International MPN News, Science & Opinion

Before boring y’all with my column for this month, I need to explain my take on 23andme …and me. I fully accept my friend Zhen’s right and acknowledge his talents and abilities to make cogent editorial decisions for the MPN internet magazine that he began and shepherds so well. That said, IMO, continued silence implies my agreement and I do not agree with the excess of early attention paid to 23andme. It seems to me that
23and me, no matter how distinguished the individuals and institutions involved might be, is a commercial company whose profit plan rests on collecting human data, both laboratory and personal, from volunteer
patients with a group of genome driven diseases, among them MPN.

The current quid pro quo for the patients is a tiny selection of their
genome offered free of charge with the hope that a better understanding
of these diseases will result. As I understand their offer, there is no
expert professional interpretation or guidance for individuals or their
families and no hands on clinical interface or medical care. I
understand that this information will be processed and sold to research
or other groups and might or might not lead to advances in the
understanding of these diseases. I don’t know if pertinent info from the
processsed data will be made available to each volunteer’s physician for
clinical care. To a degree 23andme seems much like the usual drug and
device trials.

The potential risks and benefits of volunteering your personal and
family medical history along with your DNA have been discussed, cussed,
polled and evaluated at length by our editor, his forum associates and
many readers of this magazine. There remain some questions re ethical
and scientific concerns raised by authoritative people. Some of these
questions could reflect the changes in methods and mores of 21st.C.
medical R.& D. and that some of us haven’t “got with the program” yet.
Perhaps these questions were not given equal editorial space for their
conclusions to be fully aired. However I’m not competent even to
consider if they are valid or could affect 23andme’s results. Maybe I
ought to “get with the program”.

In summary then, I believe MPNforum has gone beyond a duty to inform its
readers of 23andme’s existence. Right or wrong, I believe that this
forum has helped to give the company and its proposals premature
credibility and publicity, bordering on an endorsement that is not yet
earned. I further believe there are many other early research efforts
with as much or more potential than 23andme that haven’t been given
similar attention here. For example, reports of successful research on
altering T cells to destroy cancer cells or the emerging anuploidy
studies. However IMO, for all such early research reports, it suffices
to provide the MPN community with a reliable journal, net or other valid
source by name and/or abstract. These are only my opinions and clearly
in our editor’s province, not mine.

I’m not suggesting that 23and me should end up as ’23Skidoo’. In fact I
might sign up out of pure curiosity, if I were a patient instead of a
caretaker. BTW, how does 23 and me know that I don’t have MPN or RA or
Damfino’s disease? From my doctor? My hospital? My insurance agent? My
Medicare bureaucrat? My nosy neighbor? Or because they take my word for
it and if I lie, I’ll be charged a pretty hefty fee for the lab test
plus shipping & handling with no reduction for my worry and fear.

I reckon most MPD List members might not care, but I wonder if their
family members who share their ’46andwe’ genes want their family
genetics and past medical histories and potential futures shared with
23andme, its customers, assorted pfishermen and unknown hackers. Some
say it can’t hurt and might do some good. I guess so.

That’s my Tale ‘O Woe re 23andme and I’m stuck with it. I think it’s
reasonable. ie. it pleases nobody! I’ll gladly eat a large serving
of crow followed by humble pie if in years to come MPN is a thing of the
past owing partially to the good people at 23andme and the hopeful
thousand that only spit and wait. Just be sure to spit to leeward,

Now for my column. There’s no need to groan! By George, I’ve helped to enable the publicity, if not the praise and thanksgiving for 23andme. So much so (and so needlessly) that there’s little space left in my corner.
Oh well, its importance is over-rated. I mean my corner, of course. I so
wanted to wax importantly about making premature end of life decisions
and pretend to know what to do about all that. I have urged previous
list mates to make wills and revocable powers of attorney. I’ve also
urged them to make living wills. Now I have some reservations about
handcuffing my doctors, my caretakers, my clergy and my family at the
moment they’ve assumed will be my death.

‘ARS MORIANDI’ (the art of dying) is all well and good in its time, but
for me, maybe just not now. I mean with all the advances in medicine
nowadays, yesterday’s hopelessness is often today’s successful
resuscitation and definitive follow up therapy. I remember well when
pneumonia was “The Old Man’s Friend”, but In the words of the old song,
“It ain’t necessarily so” today. When my Hg is 2.1, my marrow full of
reticulum and my energy non-existent I still wouldn’t mind a few more
days or months, even years to see the sun also rise and watch what
happens on this ole planet. I sure wouldn’t want to usurp the Almighty’s
decision re the date and time of my demise. I don’t want to know. I’m
gonna take a look at my living will and I suggest y’all do the same.

Cheer up folks, that’s more than enough musing (ok wadding) for my
corner this month so I’ll stop and enjoy our glorious Fall turning its
corner. Be warned, I just might expand on ‘Ars Moriandi’ a bit further
next month, but at my present youthful age, I want my living will to
give me a chance to be ‘Redivivus’. (ok I looked that one up).

p.s. Any connection, implied or otherwise, between 23andme and Ars
Moriandi is purely coincidental. :)
Take me back.

© Dr. Arch and, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Dr. Arch and with appropriate and specific direction to the original content

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