“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.
The DNA Exchange 
Americans relish freedom, especially the freedom to choose. We have a historical fear of governmental tyranny (ex: American Revolution, Bill of Rights, Civil War, which was partly about states’ rights, depending on your view, anti-war movement of 60s, tea-party movement, etc.). Americans protest whenever some unknown entity decides what’s good for us (ex: resistance to genetically-modified foods, seat-belt laws, helmet laws, laws banning artificial sweeteners, etc.) and that may not be a bad thing. I suspect the “outrage” about newborn screening will die down when parents are asked for their consent.
I agree with your point that there are irrational people out there who will never fully embrace or even try to understand things like GINA and HIPPA. However, I would argue that it is important to put this education out there because I am sure there are rational reasonable people who were reading the CNN article (even though they did not feel inclined to join the government bashing commentators). Isn’t that our job as genetic counselors, to educate the public/ our patients? Sure we know they will not always listen, but I have always felt it was our job to keep trying for the people who really do want to hear our message.
In response to the comment about things dying down after parents are asked for their consent, I would urge you to realize that, although ideal, this concept is not as easy as it seems. First of all NBS education for new parents is not as great as you might think (we are working on this, but it is a slow process). There is still enormous need to educate the people administering the screens to better understand what tests are covered on the NBS and if they are DNA based or not (different in every state, and not every state offers DNA testing- yet), the logistics of blood spot storage, how long the samples are kept, info on the states IRB process etc. Although I feel that this should indeed be the ultimate goal, please realize it is not just as easy as- we are going to start to ask for consent now. Some states do indeed ask for consent for the NBS; however, in this case you would actually need to ask for two separate consents- the consent for NBS and the consent for blood spot storage. There is also a fear, if the nurse/health care professionals explaining the test do not understand the difference well enough, they might confuse the parents and family may opt to decline NBS all together and babies would go undiagnosed. New protocols would also need to be developed to either destroy the blood spot or to return the spot to the family.
This topic is very tricky and there is no easy answer, but one thing is clear, states are trying to adopt policies that work the best in this current environment, and with all this media hype more and more parents are questioning newborn screening.
I feel so much happier now I uendrtasnd all this. Thanks!
Laura,
This is a great distillation of the issues. You articulated the reason for my lingering unease about this topic in a way that I hadn’t yet been able to name for myself. I wrote a letter to the health desk of CNN (which I think may be posted here by Allie Janson in a few days) regarding their recent story, but I was still left feeling somewhat impotent and had an instinct my words would fall on deaf ears. I wish I had read your thoughts before hitting send on my letter – I’d have had a thing or two more to add. The CNN health desk is slightly different from the Glenn Beck show, but I think the same underlying cultural issues are responsible for their slant on the story. And, it is exactly the fact that the CNN health desk is not supposed to be the same as the Glenn Beck show that makes it so concerning that their slant was so obvious. Like Carrie, who commented above, I feel a responsibility to provide accurate information and reliable resources to the public when they are neglected by reporters. But I also want to make the underlying cultural/political manipulation transparent to the public. It isn’t that I necessarily oppose the values being expressed, just that they should be discussed in the appropriate context, named for what they are, and not confused with the issues that are most important in personal medical decision-making.
Yet, I have to echo the sentiment of another reader who responded to your blog on the NSGC listserv, in that I feel at a loss to know how to appropriately confront this without, as you put it, throwing gasoline on the fire. I think you’ve hit upon a good idea, which is to re-frame the issue in the terms and language of individual rights. But it doesn’t entirely address the cultural gap between most health care providers and those member of the public who distrust institutions which, let’s face it, can be pretty paternalistic. I counseled a family in clinic the other day who were considering opting out of newborn screening because of the CNN report. I was so glad they asked about it, and glad to have the opportunity to correct misperceptions and to help them realistically weigh the benefits and risks. Unfortunately, it was difficult for me to manage my own indignation about the report which was still rather fuming at the time. I forgot my counseling skills in that moment and ended up giving the family a lecture. In the end, I think they just saw me as part of the government system that was out to dupe them. Your framing this issue as a political message helps me realize that perhaps we should approach it like any other cultural difference we may have with our patients – with curiosity and probing, with reflection, validation, normalization, and empathy – before trying to adjust beliefs based on inaccurate information. That tends to work in a counseling session, but is there a way we can apply that to interactions with the media? This is a skill I don’t have – I would have been terrified if I had been asked to speak on the Glenn Beck show!
Thanks for making me think about the issues from a different perspective.
The above article makes little attempt to give voice to parents who gladly accept the process of screening their newborn for the 18 or so treatable diseases, but quite rightly reject in principle, the retention of their newborn’s DNA indefinitely by the state.
“In recent attacks on newborn screening, the underlying narrative is fear of big government,” –
Not necessarily big government. I think the analysis is simplistic and seeks to stunt debate by framing it as a partisan political issue. At its core, this is an ethics issue. Consent is assumed to screen newborns for various treatable diseases (the intended purpose). To then retain this DNA, warehouse it and allow further unspecified research to be conducted above and beyond the intended purpose, is an egregious breach of the trust and good faith placed in the various health authorities.
The continued lack of an open and transparent collection and use policy combined with the condescending, patronizing attitude from some members of the medical community (and author of the above article) will serve to erode the trust and confidence of parents in the prospective handlers of their newborn’s dna.
There’s no need to grapple with unspecified “complex issues” or the inability of Twila Brase to “contextualize.. newborn screening in the socialization of the American healthcare system”, when what we’re dealing with is a simple matter of parental consent and medical ethics!
This issue is about baby’s rights and by default the protector of that baby’s rights – the parent/guardian. The government and the geneticist do not have any rights in this process, and I think the spate of lawsuits we’re seeing is a grassroots reaction aimed at re-enforcing this truth in a bid to limit and regulate the potential future effects of a runaway medical discipline.
“We can’t sacrifice the possible to the paranoid, because that would be shortchanging America’s children.”
Unless of course it infringes upon the inalienable rights outlined in your constitution, I presume?
I enjoyed your article, Laura, and agreed with pretty much every point you made. For your sake, I think it is a good thing the Glenn Beck Show “cancelled” you. You showed courage by saying yes to the show producer, and your willingness to represent the voice of the genetic counselor speaks volumes of your character. But you wouldn’t have had even one full day to prepare to go up against Glenn Beck on THE Glenn Beck Show. As you wrote, the show didn’t really want to interview someone with expertise. Mr. Beck and the show producers were trying to forward an agenda. You or any other defender of the value of NBS would have been trampled underfoot or cut-off before being allowed to make a single valid point. The Glenn Beck Show is just one example of how there are many different perspectives in the world and that some people place other values like personal liberty above other values like education/knowledge. I would say most genetic counselors place a great deal of value on education, so it is very frustrating when our efforts are undermined by public figures like Glenn Beck.
I trace my family history so I will know who to blame.
That is very funny.