Tag Archives: DNA

by | October 14, 2025 · 11:48 AM

My DNA Contains Multitudes. So Does Yours.

There are many reasons people undergo DNA analysis. Medical decision making and risk assessment. Prenatal screening and diagnosis. Ancestry testing. Wellness and lifestyle advice so someone can reap profits off of largely useless data. Parentage testing. Police investigations. The analysis might involve different tests, such as sequencing your entire genome (give or take a few million base pairs), targeted portions of it, single gene sequencing, single nucleotide polymorphisms, or karyotyping, to name a few. The results are usually treated as a static bit of information that is an accurate representation of your genetic make-up throughout your lifetime. The implicit message often is that you are the external manifestation of this single DNA test, like a DNA sequence was a map with an arrow pointing at it with the message “You are here.”

But really, no test can come close to capturing all of the DNA in your body. Any one test or set of tests , while they may be highly accurate in the right hands, only capture a DNA sequence in a particular tissue(s) at a particular moment in the lifespan and is useful only for a specific reason such as cancer treatment, assessing disease risk, or reproductive decision making. It’s a snapshot taken with a single narrow lens for a single purpose, not an ongoing video using a multidimensional wide-angle lens. The snapshot could look quite different depending on which tissue is sampled or if the snapshot is taken at a different moment in time.

Let’s start at The Beginning, or actually, just before The Beginning. As the result of meiotic scrambling, maternal and paternal chromosomes will be distributed among the gametes in a bewildering mix of maternal and paternal contributions. Like about 8 million possible different combinations of maternal and paternal chromosomes. Estimates vary because who analyzes each oocyte in the fetal ovaries, but a 20-week female fetus probably has somewhere between two to eight million oocytes. In other words, it is possible that each of those oocytes has a unique combination of maternal and paternal chromosomes. The number of aneuploid oocytes in utero is unknown, but during reproductive years around 10% of oocytes are aneuploid or have an unbalanced structural aberration, with the percentage increasing with maternal age. Trinucleotide expansion repeats responsible for Fragile X syndrome and Huntington disease can arise in oocytes during meiotic prometaphase 1.

In a young male’s typical ejaculate, with tens to hundreds of millions of sperm, there is a higher but still low probability that maybe a few of those sperm will have identical maternal and paternal chromosomal contributions. But about 10-15% of sperm cells have chromosomal abnormalities, with perhaps 90% of those being structural rather than numerical. On top of this, de novo pathogenic gene variants can arise in any gamete, with the probability increasing with a paternal age. And no one has any idea of the frequency of de novo variants in non-coding regions in spermatozoa or oocytes.


Perhaps the only time in human development that we have a single genome is immediately at conception, although that may apply only to nuclear DNA since the mitochondria of the fertilized egg could be heteroplasmic. But as the fertilized embryo undergoes mitosis, different genomes arise almost immediately. Chromosomal mosaicism is detected in a significant number of embryos; anywhere between 2 and 40%, depending on a number of factors. About 2% of CVS specimens, which are derived from the fetal aspect of the placenta, are chromosomal mosaics. Mosaic single gene variants can also arise in neuronal progenitor cells, primordial germ cells, and other tissues. Fetal cells and cell free DNA work their way into in maternal circulation during pregnancy and the cells can persist in maternal circulation for years, a form of microchimerism.

Beyond conception and the embryonic period, somatic gene mutations regulary arise in fetuses, children, and adults in many different tissues. Some mutations are repaired, some persist and are clinically insignificant, and others make significant contributions to human disease. Cancer, for all intents and purposes, arises from somatic mutations. Cancer cells themselves then often go on to develop a bewildering array of mutations as the cancer grows and metastasizes. Mutation profiles can vary within the same affected tissue or between affected tissues. Further DNA damage can be induced by chemotherapeutic agents. Then there’s chromothripsis, where the genetic wheels come off altogether.

Beyond cancer, other medical conditions can arise from genomic variability. Trinucleotide repeats can expand and contract over time and can vary between and within tissues and may significantly contribute to adult and childhood onset neurological disease. Mosaic or segmental neurofibromatosis is caused by post-zygotic NF1 mutations.

