Is Finding Out Your Baby’s Genetics A New Responsibility of Parenting?

A doctor pricks the heel of a newborn for a blood test.
Hours after a baby is born, its heel is pricked with a lancet. Drops of the infant's blood are collected on a porous card, which is then mailed to a state laboratory. The dried blood spots are screened for around thirty conditions, including phenylketonuria (PKU), the metabolic disorder that kick-started this kind of newborn screening over 60 years ago. In the U.S., parents are not asked for permission to screen their child. Newborn screening programs are public health programs, and the assumption is that no good parent would refuse a screening test that could identify a serious yet treatable condition in their baby.
Learning as much as you can about your child's health might seem like a natural obligation of parenting. But it's an assumption that I think needs to be much more closely examined.
Today, with the introduction of genome sequencing into clinical medicine, some are asking whether newborn screening goes far enough. As the cost of sequencing falls, should parents take a more expansive look at their children's health, learning not just whether they have a rare but treatable childhood condition, but also whether they are at risk for untreatable conditions or for diseases that, if they occur at all, will strike only in adulthood? Should genome sequencing be a part of every newborn's care?
It's an idea that appeals to Anne Wojcicki, the founder and CEO of the direct-to-consumer genetic testing company 23andMe, who in a 2016 interview with The Guardian newspaper predicted that having newborns tested would soon be considered standard practice—"as critical as testing your cholesterol"—and a new responsibility of parenting. Wojcicki isn't the only one excited to see everyone's genes examined at birth. Francis Collins, director of the National Institutes of Health and perhaps the most prominent advocate of genomics in the United States, has written that he is "almost certain … that whole-genome sequencing will become part of new-born screening in the next few years." Whether that would happen through state-mandated screening programs, or as part of routine pediatric care—or perhaps as a direct-to-consumer service that parents purchase at birth or receive as a baby-shower gift—is not clear.
Learning as much as you can about your child's health might seem like a natural obligation of parenting. But it's an assumption that I think needs to be much more closely examined, both because the results that genome sequencing can return are more complex and more uncertain than one might expect, and because parents are not actually responsible for their child's lifelong health and well-being.
What is a parent supposed to do about such a risk except worry?
Existing newborn screening tests look for the presence of rare conditions that, if identified early in life, before the child shows any symptoms, can be effectively treated. Sequencing could identify many of these same kinds of conditions (and it might be a good tool if it could be targeted to those conditions alone), but it would also identify gene variants that confer an increased risk rather than a certainty of disease. Occasionally that increased risk will be significant. About 12 percent of women in the general population will develop breast cancer during their lives, while those who have a harmful BRCA1 or BRCA2 gene variant have around a 70 percent chance of developing the disease. But for many—perhaps most—conditions, the increased risk associated with a particular gene variant will be very small. Researchers have identified over 600 genes that appear to be associated with schizophrenia, for example, but any one of those confers only a tiny increase in risk for the disorder. What is a parent supposed to do about such a risk except worry?
Sequencing results are uncertain in other important ways as well. While we now have the ability to map the genome—to create a read-out of the pairs of genetic letters that make up a person's DNA—we are still learning what most of it means for a person's health and well-being. Researchers even have a name for gene variants they think might be associated with a disease or disorder, but for which they don't have enough evidence to be sure. They are called "variants of unknown (or uncertain) significance (VUS), and they pop up in most people's sequencing results. In cancer genetics, where much research has been done, about 1 in 5 gene variants are reclassified over time. Most are downgraded, which means that a good number of VUS are eventually designated benign.
While one parent might reasonably decide to learn about their child's risk for a condition about which nothing can be done medically, a different, yet still thoroughly reasonable, parent might prefer to remain ignorant so that they can enjoy the time before their child is afflicted.
Then there's the puzzle of what to do about results that show increased risk or even certainty for a condition that we have no idea how to prevent. Some genomics advocates argue that even if a result is not "medically actionable," it might have "personal utility" because it allows parents to plan for their child's future needs, to enroll them in research, or to connect with other families whose children carry the same genetic marker.
Finding a certain gene variant in one child might inform parents' decisions about whether to have another—and if they do, about whether to use reproductive technologies or prenatal testing to select against that variant in a future child. I have no doubt that for some parents these personal utility arguments are persuasive, but notice how far we've now strayed from the serious yet treatable conditions that motivated governments to set up newborn screening programs, and to mandate such testing for all.
Which brings me to the other problem with the call for sequencing newborn babies: the idea that even if it's not what the law requires, it's what good parents should do. That idea is very compelling when we're talking about sequencing results that show a serious threat to the child's health, especially when interventions are available to prevent or treat that condition. But as I have shown, many sequencing results are not of this type.
