Regulation for connection…US and UK style

I’ve just been dipping into Naomi Cahn’s book The New Kinship: Constructing Donor Conceived Families.  Naomi is a professor of law at George Washington Law School so she writes about the topic from an American perspective, but her propositions are far-sighted and universal.  She proposes a system of regulation, in a country where there is currently no federal legislation whatsoever with regard to donor conception, based on  “A normative vision of promoting affective ties, fairness and other public goods associated with respect for the dignity of donor-conceived families” as opposed to “A normative vision associated with protecting patient autonomy, privacy and the domesticated family”.  Such a system would recognise the links between families created via donor conception.  She writes, “Even under a system of full disclosure, there certainly remains  a critical distinction between “parenting” a child and contributing gametes to the creation of the child.  The parents have strong rights to make their own decisions concerning the care, custody and control of their children.  Gamete providers, having sold genetic material to create the child, are not, of course the parents, and thus (in the absence of an agreement otherwise) do not have enforceable rights in courts. (Consequently, donor-conceived children are not in the same position as children of divorce with various parents able to go into court to fight about visitation).  Allowing information disclosure to adult offspring values parental rights to raise children as they see fit while the children are minors, but respects the “children’s” rights once they are mature”.

Cahn identifies the most important change that needs to take place is a paradigm shift towards donor conceived families; “they must take their place in the jurisprudence of family and constitutional law, not solely in the administrative jurisprudence of technology, health and safety regulation. They have been medicalised rather than humanised.  ….Future regulation must develop from the perspective of family law, which focuses on the interests of all involved as individuals, rather than as patients or producers or products.  This grounding provides a more coherent and cohesive justification for moving toward recognition of these new relationships.”  America, are you ready for this?

Inevitably perhaps, the HFEA is held up as a model for regulation.  And all the principles enshrined in the HFE Act are of course right…a registry where all information relating to the stakeholder triangle is held; access to parts of that information depending on when conception took place and being able to prove that you have a legitimate interest in it.  But recognition of the inevitable connection between the families of donor and recipient or between families with children conceived from the same donor?  I don’t think so.  And certainly no imperative to foster connections between these families as Cahn believes benevolent legislation should allow.  In fact the HFEA set out to prevent connections being made between donors and recipients by not allowing clinics to give out donor numbers to either party.  There was a problem with the same numbers being used by different clinics but this was sorted out by giving a unique HFEA reference code to each donor.  This code could  have been revealed to recipients and donors alike but defensive legal advice labelling these figures as ‘identifying information’, led to a ban on clinics giving the numbers out.  What was really going on was that donors and recipients were finding each other on the internet, usually by mutual consent, and the HFEA was terrified that if comparison of donor numbers formed part of this connection they could be sued for revealing the donor’s identity.  As it is, potentially life-enhancing links between siblings and families are being prevented by a bureaucracy that does the very opposite of foster connections.   There is a down as well as an upside to regulation.

Meanwhile there is a move to set up a completely separate registry for those in the donor conception world in the UK who wish to make connections and families continue to find each other or at least attempt to do so.  I am currently involved as an intermediary  between an egg recipient and her donor whom she identified on the forum of the clinic they both attended.  Also party to very tentative and thoughtful steps being taken by a donor conceived adult to get her donor to respond to her.  This is the future.  Is the HFEA ready for it?

The New Kinship: Constructing Donor-Conceived Families by Naomi Cahn and published by New York University Press 2013

 

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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5 Responses to Regulation for connection…US and UK style

  1. Liz says:

    Cahn’s book sounds interesting. After reading this review, I wondered if Cahn addressed two issues about legal structures in the United States:

    Family law is conducted on a state-by-state basis in the States. Adoption and divorce laws are all seen as the province of the individual states to regulate and determine. I don’t see how a federal structure such as HFEA would be accepted into the American legal structure without a fundamental restructuring of the legal system. The states may be restricted from passing laws that violate Constitutional rights, but the USA is not based on a system of positive rights mandated by the federal government.

    Related to that first point is something I have been musing about. Why have certain countries, such as the UK, Australia, and Canada, passed laws in regards to ART that the most socially conservative states in the USA will not attempt? (ie- Mississippi, Alabama, Tennessee, Georgia, Louisiana?) Certainly there is a large contingent of religiously evangelical and conservative Catholics who believe that the killing of an embryo is a mortal sin,and ART is socially immoral in those states. These states have not attempted to restrict the use of ART to heterosexual married couples — why is that? Considering the the politics of those states, one might have expected legislators to have attempted these restrictions. I have been wondering if there exists a popular understanding of the absolute right to conception (and privacy about that conception) which may be dominant in the USA, but not in the Commonwealth countries.

