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From:
Subject: Re: [DNA] novice SMGF question
Date: Fri, 7 Apr 2006 13:03:35 EDT


Diana, I gather you had not read my message of 4/6, in which I briefly
discussed both the optimal search strategy and the constraints that SMGF operates
under. I'll expand on the latter a bit more here.

SMGF is a research project, focusing on autosomal markers. This merits an
extra layer of protection and privacy, and SMGF follows guidelines set forth by
the Western Institutional Review Board for human subjects. The motivation for
this is to reassure participants that SMGF is operating in a respectable
manner. They even had to get approval from the WIRB for the current discount coupon,
offered to people who volunteer to participate in the project. This seems
overly legalistic to me, but I suppose the rationale is that monetary inducements
might persuade people to participate against their own best interests. That's
the same reasoning applied to egg donors, BTW.

I've been a research subject in many different types of studies at Stanford,
and I'm always amazed at the consent forms. Sometimes I get personal results
(four eggs a day did not raise my cholesterol, and I responded to a 1/10
dilution of smallpox vaccine) and sometimes I don't (they won't tell me if my sense
of smell or my memory is normal for my age!). I participate because I'm
interested in furthering the research goals.

The searchable Y-chromosome database was originally constrained to searching
for close matches to your personal results, obtained from another outside
source. This was similar to FTDNA's policy -- you can only see results for people
who match you closely (and give their consent, of course).

SMGF is perfectly aware that some people are interested in "data mining," not
just looking for a personal match, and they do try to balance the two
objectives, always keeping in mind their original promise of privacy. It was only
last summer that SMGF was able to add searching by surname. The constraints are a
matter of approval from the WIRB, not programming skills.

You mentioned that people could upload their own results from SMGF to
YSearch. I think that's a fine idea (in fact, I've done so), and it would provide
contact information, too. Of course, Ysearch doesn't have the quality control
that the internal FTDNA or SMGF databases have, but it still serves a useful
purpose.

Ann Turner


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