While one parent might reasonably decide to learn about their child's risk for a condition about which nothing can be done medically, a different, yet still thoroughly reasonable, parent might prefer to remain ignorant so that they can enjoy the time before their child is afflicted. This parent might decide that the worry—and the hypervigilence it could inspire in them—is not in their child's best interest, or indeed in their own. This parent might also think that it should be up to the child, when he or she is older, to decide whether to learn about his or her risk for adult-onset conditions, especially given that many adults at high familial risk for conditions like Alzheimer's or Huntington's disease choose never to be tested. This parent will value the child's future autonomy and right not to know more than they value the chance to prepare for a health risk that won't strike the child until 40 or 50 years in the future.
Parents are not obligated to learn about their children's risk for a condition that cannot be prevented, has a small risk of occurring, or that would appear only in adulthood.
Contemporary understandings of parenting are famously demanding. We are asked to do everything within our power to advance our children's health and well-being—to act always in our children's best interests. Against that backdrop, the need to sequence every newborn baby's genome might seem obvious. But we should be skeptical. Many sequencing results are complex and uncertain. Parents are not obligated to learn about their children's risk for a condition that cannot be prevented, has a small risk of occurring, or that would appear only in adulthood. To suggest otherwise is to stretch parental responsibilities beyond the realm of childhood and beyond factors that parents can control.
Is Carbon Dioxide the New Black? Yes, If These Fabric-Designing Scientists Have Their Way
The entrepreneurs Tawfiq Nasr Allah (left, standing) and Benoit Illy (right, sitting down) at Fairbrics' lab in Clichy, France.
Each year the world releases around 33 billion tons of carbon dioxide into the atmosphere. What if we could use this waste carbon dioxide to make shirts, dresses and hats? It sounds unbelievable. But two innovators are trying to tackle climate change in this truly unique way.
Chemist Tawfiq Nasr Allah set up Fairbrics with material scientist Benoît Illy in 2019. They're using waste carbon dioxide from industrial fumes as a raw material to create polyester, identical to the everyday polyester we use now. They want to take a new and very different approach to make the fashion industry more sustainable.
The Dark Side of Fast Fashion
The fashion industry is responsible for around 4% of global emissions. In a 2015 report, the MIT Materials Systems Laboratory predicted that the global impact of polyester fabric will grow from around 880 billion kg of CO2 in 2015 to 1.5 trillion kg of CO2 by 2030.
Professor Greg Peters, an expert in environmental science and sustainability, highlights the wide-ranging difficulties caused by the production of polyester. "Because it is made from petrochemical crude oil there is no real limit on how much polyester can be produced...You have to consider the ecological damage (oil spills, fracking etc.) caused by the oil and gas industry."
Many big-name brands have pledged to become carbon neutral by 2050. But nothing has really changed in the way polyester is produced.
Some companies are recycling plastic bottles into polyester. The plastic is melted into ultra-fine strands and then spun to create polyester. However, only a limited number of bottles are available. New materials must be added because of the amount of plastic degradation that takes place. Ultimately, recycling accounts for only a small percentage of the total amount of polyester produced.
Nasr Allah and Illy hope they can offer the solution the fashion industry is looking for. They are not just reducing the carbon emissions that are conventionally produced by making polyester. Their process actually goes much further. It's carbon negative and works by using up emissions from other industries.
"In a sense we imitate what nature does so well: plants capture CO2 and turn it into natural fibers using sunlight, we capture CO2 and turn it into synthetic fibers using electricity."
Experts in the field see a lot of promise. Dr Phil de Luna is an expert in carbon valorization -- the process of converting carbon dioxide into high-value chemicals. He leads a $57-million research program developing the technology to decarbonize Canada.
"I think the approach is great," he says. "Being able to take CO2 and then convert it into polymers or polyester is an excellent way to think about utilizing waste emissions and replacing fossil fuel-based materials. That is overall a net negative as compared to making polyester from fossil fuels."
From Harmful Waste to Useful Raw Material
It all started with Nasr Allah's academic research, primarily at the French Alternative Energies and Atomic Energy Commission (CEA). He spent almost 5 years investigating CO2 valorization. In essence, this involves breaking the bonds between the carbon and oxygen atoms in CO2 to create bonds with other elements.
Recycling carbon dioxide in this way requires extremely high temperatures and pressures. Catalysts are needed to break the strong bonds between the atoms. However, these are toxic, volatile and quickly lose their effectiveness over time. So, directly converting carbon dioxide into the raw material for making polyester fibers is very difficult.
