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.
- Humans have been “playing God” for as long as we’ve been a species by intentionally altering and improving our environment through enabling technology. Skepticism or distrust of using technology before the implications are fully understood is warranted. The best response is to give people access to relevant information about the risks, benefits, and limitations of any particular technology.
- Reducing disease risks among future people is compatible with protecting and providing for the most vulnerable individuals currently living. It's entirely consistent to foster a culture that values and takes care of people impacted by these conditions while mitigating risk for future generations.
- Individual choice is by far preferred over institution-wide policies or mandates. Beyond individual parental choice, history reminds us of the perils of intolerable coercive acts of race-based forced sterilizations. We should defer to parent’s informed choice, given they tend to have a greater interest in their child than an outside party would.
- The status quo biases people to think current social norms are “normal” and new practices are “unnatural.” When IVF was first introduced, British magazine Nova stated that test tube babies were “the biggest threat since the atom bomb.” Today IVF has become widely accepted as a mainstream practice.
- Personal cost-benefit tradeoffs will soon replace gut fears. As embryo screening becomes increasingly prevalent and normalized, the real challenge of disseminating quality care and information begins.
As a genetic counselor, I often get questions like, “so you help people create designer babies, right?” Gut reactions and perceptions are natural when science fiction like Brave New World and GATTACA come to mind about “embryo screening.”
In this article, Anomaly and I discuss how we can deepen our conversation around the ethics of genetic screening.
“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.”
Humans have been “playing God” for as long as we’ve been a species
Jonathan Anomaly: “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 be open about what we don’t know, as well as what we do know.”
Reducing disease risks among future people is compatible with protecting and providing for the most vulnerable individuals currently living
Jonathan Anomaly: “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.
I do think we can simultaneously select against disability [or disease risk] 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. In open societies, we can promote compassion and respect for the disabled while also allowing parents to select embryos in a way that minimizes disease.
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.”
Individual choice is usually better than institution-wide policies or mandates
Parents tend to have a greater interest in their child than a government or outside party would. When it comes to genetic screening for the next generation, we should be wary of institutions trying to promote the parochial interests of the state or banning the use of genetic screening.
Jonathan Anomaly: “There’s a big difference between parents screening embryos for traits and coercive, government-sponsored eugenics. Parents will inevitably make mistakes before conception, and after. But the interests of parents and governments do not always align, and when they do not, there’s a tremendous risk of government abuse. I tend to trust parental autonomy over government mandates or bans, especially over reproductive choices.”
Read our article about why parents should be able to choose to individually maximize their own child’s welfare here.
Status quo biases people to think current social norms are “normal” and new practices are “unnatural”
Jonathan Anomaly: “Most people tend to say, ‘Look, things work reasonably well now. Why try these new procedures?’ This thinking often reflects an irrational bias in favor of the present.”
In nature, evolution optimizes for reproductive potential, but not so much for a long or healthy life. If you tried to reverse engineer the human genome and work on first principles, you’ll likely find that it’s not the most efficient and optimized instruction manual.
According to Anomaly, “it's almost certainly wrong if you understand Darwinian evolution to think where we are now is perfect, you know?” If we can substantially reduce health risks for the next generation through reproductive technologies, is that truly a radical, immoral thing to do? Or are we biased towards what is immediately familiar to us now?
How the ethics of genetic screening on embryos will change over time
Jonathan Anomaly: “There’s a lot of diversity and disagreement in contemporary bioethics. I think when the technology to predict complex traits becomes more powerful, and more parents use preimplantation genetic testing, bioethics will change.
We will see the benefits, and much of the science fiction element of people’s beliefs (including 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 patients about the actual tradeoffs – both medical and moral – of the choices they face.”
- Read the full Q&A with Dr. Jonathan Anomaly
- Should I do genetic testing to measure my future child’s genetic risks?
- Read Jonathan Anomaly’s book: Creating Future People: The Ethics of Genetic Enhancement
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