DNA TESTING & YOUR PRIVACY
Some of the below questions were asked by a person with an academic background in genetics and several of the answers are based on correspondence with Bennett Greenspan, President of FTDNA. Mr. Greenspan welcomes questions by email or telephone, especially from professionals in the field. Address, FAX, and telephone information are at the FTDNA site.
Their policy is available at their website (see also their FAQ section): http://www.familytreedna.com/
2. Can the 25 markers being tested identify inherited susceptibility to disease?
FTDNA has only the means to test for Y and mtDNA, not the other 22 chromosomes. FTDNA has a service contract with University of Arizona's Anthropology lab to do the testing; this is not a medical research laboratory. FTDNA maintains four people in this endeavor at this time.
3. How do we know FTDNA is a reliable company?
FTDNA's advisory board includes reputable scientists in the field. The majority of the known surname projects are using this company and are happy with the results.
4. How can we be sure they are only genotyping the Y and not the rest of the genome for other purposes?
This is new field for researchers and it is understandable that people are wary. Have you asked this same question of your doctors, HMO, hospital, associated medical labs, the blood bank - any entity that may have a sample of your body tissue, blood, etc.? Take steps to assure yourself that FTDNA is reputable. To learn more, use the various links here in my DNA section.
5. Who owns the genotype?
The sample belongs to the customer.
6. Is the data being used for other purposes as well, like population surveys of the U.S.?
No, not unless you sign up to be a study participant, which FTDNA is NOT offering to people on a general basis.
7. If I participate in the group project, how is my privacy protected when results are reported on a public website?
Although some project websites do report full names, your full name is not made public in our project. Your personal identity will not be revealed to anyone unless you give permission to do so. Since the purpose of the project is to further genealogical research, you are encouraged to identify yourself to facilitate open exchange of information (e.g., on message boards) but only you can make the decision to reveal your identity.