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Report Review: Donor information sharing - Preservation of personal liberty or the indirect control over people's private lives?

29 April 2013

By Antony Blackburn-Starza

Appeared in BioNews 702

In its latest contribution to practical bioethics and policymaking, the Nuffield Council on Bioethics in its report on information sharing in donor conception recommends, among other things, that parents of donor-conceived children should not be mandated to inform them about their origins. It does, however, state that openness and transparency are positive values to be supported.

The recommendation was rightly not made for media headlines nor was it overtly ground-breaking - nor did it appease all those who advocate for the rights of donor-conceived people to know their origins, who have charged the report with not going far enough. The report's conclusions come across as measured and well thought through, and thankfully not a byproduct of compromise but of positive deliberation.

In a similar vein to what I have written about other Nuffield Council reports (see BioNews 630), the greatest potential impact of this report may be at the grassroots of bioethical thinking and policymaking in this area. Keeping within the same ethical deliberations as adopted with its previous definitions of solidarity and altruism, the report represents an attempt to generate bioethical debate and channel new ways of thinking to establish, in this case, a new discourse of relational interests and an ethos of openness and transparency.

In its understanding of social cohesion in the 'family' life as consisting not of simply of individual family members but of kinship networks - how people know themselves to be related to each other - the report is able to neatly capture the reality of interpersonal relations as involving sets of reciprocal responsibilities. It avoids the challenges of presenting individual rights-based arguments of the donor-conceived versus others, which often end in an uncomfortable compromise or one trumping the other. It instead establishes one coherent framework for the determination of issues regarding donor information that is responsive to the unique social arrangements created by donor-conception.

In my view the Council's greatest contribution here is - and has been lately - to explicitly adopt a means of deliberation that demonstrates ethical consistency first and foremost above practical outcomes. Its policy recommendations are therefore ethically defensible and coherently orchestrated according to principle.

However, I have some misgivings about the characterisation of interests in the private sphere as relational and as being mutually constructed by, rather than against, other people's interests. The presumption that people operate as social beings and possess social interests that are capable of being construed through a collective lens can detract from the importance of individual liberty and leave people exposed to the control of others. Unless it causes harm, behaviour should not be influenced directly or indirectly by other people's perceptions of correctness.

Although the report is at pains to make clear that parents should not be mandated to disclose (partly on basis to preserve parental autonomy but partly also because of legal issues that would arise and other factors), behind the ostensible veil of non-interference there resides a lurking possibility that individual liberty could potentially be undermined through the implicit idea of encouraging parents to tell - or the creation of an environment where is it considered 'positive' for parents to tell.

In the absence of clear evidence pointing to harm, the idea that it is a positive thing for parents to disclose personal and sensitive information - or indeed should be encouraged to do anything - is concerning. If not managed properly, in some situations it could effectively amount to a form of paternalism that infringes the parent's right to be sole decision maker about their child's upbringing. It can arguably make people the unwitting agents of overarching policy considerations determined at a state level that seek to implement modes of behaviour through indirect and non-coercive methods.

I do not find the evidence cited by the report to be entirely persuasive - in part because of the acknowledged lack of information in regard to the effect of non-disclosure to donor-conceived people.  I also find statistical or large scale qualitative studies unrepresentative of the true nature of harm which is often subjectively determined by each unique set of facts. The evidence, as it is, may then not justify measures that seek to promote particular modes of conduct even in the most non-coercive manner.

Looking forward, the potential challenge to personal individual liberty - in this case, for parents to determine what is best for their children - means that manner in which information is made available to parents and is managed is of crucial importance. Parents should be 'supported' in such a way as to preserve the decision making ability of parents - whether this is achievable in principle may be a concern.

SOURCES & REFERENCES

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

08 July 2013 - by Antony Blackburn-Starza 
Families are complicated and no two are the same. It is often said that assisted reproductive technologies (ART) challenge traditional family models. But what has received less attention to date is how these 'new families' navigate a complex thicket of social, legal and policy norms...
20 May 2013 - by Olivia Montuschi 
In addressing egg-donation dad-to-be Ben Saer's points in his BioNews article, it is hard to know where to start. Good parenting is of course supportive and protective, but it does not resolve the desire of some people to know more about who helped create them...

