GENEALOGY-DNA-L Archives

Archiver > GENEALOGY-DNA > 2007-09 > 1188664778


From: "grandcross" <>
Subject: Re: [DNA] the first testing lab mentioned by Ancestry
Date: Sat, 1 Sep 2007 11:39:38 -0500
References: <200709010508.l8157sBQ006238@mail.rootsweb.com>


Dr. Janzen wrote:

> I think that there a lot of different perspectives on the issue of
> publicly sharing mtDNA results or other DNA results that may have medical
> implications. I think that people should feel free to do as they would
> like
> in this regard. I haven't had my mtDNA FGS done yet, but if I do I
> wouldn't
> have any problem posting the entire sequence on the web even if it were to
> show that I carry a mutation for Leber's Hereditary Optic Neuropathy, NARP
> (Neuropathy, Ataxia and Retinitis Pigmentosa), MELAS (Mitochondrial
> Encephalomyopathy with Lactic Acidosis and Stroke-like episodes) or some
> other syndrome known to be caused by a genetic mutation on the mtDNA.
> Fortunately, I don't have any of these conditions at this time. If I were
> to have such a mutation, revealing it publicly could be of benefit to my
> close and distant relatives in that they might learn what syndrome they
> are
> predisposed to........


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?


If they were to ever develop symptoms suggestive of that
> syndrome then it might lead to a more rapid diagnosis than would have
> occurred if they did not have that genetic information.
> Many people feel that any DNA data that has potential medical
> implications shouldn't be posted on the web. I think this all boils down
> to
> personal choice about privacy issues.....

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 was willing to have his
> entire genome posted on the web so that anyone can look to see what if any
> mutations he may carry that predispose to diseases.

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.

I think that in the
> future as more and more people have their entire genomes sequenced and
> allow
> them to be posted on the web we will see less stigma (if there is any
> stigma) about placing one's entire genome out where anyone and everyone
> can
> review it. I personally think that the more DNA data that people are
> willing to share publicly (even if it has potential medical implications)
> the faster both the genetic genealogy field and the medical genetics field
> will be able to advance.

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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