26.10.2014 Views

Entire Transcript in Adobe Acrobat Format - National Reference ...

Entire Transcript in Adobe Acrobat Format - National Reference ...

Entire Transcript in Adobe Acrobat Format - National Reference ...

SHOW MORE
SHOW LESS

You also want an ePaper? Increase the reach of your titles

YUMPU automatically turns print PDFs into web optimized ePapers that Google loves.

61<br />

1<br />

2<br />

3<br />

4<br />

5<br />

6<br />

7<br />

8<br />

9<br />

10<br />

11<br />

12<br />

13<br />

14<br />

15<br />

16<br />

17<br />

18<br />

19<br />

20<br />

21<br />

22<br />

23<br />

24<br />

much more explicit to people to br<strong>in</strong>g it to their attention<br />

to th<strong>in</strong>k about ways <strong>in</strong> which they might be alerted.<br />

The other question is what k<strong>in</strong>d of check offs<br />

or limitations can people provide? Want<strong>in</strong>g to be<br />

recontacted for future <strong>in</strong>volvement <strong>in</strong> studies. Want<strong>in</strong>g to<br />

limit it to certa<strong>in</strong> diseases.<br />

DR. MURRAY: Right.<br />

Steve and David?<br />

DR. HOLTZMAN: Just to walk through a little<br />

bit of the th<strong>in</strong>k<strong>in</strong>g and here it may be more my th<strong>in</strong>k<strong>in</strong>g<br />

than the subcommittee's, I th<strong>in</strong>k.<br />

I start <strong>in</strong> the research studies box of tissue<br />

to be used <strong>in</strong> the future <strong>in</strong> an anonymized manner. There is<br />

the case where we are not say<strong>in</strong>g you just get a -- it is --<br />

s<strong>in</strong>ce you are <strong>in</strong> a context of a researcher describ<strong>in</strong>g the<br />

specific research the question is whether or not you can<br />

get an open ended consent to future at this po<strong>in</strong>t<br />

unenvisaged studies.<br />

DR. EMANUEL: Yes.<br />

DR. HOLTZMAN: Some have argued <strong>in</strong> the<br />

literature that that cannot be <strong>in</strong>formed consent so,<br />

therefore, you should not be able to do it. You can only<br />

use the sample for a certa<strong>in</strong> study and then you have to go<br />

throw it out, et cetera.

Hooray! Your file is uploaded and ready to be published.

Saved successfully!

Ooh no, something went wrong!