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Donor children do not benefit from being told about their conception

15 May 2017

By Professor Guido Pennings

Appeared in BioNews 900

For some years now, counsellors and psychologists have been spreading the message that it's in the best interest of children to know if they are donor conceived. However, my recent literature review has shown that there is in fact very little empirical evidence to support this position (Pennings, 2017).

The review looked at three lines of evidence: information on children who were not told, a comparison between children who were or were not told, and information on children who had been told at varying ages.

The first line of information, mainly based on research from the first part of this century, showed that children who do not know about their donor conception function normally and do not show signs of psychological problems.

The second line of information, based on the five studies that compared children who had been told with those who had not, found no significant differences in child well-being (Ilioi et al, 2016).

The final line made a distinction on the time of telling: those who were informed early compared to those informed late. The general conclusion from the studies on offspring who were told in their preschool years is that they are fine. In contrast, studies on some persons who were told late state they developed severe psychological problems. The evidence on late disclosure should be interpreted with caution, however, since these studies are all based on biased samples; most respondents are recruited from donor offspring support groups and/or are self-selected (Turner & Coyle, 2000). Moreover, the few studies that specifically compared children who had been told early with those who had been told late could find no, or only small differences. So the frequently stated claim that it is better to tell early is not corroborated by empirical evidence.

The argument by counsellors can be summarised as follows: neutral or positive consequences when told early, and possible psychological harm when told late. The balance then tips towards early disclosure. However, this conclusion is not correct for at least two reasons. First, non-disclosure is not included in the comparison but may still be the most preferable option. The idea that early disclosure is completely unproblematic is also not true. In one study, 37 percent of the offspring who were told during childhood felt confused and 27 percent were shocked (Jadva et al, 2009). That was a lower percentage than in those who were informed later but clearly worse than in those who are not told at all. Second, given the biased samples in the group told in adulthood, we actually have no clue about the percentage of offspring who are told late and do not have an issue with it.

It is a pity that researchers are missing the opportunity of looking more closely at some of the general theoretical rules underlying much of their attitude. One such rule is that secrets are bad for family functioning and for the child. The fact that the studies performed in the donor conception context have not found evidence of such harm has not made anyone question this assumption. A search for explanations of these discrepancies might actually improve the theory and move the field forward.  

A question that presents itself after this review is how did counsellors and psychologists come to hold these beliefs? An indication can be found in the fact that a number of them present recommendations that deviate from their own findings. Some authors of the studies explicitly state that no differences were found, and yet conclude that it is better for children to be told. It seems rather obvious that such a conclusion cannot follow from that finding alone. One possible explanation is that the conclusion is not based on scientific evidence but on implicit moral premises such as ‘children should be told the truth’ or ‘children have a right to know their genetic origin’. There is nothing wrong with holding these beliefs as such, but they should not be packaged as scientific facts about the psychological well-being of offspring.

When these beliefs are expressed and pushed upon people during counselling, this is an outright violation of the non-directiveness rule that stipulates that the moral values and views of the patients (parents and would-be parents) must be respected. It seems that evidence-based counselling is either no longer an ideal or that we still have a long way to go.

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

26 June 2017 - by Dr Kylie Baldwin 
New technologies, procedures, and developments in reproductive science such as egg freezing, mitochondrial donation and genome editing have occupied many column inches, as well as much public and academic discussion in recent years. However, the topic of gamete donation remains an area of interest and continued site of controversy...
05 June 2017 - by Professor Vardit Ravitsky, Dr Juliet Guichon, Marie-Eve Lemoine, and Professor Michelle Giroux 
In his commentary, Professor Guido Pennings argues there is no empirical evidence to support the assumption that it is in the best interests of children to know that they are donor conceived. We would like to add another layer to the critique, by focusing on the conceptual foundation underlying the right of donor-conceived people to know their genetic origins...
30 May 2017 - by Professor Eric Blyth, Dr Marilyn Crawshaw, Iolanda Rodino, and Dr Petra Thorn 
Professor Guido Pennings' provocatively entitled BioNews commentary 'Donor children do not benefit from being told about their conception' purports to highlight the shortcomings of existing research supporting a pro-disclosure agenda and castigates counsellors and researchers who advocate parental disclosure...