29 April 2013 - by Professor Carol Smart 
From my point of view as a sociologist carrying out research in this field, the Nuffield Council on Bioethics report on donor conception is to be welcomed as a scholarly and balanced contribution to current debates...
29 April 2013 - by Professor Eric Blyth 
Donor-conceived individuals might justifiably feel short-changed by the Nuffield Council on Bioethics' report 'Donor conception: ethical aspects of information sharing'...
22 April 2013 - by Antony Blackburn-Starza 
The Nuffield Council on Bioethics has recommended that parents of donor-conceived children are best placed to tell them about their biological origins, but should not be mandated to do so...
22 April 2013 - by Dr Wybo Dondorp 
The Nuffield Council report rightly rejects the call to pressurising parents into compliance, as this abstract ideal of openness disallows them to make their own moral judgements about what is best in their situation and for their family...

HAVE YOUR SAY
Comment (BioVisitor - Updated on 23/05/2013)
Everyone forgets about reality.  The donor can promise to stay away from the children they create for 18 years but that won't stop their parents from contacting them or their siblings and nieces and nephews from contacting them.  Most people care if they have grandchildren or cousins in the world and many actively seek out contact with their lost relatives to bring them into the family despite the irresponsible actions of the relative that is the estranged parent.  The need or desire for information about family members is not a one way street with the donor's offspring holding exclusive rights to knowledge about them; the basis of the need from a medical standpoint is the same for every member of the family.  None of them should be put in the position of not knowing who they are and are not related to, how can they avoid dating them?  The choice not to commit incest has been taken away from every member of the donors family including the donor.  The donor and the person who chose to reproduce with them made a foolish concious decision to risk potential incest by reproducing with one another sight unseen and as such put their offspring at risk.  That was unfair of them but then they could limit their reign of terror to just themselves and their kid but don't they instead are so selfish as to subject all the donors relatives to being helpless to prevent incestuous contact for generations into the future all for what?  what purpose does it serve?  Who benefits from blinding an entire family like that?  

The right to keep information private should not extend to information that is pertinent to the lives of other people.  If the infomation we want to withhold prevents someone else from making informed decisions about their health and who they do and don't want to reproduce with then its not our information to conceal it belongs to everyone impacted by it.  That is why members of families are allowed copies of the birth marriage and death certificates of their kin without the permission of their kin.  It is one way the government helps people to arm themselves with information to keep themselves and their kids healthy.  

People raising other people's kids have this fantasy that parents get to conceal information from their kids and keep their kids concealed from their relatives but we don't.  If I don't like my sister and don't want her to know I had a baby there is nothing I can do to stop her from going and finding out by getting a copy of my baby's birth record from the vital statistics office.  And if her kids want to introduce themselves to my kids a school explaining that they are their cousins I could not sue anyone and the police would not arrest anyone.  If I don't want my sister around at christmas dinner the cops will not stand vigil at my door to protect my child from meeting her unless they agree she is a danger and I file a restraining order.  

So believe the people raising donor offspring have purchased some special right to lie and make the child act out an elaborate charade for their benefit if you want but there is no right to control what the child finds ut or what other people do.  Even the estranged parent who donated would not be breaking the law to send a birthday card.  I reunite families and breach those little imaginary boundaries all the time for the good of brining back together what someone tried really hard to destroy.  But you can't destroy it - its there and real no matter how deeply burried it may be or how many years it may lie dormant  All someone has to do is say that they are the real parent and the jig is up and the family can interact if they want.   Sorry there just is no control over what others do.

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Published by the Progress Educational Trust

CROSSING FRONTIERS

Moving the Boundaries of Human Reproduction

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8 December 2017

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Professor Azim Surani

Professor Magdalena Zernicka-Goetz

Professor Robin Lovell-Badge

Sally Cheshire

Professor Guido Pennings

Katherine Littler

Professor Allan Pacey

Dr Sue Avery

Professor Richard Anderson

Dr Elizabeth Garner

Dr Jacques Cohen

Dr Anna Smajdor

Dr Andy Greenfield

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross


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