Genetic make-up is only one possible distinctive feature. We all know that even in human health care we can encounter twins, triples, etc that were cloned in a test tube and implanted in utero of a woman.
What sets them aside? I fear it is the administrative name that they receive in the end after a delivery. Until then 'who knows who' in the womb of a pregnant woman? We must accept that we treat things without a name but with a more or less distinctive context or other features than an administrative name. Gerard etOn 2002-12-18 17:13, "Thomas Beale" <thomas at deepthought.com.au> wrote: > > 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 >> >> -- <private> -- Gerard Freriks, arts Huigsloterdijk 378 2158 LR Buitenkaag The Netherlands +31 252 544896 +31 654 792800 - If you have any questions about using this list, please send a message to d.lloyd at openehr.org