Nasr Allah developed a process involving multiple simpler stages. His innovative approach involves converting carbon dioxide to intermediate chemicals. These chemicals can then be transformed into the raw material which is used in the production of polyester. After many experiments, Nasr Allah developed new processes and new catalysts that worked more effectively.
"We use a catalyst to transform CO2 into the chemicals that are used for polyester manufacturing," Illy says. "In a sense we imitate what nature does so well: plants capture CO2 and turn it into natural fibers using sunlight, we capture CO2 and turn it into synthetic fibers using electricity."
The Challenges Ahead
Nasr Allah met material scientist Illy through Entrepreneur First, a programme which pairs individuals looking to form technical start-ups. Together they set up Fairbrics and worked on converting Nasr Allah's lab findings into commercial applications and industrial success.
"The main challenge we faced was to scale up the process," Illy reveals. "[It had to be] consistent and safe to be carried out by a trained technician, not a specialist PhD as was the case in the beginning."
They recruited a team of scientists to help them develop a more effective and robust manufacturing process. Together, the team gained a more detailed theoretical understanding about what was happening at each stage of the chemical reactions. Eventually, they were able to fine tune the process and produce consistent batches of polyester.
They're making significant progress. They've produced their first samples and signed their first commercial contract to make polyester, which will then be both fabricated into clothes and sold by partner companies.
Currently, one of the largest challenges is financial. "We need to raise a fair amount to buy the equipment we need to produce at a large scale," Illy explains.
How to Power the Process?
At the moment, their main scientific focus is getting the process working reliably so they can begin commercialization. In order to remain sustainable and economically viable once they start producing polyester on a large scale, they need to consider the amount of energy they use for carbon valorization and the emissions they produce.
The more they optimize the way their catalyst works, the easier it will be to transform the CO2. The whole process can then become more cost effective and energy efficient.
De Luna explains: "My concern is...whether their process will be economical at scale. The problem is the energy cost to take carbon dioxide and transform it into these other products and that's where the science and innovation has to happen. [Whether they can scale up economically] depends on the performance of their catalyst."
They don't just need to think about the amount of energy they use to produce polyester; they also have to consider where this energy comes from.
"They need access to cheap renewable energy," De Luna says, "...so they're not using or emitting CO2 to do the conversion." If the energy they use to transform CO2 into polyester actually ends up producing more CO2, this will end up cancelling out their positive environmental impact.
Based in France, they're well located to address this issue. France has a clean electricity system, with only about 10% of their electric power coming from fossil fuels due to their reliance on nuclear energy and renewables.
Where Do They Get the Carbon Dioxide?
As they scale up, they also need to be able to access a source of CO2. They intend to obtain this from the steel industry, the cement industry, and hydrogen production.
The technology to purify and capture waste carbon dioxide from these industries is available on a large scale. However, there are only around 20 commercial operations in the world. The high cost of carbon capture means that development continues to be slow. There are a growing number of startups capturing carbon dioxide straight from the air, but this is even more costly.
One major problem is that storing captured carbon dioxide is expensive. "There are somewhat limited options for permanently storing captured CO2, so innovations like this are important,'' says T. Reed Miller, a researcher at the Yale University Center for Industrial Ecology.
Illy says: "The challenge is now to decrease the cost [of carbon capture]. By using CO2 as a raw material, we can try to increase the number of industries that capture CO2. Our goal is to turn CO2 from a waste into a valuable product."
Beyond Fashion
For Nasr Allah and Illy, fashion is just the beginning. There are many markets they can potentially break into. Next, they hope to use the polyester they've created in the packaging industry. Today, a lot of polyester is consumed to make bottles and jars. Illy believes that eventually they can produce many different chemicals from CO2. These chemicals could then be used to make paints, adhesives, and even plastics.
The Fairbrics scientists are providing a vital alternative to fossil fuels and showcasing the real potential of carbon dioxide to become a worthy resource instead of a harmful polluter.
Illy believes they can make a real difference through innovation: "We can have a significant impact in reducing climate change."
Vaccine passports, if required by businesses and universities, may give people a false sense of security, one expert cautions.
Vaccines are one of the greatest public health accomplishments of all time. For centuries, public health has relied on vaccinations to prevent and control disease outbreaks for a plethora of infectious scourges, with our crowning achievement being the successful eradication of smallpox.
The purpose of vaccine documentation is to provide proof of an individual's protection from either becoming infected or transmitting a vaccine-preventable disease. Vouching for these protections requires a firm knowledge about the epidemiology of the disease, as well as scientific knowledge concerning the efficacy of the vaccine. The vaccines we currently require be documented have met these tests; the vaccine for COVID-19 has not yet been proven to do so.
