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Is there a right to genetic affinity with one's children?

24 April 2017

By Dr Megan Allyse

Appeared in BioNews 897

Researcher at the Mayo clinic, Minnesota.

Assisted reproduction returned to the international spotlight last month, when Singapore's highest court penalised a fertility centre that had mistakenly fertilised a woman's eggs with the wrong sperm (see BioNews 894). The woman and her husband sued for compensation equal to the cost of raising the child until the age of 21, claiming that the clinic's negligence had caused them to give birth to the 'wrong' child. While the court denied that the parents were entitled to the full cost of raising the child, they awarded damages of 30 percent of that amount as compensation for the lack of the father's 'genetic affinity' with the child.

This case presents a newer twist on 'wrongful birth' suits, which historically involve children born with significant medical conditions that might have been avoided had parents received more complete information. In 2012, a US couple received US$2.9M in damages for the cost of raising their daughter with Down's syndrome, on the basis that they would have sought an abortion if prenatal screening had revealed the condition. These cases are challenging; parents walk a fine line between professing love and acceptance of their disabled child while simultaneously arguing that they should be compensated for raising them. Anti-abortion advocates have issued scathing responses to such suits, arguing that parents are essentially asking for financial compensation for not aborting their child.

However, the Singapore case departs from precedent because the child is, by all accounts, completely healthy; she simply bears little physical resemblance to her father. The parents did not claim that they would have sought an abortion if the mistake had been revealed during pregnancy but, rather, that they deserved compensation for raising a different child than the one they intended. The court disagreed, noting that parental responsibilities are not 'capable of valuation as "loss" in any meaningful sense and cannot be the subject of a claim for damages.' This logic echoes the response of previous courts to 'wrongful life' suits in which the plaintiff is the child itself: as a matter of policy, society believes that it is better to be alive than to be dead. It also avoids the danger of implying that families that don't share genetic lineage – blended families, adoptive families, families of donor gametes – enjoy a lesser relationship than those that do.

More interesting, however, is the court's acknowledgement of a genuine loss on the parents' part—a loss of 'genetic affinity'.

'The ordinary human experience is that parents and children are bound by ties of blood … And when, as in the present case, a person has been denied this experience due to the negligence of others then she has lost something of profound significance and has suffered a serious wrong.'

While some might regard the ruling as something of a compromise position -  punishing the fertility centre for its malpractice while avoiding a claim that the child's birth was 'wrong' – the creation of a legal entitlement to 'genetic affinity' with one's children has complicated repercussions. Some observers have already decried the decision.

'Defining someone by their genotype is the most reductionist way you can look at an identity… Genetic affinity is such a superficial concept. It questions the very basis of what makes someone a parent.'

Indeed, the allocation of 'profound significance' to a hereditary relationship would seem to undermine the Court's previous assertion that the obligations of parenthood are not dependent upon genetic relatedness. 

But the decision also has considerable policy implications. Critics of increasingly sophisticated and expensive fertility treatments frequently argue that it is unnecessary, and perhaps selfish, to expend considerable resources on such treatments when there are millions of children who lack stable homes and adequate resources. From early efforts at IVF to more recent procedures like microsurgical testicular sperm extraction, individuals seeking such treatments have frequently asserted a desire for 'their own child': that is, a child to whom they are genetically related.

Nevertheless, there has been considerable debate about whether this desire for genetic relatedness rises to the level of a right. Does an individual's desire for genetically related children confer on health care providers and systems some responsibility to fulfill that desire, for example by covering the cost of infertility services? Some countries, like Israel, have decided in the affirmative. Others, like the United Kingdom, have approved the inclusion of infertility services in public health services in principle but the actual availability of such services varies considerably by region. In the United States, only 15 states have laws requiring insurance coverage for fertility services.

A precedent that loss of genetic affinity might be an actionable wrong, therefore, may have significant policy implications. If a couple wishes to undertake fertility services and cannot afford the costs, may they be said to be financially deprived of a child with whom they have genetic affinity? If public health systems do not include fertility services in their services, or worse regulate against them, could they be sued for depriving their citizens of their right to genetic children? In an era in which more extreme medical technologies – such as uterine transplantation for those with a previous hysterectomy or congenital missing uterus – may enable women to gestate their genetic children, does a right to genetic affinity also grant them the right to these resource intensive technologies? The implications suggest not only an increasing distance between the right to have a child and the ability to do so, but the potential for fraught debate over significant allocations of medical and health resources.

The Singapore case relies upon a fortunately rare set of facts that may limit its likelihood of setting a precedent, especially internationally. Nevertheless, it highlights the legal, ethical, and social dilemmas presented by reproductive technologies that are far from settled. Undoubtedly, as these technologies and their potential applications continue to evolve, they will continue to give rise to challenging questions.

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Published by the Progress Educational Trust

CROSSING FRONTIERS

Public Conference
London
8 December 2017

Speakers include

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 Andy Greenfield

Dr Anna Smajdor

Dr Henry Malter

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross

Sandy Starr


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