As a participant, I can choose to reveal my real name on my public profile. I can also remove my real name from my public profile.
If you don't have your real name on your public profile:
On the public profile page, above "Personal Health Records" a button that "Add Real Name".
"You will be releasing your real name: "XXXX X XXXXXXX"
to be publicly displayed on your profile.
Your name will be associated with other data, including genome or health data you have shared. Remember that even if you decide to remove it from your PGP public profile later, others may have created copies of your data outside the PGP.
Even if you do not release your real name, genome and health data is highly identifiable. The PGP is "non-anonymous", anonymity cannot be guaranteed.
[Yes, add my name to my public profile]
If you've added your real name, a button next to it that says: "Remove Real Name"
"You've asked to remove your real name from your public profile.
Your name will be removed from the PGP profile, but remember others may have created copies of your data outside the PGP.
[Yes, remove my name from my public profile]
Updated by Tom Clegg almost 9 years ago
app/views/profiles/public.html.erb, I think the heading "Real Name" should appear when the user is logged in. I've pushed a commit d690386 to this effect, also fixing up the indentation a bit.
<strong><%= @user.full_name -%></strong> - <% else -%> - <% if logged_in? and @user == current_user %> + <% elsif logged_in? and @user == current_user %> + <h3> + Real Name <%= link_to "[Add real name]", add_real_name_path -%> - <% end -%> + </h3> <% end -%>
I think it would be good to use
get instead of
config/routes.rb since we don't intend to respond to any post/put/patch/... requests here. (Also, one less thing to do for rails4, which doesn't like "any method" routes.)
app/views/admin/researchers/third_party.html.erb is new in this branch. Is that intentional? (Maybe an unrelated bugfix?)
The rest of my comments are just language bikesheds. I don't think any of them should prevent merging, or override any discussion that's already happened elsewhere.This phrase is weaker than it should be:
- Existing: others may have created copies of your data outside the PGP.
- Suggestion: researchers and search engines will have already downloaded and stored copies of it, and this cannot be reversed.
- Extreme suggestion: the link between your name, your participant ID, and your other public data -- like all other information appearing on public web sites -- will have been downloaded and archived by researchers, search engines, health providers, insurers, and government agencies. It will be impossible to know who has kept a copy.
- Existing: The PGP is "non-anonymous", anonymity cannot be guaranteed.
- Suggestion: Participation in the PGP should never be considered anonymous or private.
- Existing: You've asked to remove your real name from your public profile.
- Suggestion: You are about to remove your real name from your public profile.