This presentation discusses balancing personal privacy and sharing within DNA group projects. It notes that while early genetic genealogists shared extensive personal details, the rise of the internet requires a more nuanced approach. The presentation recommends that group project administrators: [1] have a robust privacy policy that respects testers' sharing preferences; [2] obtain express written permission before sharing full names, contact details, or making purchases/upgrades on others' accounts; and [3] demonstrate respect for all individuals involved. Administrators are asked to help testers select appropriate tests for research goals while respecting testers' rights over their own samples and privacy settings.

1. Personal Privacy in Public
Projects
Presented by Janine Cloud
FTDNA Group Projects Manager

2. Texas two-step
•This presentation
•Lunch
•Break into groups to discuss
•Give feedback

3. My introduction to group projects
started here…

4. A genetic condition…

5. 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!

6. 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.

7. Is there a
happy
medium?
Group Projects
MUST find one
to be successful.

8. 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.

9. How can we do that?
•Have a robust, dynamic, privacy policy.
•Have informed, dedicated project
administrators.
• Demonstrate respect for all involved.

10. Remember, DNA is personal…

11. 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

12. 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

13. 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

14. 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.

15. Robust, dynamic privacy policy

16. Includes
project
participation.

17. Public website, personal settings

18. Where are the privacy settings?

19. Pulldown menu next to kit
number

20. Privacy & Sharing page

21. Most Distant Known Ancestor
aka MDKA

22. Who can see me in group list?
(myGroups format only)

23. Who can view my DNA results in
group projects?

24. Ethnic Breakdown in myOrigins

25. Who can access my account?

26. Project
Application
Part 4
Details!
Details!
Details!

27. 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.

28. Release form

29. 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!

30. Naming beneficiary critical!

31. 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.
• Groups@familytreedna.com – non-urgent issues
• Groups@ftdna.com – urgent issues

32. 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!