Two years ago, the European Union (EU) instituted the General Data Protection and Rights (GDPR) that goes into effect 24 May 2018. About six months before that, notice started to get taken by genetic genealogy industry as to the potentially wide ranging effect it has on the match databases and results used in the community. We and others had advocated more limited sharing to protect the rights of testers and living individuals and their immediate families. Others were more forcefully advocating openness in both genealogy and genetic results to facilitate discovery by distant users.

The Fallen

The Obituaries

ySearch

Privacy issues were first a big issue when many discovered the http://semargl.me/ website See the post Data Mining and Screen Scraping. This led to a temporary shutdown of ySearch at the time and many to realize that most groups on FTDNA were too open with their results pages. (Even today, most FTDNA groups display results pages of members surnames, their kit numbers and the actual test results. While not also disclosing the testers full name, it can often be quickly derived as well. Personally, in our opinion, this is an issue with FTDNA and group management and not "screen scrapers" who are doing nothing illegal or necessarily improper. If you make it public on the internet (i.e. published), you have no further rights to privacy. ySearch had been severely crippled since that screen scrape and its return to the web. FTDNA simply decided to kill it off once and for all instead of work to repair it.

WikiTree

While WikiTree on its own survives as a one-tree site, most of its pervasive DNA capture has been )temporarily) shut down. As well as some of its geneology openness. In our opinion, this is a good thing. Even though we protected results pages from the public (available to group members only), we found non-testers joining our groups, scraping the data, and re=posting on WikiTree. They often would figure out the testers name, if not known, and determine their ancestral lines. Adding the tester, the DNA results, the identifying kit ID's, and such to open records on WikiTree that anyone in the public could see. Once this violation of privacy was pointed out, the most that would happen is the living testers record would be marked private. But their (often living) parents and the the DNA identifying information would continue to be propagated to other places. The biggest, immediate change made by WikiTree was to immediately hide all living individual records. Then to prevent disclosure and propagation of DNA results from any individual records other than a registered user with an account. Thus attempting to prevent disclosure of scraped or unauthorized data posted by someone else. (The assumption is if you have an account, you are creating records, and you identify yourself in the tree with the account — a requirement — that you have authorized your records to be there and propagate. Does not prevent someone from creating an account for a tester that they add the information for though.) They have since backed off and relaxed some features and disclosure. They are still encouraging identifying kit numbers be attached to propagated DNA records from third-party added living tester records though. So they recovered from their initial injuries but too far for our liking.

GDPR

In Our Opinion
It is important to realize that other regulations likely have stronger implications than GDPR. Like HIPPA in the USA. GDPR is not specific to DNA and medical records but a general regulation about personal data collection, access, disclosure and control. Why this is making more of an impact is because so many believe in open sharing of genealogy records and resources and have historically been simply lumping DNA testing and its results in with that. But especially when it comes to genetic genealogy testing and its results, 99.9% of the time involving living individuals and their privacy, the same rules cannot apply. We cannot be so open and sharing. We have to be more protective of others information. At minimum, due to health / medical regulations that cover such information. Sadly, most have not taken this view.

External Resources