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Genomics and donor conception

Paul Serhal
I think the issue of anonymity is a very important one. Patients felt that if they went to go for sperm donation or egg donation, it was not right not to tell the child if he or she wanted to trace their biological origin. And I think based on this basic concept of freedom of information and being very open, a lot of our families now are keen to have the option to tell the children that, if you wish to trace the donor you have the facility to do so.
And I have to say we are rather privileged in the UK that this is enshrined by law because in many countries this is still secretive and I think we have demystified all those by having rules that at least help people who are keen to trace their origin. I think this is a basic human right and it is very much appreciated by patients, because one of the major hurdles of sperm donation and egg donation in the past is that children could not trace their donor and that was very frustrating, mainly, from the children’s point of view.
The importance of having this legislation that was enacted in 2005, to be open with the children, the question is that would be the case pre-2005 where there has been total anonymity? This is going to give some ethical problems. More so when parents have not informed their children. Of course, you know, you could argue that if you had the evidence from your medical record that the families have decided to be open with their children, it would facilitate our task, that the problematic one. And this is the biggest kind of ethical point, that when there is and they are not children anymore, by then they are 25+, what do you tell them?
You can’t break the news to someone that, ‘Oh, by the way, you know, your dad is not your biological father’. That by itself can be quite detrimental, mentally let alone emotionally, to someone of this age, plus of course the medical issue. I think, again, you know, this goes to show that the HFEA have been ahead of the game in pre-empting all these points and I think we should be proud to have a body of this nature that has pre-empted all these issues and facilitated the ground, so that we avoid problematic ethical issues. The HFEA has set an example for other countries to follow suit.
Openness is of paramount importance because it protects the parents, it protects the children, and more importantly it gives them the option of knowing of any problem that could surface. I will give you a simple example, if you have donated sperm and if, for whatever reason, a resulting child happened to have renal failure you could argue that is it the right of the child to trace the biological parent and tell him or her, by-the-by I have renal failure, would you be kind of enough to consider HLA typing so you could be a match and potentially a donor. You see, where do you draw the line?

One way in which biology is important is when it impacts on health. And assisted conception using donor gametes presents a unique challenge in this regard.

With donor conception, the child receives half their DNA from the donor. This means that there is a biological link between the donor and the donor-conceived child, which can sometimes lead to ethical dilemmas.

Consider for example, the case of a sperm donor who has six offspring. Several years after donating, he undergoes genetic testing and finds out that he has a genetic condition that might be passed on through his genes.

Many fertility clinics now arrange for genetic testing of donors. Yet the number of conditions that can be tested for increases every year, and many more people are now accessing such tests.

What should a donor do in this case? One option is to contact the fertility clinic and ask them to inform the recipient parents that their child might be at risk of a genetic condition.

Yet what is the responsibility of the fertility clinic when parents haven’t told the child that they are donor-conceived? And what is the responsibility of the fertility clinic towards that child when they become an adult?

Information can of course also be passed on in the opposite direction, if a donor-conceived child finds out about their DNA and then contacts either the donor or the fertility clinic.

Most at-home genetic test kits also include biological ancestry analysis, meaning that a person who never knew they were donor-conceived might discover that their biological family is different than they thought it was by using such tests.

In fact, there have now been many cases where donor-conceived adults found their biological parent via direct-to-consumer testing, which is now readily available in many countries.

For an in-depth review of the problems that genomics pose for anonymous donor conception, please take a look at a recent editorial in the journal Human Reproduction which can be found at the bottom of this step.

For your discussion: What do you think? Should a clinic tell parents of a donor-conceived child if the donor informs them of a hereditary condition? And what is the clinic’s responsibility towards the child, in the event that the parents haven’t disclosed to the child that they are donor-conceived?

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