Gene Scans For Newborns Open Big Privacy Questions : Shots - Health News A study offering the parents of newborns a scan of thousands of the baby's genes raises a big question: Do you want this kind of information on disease risk in your child's permanent record?
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Would You Want To Know The Secrets Hidden In Your Baby's Genes?

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Would You Want To Know The Secrets Hidden In Your Baby's Genes?

Would You Want To Know The Secrets Hidden In Your Baby's Genes?

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  • <iframe src="https://www.npr.org/player/embed/499651062/500034975" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
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RENEE MONTAGNE, HOST:

Today in Your Health, we take you to the cutting edge of medicine - the maternity ward at Brigham and Women's Hospital in Boston. That's where a team of genetic counselors is trying to convince new mothers and fathers to let them genetically sequence their newborns. Mary Harris from member station WNYC reports.

MARY HARRIS, BYLINE: So imagine you've just had a baby, like Lauren and Ian Patrick have.

LAUREN PATRICK: You're getting your birth certificate.

HARRIS: This is Finn. He's just 4 days old.

(SOUNDBITE OF KNOCKING)

HARRIS: Then there's a knock on the door from a genetic counselor, Shawn Fayer.

SHAWN FAYER: Hello.

IAN PATRICK: Hey, how are you?

FAYER: I'm Shawn of the BabySeq project. How are you?

HARRIS: And he offers you the chance to do something that sounds pretty cool.

FAYER: Shall we get started?

HARRIS: He wants to analyze your baby's genome and tell you what's in there.

FAYER: Now we can sequence all genes all at once for a relatively lower cost than years ago.

HARRIS: If Lauren and Ian say yes, they'll be part of a study called BabySeq, and they'll have a chance to get a glimpse at baby Finn's genetic blueprint.

FAYER: How does that sort of information sound to both of you?

L. PATRICK: I think it sounds like something that we'd be interested in having.

HARRIS: They won't give parents their baby's full genetic code, more like the executive summary. Doctors will tell families if a baby's genes point to a problem that might impact him as he grows or if genetic mutations mean certain drugs won't work as well on him. Researchers will then follow families for years to see whether getting sequenced actually makes babies like Finn any healthier.

I. PATRICK: My initial reaction was that why wouldn't somebody do this or why wouldn't they want the information?

HARRIS: This is Finn's dad, Ian.

I. PATRICK: For me, more information is better, even if it's not always good, I think.

HARRIS: It depends on what you find. Dr. Robert Green is leading this study.

Do you remember the first time someone called you up and said, looks like we've found something?

ROBERT GREEN: Well, there are so many changes in everyone's DNA that we actually find something on everybody's sequence.

HARRIS: Which may or may not cause any harm. So far, he's sequenced about 50 babies. Five of those have had congenital conditions their parents wouldn't have known about otherwise, heart problems mostly, and two babies had pharmacogenetic variants, meaning certain drugs might not work as well on them.

But most of what Green is finding in just about every baby he screens are recessive genes that would only be passed on if these babies have kids of their own with a partner who is also a carrier. Green says that means parents might want to think more seriously about how genetically compatible they are with their partners before they have kids.

GREEN: If you think about it, we're just leaving it up to chance to decide whether two people who meet and decide to have a baby are actually carrying a mutation in the same gene.

HARRIS: The potential in all this genetic information gets Green excited. He spent years in a completely different field, neurology, but he went back into training at 52 years old to study genetics. He's had his own genome sequenced three times, so he's been surprised at how hard it's been to convince new parents to take this test.

GREEN: Overall, about 6 percent of the families that we approach are saying yes.

HARRIS: Wow. That seems really low.

GREEN: It does seem really low.

HARRIS: So far, they've spoken to more than 2,400 families. Fewer than 200 have said yes. Parents are worried about bad results or results that aren't clear, and there's good reasons for that. The babies, Green says, might have heart problems. None of them have symptoms, so it's hard to say if they're sick or not.

GREEN: We're very clear with parents about the fact they might get unpleasant information. They might get information that they didn't expect. They might get information that's really hard to interpret. It's quite confusing. They might get information that could theoretically be used against their child in the future.

HARRIS: And when you're a new parent, all that information can feel overwhelming.

(SOUNDBITE OF PHONE RINGING)

HARRIS: Back in the maternity ward, new mom Lauren and her husband, Ian, who started out so bullish about screening, spend almost an hour talking to their genetic counselor about all the ways this sequencing can go wrong.

I. PATRICK: What are most people's sort of reluctancies into doing this type of...

HARRIS: They're worried about their son's privacy and also discrimination.

I. PATRICK: What are they afraid of or what are they - I don't know how to put it the right way.

(LAUGHTER)

FAYER: Yeah, no, that's a very good question. So there's actually...

HARRIS: The genetic counselor tells Lauren and Ian that while federal law actually prevents genetic discrimination when it comes to health insurance in the workplace, it isn't against the law for life insurers to use this information to pick and choose who they'll sell their plans to, and that worries them.

FAYER: So at this point, what are we thinking? Is it something you would like to have a little bit more time to think about? Or we can go over the consent forms now if you would like, whatever works for you.

L. PATRICK: I think take a day. Do you want to take a day?

I. PATRICK: Good. That would be great, yeah. Just the insurance thing's an interesting question.

L. PATRICK: Yeah, for me, too.

I. PATRICK: And I'd hate to put him in that position but...

L. PATRICK: Yeah, exactly.

I. PATRICK: ...At the same time, I sort of believe in it, but...

L. PATRICK: Yeah.

HARRIS: Lauren and Ian went through six failed rounds of IVF before this surprise pregnancy, so Finn is a much-hoped-for baby. They say they just want what's best for this little guy.

L. PATRICK: I think we pretty much left that conversation thinking it wasn't for us.

HARRIS: I called Lauren a couple weeks later to see what they decided. In the end, she just didn't feel comfortable with all the unknowns.

L. PATRICK: It really gave me pause that this would be a permanent medical record that private companies would have access to, so that was just my full stop in the end.

HARRIS: Green says he gets this hesitation.

GREEN: We are looking for all sorts of unanticipated variations in DNA. And we say right up front, we don't know what they all mean. We don't know what they're all going to mean for your baby. Would you still like to participate?

HARRIS: Right now, a lot of parents just aren't sure. For NPR News, I'm Mary Harris in Boston.

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