GENEALOGY-DNA-L Archives

Archiver > GENEALOGY-DNA > 2007-09 > 1188673744


From: "Tim Janzen" <>
Subject: Re: [DNA] the first testing lab mentioned by Ancestry
Date: Sat, 1 Sep 2007 12:09:04 -0700
In-Reply-To: <002e01c7ecb6$b08aadf0$6501a8c0@SILVA>


Dear Beth,
I could certainly notify my first, second, and third degree
relatives about a mtDNA mutation that predisposes to a medical syndrome, but
there is no way that I could inform all my more distant relatives who share
the same (or very similar) mtDNA sequence that I do about such a mutation.
Sharing such information publicly is the only way that distant relatives
could potentially learn about such a mutation.
I believe that James Watson is simply the first person in what will
eventually be a large number of people to make their entire genomes public.
The Personal Genome Project (see http://arep.med.harvard.edu/PGP/) has
already chosen 10 people to have their entire genomes sequenced (see
http://www.thegeneticgenealogist.com/2007/07/30/the-personal-genome-projects
-first-10/ and http://en.wikipedia.org/wiki/Personal_Genome_Project). Those
genomes will eventually be made public. I read recently that this project
hopes to eventually sequence as many as 100,000 or more complete genomes.
I personally think that this project (and other similar projects)
will eventually be of significant benefit to medicine and to genetic
genealogy. My personal feeling is that the risks of publicly sharing DNA
data that has medical implications are overstated. None of the five "risks"
mentioned on the Personal Genome Project web site give me all that much
concern. There may be other risks not listed here. In any case, I don't
want you or anyone else to feel that you need to publicly release DNA data
that has potential medical implications unless you want to do so. If I were
to share my DNA data publicly I certainly don't believe that this would in
any way reduce my "dignity" or the dignity of any people closely or
distantly related to me. After all, none of us is personally responsible
for our own DNA data. We simply inherited it.
Sincerely,
Tim


-----Original Message-----
From:
[mailto:] On Behalf Of grandcross
Sent: Saturday, September 01, 2007 9:40 AM
To:
Subject: Re: [DNA] the first testing lab mentioned by Ancestry


Beth wrote:

That's fine, but is making this information public the only way to alert
relatives about a potentially serious genetic mutation? Couldn't you do that

by private contact?


It may boil down to your personal choice about your privacy, but it also
implicates the privacy of others who share your genetic signature. If
instead of a DNA test you underwent a blood analysis that revealed the
potential for future illness, would you also post that information on the
internet or would you simply call or otherwise contact your relatives if it
appeared likely they were equally at risk?

James Watson may be a brilliant scientist, but I'm not sure he is the best
person to emulate when it comes to the propriety of revealing personal
medical data online.

You are certainly free to express this opinion. I tend to agree so I hope
you're right. From my perspective, however, the issue here is greater than
personal choice. Those who freely publish information of this character
without taking into account the sensibilities and ehical considerations of
others who are, or even may be, affected by that action risk crossing a line

that is deserving of much greater introspection than "I" personally
think..... What about their view, their privacy, and in some sense, their
dignity?


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