually clear or morally defensible line between treatment and enhancement. Calling something a “designer baby” should be regarded as morally neutral. Selecting in favor of a well-functioning immune system, perhaps one that is better than what evolution has given us, makes it less likely a child will be sick or get others sick. Whether we call this a “designer baby” matters less than whether we think the child and society will be better off if we select for traits like reduced disease risk or we choose at random.

What’s your response to those that think embryo screening is controversial and “playing God”?

Humans have been “playing God” for as long as we’ve been a species: we intentionally alter our environments, breed crops so that they’re more nutritious and easier to harvest, and we’ve invented lightning rods and vaccines to make us less likely to die from natural disasters.

I find the playing God objection a bit tiresome. However, maybe those who make the “playing God” objection are simply warning us that people often act with too much confidence in the face of uncertainty. They might worry about the unintentional effects of selecting for polygenic traits when we don’t really understand all of the consequences.

But if this is the worry, then we all share it! The proper response is to use the information we have, and for authorities like scientists and genetic counselors to be open about what we don’t know, as well as what we do know.

Won’t this technology “erase” people who have certain diseases?

In rare cases, it might erase certain diseases, but eliminating diseases among future people doesn’t mean getting rid of current people with those diseases. As the philosopher John Rawls has argued, the genetic lottery is unfair, and it would be doubly unfair for someone to have a congenital disability and to be discriminated against. We can recognize that some disabilities are bad for those who have them and that we should treat disabled people with equal respect since none of us deserve the portion of our abilities and disabilities that are influenced by genetics and early childhood experience. But this respect is consistent with minimizing debilitating conditions for future people, in the same way that we think, now that we have an HPV vaccine, teenagers should be vaccinated against HPV even if it’s too late for even if it’s too late for people who already have HPV or cervical cancer.

Won’t this technology make society more homogenous and destroy diversity?

Not necessarily. In fact, when we watch how ordinary people choose their mates, or how gay couples select sperm or eggs from fertility clinics, we see a spectacular diversity in preferences. While most people who shop at fertility clinics seek gametes from people who are smart, attractive, and healthy, they also seem to select for different aesthetic and personality traits. People differ over whether they’d like their children to be light or dark-skinned, blonde or brunette, artistic or nerdy, introverted or extraverted.

We could imagine too much homogeneity, especially with respect to the innate immune system. People could become as monocultured as the potatoes that led to the Irish potato famine more than a century ago. But this is very unlikely for a lot of reasons. And one solution to the problem would be genetic counseling. I don’t want to be too optimistic here. There’s a real potential for collective action problems – situations in which what is good for each is not good for all. And in cases like this it’s always wise to compare the likely consequences of unrestricted private choice with some government regulation (e.g. to try to preserve a 50/50 sex ratio or an optimal diversity of some other trait). But even when government regulation seems like a good idea, Julian Savulescu, Chris Gyngell, and I have argued that we should always pay attention to the potential for government abuse and mismanagement. We should generally be skeptical of government agents choosing distributions of traits, even if they play a role in making reproductive information public, etc.

How does ancestry impact the predictive abilities of this technology and what actions can be taken to mitigate inequalities? 

Currently, large biobank data that contain hundreds of thousands of individuals’ sequence data paired with physician verified diagnoses unfortunately remain largely Eurocentric. Thus, statistical models are currently much more predictive in populations with European ancestries. For other populations such as East Asian and African ancestry populations, disease prediction currently explains less of the genetic variance.

As more genetic studies collect information from more diverse participants, these results can become more widely accessible for all populations. As I understand it, Orchid is actively building statistical models to improve ancestry adaptation and adjustments for genetic risk scores, which will increase accessibility of the product to all individuals. 

What suggestions do you have about policies or protections to mitigate health inequalities?

This is a broad question. Philosophers like to distinguish between deserved and undeserved inequalities. For example, if you willingly engage in risky behavior, and your health outcomes are worse, that’s not something we should worry about (though some might disagree since risk tolerance is itself a heritable trait). But if health inequalities are increased because of undeserved bad luck, there may be reasons to consider it unjust. One kind of inequality we should attempt to mitigate is unequal access to contraception, IVF, and PGT. However, there is often an access/innovation tradeoff, whereby allowing some inequality by permitting rich people to use a product first ultimately lowers the cost and increases the quality of that product for everyone over time. So equality of outcome or resources is a terrible idea. But moves in the direction of equality, as long as they don’t stymie innovation, can be justified by many different moral principles, including the principle that we should decrease unjust inequalities.

How does embryo screening impact the way we view disease and disability as a society?

