Big Y Questionnaire

[paxton09]

Who developed this questionnaire? What's NCBI?......This questionnaire is very amateurish and can't imagine anyone who will complete it as it stands, including me.

[lgmayka]

NCBI is the National Center for Biotechnology Information.

Frankly, I see nothing wrong with the survey. It is not "amateurish" but simple--customers are unlikely to fill out a more complicated survey.

[dtvmcdonald]

Who developed this questionnaire? What's NCBI?......This questionnaire is very amateurish and can't imagine anyone who will complete it as it stands, including me.

It would be nice to know what you are talking about
(the questionnaire).

[Snickering_Homin]

On MYFTDNA pages of Big Y participants, there is a Big Y Survey box. They want to use Big Y data and send it to http://www.ncbi.nlm.nih.gov/

I declined.

[Ann Turner]

I would wholeheartedly encourage participation. It makes FTDNA's proprietary results accessible to researchers all over the world.

The concept is parallel to full mitochondrial sequence data. Individuals who have given consent for Doron Behar's research or who have uploaded their data on a voluntary basis form a substantial portion of the GenBank mtDNA database. My own mtDNA sequence was used by outside researchers to define haplogroup H24a.

Yet FTDNA is sitting on an even larger amount of data because individuals have not participated in the GenBank database, probably because they're not even aware of the possibility and the benefits.

[wkauffman]

mtDNA

Will the mtDNA results be extracted out and be available for submission?

[John McCoy]

I don't see any reason to participate until there is a clear statement of exactly what information they propose to store, how it will be used, what identifying information will be included, etc. Even on the NCBI site itself, I don't see any of the disclosures, disclaimers, privacy assurances, etc. that I expect to see for any organization that deals with personal information, especially human genetic data.

[paxton09]

The Big Y Questionnaire to my mind is primarily a consent. It is only inferred that it is FTDNA that we are giving consent to. I looked up NCBI, but that should not have been necessary. I believe the document be reworked somewhat.
I support research, but I agree with J McCoy's comments. I suspect there are many commercial entities trolling for data and we need to be cautious. In fact, I sense that FTDNA is trying to raise the bar in terms of data protection

[vinnie]

Since yDNA analysis cannot be used for medical purposes, the information will be used for anthropological purposes with implied genealogical consequences.

I submitted my mtDNA (which can have medical implications) to Genbank years ago, and my bank account is still in tact, my health records haven't been hacked, and no one's busted the front door down searching for my matches.

[JohnG]

NCBI is the National Center for Biotechnology Information.

Frankly, I see nothing wrong with the survey. It is not "amateurish" but simple--customers are unlikely to fill out a more complicated survey.

This seems to me one of the main benefits of doing the Big Y test. NCBI has the main database of SNPs. This puts my results in a place where scientists can study them and learn things that will help answer my questions. I use the SNP database now to look up some of the SNPs found in my various tests. The survey info is basic but if you look at the SNP database at NCBI you see they do some geographic origins breakdown of SNPs. I submitted my MtDNA sequence to a similar database years ago.

[PNGarrison]

I don't see any reason to participate until there is a clear statement of exactly what information they propose to store, how it will be used, what identifying information will be included, etc. Even on the NCBI site itself, I don't see any of the disclosures, disclaimers, privacy assurances, etc. that I expect to see for any organization that deals with personal information, especially human genetic data.

NCBI data doesn't include any personal identification. There is just an arbitrary code number. If you don't give them any trait info, they won't have any. A very few people whose genomes have been sequenced have chosen to identify themselves. NCBI is the main repository in the U.S. for DNA sequence info for scientific uses, including medical research.

[Ann Turner]

NCBI data doesn't include any personal identification. There is just an arbitrary code number. If you don't give them any trait info, they won't have any. A very few people whose genomes have been sequenced have chosen to identify themselves. NCBI is the main repository in the U.S. for DNA sequence info for scientific uses, including medical research.

This does raise a question about which NCBI database is the intended depository.

http://www.ncbi.nlm.nih.gov/guide/dna-rna/

As far as I can tell, GenBank (sequence data) does not currently have Y sequence data from individuals as they do for mtDNA.

Another possibility would be dbSNP, which would result in obtaining rs numbers for variants.

Or maybe SRA (Sequence Read Archive)?

[John McCoy]

So, where does that leave us? Instead of a "survey" that appears to be a sort of uninformed consent form in disguise, I would like to see a clear statement of what is being proposed: what specific data elements are to be submitted, to what database, by whom, the specific purposes for doing so, and any appropriate disclaimers, informed consent, etc.

[Peter MacDonald]

I was surprised to see that the Big Y "Survey" did not ask any feedback with regard to any thing to do with the Big Y test itself (i.e. Process, satisfaction with results, etc).

I have to say that I was quite shocked to see that the survey is basically a permission request for FTDNA to release my Big Y results to an outside party, with no prior notification or any sort of summarized description of what exactly the data will be used for and/or may be used for in the future.

[morrisondna]

My sentiments as well. This irrevocable permission form being called a survey gave me the impression of being misled.