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patient because they have such an <strong>in</strong>terest <strong>in</strong> genetic<br />

constellation they want it to be studied more.<br />

Now whether we build that <strong>in</strong> to the model at<br />

the onset or have a simplified model which adds these <strong>in</strong><br />

sort of as variations on policy I th<strong>in</strong>k we need to argue<br />

out but certa<strong>in</strong>ly we do not want to lose track of the<br />

po<strong>in</strong>ts you were mak<strong>in</strong>g, Alex, about how the fact that it is<br />

encrypted or presumably at least the possibility of<br />

unencrypt<strong>in</strong>g and there may be valid moral reasons for<br />

want<strong>in</strong>g to do that or compell<strong>in</strong>g more reasons to do that <strong>in</strong><br />

some situations.<br />

Obviously you cannot do that if it was<br />

collected anonymously as opposed to collected with<br />

identifiers which are somehow stripped or coded but that is<br />

someth<strong>in</strong>g we started to talk about yesterday and I th<strong>in</strong>k it<br />

is fair to say that we have not quite resolved that one.<br />

DR. EMANUEL: Can I say someth<strong>in</strong>g?<br />

If you th<strong>in</strong>k through these boxes there are<br />

three and only three protections, I th<strong>in</strong>k, that you can<br />

have. In each of the boxes you can ask the question has an<br />

IRB reviewed the protocol.<br />

I have never had a compla<strong>in</strong>t about the volume<br />

of my voice.<br />

You can ask the question has an IRB reviewed

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