Tom This is not necessary or appropriate - as Matthew has said - placenta is both! It is important that our solution allows information about another person to be in an EHR - family history is a good example. We will not link between peoples EHRs - ever in my opinion.
Cheers, Sam > -----Original Message----- > From: Thomas Beale [mailto:thomas at deepthought.com.au] > Sent: Thursday, 19 December 2002 1:43 AM > To: Sam Heard > Cc: openehr-technical at openehr.org > Subject: Re: [Fwd: RE: Subject of care] > > > > I think that the only systematic approach is to make a new EHR for each > genetically distinct individual. This means making an EHR for a foetus > as soon as anything at all is to be measured about it, and also storing > the link of this EHR to that of the mother. If the foetus dies in utero > or is aborted, then its EHR shows this properly as "death" jsut as it > would be shown in a normal person's record. As for situations where the > individual's DNA distinctness is not totally clear like the bone marro > transplant situation, I don't think that is a problem. Observations can > be made on genetically different material to the patient, in the > patient's record, as long as these observations relate to the care of > that patient. E.g. blood tests, other tests made to a sibling for the > sole purpose of doing a transplant into the patient - should probably go > into the patient's EHR... > > But I do think we need to forget the idea that because a foetus is not > really a person, it is not a possible subject of an EHR. I think we have > to work on genetic distinction and distinct organism (whether called > "human" or not) instead. > > thoughts? > > - thomas > > Sam Heard wrote: > > >Matthew > > > >Great scenario's > > > >>1. If prenatal diagnosis is being done by chorionic villus sampling > >>(CVS) in a twin pregnancy (which does happen) then it is the placenta > >>- or rather the placentas - which are sampled. Each placenta has a > >>DNA genotype matching that of the fetus attached to it (ie not the > >>mother) as the placenta is an extension of the fetus. If however the > >>fetus is an extension of the mother, then are we really saying we > >>like the idea that the placentas may have to appear as multiple > >>"temporary" organs of the mother, which are different in every > >>pregnancy, and which never share her total genotype? A likely outcome > >>would be selective termination of one twin (the affected one, on the > >>basis of a molecular finding and either a makable or a confidently > >>predictable clinical diagnosis) leaving the unaffected one to go to > >>term. Thus a part of the mother is diagnosed clinically and > >>molecularly, findings which are important for the mother later on, in > >>that they'll trigger appropriate care next time around, but which > >>*must not* be confused with her own clinical diagnoses or test > >>results. > >> > > > >This example is a very good one - it shows that there is a need to > identify > >the fetus over and above its relationship with the mother. I have > suggested > >that we use a local label for this - could be LOCAL:Twin1_2002. - the > >relationship for the information is FETUS. The important thing here is > that > >we have the idea of subject of care - a unique identifier (or self) > and the > >relationship. > > > >The sampling is the taking of a histological sample of a body part - the > >subject is the FETUS. There will be a procedure record, a sample and a > >histological report - all with the fetus as the subject of care for the > >data - in a composition that is part of the mothers EHR. It may be > copied to > >the child's EHR in the future - I have thought about the transform > required > >to do this and it should be relatively easy if the relationship > of the two > >records is stated first. > > > >>2. Bone marrow transplantation, where it may be necessary to > >>distinguish that the post-transplant patient may still have a > >>haemoglobin variant, but a different one to the one they were treated > >>for, and accordingly no disorder to go with it, but will still be > >>genetically as they were before the treatment in every other organ. > >>Also the donor was most probably selected from the same family, so > >>confidentiality may be slightly different...? > >> > > > >Interesting - who is the subject of care then? I guess this will be > deduced > >from the data - I do not think that we can say the origins of all the > states > >in a person that arise following a donation - at times it may > be ambiguous > >(graft v host). > > > >We have considered 'donor' to be the relationship - but the person may > have > >a relationship with the person apart from this? I do not think that the > >subject of care needs to be the donor then - it can be the family > member as > >it is known who they are. Interesting! > > > >>It seems to me that we can either organise our concepts to make this > >>kind of record easier and more obvious, or we can begin to inbuild > >>problems for later on (eg if the fetus is part of the mother, having > >>to explain to all our knowledge agents that this might not extend to > >>genotypes, or if it does, then by chance rather than biological > >>imperative etc...). In the event of one of two fetuses being > >>affected, and one pregnancy being terminated, what is the result in > >>the record to indicate the original number of conceptions, the fact > >>that a genetic risk actually produced a fetus with a prospective > >>problem, and the DNA and other data originated in the process of the > >>testing of the CVS sample? It would be wrong, I feel, to treat the > >>fetus' diagnosis as one of the mother, as confusion here could lead > >>to all kinds of erroneous conclusions (one fetus had sickle cell -> > >>mother - who is actually just a carrier - has sickle cell...?). > >> > > > >I do believe that we have this covered - the donor example is a bit of a > >mind bender but I think the subject of care and relationship > provides the > >solution. > > > >COmments? > > > >Cheers, Sam > >____________________________________________ > >Dr Sam Heard > >Ocean Informatics, openEHR > >Co-Chair, EHR-SIG, HL7 > >Chair EHR IT-14-2, Standards Australia > >Hon. Senior Research Fellow, UCL, London > > > >105 Rapid Creek Rd > >Rapid Creek NT 0810 > > > >Ph: +61 417 838 808 > > > >sam.heard at bigpond.com > > > >www.openEHR.org > >www.HL7.org > >__________________________________________ > > > >- > >If you have any questions about using this list, > >please send a message to d.lloyd at openehr.org > > > > > > -- > .............................................................. > Deep Thought Informatics Pty Ltd > mailto:thomas at deepthought.com.au > > openEHR - http://www.openEHR.org > Archetypes - http://www.deepthought.com.au/it/archetypes.html > Community Informatics - > http://www.deepthought.com.au/ci/rii/Output/mainTOC.html > .............................................................. > > > > > - If you have any questions about using this list, please send a message to d.lloyd at openehr.org
