TED Radio Hour (NPR)
Episode: The secrets in your baby's genes
Host: Manoush Zomorodi
Date: January 9, 2026
Episode Overview
This episode explores the revolutionary potential—and the profound ethical, social, and medical questions—raised by newborn genetic sequencing. Host Manoush Zomorodi speaks with researchers, genetic counselors, and bioethicists about the BabySeq Project, which seeks to understand if sequencing newborns’ DNA can identify hidden health risks and even save lives. The episode examines both the promise of early detection and the possible downsides, from anxiety to inequity and surveillance.
Key Discussion Points & Insights
1. Introduction to Newborn Genetic Sequencing
[00:44-03:10]
- Typical newborn screening tests for a small selection of conditions.
- The BabySeq Project sequences the entire genome of healthy infants to look for hundreds of diseases, allowing a doctor and family to watch for even rare, hidden genetic conditions.
- Parents face a personal choice: Would you want to know about potential risks that may never show up, or is ignorance bliss?
Quote:
"We don't choose what we pass down to our kids. It's totally random. So I think you've done a really good step here by getting more information for him."
—Bethany Zettler (Genetic Counselor), [03:01]
2. The Science and Rationale Behind Preventive Genomics
[03:42-04:57 | 10:41-12:51]
- Dr. Robert C. Green introduces preventive genomics: using DNA as a forecasting tool for disease risk, ideally allowing for prevention or early treatment.
- Green pioneered studies in adult and newborn DNA sequencing, treating genetic risk information “like a drug”—measuring outcomes of disclosure vs. nondisclosure.
Quotes:
"Preventive genomics is a catchphrase that I use to indicate that something about the DNA is going to warn you about the future, and ... you can take action to mitigate or even prevent a medical condition that's coming."
—Dr. Robert C. Green, [04:11]
"We wrote a grant which treated information like a drug. ... There was way less distress than had been predicted ... those who wanted the information were extremely grateful for it and adjusted quickly."
—Dr. Robert C. Green, [05:55]
3. Findings and Impact of Whole-Genome Sequencing
[15:06-17:46]
- Previous estimates undercounted: Research suggests ~10% of children will develop a rare disease, and ~12% of sequenced babies in BabySeq held mutations for rare (sometimes treatable) conditions.
- Aggregated together, rare diseases are not rare—they affect millions globally each year.
Quote:
"If you take ... 400 genes which represent conditions that are treatable today ... we found mutations in those genes in about 4% of these babies. ... If you expanded that gene list ... we found an incredible 12% ... It's kind of ironic ... individually rare diseases, but together they are a massive medical problem."
—Dr. Robert C. Green, [16:35]
4. Real-World Stories and Treatable Discoveries
[23:13-26:33]
- Testimonies from “BabySeq” parents:
- Baby Adam: An identified heart defect allowed for proactive monitoring and potential intervention.
- Baby Cora: A gene variant for biotinidase deficiency detected, prompting simple vitamin treatment and preventing brain damage.
Quotes:
"Knowing that we could be proactive gave us some peace of mind ... instead of being surprised down the road."
—Parent of Baby Adam, [23:27]
"We give her a daily vitamin to treat her enzyme deficiency ... I'm just glad we discovered the condition before there were any symptoms."
—Parent of Baby Cora, [23:53]
- Many conditions (like G6PD deficiency, various cancers, or retinoblastoma) can be detected early and treated if found through genetic testing.
5. Why the Medical Community Resists Widespread Sequencing
[18:37-21:17]
- After initial results, Green faced intense pushback:
- Fears of over-diagnosis, psychological distress, unnecessary medical spending.
- Ethical and social concerns: echoes of eugenics, racial discrimination, privacy, exploitation of vulnerable communities for biobanks.
Notable Moment:
"Sometimes people's voice was shaking, sometimes they were shouting. I mean, it was unusual how much emotion this stirred in people."
—Dr. Robert C. Green, [13:01] / [19:09]
6. Ethical and Psychological Critiques: Over-Surveillance & Medicalization
[33:07-40:17]
With Dr. Laney Friedman Ross (Pediatrician, Bioethicist)
- Many genetic risks are not 100% predictive; most do not manifest.
- Main pitfalls:
- “Patient-in-waiting” phenomenon—healthy children and parents become anxious and preoccupied, awaiting symptoms that might never appear.
- Over-diagnosis, over-surveillance, over-treatment.
- False security (for those with “no risk found”).
- Potential for loss of epidemiological data and public trust if parents opt out over privacy concerns.
Quotes:
"Now you have this information ... but you've been, in a sense, a patient in waiting. You've been waiting for that second shoe to drop."