This is a social scientific question, and I don’t know the answer. Maybe nobody will know until it happens. I do think we can simultaneously select against disability and also respect those who already exist with disabilities. There’s always a risk that our culture will become callous, though I’m optimistic that it will not.

Consider the worst case scenario: Nazi Germany. Despite all of the efforts at dehumanizing disabled Germans (along with Gypsies, Jews, and other groups) Hitler had to keep his euthanasia programs secret because he knew ordinary Germans would reject them. If this is true even in Nazi Germany, with years of propaganda, it’s likely that in open societies we can promote compassion and respect for the disabled while also allowing parents to select embryos in a way that minimizes disabilities. One of my good friends and former students is a Rhodes Scholar at Oxford named Jay Ruckelshaus. He has quadriplegia. Everyone loves Jay how he is. But Jay has told me that if a cure for quadriplegia is discovered (perhaps a synthetic spinal cord), he’d want the cure. That doesn’t mean he’d then consider other people in wheelchairs inferior. Far from it.

Do you think it’s ethical to select against embryos with a higher risk of adult-onset diseases?

This is a perfectly reasonable move to make. It’s the genetic equivalent of parents trying to ensure their children are fed nutritious food and a stimulating environment so that they’re healthy later in life. I can imagine a moral tradeoff in which an adult-onset mental disorder (such as schizophrenia) might be tied to some other trait that’s desirable (such as creativity). In cases like this, parents might have good reasons not to select against it. But this is a hypothetical case, and as far as I know, adult-onset diseases like Huntington’s and Alzheimer’s don’t have any benefits early in life.

Treatments and therapies for diseases are improving all the time, so why select against a higher risk for developing a condition like cancer, when it may be more manageable by the time the child grows up and develops the condition?”

I suppose we have to distinguish between different kinds of diseases and pathologies. I mean, with cancer, I don't see any compensating benefit. Is there ever a good reason to be prone to cancer? Maybe there's some strange constellation of genes that both predispose us to cancer and something that's good. And then we'd have to weigh the so-called pleiotropic effects from genes against one another. But I mean, obvious responses, as I'm sure you'd agree: if it's cheaper to reduce the risk of the opportunity to get cancer from the beginning through genetic mitigation strategies, rather than develop it and then have an expensive treatment (which is also painful) — the choice is obvious. If there's no upside to cancer, then why not prevent it to begin with?

Some people argue that choosing against transferring embryos with high genetic risks is discriminatory or morally wrong, especially when the outcome is not 100% certain — what do you think?

There are no guarantees in life. Pregnancy is risky, driving to a fertility clinic is risky, and selecting an embryo for one trait and not others is also risky. So certainty is too high a benchmark to set. Life is full of risk, and responsibly navigating risk is part of a good life.

In thinking about more probabilistic outcomes, this might be useful. There's a distinction we make in both economics and philosophy between expected mathematical value and expected utility. For example, you can imagine a lottery ticket — the probability of winning times the amount that you would win, if you win. And usually, of course, the expected mathematical value of playing the lottery is low.

So taking this distinction and applying it here, some people might be really risk-averse and say, "Well, if there's even a small probability of this disease, and I think personally, this disease would be very bad. In that case, I'd rather select in such a way that it minimizes the chance of getting it." Others might say, "Well, I know that this disease can develop, but I think people could live with it quite well."

Are there future unintended consequences of prioritizing reducing risk for one condition over another condition/trait?

Sure. But whether we’re choosing what to eat for breakfast or (more monumentally) which traits to select in a child, there will always be risks and there will always be unintended consequences. Whether we get cancer depends partly on genetic predispositions, but also on random mutations, environmental conditions, and so on. When we select for a trait associated with a good outcome, we may accidentally or predictably increase the risk of some bad outcome. As long as parents have access to the best available scientific information, they can choose responsibly. Once again, though, the uncertainty involved in reproductive choices shows the need for genetic counseling before conception, as well as counseling during pregnancy (since chemicals like alcohol and lead can dramatically affect the prospects of a developing fetus).

How do you think what is deemed ethically permissible in the reproductive genetics field has changed over time? How might you envision it changing in the near to mid-term future?

There’s a lot of diversity and disagreement in contemporary bioethics. There are influential philosophers at Oxford like Julian Savulescu, Nick Bostrom, and Guy Kahane who not only advocate genetic enhancement but consider it a moral obligation for parents to select children with the best chance of the best life. Other philosophers like Allen Buchanan, Russ Powell, and I consider genetic selection and alteration morally permissible, provided parents are making informed choices, and that our policies tend to make the technology broadly accessible and pay attention to the collective upshot of our individual choices. Some philosophers like Robert Sparrow and Michael Sandel and Arthur Caplan seem to think almost any kind of genetic selection is wrong.