Let's acknowledge that the term "vaccine passport" is a poor choice of words. Passports are a legal travel document created by nations and governed by law for identification of the bearer to control entry and exit from nation states. They often serve as legal forms of identification and as a record of international travel. They are generally very sophisticated documents that have been created in a secure manner and may include a range of electronic and, in some cases, biometric measures such as fingerprints to ensure the holder is indeed who they say they are. Vaccine passports are medical documents used to document the vaccination status of an individual. They do not undergo the same level of administrative scrutiny and cannot be used to verify that the presenter is indeed the vaccinated individual. Some companies do have electronic methods to address concerns about verification; however, most people currently have paper records that can be easily falsified.
"Vaccine passports" as currently proposed risk giving people a false sense of security.
Successful disease control from vaccination programs relies on the ability to vaccinate at a level that prevents large-scale disease spread and the ability to rapidly identify the presence of disease outbreaks. It requires reliable, safe, and effective vaccines that are easily delivered in clinical and nonclinical settings. Keeping vaccination information as a part of the medical record, and even having a separate specialized vaccine record for personal use, is a time-honored tradition.
Keeping a vaccination record provides a method to keep track of the many shots one receives and serves as a visual reminder to help ensure the appropriate vaccine shot schedule is maintained for vaccines requiring multiple doses. The vaccine record, when combined with vaccine safety monitoring systems, serves as a mechanism to track adverse events to monitor and ensure the safety of vaccines as a consumer product. The record also serves as the official record of vaccination when required for administrative or legally prescribed purposes.
"Vaccine passports" as currently proposed risk giving people a false sense of security. In the case of the COVID-19 vaccines currently approved for use, many of the essential questions remain unanswered. While we do know the current three vaccines are highly protective against severe disease and death, and there is some evidence that these vaccinations do reduce infections and virus transmission of SARS-CoV-2, we do not yet know the full degree to which this occurs.
For example, we know there have been some cases of people that have been infected in close proximity to getting their full vaccination and rare cases of breakthrough reinfections. A breakthrough infection in a restaurant is a challenge for contact tracing, but an outbreak from a movie theater exposure or a baseball game could spark a major outbreak at our current level of vaccination. Current CDC guidance recommends continued mask wearing in order to address these concerns.
We also do not yet know how long the protections will last and if or when a booster or revaccination is required. In effect, it is too soon to know. Should an annual booster shot be required, then a vaccine passport would require annual updating, a process more frequent than renewal of a driver's license.
We also know that the current SARS-CoV-2 virus is mutating briskly. While the current approved vaccines have remained effective overall, there is evidence of some degree of degradation in vaccine effectiveness against some of the circulating strains. We also have sparse data on many of the other emerging strains of concern because we have not had the surveillance capacity in the U.S. to gain an adequate sense of how the virus is changing to fully align vaccine effectiveness with viral capabilities.
The risk of people misusing these "passports" is troubling. The potential for using these documents for hiring, firing or job limitation is a serious concern. Unvaccinated workers are at risk of this form of discrimination even from well-meaning employers or supervisors. Health insurers are prohibited by the Affordable Care Act from discriminating based on preexisting conditions, but they could probably charge a higher premium for unvaccinated individuals. There also is a risk of stigmatizing individuals who are not vaccinated or have left their vaccine documentation at home. Another concern: the opportunity to discriminate based on race, gender, sexual orientation, or religion, using one's vaccination status as an excuse.
These "passports" are being discussed as a "ticket verification" for entry to many activities, including dining at restaurants, flying domestically and/or internationally, going to movie theaters and sporting events, etc. These are all activities we already are doing at reduced levels and for which wearing a mask, hand hygiene and physical distancing are effective disease control practices. COVID-19 vaccines are indeed the measure that will make the ability to totally reopen our society complete, but we are not there yet. Documentation of one's COVID-19 vaccine status may be useful in selected situations in the future. That remains to be seen.
Finally, inadequate vaccine supply and disparities in vaccine delivery have created enormous challenges in providing equal access to vaccination. Also, the amount of misinformation, disinformation, and lingering vaccine hesitancy continue to limit the speed at which we will reach the level of vaccination of the population that would make this documentation meaningful. The requirement for "vaccine passports" is already alienating people who are opposed to vaccinations for a variety of reasons, paradoxically risking reduced vaccine uptake. This politicization of the vaccination effort is of concern. There are indeed people who, due to medical contraindications or legal exemptions, will not be vaccinated, and we do not yet have a national framework on how to address this.
Vaccine passports are not the solution for reopening our society — a robust vaccination program is. The requirement to document one's vaccination status for COVID-19 may one day have its place. For now, it is an idea whose time has not yet come.
Editor's Note: This op/ed is part of a "Big Question" series on the ethics of vaccine passports. Read the flip side argument here.