HAVE YOUR SAY
This is research on undisclosed subjects and it is unethical (SDK - Updated on 15/05/2017)
How can you study the effect of something that a person *does not know*?

If you had been raped, but did not remember it, how would I be able to study the effect of that action on you?  

Would observation and polite conversation a few times per year be enough?  Perhaps a survey?  Should I measure the size of your head?  Your height?  Ask about your relationships?  How would I know if you had a funny feeling that made no sense?  How would I know if you suspected something was wrong?  Especially if I never asked?

Once you remembered or were told, how exactly would you feel about the people who had observed you, knowing but not telling you this truth about your life, for years and years?

How would you feel reading about yourself in academic papers?

How would you feel if I knew you had 2 months to live, right now, but I didn't tell you?   What if I not only didn't tell you but wrote academic papers about you?  

What if the person who doesn't tell not only lies and not only gives you over to scientists to study and not only publishes about you without your knowledge ... what if that person is your mother or father?  The person who should love you, protect you, and teach you right from wrong?

How would you feel if you discovered that your mother or father had conspired with others to lie to you about something very significant -- for your entire life?

The cafe was perfectly calm before that bomb exploded.  We even did a study on it!

We know from adoption that this is not something parents should be allowed to lie about.

It is not necessary to repeat that experiment again and again.  The experiment has been run.  We know it causes harm.  

All research on this subject with undisclosed "children" (many of them now adolescents and adults)
continued from above ... (SDK - Updated on 15/05/2017)
This research causes harm.  It is unethical.  It is wrong.  

These children / adolescents / adults deserve to know the truth and they deserve to be told the truth by their parents.  

Instead they will find out through a commercially available DNA test, from a cousin, by reading about themselves in this very study online or on a deathbed.  

It is wrong, wrong, wrong.  THIS RESEARCH IS IMMORAL.

The subjects in this study know the name of the institute and the name of the PI.  The idea that they still do not know the nature of this research would be laughable if it wasn't so incredibly sad.

If it were up to me and every other donor-conceived person I have spoken with, the PIs for these studies would be banned from all funding, if they were not brought up on charges.

Remember -- when you are sued for emotional harm in the future by one of your subjects -- you were warned.
Bioethics Professors (SDK - Updated on 15/05/2017)
I've always felt that the entire purpose of Bioethics as a field of study is to remove ethics so that scientists can do whatever they want to do with biology.

I'm afraid Dr. Pennings does nothing to counter that observation.  If he's not able to listen to the people who are most affected by a particular technology, then I cannot have much respect for his ethics.  

We have no need for you to speak for us, Dr. Pennings.  We can speak for ourselves.
DNA = Donors Not Anonymous (ml66uk - Updated on 15/05/2017)
There seems to be an underlying assumption that if children aren't told they're donor-conceived, they won't find out.  This simply isn't the case, and people find out all the time, whether their parents tell them or not.  The rise of genealogical and medical DNA testing means it's going to happen far more often in future.

The second study cited says this:
"The earlier children born through reproductive donation are told about their biological origins, the more positive are the outcomes in terms of the quality of family relationships and psychological wellbeing at adolescence."

This suggests that it may not be a good idea for a young adult to find out their dad or mum isn't their genetic parent when they were using DNA to research their family tree.

Only one of the four sources seems to have a working link btw.
You're not comparing like for like (krissf - Updated on 16/05/2017)
In saying that some donor-conceived children are distressed when they're told about their origins, you appear to be comparing this outcome with an alternative, of them never knowing and living in blissful ignorance.

This alternative doesn't exist. The choice is between telling them early and, given the high chance that they will find out due to the prevalence of social genetic testing, the potentially outcome of them finding out in circumstances where their parents are not there to explain or support them.

