personal privacy in public projects
TRANSCRIPT
Personal Privacy in Public Projects
Presented by Janine CloudFTDNA Group Projects Manager
Texas two-step•This presentation
•Lunch •Break into groups to discuss
•Give feedback
My introduction to group projects started here…
A genetic condition…
Sharing is caring, right?
• Many administrators and testers are old school – i.e. pre-internet.• Shared individual research to cover more ground.• Did lookups at archives, libraries, courthouses, cemeteries.• Copied documents and mailed all over the country.
• Early days of the internet were a smorgasbord of information.• Bulletin board postings with EVERY. SINGLE. KNOWN. DETAIL!• Addresses, phone numbers, ANYTHING to get a response.• Email lists where all kinds of details shared because YOU JUST NEVER KNOW!
Then we entered the matrix…and the double-helix!
• Personal information became available all over the internet.• People can—and do—find almost any minute, even
intimate detail about almost anyone online.• Add DNA results to the mix, and it’s crazy!• The pendulum swings between
• sharing EVERYTHING.• sharing NOTHING.
Is there a happy
medium?
Group Projects MUST find one
to be successful.
Public projects = balancing act
•Group project level:•Share enough information to be useful for project goals.
•Protect privacy of individual testers.•Corporate level:
•Facilitate sharing between matches & within projects.
•Protect privacy of individual testers.
How can we do that?
•Have a robust, dynamic, privacy policy.•Have informed, dedicated project administrators.
• Demonstrate respect for all involved.
Remember, DNA is personal…
Mentions of privacy or privacy settings
• Privacy and Confidentiality Statement• Linked at the bottom of most pages of the website.• Linked at the point of purchase.
• Project Application• Linked on Projects page.
• GAP Guidelines• Located in the Learning Center.• Linked in GAP under Resources.
•Release form
Privacy concerns both within and outside of project
•Showing tester or kit manager’s full name •Identifying information (email, etc.)•MDKA•Family Tree•Raw data•Any other personal details
The drinking phrase for the day:
“Express written permission.”
By Andrew Malone - They have Guinness here?, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=47817983
Basic principles for all areas
• Never share the FULL name of the tester without express written permission.
• Never share the tester/kit manager’s email or physical address without express written permission.
• Do not download raw data without express written permission.
• DO NOT UPLOAD ANYONE’S RAW DATA TO A THIRD PARTY WITHOUT EXPRESS WRITTEN PERMISSION.
• Do not place upgrade or add-on orders on project members’ kits without express written permission.
Robust, dynamic privacy policy
Includes project participation.
Public website, personal settings
Where are the privacy settings?
Pulldown menu next to kit number
Privacy & Sharing page
Most Distant Known Ancestoraka MDKA
Who can see me in group list? (myGroups format only)
Who can view my DNA results in group projects?
Ethnic Breakdown in myOrigins
Who can access my account?
Project Application
Part 4Details! Details! Details!
Project Application Part 4• Administrators must maintain the privacy of
project members. Personal information of members should not be published on ours or any outside websites.
• Administrators may help members select the appropriate tests for their needs. However, any upgrades that an administrator purchases on behalf of a member (whether or not funds are supplied from the group or otherwise) must be done so with written consent from the customer.
Release form
Respecting the wishes and rights of the tester
•The sample ALWAYS belongs to the tester. •Ordering upgrades and add-ons •Testers/kit managers have the right to change their minds
•Just because you can, doesn’t mean you should!
Naming beneficiary critical!
Summary
• Remember the drinking term – WITH EXPLICIT WRITTEN PERMISSION
• Even if explicit written permission isn’t absolutely necessary – CYA!
• If you aren’t sure – ask before you do it. We’re happy help.• Contact your Group Projects Team with any questions.
• [email protected] – non-urgent issues• [email protected] – urgent issues
AFTER LUNCH
• On your materials you have a number – please go to that room number after lunch to participate in roundtable discussion
• There will be a feedback form in the discussion. Please be candid in your responses.
• Thank you for your attention and participation!