I think when the technology to predict complex traits becomes more powerful, and more parents use PGT, bioethics will change. We will see the benefits, and much of the science fiction element of people’s beliefs (and this includes professional ethicists) will fade away. We’ll be faced with very tangible benefits and very real costs. Fantasies about Brave New World and GATTACA will be replaced with more mundane choices, and the need to inform parents about the actual tradeoffs – both medical and moral – of the choices they face.

You mentioned moral philosophers like Julian Savulescu who consider it a moral obligation to conceive healthy children. Can you summarize for us what you view as their strongest positions and supporting arguments?

I don't necessarily share their views. I don't have strong moral views myself, but it's a pretty straightforward application of utilitarianism. Julian Savulescu and many other philosophers are utilitarians. According to utilitarianism, we should act in ways or pass policies or design institutions in such a way that we tend to maximize social welfare.

What is social welfare? Well, we could get into a lot of distinctions there. But as a rough first pass, it used to be thought of as something like maximizing the aggregate amount of pleasure in the world and minimizing the aggregate amount of pain. Well, it turns out, that's a little bit controversial. People think there's more to life than just pleasure and pain. We're not mere animals. You know, John Stuart Mill famously rebuked his teacher, Jeremy Bentham, who was the original utilitarian and he said, "Socrates dissatisfied is better than a pig satisfied. So we need to include other kinds of higher-level preferences that are unique to humans."

So once we have that theory, then it becomes almost trivially true that you should give your kids the best education you can within your budget constraints, feed them the best meals that you can. And again, within certain constraints, we don't have infinite resources. And to the extent that states are responsive to what people who live under them, watch, then maybe states should promote that. And similarly, if you go from education and nutrition and these other things, social enrichment to genetics, then you would say, well, to the extent that that's under our control, you would want to promote the welfare of the child through genetic selection.

Now, there's one big difference between modern utilitarians who say that parents have this moral obligation to maximize their child's welfare. The big hesitation they would have is going from a moral position that we should maximize our kids’ welfare to the view that the state should use their coercive power to directly promote social welfare. It’s one thing to think people should be nice to each other, to give compliments on a first date or whatever, and quite another for a government to force you to do this. Similarly, utilitarians like Savulescu who think parents have an obligation to maximize their children’s welfare don’t necessarily think the state should play a big role, since there’s a greater potential for abuse, like a misalignment of interests between what agents of the state think, and what parents think they should do.

What do you view as the strongest arguments against this moral view?

The strong view has gotten plenty of criticism. This is what philosophers do. We criticize each other no matter what. There's always a counter-argument. My view is a bit weaker than Julian Savulescu’s. And that is, I don't think parents should try to maximize welfare or whatever variable we're thinking about. But I do think informed choice is important.

Choice without relevant information is not always worth respecting. It might be worth legally respecting, but not morally speaking. Like if someone just says, "Well, I just choose not to vaccinate, I think vaccinations are a tool of the devil," you might think maybe that should be illegal, depending on how much risk they pose to others. But you might say, "If they don't understand how vaccines work, it's not a very interesting preference, because they would actually have a very different preference if they had the relevant information."

And my view is the same about parenting and preconception or preimplantation genetic diagnosis. I don't think parents have a strong moral obligation to maximize welfare, but I do think that they have an obligation to inform themselves about the relevant risks and benefits, and to select against traits that predispose their children to severe disease, or other risks that jeopardize their chance of living a fulfilling life.

How might you think about balancing these 3 ethical considerations: (a) respecting patient autonomy, (b) duty to act in the best interest of the future child, and (c) larger societal duty to do no harm and reduce the social/economic burden of disease?

Personally, I’d give more weight to (b) and (c) than (a). That’s because creating a life is one of the greatest responsibilities we’ll ever be faced with, and if parents have the power to prevent disease and promote wellbeing in their child, but opt not to do that, I consider that a moral failing. However, I also think it’s important to respect and legally protect parental autonomy. This is because parents tend to have a greater interest in their child than a government or outside party would. So we should generally defer to the informed choices of parents, even if parents inevitably make mistakes both before and after conception.

Is there anything we didn’t specifically ask that you want our readers to know?

It’s important to sort out facts and values, and informed parental choice from poorly formed preferences. Sometimes people will say it is wrong to select against a disease, but when you press them to explain, the objection is often rooted in uncertainty about the technology. Other times it’s rooted in status quo bias: the intuition that “natural” birth is superior to “artificial” intervention because nature designed us in a certain way and it’s wrong or dangerous to contravene nature. While we should always respect informed parental choice, it can be challenging to frame information to parents in a way that elicits their deep preferences, rather than mere gut reactions. But this is what we need to do.

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