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Re: [walesdna] Privacy - Anonymity - Ethical Use of Genetic Genealogy Data

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  • jerry williams
    I think enough has been said for this. After all it s only DNA some may think it s going to change the world ...but it s not. So if you want to play the game
    Message 1 of 6 , Feb 11, 2012
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      I think enough has been said for this. After all it's only DNA some may think it's going to change the world ...but it's not. So if you want to play the game of DNA then good if not then ho-humm.
      Really the Queen will not invite you to the palace if you have a DNA code close to her. So...everyone work together and those that won't work with everyone else can take a hike.

      On Sat, Feb 11, 2012 at 2:54 PM, Susan Rosine <basenji_luvr@...> wrote:

      Gentlemen, especially George, News flash for you. The Y-DNA STR and SNP results that are made public (or did not make public) are not unique to you! They are shared by hundreds, if not thousands, of other men. And if you have sons, they have the same Y-DNA. So it is not personal, private information. Every human sheds their DNA wherever they go. Hardly private.
      What is private? In the USA, if your name, address and phone # are in a phone book, it's not private. But, if you combine that information with your birth date, your SSN, and your mother's maiden name, then that's private. Information needed to open a credit account is private. That's why banks have to protect your account information. A person can steal your identity by knowing your birth date, your mother's maiden name, etc., and start opening accounts in your name. They cannot open a credit card in your name by submitting "Joe Smith, kit # 123, SNP 371 STR 67 markers". A criminal has NO interest in your Y-DNA. NONE. Genealogists have an interest. Hardly a scary bunch of people, those genealogists, IMHO.
      Can you be convicted of a crime based just on your Y-DNA public markers? NO. If you're worried about that, I suggest you not commit a crime in the first place anyway.
      Can I tell that you're dying of a disease, or that you're a selfish jerk by looking at your STR and or SNP results? NO
      Can I tell what you look like? NO
      Can I determine your address, your phone number, your SSN, your favorite tv show, your credit card accounts by looking at your results? NO
      It's all a bit silly. Those who don't share are cutting off their nose to spite their face.
      Why even test if you're not going to share? Oh, I know why. Because you can not share, but yet see the results of everyone who does share. Those are probably the exact same people who don't do any real research on their family, but take all the research done by others, and made public, and use it for their own, without ever giving anything back in return.
      George, think of the info you've given just by posting. Your name, your email address, the fact that you have a Y-DNA Welsh ancestor, the fact that you match someone with the surname Griffith, and the fact that you seem to consider yourself an expert on SNP L371, which likely means you're positive for it. What do you think we will all do with that information? We're not all out to get you, or make money of your non-unique set of results, or take over your identity, or haul you off to jail as a common criminal, or announce to the world whatever medical conditions you might have.
      Don't write a will, ignore the census taker, don't buy property, don't announce your kid's birth or your wedding in the paper. Don't list yourself in the phone book. Don't post online. It all will become public info, now or later. May I suggest living alone in a cave on a deserted island? :-)

      Sent from my Verizon Wireless BlackBerry

      From: "Brian P. Swann" <bps@...>
      Date: Sat, 11 Feb 2012 19:07:30 -0000
      Subject: RE: [walesdna] Privacy - Anonymity - Ethical Use of Genetic Genealogy Data


      Dear All


      Let me add a few words – as I actually put a submission together to the Human Genetics Commission in the UK on behalf of ISOGG in 2010.


      At that time the Human Genetics Commission was the body which advised the UK Government if additional legislation was required in any area involving DNA analysis.  So it had a very wide remit, and we were concerned that DNA testing for ancestry research would get swept up in legislation to cover other areas of DNA testing.


      That Quango was abolished by the new Conservative government, but at the end of 2010 an excellent Report on Personalised Medicine was issued by the Nuffield Council on Bioethics.  Subsequently the former Chairman of the HGC has become Chairman of the Nuffield Council on Bioethics.


      So I see both sides of the discussion here – and I think this debate will run and run.  The ancestry debate is really a small segment of a much wider debate as what do we do with whole genome information on people as that becomes available, and who should have control of that and with what associated responsibilities.


