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Friday, February 3, 2006

Session 7: Public Comments

Susan Poland
Michelle Lloyd-Puryear

CHAIRMAN PELLEGRINO: We've reached the time for comment.  We have one person who has requested the floor, Ms. Susan Poland.  Before doing that, I thank once again our two presenters, their being with us and sharing their wisdom, also for being so wonderfully obedient to my request for precision and doing it so gracefully.

Ms. Polland.


MS. POLAND:  This will be short because I don't have a good voice, but I was struck when you were talking about the state liability holding the Guthrie blood spots.  One of the meetings I had gone to in this past few months was the Secretary's Advisory Committee on Genetics, Health, and Society, and Francis Collins was there talking about a new initiative from the National Human Genome Research Institute of creating a large resource of hundreds of thousands of people getting their DNA and going out.

They were talking about also the expense of going out to get informed consent from these people and the whole bit, and it dawned on me while I was there you've got these newborns being screened, and you can get their DNA.  So why not relieve the states of the liability and have a federal repository where after three months or whatever, they just send them off.

To me the only problem would be anonymization and duty to recontact that would make it extremely expensive.  And while the initial newborn screening may help the newborns then that get the screening, the long-term resource where they can then have studies be anonymized will actually help them probably when they're adults or they're children.

That's my only comment.  I just want this group to be aware what that group is working on.

CHAIRMAN PELLEGRINO:  Thank you, and we might respond.

Dr. Rowley.

DR. ROWLEY:  Can I respond?  The problem with anonymizing specimens is that there's no way to go back to the family and give them that information.  So if you're going to go to that kind of effort, then you have to have a way to put that into the context of the family.


DR. ROWLEY:  And obviously with privacy, et cetera, but we're doing this in other conditions where there is genomic testing, and you find a mutation.  You then can go back and find out about the family history or the response to treatment of a cancer, et cetera.

MS. POLAND:  Dr. Rowley, I thought of that, too, and I thought it's actually part of what you all were saying is a system.  It initiates a system.  It becomes part of a resource, and then it's incumbent upon the doctors that are seeing these children or the parents or whatever to monitor the system to then inform.  It's part of the continuing care.  It goes through a step rather than go up a step and then back, if you follow that.


I have another request for comment.  The time is short, and that's why I'm moving this along.  Michelle Lloyd-Puryear — I hope I pronounced that correctly — Chief of the Genetic Services Branch of the Maternal and Child Health Bureau.

MS. Lloyd-Puryear:  Thank you.

And I'm just inviting you to come to the Advisory Committee on Inheritable Disorders and Genetic Diseases in Newborns and Children, who is actually overseeing many of the issues that you're talking about around screening for newborns and children.

I'm the Executive Secretary.  So you have my contact information.  So any of the concerns you have, focus concerns, come to us and we'd be glad to discuss them with you and certainly the committee would be glad to discuss any of the issues with you.

DR. ROWLEY:  Can I ask for a point of information?  Because two or three or four years ago there was a proposal, and I think through your institute of trying to do a major study of collecting DNA in both children as they're born and in young and families and trying to do a broadly based genomic screening study.  It's my impression that because of the size and the complexity and the lack of agreement amongst various participants that that proposal has not yet seen the light of day in terms of actually becoming a functional study.

MS. Lloyd-Puryear:  I'm at the Health Resources and Services Administration.  You're talking about an NIH study.

DR. ROWLEY:  Right.

MS. Lloyd-Puryear:  And you're right about that, the National Children's Study.


DR. BOTKIN:  Yes, a little bit of information.  That study is up and running to the extent that there are seven or eight vanguard centers around the country that have been named.  There is a protocol that is being developed, and the plan is to follow 100,000 kids for 20 years, including DNA acquisition early on and a variety of tests with some tissue banking.

And so it is a monumental study that remains to be fully funded by Congress at this point.

CHAIRMAN PELLEGRINO:  Any other comments?

(No response.)

CHAIRMAN PELLEGRINO:  Well, thank you all very much for your attendance, particularly the Council members.

(Whereupon, at 11:51 a.m., the meeting was adjourned.)

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