Should I do genetic testing to measure my future child’s genetic risks? Here’s what a UPenn bioethicist has to say.

Orchid offers advanced genetic testing for couples who want their child to have the best shot of a healthy life. We spoke with bioethicist Jonathan Anomaly, PhD, about the ethics of genetically testing couples before pregnancy and embryos before transfer.

Before we get into the nuances of moral philosophy and ethics of genetic testing, you may find it helpful to understand what to consider when deciding whether genetic testing before pregnancy is right for your family. Here’s a high-level overview. I go into more detail about your test options and lend my perspective as a genetic counselor in this article.

Advantages of genetic testing before pregnancy:

Planning tool to protect your child from inheriting risk to a condition that you can carry
Discover unknown genetic risks ahead of time
Answer if conditions that run in your family have a genetic cause

Some disadvantages and limitations:

Measuring genetic predisposition to conditions is not the same as diagnosing disease
More information may spark difficult emotions like anxiety or distress for some
Cost of obtaining the information

Parents should have access to information and informed choice

“Creating a life is one of the greatest responsibilities we’ll ever be faced with… and so, to the extent that’s under our control, parents would understandably want to promote the welfare of their child,” Anomaly says.

According to Anomaly, genetic screening for common conditions is a “perfectly reasonable move to make. It’s the genetic equivalent of parents trying to ensure their children are fed nutritious foods and have a stimulating learning environment so that they’re healthy later in life.”

Some moral philosophers such as Oxford professor Julian Savulescu consider it a “moral obligation” to create children with the best chance of the best life possible. Anomaly takes the middle ground. He states that parents should at least inform themselves about their choices on improving their children’s prospects.

Because parents are ultimately the shepherds of the future life, the values of informed parental choice and reproductive liberty are both important. The key here is that the choices made are informed. For example, if a parent chose not to vaccinate their children but did not understand how vaccines work and what opting out of vaccinations may achieve, “it's not a very interesting preference, because they may actually have a very different preference if they did have the relevant information. And my view is the same about parenting and preconception or preimplantation genetic testing. As long as parents have access to the best available scientific information, they can choose responsibly,” says Anomaly.

So, should I genetically screen my embryos for risk to common conditions?

Advanced embryo screening is now possible by analyzing an embryo’s DNA to flag genetic risk for certain common conditions. It allows families to prioritize transferring embryos with the lowest genetic risk. But you might be wondering, “Is this even a ‘morally right’ choice to consider?”

Here are some guiding principles bioethicist Jonathan Anomaly provides.

What can lead to a potentially better life for my future child?

“Perhaps the most important principle in the ethics of genetic testing on embryos is to consider what the person who the embryo will eventually become would have reason to consent to. We cannot ask an embryo what it wants. But we can ask ourselves what traits tend to lead to a good life.” Anomaly explains.

To the extent that conditions such as Alzheimer’s disease, heart disease, and cancer reduce the prospect of a long, healthy life, it seems entirely reasonable that parents would choose to have a child with a lower risk for these diseases.

Anomaly argues: “with diseases like cancer, I don't see any compensating benefit. Is there ever a good reason to be genetically prone to cancer? If it's cheaper to reduce the risk of cancer from the beginning through embryo screening, rather than develop it and then need 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? ”

How do I usually cope with uncertainty? Does more information make me more or less at ease?

Life is about making conscious decisions despite uncertainties. “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,” says Anomaly.

Bringing a child into the world is hard. There are endless sources of uncertainty — many that feel entirely out of our control. Each person perceives and manages risk differently. For some couples, they would prefer not to go into this already emotionally fraught process blind. They feel more in control and at ease if they know their future child’s health risks ahead of time. Others prefer not to know that much information and choose to let things fall into place.

The fact remains that for each choice we make — from choosing what to eat for breakfast or (more monumentally) which embryo we hope will become our child, there will always be risks and unintended consequences. We weigh these with the potential benefits of the opportunity even amidst sometimes imperfect, incomplete information.

What evidence and relevant information supports or invalidates my decision?

Anomaly highlights that “all fields of science have conflicting studies. And there are always interests going in different directions.” As a prospective consumer, making an informed choice comes from understanding the areas of consensus and debate (even amongst experts in the field).

“One of the things that I really worry about in the sciences in general, is politicization,” states Anomaly. From dietary research to social sciences, “when a field of research becomes highly politicized, it becomes less trustworthy… you then have to ask meta-questions like: ‘what's the probability that the probabilities that they assign are actually the objectively correct ones?’” This makes it extremely difficult for the average person (and well-intentioned experts!) to properly evaluate a scientific claim or new technology.

At Orchid, we take the role we play in delivering information to you at this life-altering milestone in your life seriously, operating at the highest ethical and scientific standards. We also strongly believe in education and transparency so that couples know how to interpret their reports and how they were generated. You can review some landmark studies that show how genetics can be used to stratify risk.

The bottom line

Parents want their children to be healthy, to live a long life, and to be able to engage in meaningful relationships. Parents should conceive children with the best chance of the best life by making informed choices for their family.

Every couple should consider their core values to assess whether genetic testing before pregnancy makes sense. Questions include defining what “better health” means, understanding how you cope with uncertainty, and evaluating relevant information.

Resources

Orchid offers advanced genetic testing for couples planning on building their family. We use advanced tools and smart, caring humans to help you give your future children the best shot of a healthy life. Conceive with greater confidence and peace of mind