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Preimplantation Genetic Diagnosis: The Who, the What, the Why and the How


 

The conceptual foundation of the right to know one's genetic origins

05 June 2017

By Professor Vardit Ravitsky, Dr Juliet Guichon, Marie-Eve Lemoine, and Professor Michelle Giroux

Appeared in BioNews 903

In his commentary titled Donor children do not benefit from being told about their conception, 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. In their excellent recent reply, Blyth et al refute this claim by demonstrating that such evidence does exist (2,3,4), and by pointing to the various oversights and methodological weaknesses of Professor Pennings' arguments (as also expressed in their letter to Human Reproduction, co-signed by 39 experts) (2). We support all their arguments and would like to add another layer to the critique, by focusing not on the empirical evidence in hand, but rather on the conceptual foundation underlying the right of donor-conceived people to know their genetic origins (hereafter 'right to know').

The heated debate surrounding the right to know is based on two distinct ethical theories. The first is consequentialist. An act can be right or wrong depending on its consequences, so only by empirically assessing and demonstrating harm can we judge the ethically appropriate course of action for donor conceived people.

The second is deontological. An act can be right or wrong regardless of its consequences. Knowing one's genetic origins is considered a human right that donor conceived people should have, regardless of empirical evidence.

As argued extensively elsewhere (6,7,8,9), the deontological framework grounds the right to know in respect for people's autonomy. Violating it deprives donor-conceived people of the liberty to choose what meaning they assign to the genetic components of their identity and relationships, a choice experienced and taken for granted by most others in society. The deontological framework does not claim that all or most donor-conceived people will necessarily find their genetic origins of great importance, but rather that they are entitled to make that determination for themselves.

Professor Pennings' 'first line of information' stems from a consequentialist view. It is based on research that showed 'children who do not know about their donor conception function normally and do not show signs of psychological problems'. But this research outcome does not determine whether a person ought to have a right to know. It is inappropriate to consider empirical evidence gleaned from those who do not know, because their right has already been violated. We do not know what they would have wanted, or whether they would have been harmed if they knew.

Research should assess what is in their best interest by considering, for example, the circumstances of disclosure (e.g. at what age, in what context, using what language); their post-disclosure needs over the years (e.g. no needs whatsoever, medical information, information about the donor's personality); and the psycho-social outcomes of those who have access to the information they desire and those who do not. But it makes no sense to base the assessment of ‘best interest’ on outcomes of those who are unaware of what they don't know.

The deontological framework assumes that people can be wronged without being harmed. To cite Baroness Lady Warnock: 'I cannot argue that children who are told of their origins (…) are necessarily happier, or better off in any way that can be estimated. But I do believe that if they are not told, they are being wrongly treated' (10). Dr Mhairi Cowden goes a step further and associates this 'wrongful treatment' with deception, claiming that 'truth telling is a form of respectful behaviour' and thus 'deception of this nature constitutes a wrong in that it violates the respect owed to that child' (1).  

Let us consider an analogy: a person never tells their spouse that they were previously married to someone else (let's assume that this first marriage ended amicably and there were no children). As a result, the current husband or wife has no 'signs of psychological problems' regarding their partner's previous marriage. But would it make sense to say that this 'bottom-line outcome' is a reasonable measure to use when deciding if the current partner is entitled to know?

Indeed, different people would react differently to discovering this information. For some, it might have no importance at all and therefore no impact. For others, the news might have various meanings. But arguably, a person entering a marital relationship has the right to know something that is relevant to this fundamental relationship. Only once they know, can the partner assign meaning to it, and know what impact – if any – it would have on their identity, relationship, or couple dynamics. The partner may wish to know the identity of the first spouse or not, know more about their history or not.

The outcomes are irrelevant - not being told at all constitutes deception, a violation of their trust and the respect to which they are entitled (interestingly, it even provides legal justification for annulment). Now assume that the information in question is related not only to a partner's life history, but to your own, and to the ongoing relationship with your parents.

Professor Pennings argues that in the absence of empirical evidence, counsellors and psychologists are pushing their 'beliefs' upon people. But the term 'beliefs' is misguided, because it connotes a position that is not based on rational justifications. Those who acknowledge the right to know, including governments through legislation and professional societies through clinical guidelines, do so based on solid deontological grounds, not based on mere 'beliefs'.

The right to know is based on people's fundamental interest in having access to information that may be crucial to their identity, relationships and health – an interest well-recognised in adoption law. The debate about the nature of existing empirical evidence is not the only factor regarding the right to know. In fact, requiring arguments to be limited to empirical research findings alone (5) is harmful in itself, when they are then used to justify practice and policy. Respect for persons is central in ethics and requires clinics and governments to make it possible for people to know the truth about their origins.

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

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...
15 May 2017 - by Professor Guido Pennings 
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...

HAVE YOUR SAY
Comment (New Verb8m - Updated on 05/06/2017)
Of course, this issuie - the right to know - comes back to haunt us because as a society we have not confronted the abuse of closed stranger adoption. In that context, when you tell a child they are adopted (or donor conceived) and then do not provide any further information - or at best sketchy information - (your mother/donor was a nurse/ a writer or whatever) you set the scene for an exquisite form of torture. To know, but not be deemed worthy of really knowing. To be denied the basic 'who am I' building blocks that others - the commissioning parents or adopters take for granted.  

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