Clonal hematopoiesis of indeterminate potential (CHIP) is the result of somatic mutations in hematopoietic tissue and occurs in about 10% of people age 70 or older. CHIP is associated with an increased risk of many diseases, such as hematologic cancers, coronary artery disease, heart failure, stroke, and pulmonary disease.

X chromosome inactivation and mosaicism are another source of intra-person genetic variability. One X chromosome will be largely inactivated in anyone who was born with more than one X chromosome. This could have significant clinical effects, such as manifesting symptoms of Duchenne muscular dystrophy or hemophilia, often depending upon which X chromosome is inactivated and in which tissue. Furthermore, people with more than one X chromosome tend to lose one of their X chromosomes in some of their cells, especially as they age, such that they are X chromosome mosaics, which might lead to cognitive impairment.

Transposable elements (transposons and retrotransposons) are DNA remnants of microbial organisms from our evolutionary past that have been integrated throughout the human genome, the evolutionary equivalent of internet cookies. Perhaps as much as 50% of the human genome is composed of transposable elements. These bits of microbial DNA regularly rearrange themselves within our genomes (thank you Barbara McClintock) during evolution and also within our bodies during our lives, rejiggering DNA sequences and contributing to the development of human diseases such as cancer, hemoglobinopathies, and neurological disorders.

The DNA of immune cells constantly alter themselves through processes such as somatic recombination and somatic hypermutation. This variability allows the immune system to respond in highly specific ways to so many different types of infection and cancers, and to help the healing process.

On top of all of this, we co-inhabit our bodies with all sorts of bacteria, viruses, protozoa, archaea and God knows what else, the composition of which changes regularly. In fact, most of the cells, and therefore most of the DNA in our body, are microbial (it varies at any given moment in time, like after a bowel movement). Since these microbes are symbiotic living parts of our bodies, their DNA is also our DNA.

Mitochondria are likely the remains of a microorganism that was integrated into host cells in our deep eukaryotic past. Mitochondrial DNA can be heteroplasmic, that is, any given mitochondrion can acquire a wide range of mutations that do not occur in other mitochondria. Heteroplasmy can be a significant source of medical conditions, depending on the degree of heteroplasmy and its distribution.

Intra-person genetic variability is one of the many reasons it is foolish and inaccurate to say that our DNA defines us. Each of us has many constantly shifting DNA sequences throughout our bodies and each sequence can play out in our lives in different ways at different times. The interaction of these sequences with each other and with our cellular, bodily, and external environments is so exquisitely and frustratingly complex that it is beyond comprehension by human or, I will wager, artificial intelligence (how could AI analyze the entirety of a person’s DNA sequences if it is impossible to capture all of those sequences at once, on top of which those sequences change over time?). Human beings are infinitely more complex than the near infinite sum of each of our body’s many genomes. We should all sing the body electric.

The love of the body of man or woman balks account, the body itself balks account
– Walt Whitman, “I Sing The Body Electric”

You Are Not Here —>

Matthew Brady’s portrait of Walt Whitman, from the National Portrait Gallery in Washington, DC. https://npg.si.edu/learn/classroom-resource/walt-whitman-civil-war-poet-and-caregiver

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All images, except for the image of Walt Whitman, were AI generated. All of the text was human-generated by me.

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by | May 27, 2025 · 9:00 AM

Guest Post: Why Deleting Your 23andMe Data Is a Political Imperative

by Katie Sagaser, MS, CGC, Licensed, Certified Genetic Counselor

Katie Sagaser is a genetic counselor, health strategist, and storyteller who has spent more than a decade translating complex science into human-centered health communication. She has worked across clinical, start-up, and industry settings to expand access to innovative genomic technologies, particularly in reproductive health and preventive medicine. Her academic writing focuses on reproductive justice, race-based medicine, and the ethical challenges of emerging genomic tools. Katie’s work is grounded in a commitment to public engagement and building trust in an increasingly complex health data landscape.

