By Rachel Horton, Benjamin Bell, Angela Fenwick, Anneke Lucassen
A child conceived with a donated egg has multiple health problems but no unifying diagnosis. Given that testing of biological parents may help make a genetic diagnosis in a child, is it OK to contact the child’s anonymous egg donor to ask if they would provide a DNA sample for testing? What if at the time of donation the egg donor’s consent form said they didn’t want to know if they’re found to be a carrier of a harmful inherited condition, and they didn’t want to take part in future research?
In our article, which is based on a real case, we discuss why we think it should be possible to contact the egg donor to ask if she’d consider having genetic testing. We wouldn’t want to make her have any testing if she doesn’t want to, but we think it’s reasonable to ask if she’d consider it. Currently, the Human Fertilisation and Embryology Authority says we should not be able to ask her.
Genetic testing has changed a lot over recent years and it means that there are options now that didn’t exist several years ago, and that could not have been foreseen. One powerful way to find diagnoses for children with genetic conditions is “trio” testing. This involves comparing the genetic code of a child with that of their biological parents, looking for variants (differences in the genetic code) that have happened new in the child, or variants inherited from each biological parent that have come together in the child to cause a health problem.
Egg donors are asked some questions about their own health and genetic conditions in their family, but even now, there probably wouldn’t be much discussion about whether an egg donor’s DNA sample might one day be useful for trio testing.
Given this, we think the egg donor wasn’t asked at the time of consent whether she would be willing to provide a DNA sample in the future to help find a diagnosis for a child conceived from her donated egg, and that her refusal of consent to genetic research doesn’t necessarily apply here. We argue that rather than guessing what she might think about having genetic testing based on her answers to somewhat different questions from many years ago, it makes more sense to ask her what she thinks about this now. Furthermore, why should we deny her a choice just because she has said ‘no’ as an answer to a different question?
At the same time we realise this feels a bit uncomfortable – what are consent forms for if we can’t rely on them to decide questions like this? We suggest that some of the difficulty here is because often when we think about ‘consent’ in medicine, we’re thinking about narrower decisions, like whether or not to have an operation, or whether or not to start a particular drug. For these sort of decisions, the possible implications are often easier to predict, and might happen quite soon if they’re going to happen at all (though there will be some exceptions).
In contrast, technologies like egg donation and genomic testing may open up new and unforeseen possibilities, and mean that clinicians and patients can end up in territories that weren’t mapped out at the time of initial consent. They are especially complex because decisions taken by or for one person can have consequences for several others. For example, what should we do if an egg donor says she wants no further contact, but we find out through the birth of a child, that the donor carries a genetic condition, which might not cause her any problems but which might affect her existing children, or future children? Should the egg donor’s refusal of future contact override alerting her children to their risks?
Our article discusses that for situations like egg donation or genomic testing, consent is better viewed as an ongoing conversation, where clinicians might sometimes need to go back to check things with patients, rather than guessing what they might want based on a tick-box form from years ago. For technologies with such varied and unpredictable consequences, we also think it’s unrealistic to expect consent to ‘do all the work’. Other factors will also be important, like balancing benefits and risks, and aiming to use resources responsibly and fairly. We need to consider these factors too when new options arise due to advances in technology, rather than assuming that consent, if sufficiently detailed, can answer any and every question.
Authors: Rachel Horton*, Benjamin Bell*, Angela Fenwick, Anneke Lucassen (*=joint first authors)
Affiliation: Clinical Ethics and Law at Southampton (CELS), University of Southampton
Competing interests: None.
Social media accounts of post authors:
Twitter: @rach_horton @annekeluc @Ajf3Angela @cels_uos
Website: https://whatismyresult.wordpress.com/