Table 2

Social workers’ accounts of genetic testing in adoption

ThemesIllustrative accounts
1. Genetic testing offers definitive and mutually exclusive outcomes
(a) A normal result means that a child does not have a genetic disorder SW: So I know she had a genetic test…
I: But what happened with that? What was the result?
SW: I think it came out fine.
I: What do you mean by fine?
SW: Well, no genetic abnormality found. So we had to sort of then look for a family who would take a child with developmental delay. (CSW05)
(b) A result offers clarity about the child’s genetic status I think, mostly, the social workers take their lead from the medical advisors. But I suppose you could be in a situation where social workers are finding it hard to find a placement for a child and feel that if they had a genetic test then it would be more clear, and some families might feel that it could be something that they could deal with. (PAS01)
(c) Genetic testing can reassure prospective adopters I think it reassured the adoptive parents (…) I think that now that the testing has taken place and that nothing was found, again that’s offered them some reassurance that, okay, you know, there isn’t a genetic reason for this, the delay. (CSW04)
2. Genetic testing can confirm or exclude a specific aetiology
(a) Genetic testing can confirm or exclude a diagnosis if there is a family history of a genetic condition I think it’s easier when you’re trying to confirm a specific thing actually, because you’re looking for a very specific issue which you can then rule out or in. (CSW03)
We tend to use it to eliminate something, like the blood condition. You know, that’s how we’ve seen them used, to eliminate a particular thing. (CSW03)
(the medical advisor) felt that (diagnostic testing) would be intrusive and that it wasn’t something that she would be pursuing or recommending. However, we did pursue it. The paediatrician saw the child and I think the foster carers were more observant and felt maybe possibly there was a slight delay with the speech. I think they were looking possibly very much under the microscope and ordinarily wouldn’t have picked up on these issues because they weren’t significant. However, the little girl was eventually tested and indeed she did have the same chromosome issue as her older sister. (CSW05)
(b) Genetic testing can confirm or
exclude a diagnosis of FASD
So it’s not a routine thing but it’s something that social workers always have in the back of their minds. And our children have regular medicals via an adoption medical or looked-after medical, so they’re starting to look now for foetal alcohol (syndrome). I think that’s becoming more possible to test for now. (SWM02)
(c) Genetic testing investigates a specific aetiology I signed consent for a genetic test a little while ago which had been court ordered (^^^) because again of the lifelong implications we are always very very careful about what we sign for, but the court had ordered it so, on that basis I have to sign for it, I have to sign consent as the corporate parent um (pause) but in terms of informed consent what I believed I was signing for was an investigation in relation to a specific condition, now what you’ve told me there that actually that could have thrown anything up, I was consenting to one investigation not an investigation of various different things, so that’s a really interesting point, that something I need to consider, because what am I actually consenting to. (SWM03)
3. Genetic testing can facilitate adoption The more information you’re able to give then the better.  And I would say that the genetic testing would fall within that bracket (CSW04)
There’s a possibility that being able to test might make it possible to find a family whereas not being able to test the uncertainty might make it very unlikely that you would find a family. (CSW02)
I: So as the family finder, if the test had been done it would have helped the—
SW: It would have helped me. I feel so, definitely. I know a lot of people don’t agree with that and geneticists usually don’t, but for me I’ve found it’s much better to know than not know.
I: Right, even if the tests were positive that the child has a difficulty?
SW: Yeah.
I: That still makes it easier to place?
SW: Yes, definitely. (CSW05)
I don’t know if this is a possibility but I suppose if you’re looking at routinely genetically testing every child where there weren’t any issues or concerns it could disadvantage them, couldn’t it? If they are revealing things that you perhaps wouldn’t have worried about before. But I think for children where there are already concerns there, then I think having a diagnosis can only help them really. (CSW06)
  • FASD, fetal alcohol spectrum disorder; SW, social worker.