    To muse a bit further on this — I wonder if there is a difference in how the English-speaking commonwealth countries view the right to abortions/conception versus the United States. I am not familiar enough with the history of Australia, the UK, and Canada in relation to issues such as abortion and contraception, but I suspect there may be a critical difference between how the USA, both Constitutionally and popularly, views the right to privacy in the realm of childbirth/conception/abortion and that of the British Commonwealth countries. Abortion and contraception is not figured as a right of medical necessity, but as a right to create, or not to create, a family. “If the right of privacy means anything, it is the right of the individual, married or single, to be free from unwarranted governmental intrusion into matters so fundamentally affecting a person as the decision whether to bear or beget a child.” _Eisenstadt v. Baird_, 405 U.S. 438 (1972). The laws that were passed in Australia and the UK regarding ART may have been constitutionally challenged in the USA on the basis of these privacy rights and the 14th Amendment. This may underline a interesting difference in legal cultures, both in terms of popular conceptions of rights and in the Constitutional histories of the various countries.

    • oliviasview says:

      I am neither a lawyer nor an historian and I hope very much that Naomi Cahn will respond to some of your points Liz. However, I do feel there is something fundamentally different between the US and the English speaking Commonwealth countries. None of us (in the latter countries) take religion very seriously just for a start…or at least if we do have a religious affiliation it is unobtrusive and private. Despite schools being secular, God seems to enter every aspect of American life, both personal and public…including, extraordinarily, the ‘right’ to bear arms. More people attend church, but also there are more people in prison and more underage pregnancies in the US than anywhere else in the world. Certainly for the British, America is the country we love to hate and vice versa. We, sort of, speak the same language but we so often mean very different things.

      • Liz says:

        Thank you for your comment. On a light note, I disagree that Americans love to hate the UK, although I understand that the reverse may be true. Americans have great affection for the British, and London is a destination that many wish to visit. The birth of the royal baby received saturation news coverage in the U.S. 🙂

        A quick comment on Canada and the current ART laws which occurred recently and were not able to be included in the book. The Olivia Pratten case has recently been overturned and the Supreme Court has refused to hear the case (May 2013).

        “Last fall, the B.C. Court of Appeal overturned the lower court’s decision, ruling there is no constitutional right to know the identity of one’s parents.
        Pratten asked the Supreme Court of Canada to intervene, but on Thursday, the high court said it would not hear the case. As usual, the court did not provide its reasons for refusing to hear the appeal.”

        Read more: http://www.ctvnews.ca/canada/top-court-won-t-hear-case-of-woman-seeking-info-about-sperm-donor-dad-1.1303506#ixzz2knT1uHfH

        Further encouraging the use of anonymity — it is illegal to sell eggs in Canada. One may be punished by 10 years in prison for doing so. To put this in perspective, this threatened punishment is more severe then the punishment for many violent offences in Canada. Considering Canada’s tradition of light prison sentences in comparison with the U.S., the severe punishment for purchasing eggs is notable. One women has recently been charged under the act.

        But the purchase of anonymous eggs via U.S. egg banks has been declared legal in Canada under Health Canada regulations.
        “The AHR Act does not prohibit:
        Buying sperm or eggs from a person other than the donor provided the person is not acting on behalf of the donor;”
        http://www.hc-sc.gc.ca/dhp-mps/brgtherap/legislation/reprod/purchasing-achat-eng.php

        Therefore, Canadian fertility clinics may legally purchase anonymous eggs from U.S. clinics.

        The consequence of these various legal regulations is that it is both easier and safer to purchase anonymous imported U.S. donor eggs from a Canadian clinic then to search for a known Canadian donor. Placing an advertisement is illegal. Offering to purchase eggs is illegal. It is confusing if it is legal to reimburse for expenses (what expenses are permitted is unclear.) Clinics are legally barred from matching clients to donors and clinics are wary of discussing ways of finding a known donor in Canada because of the threatened punishments. Those who match may be prosecuted.

        The threatened punishment of Canada’s Assisted Reproduction Act is nothing to mess with, and the current and confused legalities are encouraging the use of anonymous eggs.

  2. ellenglazer says:

    As always, I appreciated and enjoyed your thought provoking and “spunky” comments from across the pond. It was interesting to hear some of the experiences and lessons learned from the HFEA.
    I have read Professor Cahn’s book, which I found fascinating and helpful in so many many ways. Thanks to both of you for speaking in strong, clear, effective voices. You have added–and continue to add– so much to all our understanding of donor conceived families. I especially appreciate the ways in which you are helping all of us begin to identify and make sense of the new forms of kinship forged by donor conception.

    • oliviasview says:

      Thanks Ellen. Always good to hear from you. You’re a pretty good advocate yourself for openness and acknowledging the importance of connections between genetically linked families.

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