Disclaimer: The views and opinions expressed in this piece are solely my own and do not represent those of my employer, past or present, or any affiliated institutions. This content is provided for general informational purposes only and does not constitute medical advice, legal advice, or any form of professional counsel. Readers are encouraged to consult appropriate professionals for guidance related to their own circumstances.

I don’t usually check the U.S. House Oversight Committee calendar multiple times a day. But it’s been over a month since Anne Wojcicki – co-founder of 23andMe – was summoned to testify before the Committee. And I’m especially interested in what might be revealed in this interaction.

23andMe is in class 11 bankruptcy proceedings. My former employer, along with its database of ~15 million consumers, is for sale in a court-supervised auction. On May 19, Regeneron Pharmaceuticals’ $256 million bid was approved for the acquisition of substantially all of 23andMe’s assets. Wojcicki’s new TTAM Research Institute trails at $146 million as the stalking horse bidder. Until the deal closes, the fate of 23andMe and its database remains uncertain. 

As a board-certified genetic counselor, I used to believe that participation in consumer genetic research was a personal decision. But with the ambiguity of 23andMe’s future and the acceleration of authoritarian federal rhetoric, I now believe the present choice of whether to delete your 23andMe data is not just personal, but political.

Big tech, politics, and the DNA marketplace

Since its founding in 2006, 23andMe has been a Silicon Valley disruptor. Wojcicki, sister of YouTube co-founder Susan Wojcicki and then-wife of Google co-founder Sergey Brin, envisioned a future where your genome powered both personalized health and scientific discovery. In her words, “it was set up to be a database you could leverage for research.” 23andMe’s origin story was all about advancing medicine, but in today’s political climate, it invites scrutiny about what types of research may be prioritized next, and who gets to decide.

As we’ve learned from Facebook, data collection can be weaponized. Silicon Valley’s techno-optimism risks being replaced by something more extractive and predatory – and often more politically aligned with authoritarian and de-regulationist agendas.

Wojcicki is not typically included in the pantheon of politically active tech moguls like Elon Musk, Mark Zuckerberg, or Peter Thiel. But she is part of the network. In 2013, she co-founded the Breakthrough Prize (the “Oscars® of Science”)alongside Brin, Zuckerberg, and Yuri Milner, the Russian-born investor with early stakes in Facebook, Twitter, and Cadre, the fintech company previously tied to Jared Kushner. Today, Wojcicki remains on the Breakthrough Prize Board with Zuckerberg and Milner. This year’s ceremony featured Open AI co-founder Greg Brockman and Amazon founder Jeff Bezos, with Rupert Murdoch, Bill Gates, Marc Andreessen, Sam Altman, and many other business/tech giants in attendance. The Prize awards tens of millions annually to research in fields like genomics, AI, and neuroscience, positioning its founders not only as philanthropists but also as private curators of scientific legitimacy. This model is increasingly common among tech elites: use personal capital to shape public narratives about which ideas deserve funding, prestige, and attention. In addition to this soft power, Wojcicki has exercised traditional political influence in her significant donations to Democratic causes, while also championing consumer autonomy through DTC health technologies – a model offering unprecedented access, but one that’s historically operated with limited oversight and minimal integration into traditional health systems. In what may be mere coincidence – or a telling reflection of biotech’s tight-knit power circles – renowned geneticist Dr. Huda Zoghbi (a 2017 Breakthrough Prize in Life Sciences $3 million laureate) now chairs the Breakthrough Prize co-founded by Wojcicki and also sits on the board of Regeneron, the company poised to acquire Wojcicki’s former firm. Wojcicki’s proximity to power, her company’s consumer data library, and her current positioning as co-founder, majority board member, former CEO, and prospective buyer all matter. As the owner of >20% of 23andMe’s total outstanding shares, Wojcicki will financially benefit from any sale – particularly if 23andMe is purchased by a buyer within the same Silicon Valley power structure that has historically rewarded growth over ethics. 

