Is Finding Out Your Baby’s Genetics A New Responsibility of Parenting?
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.
GOOD10: The Pandemic Issue explores big-picture ways that science innovation and communication can usher in a more equitable, more progress-oriented, and safer world.
This issue is a collaboration among GOOD, leapsmag, and the Aspen Institute Science & Society Program.
The GOOD10 format explores fundamental issues facing humanity through the lenses of ten forces pushing the needle toward progress: Places, Philanthropists, Celebrities, Whistleblowers, Companies, Media, Products, Politicians, Scientists, and Actions. Across these categories, we seek to present unexpected and encouraging paradigms emerging from this historic crisis.
This special issue is available as an e-reader version for both desktop and mobile. It is also available as a free downloadable PDF.
TABLE OF CONTENTS:
- PLACES:
55 Lessons Learned About Science Communication Around the World; Quarantining Our Way Into Outer Space - PLACES:
Quarantining Our Way Into Outer Space - PHILANTHROPISTS:
An Exclusive Interview with Wendy Schmidt about Science in the Pandemic Era - CELEBRITIES:
Neil deGrasse Tyson Wants Celebrities to Promote Scientists - WHISTLEBLOWERS:
The Science Sleuths Holding Fraudulent Research Accountable - COMPANIES:
The Biggest Challenge for a COVID-19 Vaccine: Making It Accessible and Affordable - MEDIA:
Isaac Asimov on the History of Infectious Disease—And How Humanity Learned To Fight Back - PRODUCTS:
Will COVID-19 Pave the Way For DIY Precision Medicine? - POLITICIANS:
Will the Pandemic Propel STEM Experts to Political Power? - SCIENTISTS:
Would a Broad-Spectrum Antiviral Drug Stop the Pandemic? - ACTIONS:
Pseudoscience is Rampant: How Not to Fall For It - ACTIONS:
How COVID-19 Could Usher In a New Age of Collective Drug Discovery
THE EVENT:
"The Pandemic Science Summit" focused on how science innovation is key to society's future stability as we emerge from the pandemic, featuring:
Christopher Bailey – Arts and Health Lead, World Health Organization
Elisabeth Bik, Ph.D. – Microbiologist and scientific integrity consultant
Margaret Hamburg, M.D. – Foreign Secretary, National Academy of Medicine; former Commissioner, U.S. Food and Drug Administration
Peggy Oti-Boateng, Ph.D. – Director, Division of Science Policy and Capacity- Building, UNESCO
George Yancopoulos, M.D., Ph.D. – President and Chief Scientific Officer, Regeneron Pharmaceuticals
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.
Two Conservative Icons Gave Opposite Advice on COVID-19. Those Misinformed Died in Higher Numbers, New Study Reports.
The news sources that you consume can kill you - or save you. That's the fundamental insight of a powerful new study about the impact of watching either Sean Hannity's news show Hannity or Tucker Carlson's Tucker Carlson Tonight. One saved lives and the other resulted in more deaths, due to how each host covered COVID-19.
Carlson took the threat of COVID-19 seriously early on, more so than most media figures on the right or left.
This research illustrates the danger of falling for health-related misinformation due to judgment errors known as cognitive biases. These dangerous mental blindspots stem from the fact that our gut reactions evolved for the ancient savanna environment, not the modern world; yet the vast majority of advice on decision making is to "go with your gut," despite the fact that doing so leads to so many disastrous outcomes. These mental blind spots impact all areas of our life, from health to politics and even shopping, as a survey by a comparison purchasing website reveals. We need to be wary of cognitive biases in order to survive and thrive during this pandemic.
Sean Hannity vs. Tucker Carlson Coverage of COVID-19
Hannity and Tucker Carlson Tonight are the top two U.S. cable news shows, both on Fox News. Hannity and Carlson share very similar ideological profiles and have similar viewership demographics: older adults who lean conservative.
