Table 3

Medical advisors’ accounts of genetic testing in adoption

ThemesIllustrative statement(s)
1. Genetic testing is neither definitive nor deterministic
(a) A ‘normal’ result does not necessarily exclude a genetic disorder And that’s the way that we do explain it is that we all have something or there may be something in all of us that we don’t have any idea what it means at this point in time but in the future there may be more information. And I think it’s trying to explain that, you know, genetics is moving so fast isn’t it that what we have one day is not necessarily, you know, what is normal one day might not be normal the next. (MA04)
(b) A ‘positive’ result does not necessarily confirm a genetic disorder I think you’ve got to be very careful about testing children just because we can. I think you have to think carefully about what a positive result would mean, and I think you mentioned the fact that you can see phenotypic variability. So even if we test a very young child because we can, based upon  a family history, and we find a positive result, in terms of then predicting what this is going to mean for the child, I think that’s extremely difficult. (MA02)
Yes I have had one (VUSs) where I have got the results the day before panel, the adopters knew it was coming but it was something that was unknown significance and all I did was ask the panel if I could have time to talk to them before they came into panel to explain that to them. And it is like anybody else, you know, it’s sort of saying that there is this, we don’t know what it means, nobody knows what it means at this point of time, it may mean something or nothing. (MA04)
(c) Adopters and social workers have unrealistic expectations of genetic testing And that’s the other thing that we do tell them (social workers) is when we are doing these (tests) is that, you know, we might be looking for something and we pick up something completely different (…) And what all of that means is very difficult and I think they think it’s much more simple. (MA04)
So these are the two (cases of genetic testing) where the social worker wanted (it) because (for) some unknown reason, in their head, they’re thinking if all the boxes are ticked that they can get an adopter. And my question is an adopter should accept the unknown. When you have a birth child, you will accept the unknown and so is the unknown because we can’t give answers for all the questions. (MA03)
But I think there is this expectation that we can sort of give adopters as much, and rightly so, as much information as we can. But sometimes that is about, yes there is this risk and trying to quantify that risk and to help them to learn to live with that risk rather than saying, yes it is or no it’s not and I think that’s the difficult thing. (MA04)
I think a lot of the local authority members and a lot of adoption panel members felt that the children in this family should be tested because if they were tested negative it would all be fine. And what they couldn’t quite understand was, yes but if they are tested and positive the implication for that child and that child has now the choice of knowing has been taken away from them and it’s sometimes difficult for lay people to understand why we do or we don’t do things. (MA04)
2. Genetic testing is inappropriate:
(a) if the child is unaffected but there is a family history of genetic risk I have dealt with a few issues in (place) where the father had said he had Noonan syndrome and the child didn’t have any evidence. And the child did not have and the social worker wanted this child to be tested genetically and I didn’t think it was appropriate so I dug my heel in. I said, tell me what you going to do with that? The child does not have any symptoms and why should I do it? (…) The solicitor spoke to me and I said look there is no signs, there’s no evidence of cardiac problem, any other problem. She might have learning difficulties but the mother and father has learning difficulties and for me, just tell me where the father’s diagnosis was made. (MA03)
One (case) I can think of is where there has been a family history of Charcot-Marie-Tooth where there has been huge pressure from the local authority to undertake genetic testing and we are, it’s felt, and in discussion with genetics, it’s not appropriate to do so because the child themselves have got no symptoms. There is nothing we are going to do about it, we aren’t going to treat anything at this point in time, and that the testing should be done at a later date if it is necessary. (MA04)
(b) to confirm or exclude a diagnosis of FASD We’re having requests for children to be tested for conditions. For example, recently, I’ve heard that guardian was pushing for an expert assessment of a child, who she felt needed to be tested for foetal alcohol syndrome, which clearly—well there is no clinical investigation that’s going to give us than answer. Obviously, there is an examination we can do, there’s a history we can consider, but I had seen that child for an adoption medical and it was clear to me that that child didn’t have foetal alcohol syndrome. Whether there might be foetal alcohol effects further down the line, that’s another factor if there were concerns about the mum drinking, but there was certainly nothing that I saw that would warrant any further assessment but the guardian had pushed for, this child needs a test. (MA02)
That is what I heard, somebody was saying that one particular judge was demanding genetic testing for foetal alcohol syndrome. Not here, I didn’t have it. (…) one of the doctors did mention that they were asked to do a genetic test for foetal alcohol syndrome and that was demanded by the judge. So we were discussing about educating the judges and then somebody said they had the difficult group to educate. (Laughs) (MA03)
I couldn’t quite quantify it exactly but a lot of these cases we will do them on are babies where their mums have been drinking during pregnancy and they have got dysmorphic features and we are looking to exclude other courses other than foetal alcohol, and that’s a big one for us. (…) we are trying to exclude other causes of the dysmorphic features and therefore because, you know, at this point in time we can’t diagnose foetal alcohol syndrome directly it’s let’s exclude everything else, so that is the reasoning behind it. (MA04)
3. Genetic testing can complicate or hinder adoption I think it’s quite a challenge for them (social workers) to understand then the pros and the cons of genetic testing because clearly their thought is around finding an adoptive placement for a child and doing what they can to facilitate that, and that might be a thought that well if we arrange genetic testing, particularly if a test result is negative, well that might be helpful in terms of then a child finding adopters. I guess the flip side of that is well what happens if the test result is positive? Might that make it more difficult, and who is this test for? Is this a test for the adopters or is this a test for the child? (MA02)
  • FASD, fetal alcohol spectrum disorder.