23andMe’s database is a trove of genetic identity and self-reported behaviors from ~12 million 23andMe consumers who opted in to research. It’s one of the most diverse civilian biobanks in the world. The Genetic Information Nondiscrimination Act (GINA) has protected against employment and health insurance discrimination since 2008, but there’s no similar protection for life insurance, disability coverage, long-term care, military service, or education. And as recent years have shown across every governmental branch, even long-standing federal protections are not guaranteed in perpetuity. From the Supreme Court’s reversal of Roe, to executive orders eliminating diversity and inclusion protections in federal agencies, to growing calls for deregulation in Congress, the landscape is shifting. As such, the question of who gains access to Americans’ data becomes more urgent in terms of privacy, power, politics, and national security.

Policymakers have shown growing concern over foreign control of personal data, as seen in the efforts to force a sale or ban of TikTok due to its Chinese ownership. 23andMe confirmed that bids would not be considered from entities based in adversarial countries. But if TikTok’s collection of behavioral data was considered a national security threat, how should we classify the risk of selling Americans’ genetic blueprints – even to a domestic buyer? 

A US-based company may not raise geopolitical alarms, but geographic exclusions don’t guarantee ethical intent – or consistency with consumer expectations. This concern has now reached the legislative branch. On May 22, a bipartisan group of senators introduced the “Don’t Sell My DNA Act,” aimed at preventing companies in bankruptcy from selling genetic data without explicit consumer consent. The bill reflects growing recognition that America’s patchwork of genetic privacy laws has not kept pace with the data economy. 

It’s unsurprising that 23andMe’s top bidder was a pharmaceutical company. Together with insurers and surveillance tech firms, there’s clear rationale for such entities to have strategic interests in large-scale, de-identified genomic data. Regeneron has a large portfolio including drugs for COVID-19, diabetes, cancer, and rare diseases. Many of these therapies are expensive and inaccessible to the same communities whose data may soon power their development. 

The question is not merely who buys 23andMe’s assets. The question is: What do they intend to do with them in a system where the lines between innovation, surveillance, and profit are increasingly blurred? 

This is why Wojcicki’s Congressional testimony is so important. Whether the buyer is Regeneron, Zuckerberg, Musk, a venture-backed startup with a eugenics-lite pitch, or someone with a political agenda – there is financial incentive for Wojcicki to cooperate with their vision. I want to believe Wojcicki’s positive intent. I’ve met Anne. I’ve heard her speak with conviction about democratizing health information and protecting genetic privacy. I think she would agree with billionaire investor Marc Andreessen’s claim that, even as a Fortune 500 CEO, being able to say “‘I’m a good person’ is wildly more important than profit margins.” I believe she cares about science and research integrity. I truly believe in the mission and values of the company she co-founded. But the same infrastructure that was built to empower consumers stands at risk of being weaponized, and the people who built it may no longer be in a position to stop it. 

The uncomfortable truth is this: the surveillance and commodification of the human genome may not be an unintended consequence of Silicon Valley’s involvement. It may be the business model. 

And when the scaffolding of law, policy, and ethics collapses, what was once an act of hope and belief in science can become something more dangerous. 

From altruism to ammunition

Long before Regeneron’s bid, it’s been possible that your data would be used to develop drugs you can’t afford. But initiatives like 23andMe Research have typically been framed as altruistic opportunities – a way to contribute to science, to equity, and to discovery. Under GINA, with oversight from the Federal Trade Commission (FTC) and institutional review boards, that framework seemed ethical and secure. But if those guardrails collapse, then what was once altruism becomes ammunition.

Your data could be used:

  • To build or repurpose algorithms that assess risk for addiction, noncompliance, criminality, or other traits that could be considered “undesirable”
  • To profile voting behavior or susceptibility to disinformation, and tailor political campaign advertising accordingly 
  • To develop tools for insurance exclusion, policing, or even surveillance by genetic subgroup

This isn’t theoretical. The Chinese government has already built a massive DNA surveillance database to include data from individuals with no history of serious criminal activity. In the US, the Department of Homeland Security has expanded DNA collection from immigrants, raising concerns about privacy and potential misuse. The Snowden leaks exposed the scope of US domestic surveillance, revealing that government agencies had secretly collected massive volumes of personal data from phone and tech companies with the full cooperation of these entities. Whether one views Edward Snowden as a whistleblower or a traitor, the documents he leaked revealed that systems designed for one purpose can be quietly repurposed and expanded, often without public knowledge or consent.