      I personally think all of the issues related to identity theft, etc. are over-hyped.  These are theoretical risks – and there may be a very clever family historian who can do this.  But we can do that already.  You look at all those trees on Ancestry with folk just identified as “Living” – quite often you can determine who they are, sometimes paying a small amount of money is necessary.  Whether we like it or not – we leave electronic footprints we go these days.  There is a big debate in America right now as to what will happen with the SSDI.


      The Nuffield Council of Bioethics was very strong in its recommendations respecting the freedom of an individual to choose what to do with his/her personal information (including DNA testing and test results, for whatever purpose) – and whether to receive personal information on themselves should usually over-ride other people’s wish to filter or interpret or commission that testing for them.


      You already have GINA in the USA – and there will be a huge furore if insurance companies begin to discriminate against folk based on their genetic signatures with no evidence of a disease.  A more pressing insurance problem in the UK is the number of households that will be unable to get flood protection insurance in 2013, based on revised flood risk maps.


      But the identity theft stuff makes for nice headlines if you package it up nicely and sell the story on to the news media.  They can raise all the questions – usually with not many answers.


      I have said elsewhere that I think the personal genomics stuff relating to the autosomal chromosomes may become as big as Rowe vs Wade.  And I think it may take a generation – but 30 years from now we will wonder what all the fuss was about.  This is the way that science advances when we don’t know too much about what the end result is going to be.


      I am not going to discuss FTDNA’s privacy policy – but they have given it quite a lot of thought.  I don’t want administrators’ tasks and systems to become any more complex  - they are complex enough now.


      Otherwise you cover all theoretical risks – but no-one is left who wants to make the time and bureaucracy commitments necessary to comply.




      From: walesdna@yahoogroups.com [mailto:walesdna@yahoogroups.com] On Behalf Of George
      Sent: 11 February 2012 17:37
      To: walesdna@yahoogroups.com
      Subject: [walesdna] Privacy - Anonymity - Ethical Use of Genetic Genealogy Data



      I will graciously try to answer your inquiry.

      Also, I hope you and others can look at the bigger issue at FTDNA - Group Admins - Participants concerning the Privacy - Anonymity - Ethical Use of Genetic Genealogy Data including Surnames, Ancestral Locations, Etc.

      I think both Industry Guidelines & Federal Guidelines are needed in this area. FTDNA is very lax in this area ... in particular Max at FTDNA and a small percentage of FTDNA Group Admins. Now that persons can import their 23andme data to FTDNA ... I have added concerns.

      There are persons like Mike W and others on this list and other lists that believe the wholesale scraping / harvesting of FTDNA data into their Hobbyists GG Databases is A-OK ... I disagree.

      Once a person has makes their Ht - Hg - etc. data Public at FTDNA and Mike W ... he considers it his forever. Even though that participant at FTDNA (for whatever reason) has later made their Ht data Private. Mike W and FTDNA do not have a system to police this and provide privacy safeguards... do they?

      With the right Genetic Genealogy information, some persons with the right skills and sinister motives are capable of cross referencing it to a person's SS#, Tel#, Physical Address, Race, Financial Information, Medical Information (23andme and other databases) and more. Scary ... I think so. Could it lead to Identity Theft, Insurance Red Lining, Financial Credit Red Lining, Ruling out a Marriage Partner, Employment Red Ling ... yes!

      I have graciously helped the R-L21 community in doing SNP tests to assist in ISOGG placements. Would you agree to that? But now, that I have elected to make my data Private at FTDNA ... you and certain members in the hardcore Genetic Genealogy community want to ostracize me like you attempt to do in your post below.

      So Susan, I have a major issue with persons who cannot reasonably appreciate or understand another persons viewpoints. I am not in any way asking you or others to agree with my viewpoints ... but perhaps to reflect a little more about them ... is that reasonable?

      I am all for "giving" and "assisting" and "sharing" with others ... and I have in this Genetic Genealogy endeavor and other endeavors to the extent I have founded several charitable organizations and graciously serve on the boards of other ones.

      All the best,


      George, you have made it quite clear that you want YOUR info to be private, yet you seem to have no problem dispensing advice to those who have graciously made all their DNA results public. I have a major issue with this, and perhaps others on this list do as well, since some of them are admins for other projects from which you've withdrawn your results. Do you think it's a bit odd that you are able to take advantage of everyone else's results, while not sharing your own? If none of us shared, we wouldn't know anything about anything now, would we? Susan

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