Re: [Gramps-users] [Gramps-devel] 2.4 and genetics ?

[<ben...@ug...>]

Serge, Duncan,

there is clearly a lot of misunderstanding about genetics. It appears to be as
much a taboo as radioactivity :-)

Ok, some facts. The french legislation is clearly not well thought out. It
throws away the baby with the bathwater so to say. Let me explain:

1/The human DNA consists for large parts of unintelligible pieces, so called
junk DNA. I can list as much of that as I want, and not know a single thing
about a human being. So storing this gives no clues whatsover about 
fitness for
a job, eye color, ....
Precisely this junk is interesting for genealogy. Mutations on genes are
normally life-threatening, the foetus will die. Only rarely will this not be
the case. Therefore, you are not able to do genealogy research with genes. You
can use them only to map migrations and relation to ancient times (saxon
migration, roman occupation, ...). The junk DNA however is not used and codes
no genes. Mutations there have no influence on the life expectancy of a 
foetus,
and are therefore common, and hence can be used to do research over 
200-500 year
periods! So it allows to tell relation between branches of families, ....
In short, storing information of this junk DNA is harmless, and DYS 
markers are
precisely that.

2/I agree there is a privacy issues however. Suppose you do DYS study with
family members who agreed to participate, and discover your cousin cannot be
related to his own father (or worse, your son to you). You have prove at that
instance of a possibly very thorny situation. So privacy is an issue, however,
you can only do research on consenting people. Putting the result of the study
in GRAMPS changes nothing to the facts you gather from the study. The
legislation should forbid minors to participate in the study or forbid the
study, not forbid writing down the results.
Due to privacy issues it might be best to make these data private, no matter
what. So NEVER put it on a website report, ... . Only specialised reports,
written CONFIDENTIAL or so at the top.
Note that writing this information now in an attribute is not exactly save or
private either, and people will do this if not a specific option is given. We
enable people to do research, we cannot force them to do it right.

2/Other software (TMG) already includes some support for genetics I read. I
cannot check them out as I do not have them, nor am I interested. So the need
must exist with users. And they are always right. The old legislation tries to
make boundaries between electronic data and paper data, which for the new
generation clearly doesn't exist. For me having it written down on a paper or
having it written down on a PC makes no difference. It is knowledge that I
store. It must be from high-school that I have written more than 3 
sentences on
a paper. Of course, giving the option to store it, does not oblige 
users in any
way to also do it, and they should off course heed the national legislation. I
am sure no american is watching dvd's on their stock linux pc's ;-)

3/Gene data. Here a more grey area is reached. We should distinguish 
between two
types of genes: the ones for disease/trait research, the ones now used to
distinguish race groups.
3.1/Let me explain race first: the romans are distinguishable from the 
german or
celt population of ancient europe, so we can distinguish 3 races. Eg, the
typical roman person has the normal lactose inhibitor gene which activates in
adulthood, meaning they cannot drink cow milk, only eat hard cheese (if you
wonder why mozeralla should be made of buffalo milk, now you know). The dutch
have no problem with lactose as the gene stopping the ability to drink milk is
no longer activated, so they drink (lots of) milk and make Gouda type of
cheese. Is it a problem to store who is lactose intolerant in GRAMPS? Because
this is essentially data of DNA, one specific gene, you have or don't 
have. See
wikipedia: http://en.wikipedia.org/wiki/Lactose_intolerance
However, a very fun indicator telling something about your ancestors 
(let me be
clear: all europeans are related to all three races, you have genes of all 3,
so you only know with this info what you already should know, all of us are
related, so from a genealogy point of view, only interesting if you can follow
the lactose intolerance up in the branch.)

3.2/disease and trait genes. With disease I mean for example Haemophilia_B
(http://en.wikipedia.org/wiki/Haemophilia_B), which is due to one gene. With
trait I would mean a gene which makes you more suscepteble to eg hearth
attacks. These a person can store in GRAMPS as an attribute, nobody is 
stopping
it, and it means you effectively store DNA data. This is not the core 
of GRAMPS,
and is less usefull for genealogy. However, it can add a touch to your 
database.
Let me explain: if you have a family member with Haemophilia_B, you can deduce
which of the ancestors is likely carrying the gene (you inherit it from your
mother who has 50% change of giving it to the children, only males are
effected), and it might shed light on why so little males are present in a
branch you are researching. This is usefull information.

Well, this post is long enough for now.
I hope I made my point that there are usefull aspects to DNA/trait 
data, and we
should not just neglect them, however DYS data and M-line data is clearly with
head and shoulders the most important for us. Users can enter DNA data already
today in notes/attributes, why not really support it. Privacy issues are
important, and GRAMPS should make sure nothing of this leaks to 
exports, is put
on non specific reports.

Benny

Quoting Duncan Lithgow <du...@li...>:

> I agree in some ways with Serge. I think many of the issues he
> mentions are real concerns for some people. So the first thing needed
> before consideration of including any kind of genetic information is
> an informed discussion of the moral/ legal and privacy issues
> invloved.
>
> I would never risk having it on my hard disk, I'm not so sure I'd risk
> having a paper copy. The privacy issue is too big for me to risk
> losing other peoples genetic data to potential identity thieves and so
> on.
>
> Duncan
>
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