Meanwhile, US public health rhetoric is veering towards eugenics. Secretary of Health and Human Services Robert F. Kennedy, Jr., recently described autism as something that “destroys families,” echoing the decades-old eugenic argument that neurodivergence is a preventable flaw. Kennedy has also promoted “wellness farms” for individuals with addiction and mental illness – proposals that have drawn chilling parallels to institutions that historically housed disabled people under the guise of care, but enacted forced sterilizations and labor. 

NIH Director Dr. Jay Bhattacharya recently announced the launch of a new real-world data platform designed to integrate “diverse data enabling researchers to examine complex factors influencing autism spectrum disorder rates.”  The platform will aggregate data from public and private sources, including wearables, pharmacy chains, health organizations, claims/billing, and clinical encounters. It’s unclear whether individual consent will be obtained for data inclusion – a gap that aligns with current federal rules regarding de-identified, aggregate data under HIPAA and the Common Rule. Notably, the platform’s initial data sources will include lab and genomic data from patients treated by the Department of Veterans Affairs and Indian Health Service – two federally administered healthcare systems that fall outside the scope of GINA’s health insurance nondiscrimination protections (as these programs are not “health insurers” as defined under the relevant statutes GINA amended*). The NIH is also exploring expanded access to data from the Centers for Medicare and Medicaid Services (CMS). This expansion would bring genomic data from disproportionately low-income, elderly, and disabled Americans into the same AI-enabled platform. In combination with data from veterans and Indigenous patients, the project’s priorities raise questions about who is being studied under this administration, and why. Furthermore, the White House recently issued an executive order eliminating disparate-impact liability, a key civil rights tool. In a world without GINA and disparate-impact liability, algorithmic decisions based on genetic data could exacerbate existing inequalities without legal recourse. 

In this climate, it’s not hard to imagine how a vast genomic dataset could be used to identify, profile, or even segregate people based on their neurotype, ancestry, or perceived productivity. Today, such a genomic dataset in the hands of the wrong buyer is a risk to privacy, public health, civil rights, and democracy.

The limits and fragility of GINA

Genetic counseling involves many discussions about GINA’s limitations – but have we really considered them all? There’s no protection against algorithmic profiling, behavioral targeting, or the secondary use of genetic data to shape public opinion or influence voter behavior. In a second Trump administration, particularly under the influence of figures like Stephen Miller, creating an end-run around GINA – not through repeal, but by defunding enforcement, narrowing interpretation, or passing competing legislation – could be framed as part of a broader effort to deregulate healthcare, dismantle administrative agencies, or restore “freedom” from federal oversight. In a world where GINA is quietly eroded, there’d be no federal barrier to a private buyer – or the government itself – using genetic data (even de-identified) to profile, exclude, or penalize individuals based on perceived risk. What happens when your most personal biological information is no longer protected by the government – but owned by it?

Multiple states petitioned the bankruptcy court to appoint a Consumer Privacy Ombudsman (CPO) during the 23andMe sale. A CPO with expertise in privacy law, cybersecurity, and medical data governance will assess whether any proposed sale of personally identifiable information is consistent with 23andMe’s existing privacy policies and complies with applicable law; there will also be a formal report issued at least seven days prior to any sale hearing. While this is important for consumer protection, the CPO’s authority is still limited. The CPO can’t control what a future owner, especially a governmental entity, might do with de-identified data once a sale is finalized. Even if states have or enact strong genetic privacy laws, those laws only apply to private actors – not to federal agencies operating under national authority. 

Many of us didn’t see this coming. We mistook marginalized communities’ skepticism of federal protections as ignorance, when in fact it was inherited wisdom shaped by history and experience we chose not to hear.

Research participation without protection can lead to exploitation

Informed consent only functions when the system itself is trustworthy. When federal protections collapse and genetic data is a commodity, then consent becomes a trap. Consent forms can’t shield individuals from misuse of their data in the absence of legal protections or government accountability. Privacy policies don’t protect you from a collapsed regulatory state.