One notable difference, however, relates to how both approached coverage of COVID-19, especially in February and early March 2020. Researchers at the Becker Friedman Institute for Economics at the University of Chicago decided to study the health consequences of this difference.
Carlson took the threat of COVID-19 seriously early on, more so than most media figures on the right or left. Already on January 28, way earlier than most, Carlson spent a significant part of his show highlighting the serious dangers of a global pandemic. He continued his warnings throughout February. On February 25, Carlson told his viewers: "In this country, more than a million would die."
By contrast, Hannity was one of the Fox News hosts who took a more extreme position in downplaying COVID-19, frequently comparing it to the flu. On February 27, he said "And today, thankfully, zero people in the United States of America have died from the coronavirus. Zero. Now, let's put this in perspective. In 2017, 61,000 people in this country died from influenza, the flu. Common flu." Moreover, Hannity explicitly politicized COVID-19, claiming that "[Democrats] are now using the natural fear of a virus as a political weapon. And we have all the evidence to prove it, a shameful politicizing, weaponizing of, yes, the coronavirus."
However, after President Donald Trump declared COVID-19 a national emergency in mid-March, Hannity -- and other Fox News hosts -- changed their tune to align more with Carlson's, acknowledging the serious dangers of the virus.
The Behavior and Health Consequences
The Becker Friedman Institute researchers investigated whether the difference in coverage impacted behaviors. They conducted a nationally representative survey of over 1,000 people who watch Fox News at least once a week, evaluating both viewership and behavior changes in response to the pandemic, such as social distancing and improving hygiene.
Next, the study compared people's behavior changes to viewing patterns. The researchers found that "viewers of Hannity changed their behavior five days later than viewers of other shows, while viewers of Tucker Carlson Tonight changed their behavior three days earlier than viewers of other shows." The statistical difference was more than enough to demonstrate significance; in other words, it was extremely unlikely to occur by chance -- so unlikely as to be negligible.
Did these behavior changes lead to grave consequences? Indeed.
The paper compared the popularity of each show in specific counties to data on COVID-19 infections and deaths. Controlling for a wide variety of potential confounding variables, the study found that areas of the country where Hannity is more popular had more cases and deaths two weeks later, the time that it would take for the virus to start manifesting itself. By March 21st, the researchers found, there were 11 percent more deaths among Hannity's viewership than among Carlson's, again with a high degree of statistical significance.
The study's authors concluded: "Our findings indicate that provision of misinformation in the early stages of a pandemic can have important consequences for health outcomes."
Such outcomes stem from excessive trust that our minds tend to give those we see as having authority, even if they don't possess expertise in the relevant subject era.
Cognitive Biases and COVID-19 Misinformation
It's critically important to recognize that the study's authors did not seek to score any ideological points, given the broadly similar ideological profiles of the two hosts. The researchers simply explored the impact of accurate and inaccurate information about COVID-19 on the viewership. Clearly, the false information had deadly consequences.
Such outcomes stem from excessive trust that our minds tend to give those we see as having authority, even if they don't possess expertise in the relevant subject era -- such as media figures that we follow. This excessive trust - and consequent obedience - is called the "authority bias."
A related mental pattern is called "emotional contagion," in which we are unwittingly infected with the emotions of those we see as leaders. Emotions can motivate action even in the absence of formal authority, and are particularly important for those with informal authority, including thought leaders like Carlson and Hannity.
Thus, Hannity telling his audience that Democrats used anxiety about the virus as a political weapon led his audience to reject fears of COVID-19, even though such a reaction and consequent behavioral changes were the right response. Carlson's emphasis on the deadly nature of this illness motivated his audience to take appropriate precautions.
Authority bias and emotional contagion facilitate the spread of misinformation and its dangers, at least when we don't take the steps necessary to figure out the facts. Such steps can range from following best fact-checking practices to getting your information from news sources that commit publicly to being held accountable for truthfulness. Remember, the more important and impactful such information may be for your life, the more important it is to take the time to evaluate it accurately to help you make the best decisions.