—Dr. Laney Friedman Ross, [35:49]
"I want children to grow up ... I don't want every aspect of their life to be a medical decision."
—Dr. Laney Friedman Ross, [33:07] and [40:17]
- Warns that medicalizing childhood risk could make every symptom cause undue alarm.
Example for parents considering BabySeq:
"Would they be willing to get their own genome sequenced and would they like to understand all the genetic risks that they themselves have in their genes?"
—Dr. Laney Friedman Ross, [40:29]
7. Green’s Rebuttals and the Middle Ground
[41:33-44:53]
- Green argues that adults and parents, when given their genetic data voluntarily, generally do not suffer lasting psychological harm.
- Parents make many important decisions for children by necessity; this is another.
- Validates ethical worries but notes rigorous studies have not shown disruption in parent-child bonding or major psychological distress within trial groups.
Quote:
"You do not disrupt parent child bonding ... we've published it and it's simply no difference between the two groups."
—Dr. Robert C. Green, [44:54]
8. Equity, Privacy, and the Future of Implementation
[45:28-48:31]
- U.S. insurance is not built for preventive, pre-diagnostic care.
- Inequality will likely persist: Privileged families access the technology first.
- Despite concerns, Green believes genomics inequity is dwarfed by existing healthcare disparities.
Quote:
"The scale and scope of what it means to be poor in the United States is so much more devastating. ... It's small compared to the impact of the inequities in our health system in general."
—Dr. Robert C. Green, [47:36]
9. Addressing Dystopian Fears & The Way Forward
[48:31-50:59]
- Many fear dystopian outcomes: privacy violations, discrimination.
- Green argues these fears are over-indexed compared to the life-saving potential.
- Genomics is here to stay: Gradual rollout, ethical frameworks, and ongoing research will shape its use.
Quotes:
"Most of the time ... people feel it's dystopian or are fearful ... but they have not recognized how minimal those privacy concerns are ... The concerns about privacy and discrimination are totally legitimate, but they have been over indexed on, whereas the potential benefits have been under indexed on."
—Dr. Robert C. Green, [48:45]
"The majority of us have moved the question from 'should it be done?' to 'let's find the most constructive and beneficial way in which it should be done.'"
—Dr. Robert C. Green, [50:59]
Notable Quotes Recap
- "Preventive genomics ... is going to warn you about the future." — Dr. Robert C. Green [04:11]
- "We wrote a grant which treated information like a drug." — Dr. Robert C. Green [05:55]
- "It's kind of ironic ... these are individually rare diseases, but together they are a massive medical problem." — Dr. Robert C. Green [16:35]
- "I don't want every aspect of their life to be a medical decision." — Dr. Laney Friedman Ross [40:17]
- "You do not disrupt parent-child bonding ... we've published it and ... simply no difference between the two groups." — Dr. Robert C. Green [44:54]
- "The concerns ... have been over indexed on, whereas the potential benefits have been under indexed on." — Dr. Robert C. Green [48:45]
Timeline of Key Segments
- [00:44] – Introduction to the BabySeq project & what it screens for
- [03:42] – Dr. Robert Green: background, adult genetic testing studies
- [12:51] – Why newborn sequencing matters, and the first sequenced baby (TED Talk excerpt)
- [15:06] – Surprising prevalence of risk genes in “healthy” babies
- [18:37] – Pushback from the medical and broader community
- [23:13] – Parent testimonials: Real impacts of BabySeq
- [33:07] – Dr. Laney Friedman Ross: Ethical and clinical downsides
- [40:29] – Advice to parents; skepticism about “patients in waiting”
- [41:33] – Dr. Green: Counterarguments, data on psychological effects
- [45:28] – Challenges with insurance, equity, and accessibility
- [48:45] – Responding to dystopian fears; call for balanced understanding and innovation
Tone and Language
- The episode maintains a thoughtful, respectful, and inquisitive tone. Manoush Zomorodi acts as a curious intermediary, facilitating a nuanced debate. Guests express complex scientific data in plain, vivid language, quoting real-life dilemmas. The speakers use analogies (treating information “like a drug”; describing kids as “patients in waiting”) to ground listeners in the emotional and practical stakes.
Summary Takeaway
The BabySeq project and advancements in preventive genomics hold vast promise for identifying and preventing inherited diseases. However, introducing this technology to healthy newborns raises complex ethical, psychological, and social questions. While some see the genetic future as a new era of life-saving medicine, others warn against anxiety, inequity, and surveillance. The conversation—much like the science—is ongoing, demanding ongoing study, open dialogue, and, above all, care for the families at its center.