If federal protections disappear, and agencies like HHS, NIH, and the FDA are dismantled, then research participation is no longer voluntary in the way we imagined. It becomes political, strategic, and risky.

We have to stop asking if patients and consumers are making “informed choices,” and start asking whether the system is still safe enough for “choice” to be meaningful.

The decision to delete is now a political act

I used to think deleting your 23andMe data was a personal decision. But I now believe it is a political one – and perhaps the most radical act of autonomy one can take at this moment in the second Trump administration. 

Keep in mind, when a customer submits a 23andMe deletion request, deletion may take up to 30 days to complete, and it’s technically possible the data could still be used in the interim. Furthermore, deleting your data doesn’t remove it from any prior research studies. Still, deletion remains the most direct way to prevent your genetic and phenotypic data from being accessed or repurposed by 23andMe’s future owner – whether that’s Regeneron or someone else.

Deleting your data may be a scientific sacrifice, but it is also a powerful refusal to let your genome be sold, leveraged, or weaponized. It is a protest against the commodification of identity and a defense of vulnerable communities. And it is, perhaps, our last chance to opt out.

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*GINA Title I amended the Employee Retirement Income Security Act of 1974 (ERISA) to prohibit discrimination by group health plans and health insurance issuers, but ERISA explicitly excludes government plans:

  • 29 U.S.C. § 1003(b)(1): “The provisions of this subchapter shall not apply to any employee benefit plan if — (1) such plan is a governmental plan…”

29 U.S.C. § 1002(32) defines a governmental plan as a benefit plan “established or maintained for its employees by the Government of the United States, by the government of any State or political subdivision thereof, or by any agency or instrumentality of any of the foregoing.”

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by | February 16, 2010 · 4:33 PM

Glenn Beck Hates Babies: Death Panels, Newborn Screening, Fox News and Me

 “You are from the Glenn Beck Show?” I asked. My voice betrayed what for lack of a nicer word might be called skepticism.

 “The Glenn Beck Show,” she answered, her tone sliding past defensive into a smug I-know-what-you-are-thinking defiance that reminded me wordlessly of Fox News’ Nielsen dominance.  “We were wondering if you would like to come on the air tonight, to discuss newborn screening.  We are interviewing a woman who is suing the state of Minnesota for taking her child’s DNA without parental consent.  We were told you might provide some expertise on the issue.”

A quick succession of questions went through my head.  What was something as routine as newborn screening doing on the Glenn Beck Show?  What expertise were they looking for from me?  I reviewed what I knew on the subject.  Our system — a hodgepodge of opt-in and opt-out, implied consent and presumed consent – state-by-state regulations put in place in a simpler era, when newborn screening meant looking for PKU and a handful of other conditions.  It was not a system designed to handle today’s complex screening panels, and certainly not the use of newborn screening samples for research on genetic disease, birth defects, environmental exposures, chromosome studies and the like.  The topic interested me.  Being on television interested me.  Could I say yes?  Absolutely not, I told myself sternly.  This was Glenn Beck.  Who knew what crazy angle they would take?  There might be shouting.  What if he cried?  What on earth would I do if he cried?

 “Yes,” I said.  “I would be happy to.”

I was in New York, she noted, so I could come in and sit with Glenn in the studio.  With Glenn.  We were on a first name basis now, me and Glen.  Oh dear, I thought – or perhaps it was some other four letter word starting with ”sh”.  I poked around on the internet, searching for a few salient facts.  Minnesota tested for 53 conditions, 24 more than the 29 “core conditions” the ACMG designated top candidates for newborn screening.  The state permitted the use of newborn screening blood spots for research, usually de-identifying the samples first.  If you had a child in Minnesota, his or her DNA might be used to check the incidence of CMV infection, or the feasibility of newborn screening for Wilson’s Disease.  There was a study of mercury exposure.

I barely had time to break into a cold sweat in my closet when the producer from the Glenn Beck Show called back.  “Change of plans,” she said.  “We’re going in a different direction.”  A different direction — I was no longer needed.  They liked some other expert better.  I felt that peculiar pang you feel when people you despise and disdain don’t love you.  It was like junior high school all over again.