I know which option I think is kinder and more pragmatic.
Ignorant, irresponsible, and poor science. (Andromedary - Updated on 17/05/2017)

I am outraged that this has been given any merit at all. It would be an embarrassment to even the most mediocre scientist.
It also plays into the hands of the thousands of parents who have decided not to tell, for their own, selfish, personal reasons regardless of the future mental health of their children if/when they find out.
Even if one discounted all other arguments regarding the poor quality of  the "research" and a rather subjective conclusion, there is no guarantee, in this day and age, that anybody can 'never know,' and this is the prime reason for telling.
This is crazy! (nicks - Updated on 19/05/2017)
Of course they don't have psychological concerns, as long as they don't find out...  But in reality how likely are they to get all the way through their life without knowing, and then what will the issues be at that point?  It's just a ridiculous comparison.  

It's like a risk assessment, you can have a higher likelihood of causing a low impact, manageable issue, or you can have a lower likelihood of causing a catastrophic impact issue.  I know which I would choose any day...  

My 8 year old twins are fully aware of the situation around their conception, and although I am sure we will have issues (especially as it was overseas, and hence anonymous), I am confident we can deal with them, and I am not living in any kind of fear about what the future holds on this score, rather than living with the potential for a complete family meltdown and loss of trust!  

It is already part of day to day conversation in our house, and they are understanding more and more about it's impact every day (only yesterday I was told that they will find a school trip to Kew Gardens boring because although I may like plants and flowers, I get that from Granny, whereas they inherit things from their donors and they are pretty sure that their egg donor didn't like gardening and thought flowers were boring!)  A silly conversation maybe, but shows a level of understanding and an ease with which they discuss it already.  

Sorry, but I think the comparison you are making is absolute rubbish!
Comment (DebbieK - Updated on 22/05/2017)
The author seems to be blissfully unaware of the impact of genetic testing and its ability to uncover family secrets. He might like to have a read of the article I co-wrote for Human Reproduction in April 2016 on "The end of donor anonymity":

https://academic.oup.com/humrep/article/31/6/1135/1749791/The-end-of-donor-anonymity-how-genetic-testing-is

At that time I estimated that over three million people had had their DNA tested. Since then the market has grown at an astonishing rate and over seven million people have now tested. Unknown parentage cases are being solved on a daily basis through matches in the DNA databases with close cousins which enables the researcher to do descendancy research to identify the parents. Many people have tested and found half-siblings and even biological parents in the consumer databases or they have discovered through DNA testing that they are not who they thought they were.

See also this recent editorial by CeCe Moore in the Journal of Genetic Genealogy:

http://jogg.info/pages/vol8/editorial/moore/moore-history.html
Pennings is Wrong: Donor Conceived People Do Need to be Told (oliviam1 - Updated on 22/05/2017)
My personal view:  This is not an official view of DC Network

https://oliviasview.wordpress.com/2017/05/18/pennings-is-wrong-telling-is-in-the-best-interests-of-donor-conceived-children/
Comment (Infinite - Updated on 25/08/2017)
I am donor conceived and was lied to and I am speaking from experience.  I found out on my own at age 35 and the problem is not me finding out!!  The problem is all the years I spent not knowing my most basic truths!!!!

This article and it's assumptions are unconscionable!  While the "ignorance is bliss" argument may work for people who choose to live ignorant--what about people who choose to live to the upmost of their consciousness and intuitions?  They sense this horrible lie and spend their life swinging at ghosts in the dark not knowing what they are fighting!  Because their most vital history of how they came into the world has been erased as if it never happened!!

Aside from the first comment with the analogy of someone who'd been raped unconsciously--most commenters are missing the point.  

The problem is not that one day they will find out!  The problem is manipulation, lies, erased history, confusion over identity, subconscious confusion, and other underlying but very pertinent issues!

Saying, "eventually they will find out even if you keep it a secret" totally misses the point.

You can abuse someone without them knowing and this is almost even a worse kind of abuse--this is actually manipulation.

This seriously underestimates
Comment (Infinite - Updated on 25/08/2017)
(Picking up from previous post)

...this seriously underestimates a persons intuition and subconscious minds.  Are we animals?  Is all we need in life food clothing and shelter and we will be happy?  Well send a kid to his room,give the kid an iPad and let him be entertained and it will be as if his parents fighting and screaming downstairs doesn't exist!  Just feed us and entertain us!!

So much for who we are and how we came into the world.  We are cattle!!

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Published by the Progress Educational Trust

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Professor Robin Lovell-Badge

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Professor Guido Pennings

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Professor Richard Anderson

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