[Cmacc] WEF - GA4GH-REWG - Codification of Consent

[Prainsack, Barbara]

Many thanks for this, Jim and Primavera; this looks great. 

Two very small comments: 

(1) Under pt 2 ("purpose") I would suggest replacing "Although our DNA is very similar to each other,..." by "Although all human DNA is similar..." (otherwise it may not be entirely clear what "our" refers to)

(2) Under pt 7 ("risks of participation") I find the comparison with fingerprinting potentially confusing. Would it be possible to change this sentence to: "It is always possible to identify someone if certain data are put together", or "In principle, it is possible to identify someone if certain data are put together."

Let me know if you need somebody to help polish the German translation - I could probably find a student who is happy to help.

And yes, please add me to the list, if possible - many thanks!

Best
Barbara

-----Original Message-----
From: James Hazard [mailto:james.g.hazard at gmail.com] 
Sent: 13 November 2014 20:24
To: Bartha Maria Knoppers, Prof.; Brookes, Anthony J. (Prof.); Prainsack, Barbara; John Wilbanks
Cc: Edward Dove; Primavera De Filippi; Mihaela Ulieru; Raymond Krasinski; Wallace, Susan E. (Dr.); Anne-Marie Tasse, Me; cmacc at lists.commonaccord.org
Subject: Re: WEF - GA4GH-REWG - Codification of Consent

Hi all,

Primavera and I did a demo of a use of the Consent, with French and German language variations.
http://www.commonaccord.org/index.php?action=list&file=GenomicsAndHealth/REWG/Demo/

Jim

We have a mailing list, on which a few of your are registered. Sorry for double delivery.  If any others want to be put on the list, please let me know.

BONUS:

The English language form of the standard Consent now can include any of the variations by Knoppers, Prainsack, Wilbanks and P3G.  The sets of variations are expressed in a (rather technical) set of links (reflecting the structure of the discussion):

The model Consent now references a list of variations (+.=[..P3G et al
...]):
http://www.commonaccord.org/index.php?action=source&file=GenomicsAndHealth/REWG/Consent/ENGLISH/Form_V01

The list of variations includes the P3G, BMK and BP suggestions. JTW's list is attached as (JTW.=[...list...]).  It also reflects that JTW's "for research purposes" should be replaced with BMK's "for biomedical research purposes".
http://www.commonaccord.org/index.php?action=source&file=GenomicsAndHealth/REWG/Consent/ENGLISH/V01_P3G_Library01

A use of the modifications can been seen in pink at:
http://www.commonaccord.org/index.php?action=source&file=GenomicsAndHealth/REWG/Demo/Roberta_Robinson_US
(click Render tab and look down to Section 4)