 And then I watched the show, which is to say there’s a first time for everything.  They hadn’t booked another expert in place of me (my heart gave a small, involuntary leap).  They had booked instead a state senator from Texas who was so completely insane that he made Glenn look reasonable by comparison.  The government was using newborn screening as an excuse to take DNA from children, the senator said.  That’s right, Glenn agreed.  It was like Nazi Germany, the senator insisted.  It could be, Glenn agreed.  Soon there would be concentration camps for people whose DNA the government found inferior.  Glenn tilted his head, like he couldn’t quite get his brain around that.  Probably not, he said, after a significant pause.

 Now I understood why I had been dis-invited for this crazifest.  They didn’t reject my expertise – they rejected all expertise.  Expertise was problematic in that facts could not be relied upon to support the narrative.  This wasn’t a story about newborn screening; it was a story about  government power encroaching on individual liberties.  The woman from Minnesota, a petulant but mild-mannered soul who had some good points to make about the actual risks of amassing a DNA database without proper consent – a practice confined to newborn babies and convicted felons – but she was left in the dust, unable to take the necessary next step of contextualizing newborn screening in the socialization of the American healthcare system.

 Complex issues are always at risk of being misused by in the service of a simple story that feeds into existing fears and beliefs.  The more complex the issue, the easier it is to cherry-pick facts to provide ersatz credibility.  In recent attacks on newborn screening, the underlying narrative is fear of big government, as illustrated by a CNN story last week titled: “The Government Has Your Baby’s DNA.”  Against all odds, this is actually a decent, balanced article – but if that headline doesn’t make you crazy, try reading the comments, several of which suggest that newborn screening is an invention of the Obama administration or a 21st century incarnation of Big Brother.  Death panels for the Headstart crowd.

 I applaud the spirit of the many genetic counselors who immediately looked to respond to the CNN article (No one said boo about the Glen Beck Show; was I the only one watching?).  Still, I think it is important to look at two key points before formulating any response:

1. Keep in mind the narrative.  Most people cannot be expected to care that much about newborn screening except as it fits into a larger context.  The fact that you are anxious to educate them does not mean that they wish to be educated.  Therefore, if the narrative is about a government power grab (and it is), then it probably won’t help to tell people that HIPPA and GINA will keep their babies safe.  I’m guessing that they will not take comfort in knowing that Washington has created two new acronyms to safeguard their children’s DNA. 

Ignoring the narrative is one big reason why the well-intentioned and well-informed have spent years dumbfounded by the intransigence of parents who continue to believe that vaccines do not cause autism.  I know it is hard to accept, but it just doesn’t help to offer someone the gold standard of peer-reviewed science when their meta-narrative is about how the medical establishment has been corrupted by for-profit entities.

 You can’t tell people whose fundamental issue is that they don’t trust the government that they don’t have to worry because the government will take care of anything.  What other options do we have?  Let’s try to remember that this is not about government rights; it is about baby’s rights.  The message has to be that every baby has a RIGHT to newborn screening.  We can’t get sidetracked into defending the will of the government to defend privacy and autonomy.

2. The narrative doesn’t just obscure the facts from those who believe it; it obscures the facts from those who despise it.  Let’s not lose track of all the valid concerns that have been raised by parents who object to a lack of education and consent in the use of newborn screening samples.  As much as we would like to insure parents that a database of blood samples would never be misused, it’s a fool’s business making promises.  The only sure thing about predictions is that some of them will be wrong.  No one anticipated the development of an algorithim that could match DNA samples to individuals within pooled DNA in GWAS, which sent government agencies scrambling to rewrite the rules for use of supposedly anonymous DNA registries.  No one anticipated that a teenage British boy conceived by sperm donation would be able to use ancestry testing designed for genealogy buffs combined with a few rudimentary facts like date of birth to find his donor dad.

 All other innovations in genetic services require vigilance and thoughtfulness.  But it is worth the effort, because every baby has a right to newborn screening.  We can’t sacrifice the possible to the paranoid, because that would be shortchanging America’s children.  That’s what I would have told Glenn Beck.  I might even have cried.

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